tag:blogger.com,1999:blog-71027268026293226862024-03-12T23:17:49.332-07:00Baby GAPSAdventures in doing the GAPS diet with a nursing toddlerAnniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.comBlogger96125tag:blogger.com,1999:blog-7102726802629322686.post-71944344423843122452015-03-24T14:52:00.001-07:002015-03-24T14:55:58.894-07:00Walk out that doorOne of the most challenging things about motherhood for me is that there are no breaks. There’s no day off, there’s no vacation - in fact vacation can often feel like a more difficult version of daily life as schedules get disrupted, planning for our food can get tricky and everybody’s running low on sleep. No one gives mothers permission to take a break. There’s no national program where every mom gets three hours of free babysitting every week so she can get her hair cut or go to her OBGYN alone or take a damn nap. This basically exists in France and I wish I could unread <i>Bringing up Bebe</i> so I didn’t have to know that French mothers get to go shopping or go to the gym solo on the government’s dime. <br />
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I think that even if I had had run-of-the-mill children, I would have sucked pretty bad at taking breaks from motherhood. But I had Ellie and she’s been hard. I have felt for a very long time like I’m the only person in the world who can care for her. There have been many times when I’ve tried to relax and let go for a couple of hours, and her caregiver ends up feeding her the wrong foods and I return to a little girl with a tummy ache. It just didn’t feel worth it. So for a very long time, I didn’t take breaks.<br />
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After I had our second child, August, I felt completely overwhelmed all over again with the demands of a newborn, another colicky baby. I figured out pretty quickly what to eat and what not to eat to keep him comfortable, but again buried myself under the overwhelming responsibility that I was the only one who could care for him. August seemed to have food allergies but it was hard to pinpoint what he was reacting to. Finally, well into his second year, we discovered he was allergic to peanuts. That scared me. Peanut allergies are not to be messed with. I didn’t feel comfortable leaving him alone and so I did it very rarely. Perhaps every new mama goes through this phase with each new baby - that time of bonding and feeling like only mama will do is so special, and doesn’t last forever. <br />
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But there comes a time when that feeling that it’s not ok to let go, even for a few hours, becomes dysfunctional. This winter, that time arrived for me. <br />
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I started feeling resentful - toward my kids and toward this choice that I had made to stay home with my kids. I started yelling more. Even though I was around my kids almost 100% of the time, I wasn’t truly present. I was staring at screens. I was letting our afternoon quiet time go on and on because I just wanted to be alone. I wasn’t planning fun things for us to do. I was being reactive and I wasn’t happy. <br />
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I wasn’t quite sure what was wrong and I wasn’t sure how to fix it. I became convinced that the problem was that I wasn’t well-suited to homeschooling and staying home full-time with my kids. I decided I probably needed to go back to work to be happy. I entertained the idea of a new career. I looked into programs, considered furthering my education and started making tentative plans. But that didn’t feel right either. <br />
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I backed off the whole quitting homeschooling and going back to work thing and just sat with this really uncomfortable feeling for quite a while. Weeks. Months. <br />
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And as the time passed, some things got easier. During the winter Ellie tested positive for SIBO (small intestine bacterial overgrowth). We treated it, and magically we were able to successfully reintroduce a bunch of foods back into her diet. Her tummy aches have been much fewer and farther between and her symptoms of interstitial cystitis have also improved. Things aren’t perfect, but they’re better. After multiple attempts at night weaning, August amazingly started sleeping through the night on a trip to visit family and after we returned he accepted that night nursing was over. He started sleeping through the night. I still feel like I have to knock on wood every time I say that, but it’s really true. There is absolutely nothing better than a full night’s sleep and after about a month in a row of good sleep I felt like a completely different person. <br />
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I read the book The Last Best Cure by Donna Jackson Nakazawa and the book basically changed my entire life. That’s all. ;) Nakazawa talks about the importance of mind-body work like meditation, yoga and acupuncture to heal autoimmune disease. She speaks from experience as a person suffering from multiple autoimmune diseases, juggling a career and life as a wife and mom, and feeling stuck in the place where she felt she had reached the end of the line with Western medicine. When it seemed like there was nothing else her doctors could do for her, she started a year-long experiment incorporating simple techniques and practices to bring mindfulness and healing to her body and spirit. (Spoiler alert: it worked.) In many ways this book provided the permission I had so badly been needing to step away and take time for myself. <br />
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It was like when I was little and in school and the teacher wrote me a hall pass to leave the classroom to attend to some other important task. I needed a hall pass to start going to yoga again. I needed a hall pass to get a massage.<br />
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We had been occasionally using a high school girl as a babysitter and my husband suggested that we ask her to come on a regular schedule. It’s important to me that we have the same babysitter over and over again, so I don’t need to go over the kids’ food situation each time I leave the house, which just amps up my stress about departing even more. It can be so hard to find a sitter who is trustworthy and takes instructions seriously so I count myself lucky that we’ve found one. <br />
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So I started stepping out more. I committed to a once-a-week yoga class. This did not happen effortlessly. I think it took four weeks in a row of getting dressed for class and then not making it out the door because August was crying and didn’t want me to go, my husband was stuck in traffic and not home in time, I forgot to start dinner in time, etc. etc. etc. and finally around that fifth week everything feel into place and I was able to get out the door. <br />
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I visited the sauna and got a massage. I stopped by a restaurant to have lunch by myself on the weekend. My husband took the kids to the beach by himself for the day. Sometimes I just go somewhere and read a book. Even though Ellie was nearly three when she had hear first overnight with my parents, we started sending August along starting at 18 months and he has done great. So every month or so my kids go to their grandparents for an overnight and my husband and I get to go out and sleep in and generally remember why we decided to do this whole marriage and family thing in the first place.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQC747CmF8c92kpDJYhN7zmtCeGcci8zfnYBEr6ZnjtFhM7PFOuRjrO0qAed6ICBQNtdCIfEKsyhYYEfyPR2oYRczznl6OkQbMIvYqhE1UvRK4xVwtDTXEEnwts_-YcJpgaH8ShRiw-bg/s1600/IMG_3638.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQC747CmF8c92kpDJYhN7zmtCeGcci8zfnYBEr6ZnjtFhM7PFOuRjrO0qAed6ICBQNtdCIfEKsyhYYEfyPR2oYRczznl6OkQbMIvYqhE1UvRK4xVwtDTXEEnwts_-YcJpgaH8ShRiw-bg/s1600/IMG_3638.jpg" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thank goodness for date night.</td></tr>
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Right now the sitter comes for three hours on Wednesday afternoons and another three or four hours on the weekend so my husband and I can go on a date. This is SO important for me - my relationship with my husband is of the utmost importance. He is my best friend and we are in a seriously intense phase of marriage with two small kids and his really demanding job.<br />
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The big lesson this past winter has taught me is that no one is going to hold my hand and walk me out the door to yoga class. No one is going to show up and say “You know what, mama? You’re doing a great job! You deserve a day off!” I needed to ask for that time, I needed to ask for my husband’s support and in turn get a babysitter’s support and I needed to hold firm boundaries around protecting that time for myself. <br />
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And the best part? I’m a better mama for it. I have renewed energy for my kids. I get to go fill up my own introverted cup and then come home and give of myself willingly, not begrudgingly. It feels nice to be the one who the kids shout with glee for when I walk in the door. And I think it’s healthy for them to see me take time for myself. Self-care doesn’t come naturally to all of us, and it’s important that I model that, especially for Ellie. <br />
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Things aren’t perfect. Things are never, ever perfect. There is no such thing. But there is more balance now, in a phase of life that is inherently imbalanced. And now, I’m off to yoga.Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com3tag:blogger.com,1999:blog-7102726802629322686.post-78330581715406127452015-02-11T11:50:00.001-08:002015-02-11T11:53:44.415-08:00Yummy nut ballsI know there are approximately 1,000,000 recipes for nut balls in the world, but I have been making them for years and made a version today that is the best I've ever had. I thought I'd write down the recipe so I don't forget what I did!<br />
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Ingredients:<br />
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1/3 cup brazil nuts<br />
1/3 cup cashews<br />
2/3 cup sunflower seed butter<br />
1 cup pitted Medjool dates<br />
1/2 cup shredded coconut<br />
pinch Celtic sea salt<br />
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Put all ingredients into food processor and blend until it becomes a paste consistency and forms into a ball. You may need to scrape down the sides every once in a while.<br />
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Form into bite-sized balls and store in the fridge. Yum! <br />
<br />Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com0tag:blogger.com,1999:blog-7102726802629322686.post-28098844218659977882015-01-21T15:28:00.000-08:002015-01-21T15:28:06.273-08:00Where I like to hang out onlineI haven't really figured out my relationship to this blog, even though I've been writing it for FIVE years now. I can't believe that can possibly be right. Some days I feel very share-y about our journey with food and allergies and health in general and other days I feel quite private about all of it. And sometimes those private days stretch into weeks and months.<br />
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I also think about privacy as Ellie gets older and I realize that this is <i>her</i> story as much as it is mine. I'm not sure how I'd feel if my parents had broadcasted my health history to the world during my childhood. Seems quite weird.<br />
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I wrote this blog in the early days because I <i>needed</i> to. I needed the writing to process what was happening and to get validation from other parents who were having similar struggles. I think I still have that need, but it isn't nearly as big now that I have more years and more knowledge under my belt.<br />
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Sorting out what to share and what to keep private has generally been a tricky thing for me in this new age of social media, an age I did not grow up in. My family got a computer when I was in high school and it was used very rarely, mostly for typing up really important assignments or gathering as a family and writing a group email to my brother once he left for college.<br />
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As a stay-at-home mom I find that I crave the connection social media offers me, but I want to share things in my way, on my own terms. I may give a peek into our life, but no one except my husband and children truly know what our family life is like, and I think that's as it should be.<br />
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But I do love social media because it opens doors to connect with like-minded people. I've made a wonderful friend who read this blog religiously, reached out to me and shared her painfully similar circumstances and now we are Facebook friends. Even though we've never met (I live in Portland, Oregon and she lives in New Zealand) I treasure that friendship because she <i>gets it</i>. <br />
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Recently I've been embracing Instagram as a fun way to explore my love of photography and have coincidentally connected with quite a few other homeschooling moms, which has been so nice on those lonely "Am I the only person homeschooling in the world" days.<br />
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When I started this blog I got quite a few comments on each post. I think part of it was because I was starting the GAPS intro diet at the same time as quite a few other people, and we built community by following each other's blogs. But over time that connection seemed to fade. A surprising number of people still read this blog, but there are few comments, so I don't know who they are! The sense of connection went away. (I am sure my extremely sporadic posts didn't help in this regard.)<br />
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At any rate, I thought I'd share where I hang out online these days in case there are others looking to connect. On Pinterest you can find me at https://www.pinterest.com/annierecipes/ and on Instagram you can search for annieandfam.<br />
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I will continue to write here as the inspiration strikes. If you're reading this, I'd sure love it if you'd leave a comment and let me know why you're here - do you have a kid with allergies? Are you on a special diet? Do you have Hashimoto's? Did you Google GAPS? None of the above? Are you a family member? Haha :) Hearing from you might help me figure out how to best use this space. <br />
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<br />Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com5tag:blogger.com,1999:blog-7102726802629322686.post-40686310741806871392015-01-20T13:25:00.001-08:002015-01-20T13:25:41.079-08:00Focusing on the non-food aspects of healthThis fall I participated in a program hosted by our family's nutritionist, Andrea, Nakayama, called the <a href="http://replenishpdx.com/hashimotos/" target="_blank">Girl's Guide to Hashimoto's</a>. It was a tremendous experience for me and a healing experience for me to put my own health front and center for a while, and put Ellie's health on auto pilot (as much as I am capable of, anyway). <br />
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The program was a huge undertaking for me and I learned a TON. I learned a tremendous amount about my own phisiology, what Hashimoto's is, how my personal history and genetics got me here and how it expresses itself uniquely in me. The program had an active message board and I benefitted tremendously from the ongoing support from Andrea and her other nutritionists, along with the other participants in the program, who are walking this road alongside me. There is something very healing about realizing you're not the only one who experiences the symptoms you do ... that you're not alone.<br />
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One of the big ah-ha's I left the program with was that I have - for years - been over-emphasizing the food element of our health and under-emphasizing the myriad other ways I can support my health. I realized I really needed to step up my own self care, not only to benefit myself, but to benefit everyone else in my family. The food piece had become obsessive for me. I wanted to get it *perfect* and I wanted to arrive at my ideal energy level and ideal weight *right now.* I wanted Ellie to feel amazing all the time. I'm working on letting all that go.<br />
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So this winter I'm taking some time to hone in on my own self care. I'm making room for:<br />
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hot cups of tea and (vegan and sugar-free) hot chocolate<br />
lingering an extra couple of minutes in bed in the morning<br />
knitting<br />
date nights with my husband<br />
getting a massage and going to the sauna<br />
time in nature<br />
reading<br />
photography <br />
reading books to my children by the fire <br />
buying myself a treat here and there - a new dress, a perfect teapot, beeswax candles<br />
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One thing I learned from my time doing the Girl's Guide is that I really enjoy being a part of a supportive online community. Especially in these cold and rainy winter months where we can go weeks without a casual chat with the neighbors. Even my die-hard introverted self gets lonely. So I signed up for a different program for the wintertime, this time I'm doing <a href="http://beautythatmoves.typepad.com/beauty_that_moves/2014/11/hibernate-online-retreat.html" target="_blank">Hibernate</a> through Heather at Beauty that Moves. I really dislike winter, so I was hopeful that Hibernate would help me embrace winter and boy have I been right. It's been lovely. Part of the retreat included creating our own Winter Wellness Recipe. Here's mine:<br />
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Each year that passes since having children has drawn me deeper into appreciating and embracing the seasons. This season is slow, quiet, contemplative - all things I love! So why do I hate winter? I'm working on making friends with it.<br />
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More than anything I am working on slowing down and appreciating these two children I've been blessed with. They are growing so, so fast. August is 19 months old already and Ellie proudly tells everyone she meets that she's five and a half. These moments where they want all of their mama and nothing but their mama are overwhelming and profoundly wonderful. I am so grateful.<br />
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If I can be as excited about life as my toddler is excited about trash day, that's really all I'll ever need :)<br />
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<br />Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com23tag:blogger.com,1999:blog-7102726802629322686.post-72561479915920658522014-11-26T15:18:00.000-08:002014-11-26T20:29:24.928-08:00MTHFR and salicylate sensitivityA few months ago our whole family (minus the toddler) got tested for MTHFR mutations. Before that, I had never heard of MTHFR and knew nothing about how genetic polymorphism could affect our health. It has turned out to be absolutely crucial to understanding Ellie's health and her struggle with food sensitivities.<br />
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Initially we did the test for Ellie and myself. I tested positive for one mutation, and she tested positive for the other. Later, we tested my husband and he was positive for Ellie's, which means he passed it on to her. Now I know who to blame ;)<br />
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My mutation is quite minor, but hers can be more serious. The testing results showed that her enzymatic activity is only 60% of a normal person. What does that all mean? It took me a lot of reading and absorbing to sort out not just the basic science of it, but also, what this means specifically for Ellie.<br />
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We all have an MTHFR gene. If it is mutated, then its ability to produce the MTHFR enzyme is reduced. The enzyme plays a key role in detoxifying the body of heavy metals, toxins and more. So, essentially, an impaired MTHFR gene is an impaired detox system. <a href="http://www.stopthethyroidmadness.com/mthfr/" target="_blank">This article</a> helps to explain the cascade of effects an impaired MTHFR gene can trigger ... the defective enzyme can't break down folate properly, which in turn means the body can have high levels of homocysteine, then the homocysteine is poorly converted to glutathione (which detoxifies the body) along with less production of methionine, leading the body to produce less SAM-e. SAM-e is involved in methyl group transfers and supports the body's ability to process and produce hormones. Honestly, most of this is waaaaay over my head and makes me wish I had majored in biology or chemistry instead of journalism. <br />
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Every hiccough in that cascade of critical processes invites trouble. Individuals with an MTHFR mutation are more susceptible to a host of health problems ranging from depression to autism to miscarriages to heart disease to cancer. Scary stuff.<br />
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So we worked with our nutritionist and started Ellie on some supplements to help support her body's ability to detoxify. We started her on methylated folate. Because individuals with the MTHFR mutation struggle with methlyating, or breaking down, the folate in their supplements and food, this supplement essentially skips that step, and provides the folate the body needs. Folate helps the body synthesize and repair DNA, which would be important if you have a genetic mutation! <br />
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We also started her on a B Vitamin complex, since B vitamins are critical in supporting the body's detox pathways.<br />
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So how does all of this relate to food sensitivities? Ellie is highly sensitive to salicylates. Salicylates are a natural chemical found in foods - they serve as nature's preservative and protect the plants from disease, pests and fungus. Salyicilates are also found in personal care products and medications, like aspirin. Ellie's body treats salicylates like a toxin, and she cannot efficiently process toxins out of her body. So the fact that she a) has a sensitivity to a food chemical that is very difficult to avoid and b) has a genetic mutation that makes it difficult for her body to move those chemicals out of her system, means that the salicylates build up in her body and cause symptoms. <br />
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A few weeks later I started digging deep on the connection between MTHFR and individuals with <a href="http://en.wikipedia.org/wiki/Mast_cell" target="_blank">mast cell</a> issues. Ellie has not been officially diagnosed with a mast cell disorder, but many of her symptoms are in line with a condition like mastocytosis, so I was researching that connection. (Ellie was in fact incorrectly diagnosed with mastocytosis this summer, when her allergist mis-read her test results, but that's another post for another day).<br />
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When a person with allergies is exposed to something they are allergic to, their mast cells release histamine and cytokines in an event called mast cell degranulation. Symptoms can vary quite a bit, the worst of which being anaphalaxis, which thankfully Ellie has never experienced. Ellie will most commonly experience tummy aches, <a href="http://dermatology.about.com/od/facialflushing/a/ffmastocytosis.htm" target="_blank">flushing</a> and hyperactivity. <br />
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Anyway! There does seem to be some connection between MTHFR and overactive mast cells. Here is a <a href="http://geneticgenie.org/blog/2013/01/31/mast-cell-activation-disorder-mcad-chronic-illness-and-its-role-in-methylation/" target="_blank">helpful article</a> I found and the quote that stood out to me:<br />
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<blockquote>
MTHFR Polymorphism may be a predisposing factor to mast
cell disease. 5-MTHF regulates biosynthesis of BH4. The A1298 mutation
in the MTHFR enzyme effects the conversion of BH2 to BH4. Less amounts
of BH4 inhibits NO formation resulting in increased mast cell
degranulation. Inadequate BH4 formation also puts a strain on the
conversion of tryptophan to serotonin and tyrosine to dopamine, leading
to low levels of the neurotransmitters: dopamine, norepinephrine,
serotonin and melatonin. </blockquote>
<blockquote>
Low blood serotonin levels help define a
sub-group of patients with mastocytosis that are more likely to present
with neurological and gastrointestinal complaints. Human mast cells can
express and be activated through multiple serotonin receptors, and
synthesize and release serotonin. Low blood serotonin levels in such
patients may be the result of low BH4 levels due to 5-MTHF deficiency,
the result of long-term malabsorption from chronic inflammation of the
gastrointestinal tract or both, as is the case with me. </blockquote>
<blockquote>
BH4 is a
critical factor in cellular activities such as cell proliferation, cell
cycle regulation and differentiation. Could BH4 deficiency secondary to
MTHFR polymorphism be one of the fundamental mechanisms that underlie
mast cell proliferation?</blockquote>
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What stood out to me the most here is that there is a sub-group of people with mastocytosis who specifically present with neurological and gastrointestinal symptoms, and that that can be related to low serotonin levels. And what can cause low serotonin levels? An MTHFR mutation. It was so intriguing to me to think that by supporting Ellie's serotonin levels of all things, that we could be supporting her tummy and get rid of her tummy aches. Fascinating. <br />
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I did some research into supplementing with BH4 and it turns out to be INSANELY expensive and quite hard to get your hands on. Essentially, BH4 is a critical co-factor in the body's production of serotonin along with melatonin, dopamine, and adrenaline. Thankfully there's another, much more common, supplement that does similar work in the body. The supplement 5-HTP is an amino acid that supports the body's synthesis of serotonin and melatonin from tryptophan.<br />
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We started Ellie on the 5-HTP and saw a massive change in her almost immediately. The biggest immediate difference we noticed was that she had a much easier time going to bed. Ellie's always been one of those kids who fought bedtime tooth and nail, and suddenly she was going to sleep right away, rather than popping out for one more thing a hundred times. Then we noticed that Ellie was becoming much more flexible. She didn't need things to be "just so" quite as often, she was open to adjusting plans and expectations gracefully. And she hasn't had a tummy ache in months. <br />
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Recently we ran out of methylated folate and were out of it for about two weeks. I saw the progress we had made with Ellie's health slowly regress. She was more hyperactive, more anxious and just "off" in that way that mamas can be tuned into. One afternoon I gave her grapes for a snack (grapes are <a href="http://salicylatesensitivity.com/about/food-guide/fruits/" target="_blank">very high</a> in salycilates) and after she ate she said "bippity boppity boo" for 30 minutes straight. She could not stop. It has taken me a long time to realize that for Ellie hyperactive talking and repetitive talking is a symptom for her that something's off.<br />
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Ellie takes two prescription drugs for her to be able to eat a fairly varied diet. Cromolyn and ketotifen mediate allergic responses that occur in the gut. Even though these are very safe drugs, I still don't love the idea of her needing to take prescription drugs to eat food for the rest of her life. So I'm still on the hunt to figure out how to help support her body to work at its best with the hope that someday we can get her of these prescription drugs. <br />
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It's hard to say whether the methylated folate, the B vitamins or the 5-HTP was the critical change that helped Ellie feel so much better. And I'm not sure it's important to parse out which supplement made the massive change. All I care about is that what we're doing is working. Every day, every week, every month, every year, I get a little bit closer to figuring her out. <br />
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Want to learn more? This site is the best resource online for MTHFR: <a href="http://mthfr.net/">http://mthfr.net/</a>. Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com5tag:blogger.com,1999:blog-7102726802629322686.post-1756877924773903432014-07-18T11:26:00.000-07:002014-07-18T11:28:37.062-07:00My imperfect loveSix months ago - when Ellie was four and a half - I decided to make her a doll for her fifth birthday. I didn’t know how to sew and I had certainly never made a doll before. But turning five felt like such a big milestone and I wanted to give her something really special. <br />
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I started researching doll making and looking at patterns online and even emailed a total stranger who had blogged about making her daughter a doll. I quickly realized not knowing how to sew a stitch was going to be an impediment, so I sought out a teacher who specialized in making Waldorf dolls. <br />
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During my first lesson I felt silly as I struggled to thread the needle and tie a knot. I really should have taken home economics, instead of skipping it to be the yearbook editor, I thought. I thought by this age I would be the editor of a newspaper, not sewing dolls. Funny the paths our children lead us down.<br />
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During my first lesson August was about eight months old and crawling all over my teacher's non-childproofed sewing studio. Every few seconds I was lunging to keep him from harming himself or something else. Just when we got in a rhythm - he pooped. What was I thinking? How could I take on such a massive project with a four-year-old and baby to take care of? But as with most things, I refused to acknowledge I had taken on too much, and continued on determined. <br />
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During the next lesson we cut out the muslin for the doll’s body. I was making a heavy baby, which would be filled with toasted millet. The doll would be about three pounds and give Ellie something substantial to heft around and snuggle.<br />
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Initially I thought six months was plenty of time to complete the project, but Ellie’s birthday came closer and closer and I was nowhere near finishing the doll. I hand sewed every stitch around the heavy baby’s body - twice around. I toasted the millet and scented it with lavender essential oil. With my teacher, we formed the head out of wool roving, tied crochet string around the head to make an eye line and a jaw line, sewed fabric around the head. She showed me how to fill the baby’s body with the millet, and sent me off to finish the project.<br />
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I needed to sew the hands, attach the hands to the body, sew the baby’s dress and hat, embroider the eyes and mouth, and sew the head onto the body. I only had a week left.<br />
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The perfectionist inside me was paralyzed. I didn’t know how to do any of this, and I didn’t want to give Ellie a misshapen baby with funky facial features. I wanted the baby to be perfect. Ellie’s life has been so hard, and she’s endured so much. So much. So much more than any child should have to endure. And I wanted this doll to say something to her. It’s okay, maybe. Or, you are so special to us. Or, we can still make this life beautiful even if it hurts sometimes. <br />
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The unfinished doll sat on my dresser, hidden in a bag. I didn’t work on it and the days passed. I didn’t want to screw up the doll. I felt like I had screwed so much up already. <br />
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Finally - a few days before her birthday - I just had to get over my fear and start working again. I sewed the hands. I didn’t have the right color thread and I didn’t have time to get to the store, so instead of sewing the peach colored hands with matching peach thread, I had to sew them with blue thread. I had to forgive myself. <br />
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I worked on the doll’s dress with my mom, using her sewing machine, and we realized the pattern wasn’t going to work, that the neck hole was too small and I would have to sew the dress onto the doll to get it to go on. My last stitches looked terrible. I had to forgive myself.<br />
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Finally, the night before Ellie’s birthday, I had to tackle the part I was most worried about - embroidering the eyes and mouth. I had no idea how to embroider. The first eye looked pretty good, then the second eye didn’t match at all. I tried tearing it out and doing it over, but it only made it worse. I had to re-embroider the first eye to make it look more like the second. I had to forgive myself. <br />
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The pattern warned not to pull the threads too tight because the fabric would pucker, and “age” the look of the doll. Well that’s exactly what happened with the mouth, and I couldn’t figure out how to fix it. I had to forgive myself. <br />
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At midnight that night I was finally making the hat when I realized it too was too small. I had to invent my own little hat pattern and it didn’t look the way the pictures did. I had to forgive myself. <br />
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The doll didn’t turn out perfect. But that doll has every ounce of my love in every stitch.<br />
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I couldn’t help but find the similarities in making that doll and our journey with figuring out Ellie’s health. I have worked so hard. I was so determined. I made so many mistakes. Sometimes I stalled out and sometimes I charged forward. I had to let go of trying to make Ellie’s life perfect, because as much as I love her, I couldn’t figure out how to take her pain away. I had to let my love be enough. I had to tell myself that I was enough, whether I had figured it out or not. <br />
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Every time I make her a meal, or give her a bath, or read her a story, or spend time snuggling when she has a tummy ache, I sew another stitch of my love for her. I’m not perfect. I’m human. I’m not a doctor. I’m a mother. I used to think maybe it would have been better for Ellie to have been born into a family with a doctor for a parent. Maybe they would have been able to help her better. But there’s a reason God gave her to me. <br />
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In the morning I gave Ellie her doll and she was so delighted. She fell in love. Ellie didn’t see any imperfections. She didn’t see eyes that didn’t look like the instructions, or a dress that had hasty stitches in the back. She didn’t critique the puckered mouth. She saw a special doll that her mama had made just for her. All she saw was the love. My imperfect love.<br />
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<br />Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com7tag:blogger.com,1999:blog-7102726802629322686.post-36437222102815884122014-06-26T20:08:00.000-07:002014-06-26T20:08:15.861-07:00If you are a nursing mama with Hashimoto's - don't drink this teaI am transitioning off the <a href="http://babygaps.blogspot.com/2014/05/hashimotos-during-postpartum-time-and.html">Autoimmune Protocol</a>. It was an amazing and very healing experience. I saw all of my Hashimoto's symptoms fall away and felt my energy return, my emotions stabilize and my resiliency improve. In an ideal world, maybe I would have stayed on the protocol longer, but as our summer started ramping up and we are spending more time away from the house, it became a serious stress to prep AIP-approved foods for outings.<br />
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The first time I ventured off the AIP I actually didn't mean to. I was stuck in some massive afternoon traffic and hadn't eaten for hours and was feeling my blood sugar start to crash. All I had in my bag was a container of almonds and suprisingly I felt totally fine after eating them. After that I gave myself a little leeway and have generally been feeling quite good. It's possible I've overdone it in the chocolate department, which always impacts my sleep quality and then my energy the next day.<br />
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I am not following the re-introduction of foods as recommended in <a href="http://www.thepaleomom.com/the-paleo-approach-reverse-autoimmune-disease-and-heal-your-body">The Paleo Approach</a> because it makes me nervous to introduce egg yolks as the first food, since I know clearly that eggs are a problem for me. It's possible the yolks are fine - I just didn't want my first try to be a fail. So I've added back in limited nuts and chocolate and that alone makes the diet work for my needs at the moment. Some people are able to follow an 80/20 rule when doing the Paleo diet - meaning 80% of the food they eat is Paleo-approved and for 20% of the time they give themselves a little flexiblity to eat standard American food. Well I am taking the same approach for AIP - about 80% of the time or more I'm eating AIP-approved foods and 20% of the time I'm eating just Paleo food (like nuts). It's working for right now.<br />
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Anyway, all of that was a very long-winded lead up to what happened today.<br />
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I have been feeling really good while following this 80/20 AIP rule. Today was an unusually chilly day and so I decided to make myself some tea this morning. I grabbed the box of Mother's Milk from the back of the cupboard, which I hadn't had since going on the AIP. Within an hour I was experiencing symptoms like:<br />
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<li>fatigue</li>
<li>brain fog</li>
<li>depression</li>
<li>anxiety</li>
</ul>
That was weird. I had to take Ellie to a dentist appointment and I didn't think much of it. This afternoon for some reason I felt like tea again, so I made another cup of Mother's Milk. The symptoms were much worse this time. I became convinced that Ellie's health situation was much worse than I thought it was the day before. I became really worried about August's health. I found myself staring into space and vegging out on Facebook, a bad habit I had eliminated while doing the AIP. I had to go upstairs and lay down as soon as Ian got home because I was exhausted.<br />
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It occurred to me that the tea must have caused a problem. For some reason I remembered reading something in The Paleo Approach about fennel being a problem. We don't really do spices because of Ellie's salicylate sensitivity, so I hadn't paid too much attention to the AIP spice list. I checked the Mother's Milk box and compared it to <a href="http://www.thepaleomom.com/2012/07/spices-on-autoimmune-protocol.html">this list</a>. The tea has fennel, fenugreek and anise - all banned on the AIP. So interesting.<br />
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I thought back to both of my postpartum times and how terribly I struggled. I drank Mother's Milk tea after both of my children's birth - daily - for at least the first six months. I think about how terrible it made me feel today, and think about how it must have been contributing to how difficult that time was for me.<br />
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I was just trying to do my best for my kids. Especially when Ellie was tiny and labeled with failure to thrive - I was just chugging Mother's Milk tea, believing that her low weight was because I wasn't making enough milk.<br />
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I feel sad for my past self - I wish I could go back in time and tell that struggling mama to go on the AIP. That everyting was going to be OK. That the Mother's Milk tea I thought was helping was actually hurting. Hopefully this post will help some other mama out there.<br />
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Hugs to you, mama. You're doing great. Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com1tag:blogger.com,1999:blog-7102726802629322686.post-87386593945833379392014-05-26T19:56:00.004-07:002014-05-26T19:56:49.116-07:00Hashimoto's during the postpartum time, and tackling the Autoimmune Paleo ProtocolA few weeks ago it became apparent that I needed to make some big changes. Somewhere around 9 or 10 months after August's birth I started having a major Hashimoto's flare. I was exhausted. Bone-deep exhaustion that just wasn't explainable by having to get up and nurse a couple of times in the night. Foods that had felt fine a couple of months earlier were suddenly not fine at all.<br />
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Ian and I were discussing the book "Grain Brain," which makes the case that consuming grains (even "healthy" whole grains) can cause myriad problems like dementia, anxiety, depression and ADHD. I asked Ian if he thought I was depressed.<br />
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"Yes, of course you're depressed," he said.<br />
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"How long do you think I've been depressed for?" I asked. <br />
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"Since you got pregnant," he answered.<br />
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Sometimes it takes someone who has known you forever, who is walking the path with you, to see what's right in front of you. I needed to make a change, and I needed to make it yesterday.<br />
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When I got pregnant with August I quickly threw my Paleo lifestyle out the window. Unfortunately. I had actually been dabbling with re-introducing grains into my diet when we decided to get pregnant, and then when the nausea hit suddenly my nutrient-dense Paleo diet was absolutely revolting to me. All I wanted to eat was grains and dairy. And maybe that was fine. Maybe it would have been OK to eat those foods to get through a rocky time. But I kept eating them. I continued through the pregnancy, well after the nausea passed. My Hashimoto's went into remission during the pregnancy and I was able to tolerate foods I normally can't eat - like grains, dairy and eggs. But just because I was tolerating them doesn't mean I was feeling incredible. During the pregnancy I struggled quite a lot with fatigue, which I wrote off as a normal pregnancy symptom. Now I look back and wonder if I could have had more energy if I was eating the best diet for me.<br />
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After August was born he was so colicky, and reacted very strongly to me eating lots of healthy foods, like cruciferous vegetables, onions and garlic and other high FODMAP foods. I coped with that reality by continuing to rely on grains to fill the gaps, even though I did cut out dairy and eggs in case they were irritating his gut. And the time just never came when it seemed time to cut out grains. I had come to rely on them. And honestly I didn't want to let them go. As I moved through the postpartum period grains worked less and less for me so I moved away from baking with grain flours and toward eating only whole grains. Then I ate less whole grains. In spite of those incremental changes, I was still feeling crummy.<br />
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About a month ago I hit rock bottom. I was experiencing fatigue that was so severe it was affecting my ability to take care of my kids and feed my family. At a naturopath appointment I went on and on and on about how I felt like I had tried everything and was still feeling so terrible. I told her that the best I had ever felt in my life was when I had followed an egg-free Paleo diet. She suggested I try returning to that diet and see if it relieved my symptoms.<br />
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I immediately removed grains and eggs from my diet. The biggest thing I noticed was a shift in both my mood and my mental clarity. I told my nutritionist that it was like going from the black and white Wizard of Oz to the first scene in color. The world was brighter. <br />
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But still I felt frustrated that all my symptoms weren't resolving, especially fatigue. Making the transition was difficult. I was feeling sad about loosing lots of foods I had enjoyed, and feeling sorry for myself that maybe I'd never be able to eat them again. My fatigue continued but showed up in a pattern that I couldn't make any sense out of. <br />
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A few days later I got a newsletter from our nutritionist - <a href="http://www.replenishpdx.com/">Andrea Nakayama</a> - that included a review of the cookbook <a href="http://www.amazon.com/The-Autoimmune-Paleo-Cookbook-Allergen-Free/dp/0578135213/ref=sr_1_1?ie=UTF8&qid=1401128674&sr=8-1&keywords=autoimmune+paleo+cookbook">The Autoimmune Paleo Cookbook</a>. I had never heard of the Autoimmune Paleo Protocol (AIP). I dove in, ordered the book, got the book <a href="http://www.amazon.com/The-Paleo-Approach-Reverse-Autoimmune/dp/1936608391">The Paleo Approach</a> from my library and started reading as much as I could.<br />
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The autoimmune protocol takes the Paleo diet and even further restricts it by removing eggs, nightshades (potatoes, tomatoes, eggplants and peppers), nuts and seeds. That list completely freaked me out. What's left? several people have asked me. Well, meat. Vegetables. Fruit. That's it. I decided that there was no way any human could survive on such a restricted diet. And yet... I started to notice things.<br />
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I made a batch of raw hazelnut cookies and after I ate a few I was hit by such a debilitating wave of fatigue that I couldn't move from the floor, when I needed to be getting my kids ready for bed. I made a soup with tomatoes in it and could barely move my arms the next morning when I heard August's first peeps. It was scary.<br />
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Suddenly the only thing that sounded worse than giving the Autoimmune Protocol a try was continuing to feel as crummy as I was feeling. So I dove in. It was completely overwhelming.<br />
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I made the commitment to follow the protocol just for the next meal. Once I got through that meal, I made the commitment to follow the protocol for the next meal. And I went on like that for a couple of weeks. I stubbornly hung on to a few foods, like raw cacao powder, chia seeds and stevia. I refused to believe those foods could cause anyone problems. But over time I let them all go. I am now following the AIP 100%.<br />
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I was talking with my chiropractor the other day and was telling her about these changes I've made to my diet. Her response was "I could never do that," which I hear a lot from people who consider my lifestyle choices, ranging from being Paleo to homeschooling. I always find it to be an interesting comment. "You would," I told her, "if you felt as terrible as I did and this was the only thing that helped."<br />
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After following my one-meal-at-a-time approach for enough weeks I started to feel well enough to really step back and see the big picture. I feel so much better. My energy is returning. My enthusiasm for life is returning. Life doesn't feel so overwhelming (even though managing my health needs and special diet, along with Ellie's health needs and special diet, which are often in conflict, is SUPER overwhelming).<br />
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This was all confirmed for me when I accidentally ate something containing egg yesterday and was hit with such severe fatigue that I had to spend part of the afternoon in bed. I was so frustrated that I lost part of the holiday weekend to feeling like crap just for eating a tiny amount of hidden egg. At a Paleo food cart of all places! <br />
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I haven't figured out yet how long I plan to stay on the AIP. It isn't intended to be a lifelong diet - it is designed to help get an autoimmune flare under control. At some point I should be able to add those verboten foods back in. I certainly can't imagine life without chocolate forever. But the big takeaway lesson for me is that I probably will need to stay within the larger confines of the Paleo diet forever. And I'm coming to a place of acceptance about that. I would rather have energy to play with my kids than eat a gluten-free burger bun. <br />
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Following the AIP has resolved my Hashimoto's symptoms like nothing else ever has. No supplement or lifestyle change or diet has helped me have this steady energy and clear mind like the AIP has. It's not perfect and hiccoughs like my egg exposure feel discouraging, and I am having to re-discover how to keep my blood sugar balanced on a completely different diet, but healing is happening. Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com0tag:blogger.com,1999:blog-7102726802629322686.post-8099489369828080902014-05-11T14:25:00.001-07:002014-05-11T14:25:58.963-07:00Lemon Ice Cream (Paleo, Vegan, Sugar-Free)I spent some time this morning making these <a href="http://mywholefoodlife.com/2014/04/29/lemony-coconut-fudge/">lemon cups</a> (amaaaazing!) and had the idea for some lemon ice cream. I Googled vegan lemon ice cream and all the recipes I found contained cornstarch, which wouldn't work since I've gone grain-free again. The recipes I found also used a lot more natural sweetener then I can tolerate. So I tweaked the recipes I found and came up with this one. It is SO good!<br />
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I have no idea how to photograph food :)</div>
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Ingredients:<br />
<ul>
<li>Zest and juice of two lemons</li>
<li>Two cans full-fat coconut milk (I use Native Forest - the cans are BPA-free)</li>
<li>1/3 cup maple syrup</li>
<li>1/4 tsp. vanilla stevia</li>
<li>1/2 tsp. guar gum</li>
</ul>
The guar gum makes the ice cream creamy. I got this idea from Kelly Brozyna's cookbook <a href="http://www.thespunkycoconut.com/my-cookbooks/">Dairy Free Ice Cream</a>, which is wonderful. Her lemon-lime ice cream called for homemade dairy-free yogurt, which I didn't have, so I had to improvise. <br />
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Blend in a blender and pour into an ice cream maker. Run until ice cream is frozen and transfer to freezer (or eat right away!)<br />
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So yummy. Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com0tag:blogger.com,1999:blog-7102726802629322686.post-66232608256000559432014-04-29T22:41:00.001-07:002014-04-29T23:12:51.462-07:00Allergy-friendly Easter basketI always struggle with how to handle food during the holidays. It wasn't until I had Ellie and we struggled so much with food intolerances and allergies that I realized how holidays really revolve around food. Like if you subtracted food, there's really no scaffolding to hold up a holiday.<br />
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When you don't eat gluten, dairy, sugar, or eggs holidays get tricky. When you add in a salicylate sensitivity and Oral Allergy Syndrome, things get darn near impossible.<br />
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Over the years I feel like I've found a good balance of choosing one big food to highlight and celebrate, and then really focusing on the non-food aspects of the holiday, like family, tradition, connection, stories, faith, etc. At Thanksgiving Ellie and I made two pies together. At Christmastime we made cut-out cookies. <br />
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When Ellie was younger I could get away with skipping the food entirely. We've had treat-free Easters for several years in a row and it was no problem - Ellie didn't know any different and had lots of fun with her Easter baskets filled with new toys and books. But Ellie is almost five (what?!?) and is much more aware these days of how things work in the world and I knew she would be delighted to find some treats in her Easter basket this year. <br />
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And so that question comes up every year: what to put in the Easter basket? When I grew up I ate so. much. candy. on Easter. Obscene. Chocolate bunnies. Chocolate eggs. Those chocolate malt ball thingies. So much sugar. Whatever else came in the basket was secondary to the chocolate.<br />
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I wanted to echo those experiences - fun chocolate in Easter-y shapes, but avoid the sugar, the dairy and the chocolate itself, because chocolate is high in salicylates. I lucked upon a fantastic recipe for <a href="http://www.nourishingmeals.com/2014/02/how-to-make-raw-vanilla-white.html">white chocolates</a> on the Whole Life Nutrition blog (this site and their cookbooks are such great resources). Then I lucked upon these <a href="http://www.amazon.com/Cybrtrayd-E010-Chocolate-Copyrighted-Instructions/dp/B000E9WL22/ref=sr_1_1?s=home-garden&ie=UTF8&qid=1398837078&sr=1-1&keywords=easter+molds">adorable chocolate molds</a> on Amazon. Here's how they turned out:<br />
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Ellie was so delighted to find a bowlful of chocolates in her Easter basket in the morning. It was so worth the work of making them (at the 11th hour the night before, of course). And I was especially glad we made them when we were at an Easter brunch later in the day and Ellie couldn't eat the candy hidden in the eggs at the Easter egg hunt, but she could eat the candies I had brought along.<br />
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The rest of Ellie's Easter basket was a sweet collection of springtime finds I just have to share because they have been loved so much:<br />
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<a href="http://www.amazon.com/Story-Root-Children-Sibylle-Olfers/dp/0863152481">The Story of the Root Children</a> by Sibylle Von Olfers<span class="author notFaded" data-width=""> </span><br />
<span class="author notFaded" data-width=""><a href="http://www.amazon.com/Spring-Board-Book-Gerda-Muller/dp/0863151930/ref=sr_1_10?s=books&ie=UTF8&qid=1398837420&sr=1-10&keywords=spring">Spring</a> by Gerda Muller </span><br />
<a href="http://www.amazon.com/Little-Butterflies-Stained-Glass-Coloring/dp/0486270106/ref=sr_1_3?s=books&ie=UTF8&qid=1398837483&sr=1-3&keywords=butterfly+stained+glass+coloring+book">Little Butterflies Stained Glass Coloring Book</a><br />
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I also have started needle felting, so I made Ellie this sweet bunny egg:<br />
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It was so great to make an Easter basket that felt like a celebration and a special treat. I want to create warm memories for her and for holidays to feel like they are bursting full with love and happiness, not times where our dietary differences stand out more than anything else. <br />
<br />Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com0tag:blogger.com,1999:blog-7102726802629322686.post-67555590404884936882014-04-07T20:07:00.004-07:002014-04-07T20:09:19.675-07:00Our homeschooling lifeI've never written about the fact that we've chosen to be a homeschooling family here because it didn't seem particularly relevant to the focus of the blog, which is about our journey with food and allergies. But I had the opportunity to write about homeschooling for a blog being organized by my awesome homeschooling group here in Portland. I thought it would be fun to share a link.<br />
<br />
Ellie has taken me on all kinds of unexpected journeys since she was born. Homeschooling is just the latest example of that :)<br />
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Check it out here:<br />
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<a href="http://homeschoolpdx.com/2014/04/06/our-morning-walk/">Our morning walk</a><br />
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<br />Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com0tag:blogger.com,1999:blog-7102726802629322686.post-62855714885608859852014-03-16T16:30:00.000-07:002014-03-16T20:53:27.479-07:00Colic is an invitationI have been thinking about colic a lot lately and what it means for a family to experience it. What does it do to us to hold our own crying baby and not be able to fix the problem? Is there anything in the world that makes someone feel more powerless than this? Becoming a parent is a surrender in many ways. We have so little say over who this little person becomes - both of my children have exhibited such strong and distinct personalities from such an early age. It is humbling, and puts me in my place as their guide, grateful that I have been entrusted with these spirits.<br />
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I was encouraged by my doctor to wean August at six months because he was struggling so much with tummy pain and sleep disturbances, seemingly because he was not tolerating my milk (or, more specifically, the foods I was eating, and how they were translated in my milk). This recommendation did not feel right. But instead of outrightly rejecting it, I worried over it, seriously considered it, researched homemade formula, tried homemade formula, etc. etc. I exerted a tremendous amount of effort toward something just because my doctor said it was important, not because it felt right to me.<br />
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Ultimately I came to the conclusion that I didn't want to wean August just because returning to a very restrictive diet felt impossible to me. It didn't feel right to take nursing away from him just because it was hard for me. (And, honestly, from a practical viewpoint, I looked at making homemade baby formula and it looked like a tremendous amount of work and not something I was willing to take on.)<br />
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So I circle back to the spiritual work that must happen when I decide to do something difficult. I remember reading "When Things Fall Apart" by Pema Chodron when Ellie was little and not doing well. In it, Chodron talks about when life is difficult people tend to run away from whatever is challenging them. But the thing we really should do is run right toward the challenge, she says. Immerse ourselves in it. Let it break us and let it built us back again, into a new form. I wrote a bit about the beautiful things that can happen when we open ourselves up to that kind of transformation here: http://babygaps.blogspot.com/2011/10/broken-open.html.<br />
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And let me be honest, when I decided to have another baby I was really not interested in taking on another difficult situation, no matter how transformative. But love can get us through some pretty tough spots.<br />
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I am reading a book right now called <i>Lifeways: Working with family questions</i> and it has a wonderful passage about colic and the transformative effects it can have on a parent: <br />
<blockquote class="tr_bq">
"But infancy is not only peace and joy. Babies get things like colic, and their distress turns the whole house upside down. When we first meet such situations, we seem to have no ground under our feet. I had a baby whose digestive system was thrown into acute disorder by some wonder drugs given for an infection (which may nevertheless have saved his life). During his first weeks he would often cry for six hours at a stretch and those cries were ones of real distress. My husband would hear them still ringing in his ears while riding in the underground train to work. At the time, I was so distraught and involved in the child's misery that I believed I would never smile again. </blockquote>
<blockquote class="tr_bq">
"In such experiences, there is a schooling too. A baby in turmoil has such power that it can rob us of sleep and drive distraught mothers into post-natal depressions, breakdowns and even baby-battering. Yet, if we take the challenge seriously, as an opportunity to learn how to take the helm of our small boat, and to practise the art of keeping our balance and hanging onto our identity, then a new courage for the voyage may be found. Each mother's voyage is unique. But to understand its challenges is the first step in meeting them. And perhaps all will meet in one way or another these questions I have tried to describe - the need to re-form our identities, and to find a centre of balance and peace." </blockquote>
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Our culture right now seems so focused on the quick fix. It seems there is always a way to dull the pain or lessen the discomfort. To take a shortcut. But is the easier way the right way? I've found that the answer is often no. And this is never more true than when it involves questions around my small children's well being. <br />
<br />
Would it be easier for me have weaned my babies and not nursed them through difficult digestive troubles? Perhaps yes, perhaps no. Would it have been easier for me to say "I can't do this. I shouldn't <i>have to</i> do this."? Yes that sounds quiet appealing today, actually. But this is what it is to be a parent. We choose to carry our children through good times and bad. We don't get to walk away when it gets "too hard."<br />
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And the beautiful thing about going to that dark place and really feeling scared and thinking "maybe I really can't do this" is that we discover that we are capable of so much more than we think. We can move mountains when we are motivated by love for our children. <br />
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I have started thinking of colic as an invitation to go deeper. An invitation to ask myself what's most essential in this brief season of my life. An invitation to live with imperfection. There are all of the practical elements of course to nursing a baby who is reacting to foods like food journaling, religious adherence to your dietary restrictions and self-care, but there is also space in this experience for real, mystical transformation. I would never trade this experience because in so many ways it has made me who I am. I have truly found a new center and a sense of peace that can only come when I act in harmony with my conscience.<br />
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I am immensely happy with my little boat these days. It carries two beautiful children and a wonderful husband. Even though our journey started out on rough seas, I know it's going to be a fantastic voyage.<br />
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Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com0tag:blogger.com,1999:blog-7102726802629322686.post-78605912293529623202014-01-10T21:33:00.000-08:002014-01-10T21:44:39.244-08:00What causes colic?As much as I hoped and dreamed that things with my second baby would work out differently than my first, unfortunately our little guy, August, has really struggled with tummy pain just like his sister did as a baby. The difference this time around is that I figured out the cause of this terrible pain. (Hey! It only took me four years!)<br />
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When August was teeny tiny it was apparent immediately that he was struggling with something. He had good days and bad days and when he cried he wasn't just making little baby whimpers - he had a full-throttle "I am in some serious pain" cry. I knew that cry all too well.<br />
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Doctors put this type of stuff in a pretty crappy category known as colic which to me just says, we have no idea what is wrong. Some of the literature on colic is infuriating. Here's what the Mayo Clinc has to say about it:<br />
<blockquote class="tr_bq">
The cause of colic is unknown. Researchers have explored a number of
possibilities, including allergies, lactose intolerance, an immature
digestive system, maternal anxiety, and differences in the way a baby is
fed or comforted. Yet it's still unclear why some babies have colic and
others don't.</blockquote>
Maternal anxiety! Yes, it is 2014 and doctors are still blaming mothers for their baby's discomfort. Bullshit. <br />
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I had been able to liberate my diet significantly during my pregnancy, after years of restrictions trying to support Ellie during nursing and then finding my own path with food. During the pregnancy I was able to eat goat dairy, eggs and grains. I was really eating whatever I wanted except for gluten, cow dairy and sugar.<br />
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August was only a few days old when I realized I needed to make some big changes to try to help him. First I went back off goat dairy and eggs, since those are both hard-to-digest proteins. My midwife discouraged me from making any big changes this early in the game, but the change seemed to help. I knew enough about colic to know that I had to cut out gassy foods like broccoli, cabbage, onions and garlic.<br />
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But we still continued to struggle. The frustrating thing, and ultimately a helpful thing, was that some days were so much better than others. Because I am so, so accustomed to tracking my own diet and my baby's symptoms (I can food journal in my head, in my sleep) I was able to start making connections. But the connections didn't make any sense. Why on earth was he fussy every time I ate cherries? Whoah! What the heck is wrong with me eating fennel? Hang on, why can't I eat apples? I knew chocolate was a no-no for colic so I tried something with carob. Crap, no carob wasn't OK either. <br />
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We really hit rock bottom when we flew to Denver to visit my husband's side of the family. I didn't pack our probiotics (because we no longer fly with a cooler of homemade yogurt and chicken stock like crazy people) so when we arrived I bought some Inner-Eco coconut water kefir to supply our daily dose of probiotics. And August was DISASTER. He was crying and impossible to get to sleep. WTF?<br />
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I continued to struggle along and we were having good days and bad days. What was so interesting to me was that August was seriously the happiest. baby. ever. when he was feeling well. Look at this guy:<br />
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He obviously didn't have a bad disposition or just enjoy crying and making everybody miserable (not that any baby does). He was capable of being happy and comfortable and I wanted so, so badly to enable him to be comfortable every day. I had been through too much already with Ellie. I needed to find the answer. I was on a bit of a mission. Maybe a little bit obsessed. As I identified and eliminated foods I could tell I was getting closer to an answer but I couldn't tie everything together and we were still struggling. <br />
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When August was about five months old, I was fed up. Obviously this wasn't just some newborn "colic" that he would outgrow. There was something wrong with something I was eating and I needed to figure it out. I spoke to our nutritionist, who has been with us almost from the beginning, and she listened to my litany of foods I couldn't eat. "It's like I can only eat meat and carbs! And bananas. For some reason bananas are OK."<br />
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Andrea said she thought August might be reacting to foods that are high in FODMAPS (Fermentable Oligosaccharides Disaccharides Monosaccharides and Polyols - say that ten times fast!). <a href="http://www.ibsgroup.org/brochures/fodmap-intolerances.pdf">This is the best list I've found</a> online of what foods are high in FODMAPS.<br />
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As soon as I saw the list I realized this is the answer. FODMAPS.<br />
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High FODMAPS foods include dairy (lactose), fermented foods, many fruits, those darn cruciferous vegetables, onions, garlic and leeks, beans, wheat (not an issue for me, but interesting), honey and sugar-alcohol sweeteners like xylitol. Through trial and error I've found that August is insanely sensitive to high FODMAPS foods. Green beans should technically be OK but they weren't for us. I had miso soup with a tiny sprinkle of green onions and August was a disaster that night and in the morning his breath smelled like onions. Crazy.<br />
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Is this a problem with me, or with my kids? Since it happened with both of them it appears that the problem is with how I digest FODMAPS and then how that translates into my milk. But of course this is all a guessing game. How is it that millions of dollars are not being spent on medial research to figure out and cure colic? How much heartbreak could humankind avoid if we could understand this terrible thing? <br />
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What can a person on a low-FODMAPS diet eat? Well, meat and carbs. And a lot of bananas.<br />
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I have been slowly carving out yet another new diet for myself and trying to figure out how to creatively stretch a small number of foods into interesting dishes. And really we've just been eating very simple meals. Meat or fish served with a starchy vegetable or grains and a vegetable are pretty much all we eat for meals these days.<br />
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This has been very, very hard. It's impossible to put into words how difficult it has been for me to have to go on yet another extremely limiting diet while nursing. It's one of those frog in cold water situations. If you put a frog in a pot of cold water and slowly increase the heat you can boil him to death without him hopping out. If you put a frog in a pot of boiling water, he will get his ass to safety in a second!<br />
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If you had asked me seven months ago if I would be willing to go on the diet I am currently eating I would have said not no but hell no. But the changes happened slowly over time and here I am, sitting in a pot of really hot water. And the only reason I am still here is because of love. Oh my gosh I love this baby so much. I would do anything - ANYTHING - for him. He has completely stolen my heart. And so here I am - right here in the pain and the inconvenience and the sadness of it all - again - because I love him so.<br />
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A month ago I saw my doctor and she took one look at me and told me I should wean. It's fair to say I was a mess. I hadn't been sleeping. My thyroid - we found out from bloodwork - is out of whack again and the Hashimoto's is back in business. My iron levels are low. My body is not absorbing B12. I'm a mess. Her solution was to wean. I had sacrificed enough already, she said. For some moms, nursing just doesn't work out. It doesn't make us any less of a mother.<br />
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I went home convinced that she was right. I had done enough. I could absolve myself and give up. Move on. I really tried living with the decision for a few days. The thought of weaning a six month old was almost unthinkable. I couldn't believe she had even suggested it. I researched <a href="http://www.thehealthyhomeeconomist.com/video-hypoallergenic-baby-formula/">homemade baby formula</a> and balked at how much work it seemed to be. I found a place in town where I could buy it pre-made and made the decision to go buy some. Just to try it. See if he tolerates it. And that was weeks ago. I can't bring myself to do it. <br />
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Every time August nurses I look down at his face and hold the heft of his little body and I just can't imagine letting go. I know that mothers who bottle feed for whatever reason love their babies just as much as I do. Of course they do. But here I have this amazing gift - this child who chose me. Me! To be his mother. And he will only be a baby for just this short while. And I can't let go.<br />
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I have all my life to eat chocolate and kale. I have this day to nurse my seven-month-old baby.<br />
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It's a hard road and I haven't figured out yet what I'm going to do. I can't keep up with this diet forever. But I also can't wean him - it's too soon. Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com10tag:blogger.com,1999:blog-7102726802629322686.post-55672023937820110492013-09-11T22:34:00.001-07:002013-09-17T09:38:16.195-07:00Allergies schmallergiesSo much has changed since I last wrote <a href="http://babygaps.blogspot.com/2013/06/wayhome.html">an update</a> about Ellie’s health. It’s absolutely amazing how dynamic the immune system is. I think a lot of people believe that if a child has an allergy, that allergy will be there for life. Or there are people who ask whether Ellie will grow out of her allergies. And my belief is that neither of those things are true. Food allergies are a living, breathing thing just like any illness. We can help heal them, or we can be complacent and live with them. Thankfully, our latest strategy has made huge strides in healing Ellie’s allergies. <br />
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First of all, we have made a ton of changes to Ellie’s treatment protocol.<br />
<ul>
<li>In May we doubled Ellie’s Ketotifen dose and we also switched from using Ketotifen tablets which we were getting from Canada to capsules of powder that we are able to get from a local compounding pharmacy. The Canadian tablets contained a tiny amount of lactose, and the new Ketotifen does not have any fillers, so I believe that change alone made a big difference. Ellie can’t do dairy, and a tiny amount of lactose twice a day builds up over time.</li>
<li>In June we switched Ellie’s probiotic, on the theory that perhaps her gut was overpopulated with too few strains of good bacteria. </li>
<li>We also started an herbal protocol intended to support her immune system. </li>
<li>We added some other supplements to support her gut health and her immune system, including l-glutamine and bovine colostrum and I re-committed to actually giving her her fish oil and Vitamin D every day. </li>
</ul>
Somewhere in the mix of all of those changes, magic happened. Ellie is now eating most foods she’s had <a href="http://babygaps.blogspot.com/2012/03/fresh-food-allergy-testing-going-off.html">positive allergy tests </a>for. She has had positive skin prick results for carrot, celery, parsley, bananas, walnuts, spinach and she is eating them all with no mention of tummy aches. No rash ... no nothing. Remember <a href="http://babygaps.blogspot.com/2012/02/cinnamon-allergy-aha.html">cinnamon</a>? Yep, she’s eating cinnamon with no problem at all. That one really floored me. <br />
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The only foods she’s had positive results to that we haven’t tried are citrus and oysters just because we haven’t gotten around to it yet. <br />
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I reported this fabulous news to our nutritionist the other day and she asked what I thought this big change was attributable to - the increased Ketotifen, the change in probiotics, the herbal protocol, or the additional supplements. Of course, I have no idea. But I imagine it’s all of the above. Something has shifted and it’s wonderful. <br />
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But, as the saying goes, this ain’t my first rodeo, and I know now that the immune system ebbs and flows. I am enjoying this new freedom and the room I have to play with Ellie’s diet in such an expansive way now. But I am also trying not to rely on these new foods to heavily so I don’t overwhelm her delicate system. <br />
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Another interesting thing happened this summer that I thought was worth mentioning. At one of August’s well-baby visits Ellie just randomly started vomiting. If you have kids you probably know this scenario - your kid seems totally fine and then wham-o - barf is everywhere. August also peed on the midwife a few minutes later so it was quite the office visit. <br />
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We figured Ellie was coming down with a bug or something, but we took her home and she was totally over it. Weird. Well, a few days later the exact same thing happened. And then a few days later the exact same thing happened again. This wasn’t happening on subsequent days ... so I put my investigative mama cap on and realized Ellie had eaten cherries on each of these days. These were cherries that were given to us, and I believe they were not organic (we almost always eat organic produce). Hmmm .... I didn’t think Ellie was allergic to cherries ... that is really weird. <br />
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Well a couple weeks later Ian was reading Sunset magazine and there was an article about cooking with scallops and a side blurb about how you always want to buy dry scallops because the white scallops you normally see at the store are chock full of preservatives. How interesting. Because Ellie vomits when she eats scallops. And it’s the exact same reaction. A few hours after eating the food she vomits multiple times until her tummy is empty and then she’s totally over it.<br />
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So I started doing some internet research and found that not only do cherries and scallops have a lot of preservatives in them, they commonly contain the same preservative. So interesting! It’s a great lesson that sometimes it’s not the food that’s the problem, it’s what’s been added to the food that can cause trouble. <br />
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I am looking forward to trying organic cherries or dry scallops to test out my theory. <br />
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In the midst of all of this - this crazy, big, exciting summer - my baby girl turned four. It's hard to believe. It's been a long road and I love her more every day.<br />
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<i>I realized after posting this and re-reading it that it sounds like Ellie is eating whatever she wants, which is not true. She is still gluten, egg and cow-dairy free. Also, she is not symptom-free. We are still seeing some symptoms related to eating high salicylate foods (like those raspberries, above!). Things aren't perfect and, really, what is, right? But things feel pretty darn fabulous after the rough year we've had. </i>Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com2tag:blogger.com,1999:blog-7102726802629322686.post-11018402233066223752013-08-02T11:11:00.000-07:002013-08-02T11:11:06.146-07:00Worth the waitThere were so many days during our journey with Ellie's allergies and health that I shed tears over the worry that we'd never be able to have another child. I felt that she needed so much from us that there was no room to nurture another child (many days there wasn't even enough room to nurture the parents!). I worried about conceiving a child who would share her perplexing health issues and that that would simply be too much. And I worried about having a child who had even more severe issues than her, or different issues, and the idea of navigating a different realm of this brave new world of expanding chronic childhood disorders would be impossible. And, like any mother, I wondered how I could possibly love another little person as much as I loved Ellie.<br />
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So when we started Ellie on Ketotifen last spring and she suddenly seemed so vibrant and healthy, Ian and I started to have hope. I had done a tremendous amount of work on my own health after being diagnosed with Hashimoto's that winter. I took natural supplements to support my thyroid. I did several cleanses. I was exercising regularly, sleeping well and had returned to a very healthy weight (after being too heavy for many years and then too thin while I was nursing Ellie on GAPS). I was in a really good place and so we took the leap. It goes to show how much my health had changed because it took us two years to conceive Ellie and this time it took just one try. We were elated!<br />
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And so on June 10 we had a son. August Wayne Denny was 8 pounds 4 ounces and 21.5 inches long. I fell so deeply in love with him the second I saw him.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM8KbpsbsWt8PK_jBxagIol7TLOadttNTG53yb3ONZBohT3RnWQfBii3KD3jpjn7yjfEtHqutqxIzCoHNxuOxtG7lWFUXqooO5kMRUccf4ZEQ2myOZFHjHRfTWkM4jDNd7W_NDDYGzxx8/s1600/IMG_1076.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM8KbpsbsWt8PK_jBxagIol7TLOadttNTG53yb3ONZBohT3RnWQfBii3KD3jpjn7yjfEtHqutqxIzCoHNxuOxtG7lWFUXqooO5kMRUccf4ZEQ2myOZFHjHRfTWkM4jDNd7W_NDDYGzxx8/s320/IMG_1076.jpg" width="240" /></a></div>
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We delivered Ellie in a hospital and were unhappy with that experience (to say the least). So this time around we took the leap of faith that a home birth would be a better choice. It was an amazing experience. I was able to labor at my own pace. I felt completely supported by my midwives, my husband and - maybe this will sound odd - by my home. The transition and pushing stages were the hardest thing I have ever done (I had an epidural with Ellie) but I came through to the other side feeling more powerful and having more ownership over the experience. August was born in the water.<br />
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Since his birth we've been through lots of ups and downs. Having a newborn is hard. Learning how to nurse again was hard. August had tongue tie - that was rough. Having to change my diet to deal with colic is hard. Having a baby who doesn't sleep at night, while also having a four-year-old who is awake during the day, is SUPER hard. Letting go of the fears we were carrying since Ellie's babyhood has been hard. But holding a sleeping newborn in my arms is bliss. Watching Ellie hug and kiss her brother (over and over and over again!) is amazing. Seeing my husband shush and bounce and rock our new baby is wonderful. Seeing August's first smiles made all the hard moments seem like nothing. We have been blessed - twice - with beautiful, vibrant children and as my Grandpa recently said, "what more can you ask for?"<br />
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Many people have asked me if August will have allergies like Ellie does, or if I can tell already whether he has allergies, and the answer of course is "I have no idea." I am doing everything I can to protect him from developing allergies. I have gone off many foods to protect his delicate tummy (I found this <a href="http://www.nourishingmeals.com/2011/09/rice-breakfast-porridge.html"><span id="goog_2063753365"></span>blog post<span id="goog_2063753366"></span></a> tremendously helpful in pinpointing the biggest culprits. All we can do is eat healthfully, support our family's health and watch and wait. And maybe say a few prayers.<br />
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<br />Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com3tag:blogger.com,1999:blog-7102726802629322686.post-77055386271661032222013-06-04T20:02:00.001-07:002013-06-04T20:09:39.772-07:00Finding our way home<style>@font-face {
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We have returned to Portland. Initially the plan was to make
a four-month trip up here for the summer and to have our second baby surrounded
by our network of family and friends. But this spring it became more and more
obvious that LA was not a good fit for Ellie and probably never would be. I
never imagined a three-year-old could be so vocal about her needs and opinions,
but ours is, and just as we have been doing since her first day on Earth, we
listened. </div>
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Ellie would say things like, “this is not my country.
Portland is my country.” And, “California is too crazy. I don’t want to live in
California.” Every day.</div>
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So when a promotion came up in Ian’s company, which would
require being in the Portland office, he jumped at it and he got it. Suddenly
our trip became a move and I, at eight months pregnant, packed us up and off we
went. </div>
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But as with any story there are a hundred ways to tell it,
and another version of the story is that we returned to Portland for Ellie’s
health. </div>
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We never figured out how to access food in LA that was as
good as what we had access to in Portland, both at our local health food store
and through our food buying club. The water quality in LA was terrible. The air
quality was dubious. The abundant access to nature, which we had taken for
granted in Portland, was nearly nonexistent in our day-to-day life in LA. But
worst of all was the healthcare. </div>
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It took leaving our extensive network of healthcare
professionals for us to really see how essential all those doctors and
alternative practitioners were to Ellie’s health (and my own). And recreating
that network in a new city was nearly impossible. I imagine that if I spent the
next three years vetting doctors in LA I would likely end up with an equally
excellent team, but I didn’t have three years to spend on such a project. Ellie
needs a team now. She needs doctors who understand her complex health issues,
and I need those doctors to be the type who believe what mama has to say. This
is not easy to find. </div>
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So it was with all of this and much, much more weighing on
our minds that Ian and I made the decision to pull the plug on our LA
experiment long before we really got a chance to see it through. </div>
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And after being back in Portland for only one month I can
say it was totally the right decision. </div>
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Ellie has had a terrible, terrible time lately. It all
started when we ran out of her Ketotifen in December and really we haven’t
regained our ground since. She is struggling regularly with symptoms like tummy
aches, headaches, joint pain, dizziness and worst of all seems to be a surge in
urinary symptoms that have made the whole family miserable. She is wetting her
pants, refusing to pee, having the urge to pee and then not being able to,
saying it hurts when she pees, etc. All of this is tied to food, but what foods
precisely, has eluded me. I suspect salicylates, but can't be certain.</div>
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Since we’ve been back I’ve been taking Ellie on a reunion
tour to see all her doctors. First was a visit with her naturopath, who is her
primary care doctor. She ordered a ton of blood work, some of which was requested
by our nutritionist, who we had plans to see a few weeks later. Our naturopath
appointment touched on everything I’ve written about and more, but focused
quite a bit on Ellie’s struggle in LA and the doc suggesting the possibility that she has sensory
processing disorder. The fact that she got so overwhelmed by the lights, the
noise, the crowdedness and the busyness of LA concerned our doc. Apparently
it’s not normal for a 3-year-old to refuse to go shopping at Whole Foods
because it’s “too crazy” there. She recommended evaluation by an occupational
therapist. I told her I’d think about it. </div>
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Next up was a visit with Ellie’s allergist, who I am
convinced is a genius. She is the one who originally prescribed Ketotifen. We
talked at length about how Ketotifen seemed like it was a wonder drug, and then
after being without it for such a long time this winter, Ellie is still on a
more restricted diet that she was last fall. We just can’t seem to regain the
ground we lost, and her symptoms are much worse. The doc recommended doubling
the dose, and informed me that we can now get Ketotifen from a local
compounding pharmacy and get it covered by insurance. Such great news! </div>
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The allergist suggested the possibility that Ellie is
suffering from something called <a href="http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/" target="_blank">interstitial cystitis</a>, and said she’s had
patients for whom the condition is triggered by consuming foods they are
sensitive to. I looked it up online when I got home and the symptoms are
dead-on. The condition is also referred to as “painful bladder syndrome” and
involves symptoms like urinary frequency and urgency, inability to control the
bladder, pain while peeing, etc. She referred us to see a pediatric urologist –
supposedly the best in the city – who of course we have to wait six weeks to
see. </div>
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After that we saw Ellie’s chiropractor, who also received my
brief overview of how the past six months have gone, including all the symptoms
that are worst right now. After some cranial sacral work and some back
adjustments, she told me that Ellie’s urinary symptoms could be resolved with
chiropractic adjustments and that Ellie’s low back and pelvis were severely
jammed up. Those areas are associated with the health of the kidneys and
bladder. I’m always a little doubtful at those appointments (in spite of that
chiropractor doing amazing things for Ellie in the past two and a half years)
and yet in the hour after the appointment Ellie had two huge pees, which she
was able to tell me she needed on time, so I stopped doubting and made a
follow-up appointment. </div>
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The final stop on the reunion tour was Ellie’s nutritionist,
who, again, I am convinced is a genius. It was like seeing an old friend. I
would say that of anyone on this planet, this woman knows the most about
Ellie’s story and what we’ve been through with her. She knows how hard we’ve
worked to get her healthy and she also knows how painful this process has been.
Our nutritionist showed us the blood work results. It was one of those moments
in your life when you can actually feel the metaphorical clouds parting and the
sun shining through. There was real information on those pages. About Ellie.
About what was happening in her body. </div>
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The nutritionist had asked for a bunch of testing to take a
look at Ellie’s immune markers. She told us later that she has had huge
difficulty getting doctors to order these tests for kids like Ellie and I
offered up a little prayer of thanks that ours had been willing. I’m going to
offer up a disclaimer here, because I am no scientist and I am not totally sure
I grasped all of the science she explained, but here is how I heard it. </div>
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The blood work took a look at Ellie’s primary, complementary
and adaptive immune systems. There were at least two markers that were very out
of balance. The first we talked about was the relationship between the C4
protein and the C8 protein, which are part of the adaptive immune system. The
C4 protein is responsible for tagging invaders, like viruses, so other parts of
the immune system can come in and attack those cells and kill them. Sort of
like when you’re moving and you go through the house putting post-it notes on
everything that needs to go on the moving truck. The trouble with C4 is that it
is not super smart about differentiating between true invaders and other things
that are in the blood system but shouldn’t be, like food. And if a person has a
leaky gut, food molecules are constantly getting into their bloodstream. Well
Ellie’s C4 is extremely elevated. Which means there is a whole army of these
proteins circulating in her blood stream tagging the crap out of food
molecules, alerting her body that they need to be taken out. </div>
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This explains two things to me 1) how it is that Ellie is
sensitive to SO MANY foods and 2) how it is that the foods she’s reacting to
seems to always be shifting. Just when I think I’ve established that a food is
safe for her, she suddenly seems to be reacting to it. And because she’s on
such a limited diet, she gets exposed to foods over and over again. Like right
now strawberries seem to be one of her few safe fruits, But if she eats strawberries
daily they will start to become a problem. I know this because Ellie ate
blueberries daily for a very long time, and now she gets a rash around her
mouth and a tummy ache when she eats them. Blueberries got tagged with the
post-it notes.</div>
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The other marker that was elevated was Ellie’s lymphocytes.
Lymphocytes come in three forms: T cells, B cells and natural killer cells.
Their job is to identify “non-self” cells in the body and to attack them. Once
the cells identify the invaders, they “activate” a response in the body.
Interestingly, according to Wikipedia:</div>
<br />
<blockquote class="tr_bq">
<div class="MsoNormal">
“Following activation, B cells and T cells leave a lasting
legacy of the antigens they have encountered, in the form of <i>memory cells</i><span style="font-style: normal;">. Throughout the lifetime of an animal these memory
cells will “remember” each specific pathogen encountered, and are able to mount
a strong and rapid response if the pathogen is detected again.”</span></div>
</blockquote>
<br />
<div class="MsoNormal">
This is why immunizations are effective. We get exposed to a small amount of a virus, our body mounts a response, and a memory is formed in our body that the virus is a bad guy and will be able to more effectively attack it in the future. So once Ellie’s body identifies avocado as an invader, for
example, there is a cellular memory of her body’s negative response to the
avocado. And that’s how you develop an allergy. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The fact that Ellie had a compromised gut at five months old
(both because five-month-olds’ guts are inherently leaky, and because she
inherited gut flora problems from me) and her first food was avocado and she
ate avocado on a daily basis for months – and then when you add in what we now
know about how her immune system functions – voila, you’ve got a strong
sensitivity/allergy to avocado. </div>
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<br /></div>
<div class="MsoNormal">
So, what do we do with all this information? How do Ian and
I, as Ellie’s chief medical officers, synthesize all this information? Does she
really need to see an occupational therapist to work on how overwhelmed she
gets by our modern world? Or would she feel less overwhelmed if she weren’t
constantly reacting to foods? Is doubling her medication going to be enough?
Should our priority be on chiropractic work and getting her spine back in good
alignment? Should our focus be on the urinary symptoms and getting her
diagnosed, via multiple invasive tests, for interstitial cystitis? Or is that
just a symptom of a larger problem? Does the real answer lie in her immune
system? And how on earth do a couple of lay people like us heal an immune
system on overdrive? Or is it all of these things working in concert with each
other? Is each piece as critical as the other? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
(And, always on my mind these days, how do I tackle all this
when I am due to have a baby in seven short days?)</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our nutritionist has laid out a protocol for us to follow,
with the intention of continuing to heal Ellie’s gut while also bringing her
overactive immune system into balance. She has treated kids with symptoms and
blood work just like Ellie’s and has seen results with this protocol she’s
developed. So I am putting myself in her hands. Just like I embraced Ketotifen
and modern pharmaceuticals last year, this year I embrace this much more
alternative path (while not abandoning the Ketotifen). </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Did you ever play the game Whack-a-Mole at Chuck E. Cheese
as a kid? I loved that game and yet I was so infuriated by that game. Every
time I had successfully whacked the mole down into his hole, there he was,
popping out of another hole! I could never get him! There was something about
that challenge that enraged and delighted me at the same time. And I feel like
Ellie’s health is like a giant game of Whack-a-Mole. Once we beat one symptom,
another pops up. This time last year we were in the throes of trying to find
out if Ellie had Lupus because of the God-awful joint pain she was
experiencing. This year it’s urinary symptoms that have become our focus. But it all comes down to the
microscopic cells in her body, and the fact that they are attacking the foods
she eats. If we can somehow encourage those cells to simmer down, and behave
normally, maybe we can win this game.</div>
Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com4tag:blogger.com,1999:blog-7102726802629322686.post-83077792366649590252013-02-01T07:11:00.003-08:002013-02-01T07:23:21.934-08:00What two months without Ketotifen taught us (all over again) a <style>@font-face {
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So, here’s what happened. In my nauseous, pregnant daze in
November, I did not order Ellie’s Ketotifen refill in time. By the time I did
call to place the order, I realized it wouldn’t arrive before we were set to
leave for our holiday travels. So I had the medication shipped to my parents’
house, in the hopes that it would arrive in the window we were in the Pacific
Northwest, and not later, after we had moved on to visit family in Colorado. All
told, we were without Ellie’s Keotifen for about three weeks in December and we
were definitely feeling the pain with daily tummy aches and foods that had been
working that weren’t working anymore. But we got it back, just before
Christmas, and we were so relieved. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then, we flew from Portland to Colorado and somewhere in
transit we lost it. We lost $200 in medication and we could not find it to save
ourselves. Ian and Ellie and I all had terrible colds and I know I was in a
major fog, and all I could do was get through the next week of travel. I had no
capacity for tracking down the Ketotifen (which is also called Zaditen). We had
left two boxes of gifts at my parents’ for them to ship to us, and we hoped
that maybe we had put the Ketotifen in there. So we spent a week in Colorado,
and then spent another week at home in LA waiting for the boxes to arrive and
when they did arrive – no Ketotifen. That’s when I really realized we were
completely screwed. So I called CanadaDrugs.com and placed a new order and was
told it would take the customary 14-21 days of shipping, but it could be toward
the long end of that spectrum, because they had changed the country they were
sourcing from. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
By this point, things were really looking bad. Ellie had
only had Ketotifen for one week out of about six. She was having tummy aches
daily. In the morning the first thing she would say was, “Mama, I have a tummy
ache.” She complained of her tummy hurting all the time and I had no idea what
to do. I tried pulling back on her diet, but it had been so long (about nine
months) since this magic pill entered our lives that I didn’t even really know
where to start. I re-researched salicylate sensitivity, referred to this online
food list daily, and seriously restricted any form of her allergic foods, even
though small quantities of, say, cooked celery, had been fine in the recent
past. I learned by trial and error – again. I made too many mistakes, and Ellie
suffered. I hated it. I hated that we were back in that place. I think enough
time had passed that I really started to wonder if that bad time had ever even
happened. </div>
<a name='more'></a><br />
<div class="MsoNormal">
In addition to tummy aches, we struggled with other
symptoms. She started having lots of potty accidents. It took a long time for
Ian and I to make the connection (urinary incontinence is a symptom of
salicylate sensitivity) and we weren’t the most understanding parents. It seemed like she was just being stubborn and she was constantly telling us she didn't have to go pee, even if it had been hours since she'd last gone. Ellie
also became really – um – unpleasant to be around. She wasn’t listening to
anything we said, wasn’t cooperating, wasn’t playing independently and
generally didn’t seem to care that we were fed up. I wasn’t sure if that was a
three-and-a-half thing or a food thing. We signed up for a parenting class. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And then, Ellie’s Ketotifen arrived three days ago. And
yesterday she didn’t have a tummy ache for even one moment. Yesterday, she
played happily in the yard. Yesterday, she made it to the potty on time every
time. Yesterday, I was able to brush her teeth without a prolonged argument. I
think we are on the road to recovery. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, after another brush with all of Ellie’s food sensitivities
in their unmasked state, I can confidently say that Ellie’s food issues come in
four categories. This I know with absolutely no doubts now. </div>
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<br /></div>
<div class="MsoNormal">
<b>The biggies:</b> Our family does not eat gluten, dairy or sugar. (In our house, anyway. Ian is a healthy guy and he gets to make his own choices when he's out and about. But this is how we run our home<span style="font-family: Wingdings;">.)</span> I feel that avoiding those big three is critical to anyone’s health, and
especially to the health of people with problems that relate back to the health
of the gut, as in autoimmune disease (me) and allergies (Ellie). Our experience
with Ellie’s failure to thrive, and the fact that she indeed began to thrive
once we got gluten out of our diet gave me the confidence to say that’s out
forever, even though we’ve never had a test tell us definitely that she is
Celiac or sensitive to wheat in any way. And a recent run-in with cow cheese at
a restaurant also confirmed that dairy is no friend of Ellie’s. In the past I
would have put eggs on this list, but I have recently been able to add eggs
back into my diet and I’m hopeful to trial them again with Ellie as soon as
she’s back on track.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>Salicylate foods:</b> There is no denying it after this second
bad stretch. Ellie has a big problem with <a href="http://salicylatesensitivity.com/about/food-guide/" target="_blank">salicylates</a>. Foods like dried fruit,
oranges, berries, zucchini, cucumbers, peppers, tomatoes, seaweed, almonds and
peanuts are all very high in salicylates and I can say from experience that
Ellie struggles with them all. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>Oral Allergy Syndrome:</b> As if our produce options weren’t
restricted enough already, Ellie also has big problems with many <a href="http://en.wikipedia.org/wiki/Oral_allergy_syndrome" target="_blank">Oral Allergy Syndrome</a> foods, like celery, carrots, almonds, apples, parsley, apricots,
grapes, bananas and cherries. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>Other random allergies:</b> Finishing up this ridiculous list
are foods that Ellie is just uniquely allergic to. The biggie in this list is
cinnamon. We do not mess with cinnamon, even when Ellie is totally on board
with her Ketotifen. She also had a positive allergy test to walnuts about a year ago and I haven't bothered to trial those. We can live without walnuts for now. </div>
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<br /></div>
<div class="MsoNormal">
It’s a bit early to say, but I’m hopeful we’re on this other
side of this horrible experience. And I am so, so grateful to have found a
solution that really works, and lets my kid be a kid. A kid without tummy
aches. A kid who gets to eat cookies in her backyard sometimes. </div>
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<br /></div>
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Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com2tag:blogger.com,1999:blog-7102726802629322686.post-91482735021465773722013-01-17T22:29:00.001-08:002013-01-17T22:29:50.959-08:00A new home, a new babyI haven't posted to the blog in a really long time and I feel terrible that I haven't even checked the comments in months! I just assume there's probably nobody out there reading about our quirky journey with food allergies and diet, but then I checked in and I had four amazing comments from people out there who are fighting the good fight, trying to find answers for their children. I am always in awe of people on this journey, and somehow much more readily able to see the awesomeness of their work than the awesomeness of mine. But we are all in this together, healing our children and hopefully staying sane in the process :)<br />
<br />
I find it funny that my last post was on September 10 and in it I was musing about what the next chapter held for me, whether I was being called to write about our story or whether I should have another child. This is so funny to me because six days later we conceived our second child, who we just found out yesterday is going to be a boy. I am beyond excited. I have wanted this little sibling for Ellie for a long time, probably even before I had her, and yet it felt wrong to bring another child into the family because of how much she needed from us.<br />
<a name='more'></a><br />
<br />
Because of course parenting a kid with unidentified food issues isn't just challenging because of the cooking and the doctors appointments and the research - it's challenging to parent a kid who feels crummy all the time. A kid who can't sleep because she has a tummy ache - again. A kid who needs you so deeply that she can't handle you talking to another person right now. A kid who is wired for no apparent reason and having potty accidents because I fed her the wrong food. So a second child was off the table for a long time. It was really hard for me, and a sacrifice we made for Ellie and her health. But then we started Ketotifen and had a glorious stretch of good health and my husband and I decided it was time to go for it. <br />
<br />
So here I am, 19 weeks pregnant and sitting in our home in Los Angeles. <br />
<br />
Ha! So in addition to getting pregnant in the fall, we also moved from Portland to LA. It's been a very busy season of life.<br />
<br />
I could write about so many things that have happened. I could write about how tricky it is to manage Hashimoto's during a pregnancy, or how hard (impossible, I found) it is to stay grain-free during the first trimester when just the thought of meat kind of made me want to barf. I could write about how we've lost $200 of Ellie's Ketotifen during the holidays and how we've been without it for about five out of the past six weeks and how hellish that's been. (And validating, that things were a mess before we started it and they really did get so much better when she got on it.) I could write about how I still screw up as a parent on a regular basis, like when I fed Ellie a snack with seaweed in it the other day, completely forgetting that it's extremely high in salicylates, and then criticized her for wetting her pants at the park. Oh, God, isn't it so hard to forgive yourself when you so royally screw up like that? <br />
<br />
But honestly my focus has completely shifted. I don't think about Ellie's food issues and her diet very much at all lately. With the loss of Ketotifen (I am waiting, extremely impatiently, for another batch to arrive from England) I really do need to be paying more attention because the Ketotifen was a little bit like having a blank check. Within certain parameters I have set up (gluten-free, dairy-free, egg-free, sugar-free) I was really able to feed her just about anything. Now, not so much. And yet now I find it so hard to pull my attention back to her diet. I have baby brain, I suppose. I also think my capacity to focus so intensely on her diet just ran its course and I had to relax to stay sane. <br />
<br />
Instead my focus has moved on to things like figuring out whether four people can sleep in a king-sized bed, or how on earth you take care of a tiny baby penis, or how I need to start knitting blue and green things, or whether I can get away with putting this little boy in his sister's pink all-in-one diapers. My focus has shifted to finding our tribe here in LA and meeting lots and lots of new people. I am a natural introvert and I have been challenging myself to "get out there" and meet people for Ellie's sake. My focus has also shifted to researching and thinking about homeschooling, which I feel more and more drawn to as Ellie gets older. (She is three-and-a-half now!) As she said to me the other day, "Mama, I am three-and-a-half and I think I can make this decision on my own." Yikes. But we're connecting with the homeschooling community here in LA and finding it to be full of fantastic people. So we're off on a new adventure and most certainly well into our new chapter. It is exciting, daunting and full of possibility. Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com5tag:blogger.com,1999:blog-7102726802629322686.post-90581631575058998132012-09-10T22:10:00.000-07:002012-09-10T22:10:19.750-07:00A new chapterI don't have cancer.<br />
<br />
Phew!<br />
<br />
I found out quite a while ago, but haven't found the time to write. We live in Portland, OR and August in the Pacific Northwest feels like living in fast-forward. It's finally beautiful out and we all know we only have a few weeks to have as much fun as possible! It's amazing and glorious and extremely exhausting. :)<br />
<br />
So in the midst of that summer craziness I had a biopsy done on my <a href="http://babygaps.blogspot.com/2012/07/unexpected-hiccough.html" target="_blank">thyroid nodule</a> and later heard back that the cells were perfectly normal. I'm supposed to continue to monitor the nodule with regular ultrasounds but my doctor didn't sound worried. <br />
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<br />
During the past few days the sun has still been shining but I can feel the air cooling and know that fall is coming soon.<br />
<br />
This summer has been one gigantic transition for our family. It was only a few months ago that we started Ellie on Ketotifen. She's experienced a huge turnaround and is just the happiest, healthiest kiddo. She's sleeping, eating, pooping, playing and even pretend reading. I am so happy. Having a healthy child is truly the most amazing gift in the world and I know well enough to be grateful for that every day.<br />
<br />
As if experiencing Ellie's transition to health wasn't a big enough deal, we are also planning a move. My husband had an opportunity through work to relocate to Los Angeles and after a lot of consideration, we decided to take the leap. We are excited and scared and every emotion in between. <br />
<br />
I think about this blog much more frequently than I post to it these days, and I wonder if the blog has run its course. I started writing it to share our experiences on the GAPS diet, and then continued writing even after we left GAPS for a diet more targeted to Ellie's needs. Now that Ellie is healthy I wonder what else to write? I definitely don't have interest in writing about my own life, and I realize the life of this blog is probably over. That's the funny thing about the internet - things seem like they should be sustained forever because the internet is always changing, always fresh and new. But in real life chapters begin and then they end.<br />
<br />
I wonder a lot lately about my own next chapter. Healing Ellie took every ounce of energy and focus I had. What comes next for me? Will I have another child? Am I being called to write a memoir about our experiences? Or is it well enough to leave what happened in the past? <br />
<br />
The chapter where I had a sick child who could only eat 28 foods is over. Hallelujah. Now my family starts a new chapter. Who will we be in this one? Who will Ellie become? I don't know, but I do know that she will always be influenced by what we were able to do for her when she was so young.Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com4tag:blogger.com,1999:blog-7102726802629322686.post-43503498812661886532012-07-23T21:20:00.000-07:002012-07-23T21:20:14.500-07:00Two diets, one life<style>
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<div class="MsoNormal">Ever since introducing grains a couple months ago – and really for a long time before that – I’ve been struggling to balance my needs and Ellie’s needs. This just comes with the territory when you become a new mom. A small baby has only needs and a mama’s job is to address them as accurately and promptly as possible. But at a certain point there becomes a mix of needs and wants and this begins the long and nebulous process of drawing boundaries. Like I said, every mama and baby goes through this. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Our process has a more complex layer added on, and it’s about food and wellness. This has sprung up recently as a very big issue. You see, I added grains back into our diet on the hunch that it might help Ellie’s IBS symptoms and they did help – tremendously. But what I noticed over time was that grains didn’t serve me as well. And it’s not exactly that grains don’t serve me well – it’s not quite that black and white. It’s that I have to watch the glycemic load of my food very closely, as it has a huge impact on my health and energy. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Over the course of several months these truths seem to be revealing themselves: Ellie’s biggest issue (aside from her allergies, which are blessedly under control with medication) is IBS symptoms and that is best addressed with a diet high in soluble fiber (grains fall into that category, along with many fruits and vegetables) and relatively low in some fats. My biggest issue, on the other hand, is blood sugar control and that is best addressed with a diet with ample fats and limited carbs (grains fall into that category). </div><a name='more'></a><br />
<div class="MsoNormal"><br />
</div><div class="MsoNormal">So what’s a mom to do? I suppose the easiest choice to make, in a sense, would be to decide to put us on two completely separate diets: me on Paleo and Ellie eating grains. But life is sooooo much more complicated than that. First of all, the amount of work involve in managing two very different diets is unacceptable to me. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Secondly, I simply cannot bake a batch of (gluten-free, dairy-free, sugar-free, egg-free) cookies and not eat one myself. Well, I know I can abstain because I did so for so long. But I choose not to restrict myself in that way anymore because it makes me unhappy. I believe we have to be happy about the foods we’re eating. Not addicted to them, or made happy by them for an unhealthy reason, but really happy to celebrate the food and enjoy it. On the other hand, I am also learning that I also simply cannot make a batch of more mama-friendly treats and expect Ellie to eat them, because they cause her digestive distress. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">This is a confusing area for me and every day I’m tweaking our diet to see how we can both be best taken care of. Can I make cookies for Ellie and a batch of bars for myself? Can I serve rice with dinner and not eat it myself? Can I serve Ellie oatmeal for breakfast and serve myself an extra large smoothie that day? It’s a process, and it’s made more complex by the fact that we’re not adhering to a diet prescribed in a book, but really tuning in to our bodies and listening to what feels right. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Each day I’m exploring where our boundaries are and how we can be held up by our food, not held back. </div>Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com0tag:blogger.com,1999:blog-7102726802629322686.post-72946539615090857142012-07-17T14:35:00.000-07:002012-07-17T14:35:16.695-07:00An unexpected hiccoughIt didn't take long. Ellie started doing well after we added Ketotifen to her routine and Ian and I started talking about wanting to have another baby. I always knew I wanted more than one kiddo but for quite a while, in the thick of Ellie doing poorly, we had resigned to the fact that she very well might be our only kiddo. I imagined having kids fairly close together and as she got older and older I wondered if our chance had passed. But here we are. Our baby girl is 3 now and doing so well that our thoughts have turned toward having another one.<br />
<br />
I discussed this goal with my doctor, who is treating me for Hashimoto's, and she asked me to go in for a thyroid ultrasound just to get it checked out before considering getting pregnant again. I went in a couple of weeks ago, feeling slightly concerned but mostly just slightly irritated at having to go through more medical crap. I fully expected to hear back that there was nothing noteworthy.<br />
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<br />
Instead, I got a call from my doctor's office with the news that the ultrasound had reveled a nodule on my thyroid that was "moderately concerning." I was referred to an endocrinologist and was told I needed a biopsy. "Did she just say 'biopsy'?" I wondered. <br />
<br />
I was shocked - actually so shocked that I had a hard time concluding the phone call. In a strange fluke Ellie was actually asleep on my chest during that phone call and after I hung up I cried into her hair. For the first time in my life I contemplated the idea of cancer as a real threat that could really happen to me. I thought about how we don't have a will. I thought about how on earth would Ian raise our baby girl by himself? I thought about the future child I wanted to have and wondered if I ever would. I really let my imagination run wild. I kind of freaked out for a few days.<br />
<br />
But, interestingly, after the initial shock wore off I kind of got over it. I thought about everything we had been through with Ellie and decided that God simply would not do that to me. He would not give me cancer after all we have been through the past three years. I'm relying on a strength I did not used to have, a strength that Ellie gave me.<br />
<br />
I am now in the midst of figuring out how to expedite a biopsy (the endocrinologist I was referred to was scheduling for October - no thanks). But for now I choose to believe I already know what the results will be - negative - and hope that the belief will take me far. After all, I believed I could heal Ellie and I did that. Everything else that follows in my life will be small potatoes.Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com1tag:blogger.com,1999:blog-7102726802629322686.post-51337975770363341542012-06-29T11:10:00.000-07:002012-06-29T11:10:20.471-07:00This is what it feels like to have a healthy child<style>
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<div class="MsoNormal">I haven’t written in a long time, which is due to a wide variety of factors, including the fact that Ellie’s given up her nap, which means I’ve lost my regular writing time. But the biggest reason is that I really cannot believe what’s happening. I keep pinching myself. I’ve been taking my glasses off, wiping them, putting them back on and squinting at this situation – trying to tell if I’m seeing it clearly. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">It was less than two months ago that I was sitting in a doctor’s office with a cranky Ellie in my lap, enduring an intake interview with Ellie’s third gastroenterologist. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">“How often would you say she has abdominal pain?” the GI asked me. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">“All the time,” I answered. “Every day. All day. All night. She tells me she has tummy aches all the time.” </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I <i>know</i><span style="font-style: normal;"> I said that, but I can’t believe it. Because Ellie’s all better. <a name='more'></a></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Shortly after that appointment our first shipment of the Canadian drug <a href="http://babygaps.blogspot.com/2012/05/putting-our-hopes-in-ketotifen.html" target="_blank">Ketotifen</a> arrived at our house. We had to get a prescription through Ellie’s allergist (who recommended the drug for situations where <a href="http://babygaps.blogspot.com/2012/04/when-grain-free-diet-isnt-working-look.html" target="_blank">salicylate intolerance</a> or <a href="http://babygaps.blogspot.com/2012/03/uncovering-more-allergies-and-oral.html" target="_blank">Oral Allergy Syndrome</a> are suspected) and ordered it through canadadrugs.com. Best money we ever spent. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">We started giving it to her right away – one tablet with breakfast and one with dinner. We gave it to her for about a week or maybe more without making any changes to her diet. Then we gradually introduced questionable foods and then progressed to trying foods she had actually had positive allergy tests to. It’s been a LOT of trial and error and Ketotifen isn’t a cure-all, but it has made a tremendous difference in our lives. It seems that the protection it provides is growing over time and sometimes something that doesn’t work one day works a couple weeks later. Here are some experiences we’ve had: </div><div class="MsoNormal"><br />
</div><ul style="margin-top: 0in;" type="disc"><li class="MsoNormal">The first thing we tried was an accident. We were at a fairly fancy restaurant and Ellie was excited about these tiny little bowls of sea salt on the table. But by the end of the meal she had a tummy ache and was developing a rash around her mouth. Ian and I were panicking and couldn’t figure out what had gone wrong. Then Ian overheard the waiter telling the table next to us that this special sea salt mix he created contained <a href="http://babygaps.blogspot.com/2012/02/cinnamon-allergy-aha.html" target="_blank">cinnamon</a>. We gave Ellie an extra Ketotifen and the reaction completely went away, including the rash. </li>
<li class="MsoNormal">The other big “fail” was when we were searching for food Ellie could eat at a farmer’s market. I let her try a sample of some grilled salmon without asking about the ingredients, and after it was in her mouth the guy told me it had been marinated in lemon and orange. That night she vomited big time. It was really sad. </li>
<li class="MsoNormal">Just the other day I got bold and added spinach (Ellie’s allergic) to a green smoothie and she almost instantly had a terrible tummy ache. Again, I gave her an extra Ketotifen and she recovered in minutes. </li>
<li class="MsoNormal">Beyond those three memorable bad moments, Ellie has essentially not had a tummy ache in weeks. Like I can’t even really remember what it was like for her to be having stomach aches all the time. She sleeps through the night - all night, every night - where before the Ketotifen she would wake with a tummy ache and need to be held almost every night. </li>
<li class="MsoNormal">She is still protective of herself and won’t eat foods that are questionable to her. I made a rice pasta recently with chicken and mixed veggies (including peppers, which were new) and she wouldn’t touch any of it. Note to self: Ellie’s not ready for peppers. </li>
<li class="MsoNormal">The first time we trialed bananas she had a tummy ache and developed sores around her mouth (symptoms of Oral Allergy Syndrome). We took a step back and tried cooked bananas per her allergist’s advice (cooking a food denatures the proteins that activate Oral Allergy Syndrome reactions) and they were fine. Since then we’ve re-re-introduced raw bananas and they’ve been fine.</li>
<li class="MsoNormal">We have been able to expand her diet exponentially. I think before Ketofien she was on a list of about 28 foods. There’s no list anymore. We’ve successfully added foods as varied as mangoes, broccoli, bananas, kale, rice, buckwheat, sunflower seed butter, tomatoes, potatoes, coconut milk, strawberries, raspberries, blueberries and the list goes on and on and on. Goat cheese! That’s right – I said goat cheese, people. </li>
<li class="MsoNormal">As a result of this massive expansion Ellie’s eaten her first cookie, had her first muffin and mowed her way through more than one basket of In-n-Out French fries.</li>
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</div><div class="MsoNormal">There are quite a few of her allergic foods that we haven’t bothered to try because we’re just too busy enjoying how great things are going. So I can’t report that Ketotifen has made it possible for Ellie to eat all the foods she’s allergic to. We’ve got lots of foods still on the “to try” list, including all spices, eggs, celery, parsley etc. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">And there are other foods that I don’t envision us ever eating again. I will never feed my family gluten again. I’ll also never feed my family cane sugar. I imagine Ellie and I will probably have to stay egg-free longterm. I no longer really view soy as food. And I can live without dairy (though the occasional snack of goat cheese has been nice!). We’re no longer grain-free and I’m really excited about that development and hope we can all maintain our health on the much more liberal gluten-free path, rather than the grain-free path.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Of course life with a kiddo with complex issues like this is never very black and white, and I wanted to share that right about the same time we started Ketotifen I read a book about Irritable Bowel Syndrome (IBS). The book advocated the use of lots of soluble fiber in the diet to alleviate IBS symptoms. Sources of soluble fiber include all grains, starchy vegetables and some fruits. (The book advocates eating wheat, which I find mind-blowing considering there’s such a strong connection between gluten intolerance and IBS, but I left that piece of advice aside.) Since things were going so poorly I figured we had nothing to loose and started feeding Ellie rice. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Adding grains to her diet made a tremendous positive impact. As I’ve said before, I’m reluctant to go into poop details but let’s just say the addition of grains helped a ton in that department. Anyone with IBS symptoms can probably figure out what I’m talking about. I was shocked that not only did adding grains not cause any problems, but that it actually seemed to be helping. Since then we’ve added buckwheat flour and gluten-free oats and they’ve been a really great addition. I guess Ellie’s body was just done with the grain-free diet and ready to move on. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I’m pretty sure there’s no way I could put into words how happy I am right now. I think if I could totally convince myself that this was really happening, that we had really made it, that we were out of the woods I would just burst into tears of joy. But that moment hasn’t happened yet. I’m still holding my breath, I guess. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">It’s also hard to put into words how happy Ellie is. She’s only two (nearly three!) and it’s been hard for me to perceive how much she understood about this situation. But she <i>definitely</i><span style="font-style: normal;"> knows things have changed. She gets so excited when we bake cookies or have pancakes for breakfast. “YAY! PANCAKES! I LOVE PANCAKES!” She knows that she ate strawberries last summer, hasn’t been able to since, and is now eating them again. The simple joy of a toddler eating a fresh strawberry is incredible. She’s not just excited about food, though. She’s just happier. She has more energy. She’s more engaged in her play. She’s growing like crazy. Between the beginning of May and the beginning of June she gained 1.5 pounds! </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I could go on, but I think you get it. Things are really good. My baby is healthy. It took 3 years, but here we are. </div><div class="MsoNormal"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiSFD4FhRic0NrZYpETEw2IshnzKkugvOYBdW5VPUv8KZ8MOMwndgO0zJqrkjftwn-qCWwFK8MDgptI4c4sHPI8wmPUMQqMgSKD48ZN_60rNbUX3xGiE2BAWHhB6Srb_X4vrHR0APNaQE/s1600/IMG_5582.JPG.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiSFD4FhRic0NrZYpETEw2IshnzKkugvOYBdW5VPUv8KZ8MOMwndgO0zJqrkjftwn-qCWwFK8MDgptI4c4sHPI8wmPUMQqMgSKD48ZN_60rNbUX3xGiE2BAWHhB6Srb_X4vrHR0APNaQE/s320/IMG_5582.JPG.jpg" width="320" /></a></div><div class="MsoNormal"><br />
</div>Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com7tag:blogger.com,1999:blog-7102726802629322686.post-79089015036984446772012-05-09T13:54:00.000-07:002012-05-09T13:55:58.524-07:00What 7 days as a vegan taught me about life<style>
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<i>I've been meaning to write this post for a few weeks now, and this is the perfect time to share. It's about self-care for us mamas with a kiddo in a challenging health situation, and just in time for Mother's Day! How can you prioritize taking care of yourself - can you find the space in your life for a little self-care? </i></div>
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Recently I underwent a weeklong cleanse. What on earth was I thinking!?! </div>
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I’m a busy mama taking care
of a 2-year-old with a really confusing set of symptoms and food allergies. The
nutritionist we have worked with for over a year now offers <a href="http://trulyfoodpdx.com/" target="_blank">seasonal cleanses</a>
as part of her practice. Each cleanse focuses on detoxing and supporting a
particular organ and each time a cleanse has rolled around I’ve been equally
interested and skeptical and 100% sure I was not up for it. But this spring
I’ve felt a gathering strength as I’ve gradually gotten a handle on my adrenal
fatigue and Hashimoto’s. </div>
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As part of my treatment plan I had started taking sublingual
progesterone and ever since then had been seeing my weight tick up higher and
higher and my belly fat poke out a little farther. I’m not overweight by any
means, but I’ve grown a little fond of the trim physique I’ve acquired eating
Paleo and wasn’t happy about the chub. Well it turns out that Andrea’s spring
cleanse focuses on the liver, and the liver is essential for detoxifying excess
hormones from your body. And since eating a lot of meat – which I do – can be
hard on the liver, I decided it deserved a break. </div>
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Now, just to clarify, this was not one of those cleanses
where I only drank lemon water with cayenne pepper sprinkled in or whatever
some crazy cleansers do. The protocol was vegan, which wasn’t too much of a
stretch for me since I don’t do dairy or eggs. But giving up meat for a week
was truly an adjustment and I really did have to learn a whole new way of
eating. </div>
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What did I eat? I got asked that a lot during the week from
more than one worried friend and family member who was perhaps concerned I'd had taken my crazy food stuff off the deep end. Well, I ate a TON of
vegetables. I ate quite a bit of fruit – more than is normal for me. And I ate
some stuff made with seeds – no nuts. That was it! I don’t intend this as an
infomercial for Andrea’s cleanses, but it was actually really great because I
got menu suggestions, 40 pages of recipes and online support for the week. I
definitely don’t think I could have done a cleanse without all that support! </div>
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So, how did it go? I’m not going to lie – the first bit was
rough. On days one and two I was so dang hungry I just felt like I was eating
all the time. I did not take the time to prep foods in advance (that would have
been a good idea!) so on day one I just had to hit the ground running and
figure things out as I went. Then on days three and four I felt a little
crummy. I didn’t experience a massive detox like some of the others on the message
board, but I had some quirky stuff happening like muscle tension, serious
fatigue, etc. I think honestly I survived it so well because my diet was so
clean to begin with. I can only imagine how crappy it would feel to go off
gluten, dairy, grains, sugar, caffeine, etc. all at once. I did that over the course of about a year and <i>that</i> felt terrible! </div>
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Then at about day 5 it was like I crossed over some magical
cleanse bridge and the other side was awesome! I felt incredibly energetic,
optimistic, buoyant, happy – you name it! I felt great physically and I felt
great emotionally. I had terrific new perspective on Ellie’s health and life in
general. Amazing that food can do all that, huh? </div>
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The cleanse included a few hiccoughs for me where I ate
something that was allowed on the cleanse protocol, but not on my own personal
food path. I convinced myself that if it was ok on the cleanse, it would be ok
for me! Wrong! For example mangoes are simply not my friend – too high
glycemic for me. Lesson learned.</div>
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As the cleanse came to a close I definitely was ready to
start eating meat again. But 7 days as a vegan gave me pause as I evaluated how
meat-heavy my diet had become. I had been eating meat 3 meals a day, and pretty
big quantities of it. Interestingly I had read in <i>Primal Body, Primal Mind</i> that
the ideal portion of meat is about 2 ounces at a meal and I had always thought
that was way too little! But since the cleanse I have eaten much smaller
portions and found I’m equally satisfied and don’t feel as sluggish after
eating. I am eating a lot more vegetables even now. </div>
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Undertaking a cleanse while also maintaining Ellie’s diet
was no easy feat, and it was challenging for me to explain to her that mama’s
food and Ellie’s food were going to be really different for a week. But
ultimately I am so glad I did it. I’m so glad I took that time to take care of
myself. The cleanse was like hitting a huge reset button for myself, and gave
me a great opportunity to re-evaluate how foods that were regulars in my diet
are or are not serving me. I’ve discovered since then, for example, that I
cannot handle cacao right now. Too draining on my adrenals. So I’m swapping out
carob and feeling so much better. </div>
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And how about that progesterone that caused me to do this in
the first place? It served its purpose, and now I’m weaning myself off of it. </div>
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The big lesson I learned from that week was that I really
can take time to make foods that are going to best serve me. It’s OK for Ellie
to have sausage and yams for breakfast and for me to make myself a green
smoothie. I learned that the better I take care of myself, the better I can
take care of her. </div>Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com0tag:blogger.com,1999:blog-7102726802629322686.post-54324700492974770852012-05-01T15:26:00.000-07:002012-05-01T15:28:25.799-07:00Putting our hopes in KetotifenBack when we started our SCD/GAPS adventure I really believed food could fix everything. I believed that if we took the right foods out and put the right foods in that we were guaranteed success. I was wrong.<br />
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A lot of people behind GAPS, the Weston A. Price approach, the raw food movement - whatever! - push the idea that food truly can heal all that ails you. And that's just not true for everyone. Believe me, I've tried.<br />
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There is something about Ellie's system that causes it to react to whatever she's eating. So we trial dairy and it seems fine, and then one day dairy's no good anymore. Ditto for grains, or soy, or whatever. Finally we got her on a very, very clean diet comprised primarily of meat, vegetables and limited fruit and what happened? She started reacting to fruits and vegetables. The explanation in GAPS is that in a situation like this we need to heal Ellie's gut with bone broths and fermented foods and a high-fat diet. Well, we tried that and we landed here anyway.<br />
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I am 99.9% sure Ellie has a sensitivity to salicylates, a theory first proposed by her mainstream allergist. We did a salicylate elimination diet last month, which produced huge improvements for her, and now I am tinkering with bringing some high salicylate foods back into her diet and every time it's a mess. She reacts with symptoms like: bright red cheeks, tummy aches, sudden urges to go pee but then unable to actually pee, wetting her pants, acting hyper and generally fussy. Yesterday I went back to strict salicylate elimination and our day was a dream - she played independently, had no trouble with the potty and was so warm and fun and affectionate.<br />
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Back when I thought food could fix everything I really shunned mainstream medicine. I felt I had been really betrayed by the doctors who were looking after Ellie in the first year and a half of her life (before we switched insurance and I made a big change to her medical care). I felt like I had "tried that" and found Western medicine to be so terribly lacking that it wasn't even worth using anymore.<br />
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That's all fine and well and some people can get all the treatment they need using naturopathic care and homeopathic medicine, but when things aren't working sometimes you have to take a leap.<br />
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I simply refuse to live in a world where my daughter cannot eat healthy foods like celery, carrots, parsley, lemons or almonds. I'm not willing to wait any longer while I have to deprive my child of produce. It's produce, for God's sake! It's not Twinkies and Sour Patch Kids!<br />
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So we made the decision to trial a drug called Ketotifen. In the form used for gastrointestinal allergic reactions, Ketotifen is not sold in the United States - we had to order it from CanadaDrugs.com, which I find hilarious.<br />
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What is Ketotifen? It's an anti-histamine and a mast cell stabilizer. I'm not an expert on the science, but I believe Ketotifen works to stop immediate allergic reactions via the anti-histamine but also supports the body stabilize an out-of-whack immune response by helping cells not to release so much damn histamine in the first place. Interestingly, Ketotifen is also reported to help generally with IBS symptoms, which could be an added bonus.<br />
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From the research I've done it looks like there have been at least two studies on the use of Ketotifen to treat GI-based allergic reactions and the results seem promising. <a href="http://www.ncbi.nlm.nih.gov/pubmed/7457290">This study</a> used Ketotifen in people who had gut-based symptoms when consuming certain foods, and 66% of the study participants had no symptoms when consuming the allergic food after using Ketotifen. <a href="http://www.ncbi.nlm.nih.gov/pubmed/3103406">This study</a> used exclusively pediatric participants, and found that after a trial period of Ketotifen 10 out of the 17 kids had zero reaction to their food allergens. Amazing!!!<br />
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I also found <a href="http://salicylatesensitivity.com/forum/comments.php?DiscussionID=1644">this thread</a>, with a lot of testimonials from people with salicylate sensitivity who have found partial or total relief using Ketotifen.<br />
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Ian and I thought a lot about whether to give Ellie a pharmaceutical. We recently tried <a href="http://babygaps.blogspot.com/2012/03/fresh-food-allergy-testing-going-off.html">Singulair</a> and it did not go well. It sounds like the potential side effects of Ketotifen primarily include fatigue and weigh gain, which are just not very scary side effect for a very busy and quite trim toddler. :) We decided the potential pros far outweigh the potential cons. <br />
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I am really, really excited about the possibilities here. I'm trying not to get too worked up (remembering that 7 out of those 17 kids still did react to their trigger foods). But this is very promising stuff. The Ketotifen is en route to our house and my hope is that it will unlock the door to an expanded diet for Ellie. <br />
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Of course with Ellie nothing is ever this cut and dried. I have tried feeding Ellie some pear, which is like THE one fruit you can have on salicylate elimination and the pear made her very sick. Which brings me back to the theory of fructose malabsorption. So my current theory is that Ellie has two main challenges: salicylate intolerance and fructose malabsorption. (There's a <a href="http://theprimalparent.com/2012/03/31/ibs-depression-skin-fructose-malabsorption/">great post</a> about fructose malabsorption on The Primal Parent if you've never heard of this condition.) We go in to see a new Gastroenterologist tomorrow, who is supposed to be a whiz in diagnosing fructose malabsorption.<br />
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My great hope is that we're on the verge of figuring this all out. I still hold out hope for a day that Ellie doesn't have a tummy ache. One step at a time...Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com13tag:blogger.com,1999:blog-7102726802629322686.post-70726753403700584702012-04-13T09:50:00.002-07:002012-04-13T09:55:46.673-07:00When a grain-free diet isn’t working, look to salicylates<style>
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<div class="MsoNormal">Over the course of the past month or so we’ve done some skin prick testing that has revealed some surprising food allergies for Ellie. She’s tested positive for allergies to: parsley, spinach, celery, carrots, lemon, grapefruit, walnuts, cinnamon, cod, bananas and oysters. Ellie’s allergist made a comment that perhaps Ellie was sensitive to salicylates, since many of the foods she tested positive for are high in salicylates. Some of the other foods are high in amines, another food chemical. It seems that often times if a person is sensitive to salicylates, or amines, they are also sensitive to the other. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I had never heard of salicylates and didn’t think much of the comment for days, feeling overwhelmed at the task of removing all these foods from Ellie’s already very limited diet. (Some foods had been removed long ago, but others were still a huge part of her diet.) </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">But time went on and Ellie continued having the same reaction to a variety of food. On two days I fed her raspberries, which she hadn’t had since last summer, and she became crazy hyperactive, had bright red flushed cheeks and was suddenly fussy and clingy. Another day I gave her some cherry tomatoes and the same reaction happened. I gave her some freeze-dried blueberries another day and – again – same reaction. I tried giving Ellie a homeopathic nasal spray of <a href="http://en.wikipedia.org/wiki/Quercetin">quercetin</a>, which is a natural chemical found in foods and is believed to help support the immune system and suppress allergy symptoms. Well I found out the hard way that this type of quercetin is often sourced from parsley and citrus, which are very high in salicylates, and Ellie had the same. damn. reaction.</div><a name='more'></a><br />
<div class="MsoNormal">I also noticed that as I pared back on high salicylate foods Ellie begged for the few high salicylate foods that remained in her diet. Several mornings she threw tearful fits for blueberries, which is very out of character for her. I’ve always found that food she begs for are very likely causing problems. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Interestingly, I noticed at the same time that Ellie was starting to be extremely self-limiting about other foods. She started refusing greens, cauliflower, zucchini, asparagus and butternut squash and frequently told me those foods made her lips hurt. In fact lip symptoms have been a big problem for months, with Ellie frequently pulling at her lips to the point of removing skin. One day she was eating a homemade sundried tomato flax cracker and her upper lip became swollen in a massive blister. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Finally after several days of blueberry fits I Googled “salicylate sensitivity” and found a lot of <a href="http://fedup.com.au/">great resources</a>. There's a great list of <a href="http://salicylatesensitivity.com/about/food-guide/">foods here</a>. (What did moms do before Google???) The more I read the more something clicked and I realized this all made sense. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">The fact is, the GAPS diet never worked for Ellie. Neither did the Specific Carbohydrate Diet. And neither has this self-invented Paleo-ish diet we were working with. I found a book on Amazon called “Salicylate Intolerance and The Healthier I Ate the Sicker I Got.” This resonates with me very much. I couldn’t understand why this tremendously healthy diet I was feeding Ellie was still making her sick. While I don’t believe Salicylate intolerance is the only mechanism operating here, I do believe it was a major missing piece of the puzzle. For example, pears are “safe” on the salicylate-amine elimination diet, but they made Ellie very sick to her stomach, which is yet another confirmation of my suspicion that she has <a href="http://en.wikipedia.org/wiki/Fructose_malabsorption">fructose malabsorption</a>. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I see now why spinach would make my child have horrible stomachaches (salicylates). I see now why bananas made her sick to her stomach (amines). There was a part of me that thought I was crazy, that these connections could not be real. I can’t tell you how many times I mentioned to someone that spinach (or another healthy food) made Ellie sick and they’d look at me cross-eyed, not able to disguise their confusion and disbelief. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">This understanding also helps explain incidents way back to our nursing days, like why Ellie would become so hyperactive at night to the point that she’d <a href="http://fedup.com.au/factsheets/symptom-factsheets/head-banging">slam her head</a> into her crib or our headboard when I would consume lots of honey (honey is very high in salicylates). For those who are familiar with salicylates it seems it’s common to have the misunderstanding that they’re only associated with hyperactive, ADHD-type behavior. No one has ever been able to explain why - for example - eating oranges makes Ellie <a href="http://fedup.com.au/factsheets/symptom-factsheets/bedwetting">pee her pants</a>, when this is not normally a problem for her. But I’m reading (and finding in our own experience) that salicylates contribute to problems as varied as <a href="http://fedup.com.au/factsheets/symptom-factsheets/sleep-disturbance-and-insomnia">insomnia</a>, anxiety (in a 2-year-old that comes across as fear of monsters), and a host of stomach problems that get tossed in that catchall term: <a href="http://fedup.com.au/factsheets/symptom-factsheets/irritable-bowel-symptoms-ibs">IBS</a>. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">So about two weeks ago I put Ellie on an elimination diet to cut out salicylates and amines. (While traveling, of course. Nothing spells fun like traveling with a toddler going through intense detox.) This has been a daunting task, because the diet as prescribed assumes you are eating grains, dairy and eggs, which we are not, so our food list got quite short. Unfortunately some of the “safe” vegetables for the elimination diet don’t agree with her for other reasons – potatoes give her frightening arthritis-type symptoms and cabbage causes serious tummy aches. Essentially Ellie’s diet got pared back to meat, stock, rutabagas, Brussels sprouts, green beans, onions and cashews. This was not a list I felt very comfortable with, and I only kept to it for about a week since it was so restricted. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Ellie went through a massive detox. She was quite fussy and needed a lot of help at night, to the point where we just started co-sleeping. She had digestive upset that I won’t go into since she’ll be a teenager and read this online someday. “I feel crummy all over,” was her description. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">After about a week I slowly started adding foods back in. Mostly I’ve stuck to foods that fall in the low- or medium- salicylate category. The few times I’ve fed her something from the “high” list I’ve regretted it. Since going on this elimination diet I’ve tried pushing Ellie’s diet in other directions – adding duck eggs and rice – and none of it’s worked. So we’re back to sticking with the basics and hoping it’s enough. I remind myself that many a primitive toddler survived on meat and limited produce just fine. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">So we’re in a place of not knowing. I don’t know if this salicylate-amine elimination will need to be a long-term approach for Ellie or if we’ll be able to gradually bring those fruits and vegetables back in. If I had a penny for every time I’ve been asked “will she grow out of it?” I’d be a rich woman. And in many ways we don’t yet understand what “it” is. Does Ellie really have true allergies to such innocuous foods as carrots and lemons? Well, yes, but it’s also her body’s way of giving us a signal that there is a bigger underlying problem. Hopefully the better I can understand the underlying issues; the better I can help her. And maybe someday we’ll get through an entire day without a tummy ache. </div>Anniehttp://www.blogger.com/profile/09919400970855348475noreply@blogger.com12