A new chapter

I don't have cancer.

Phew!

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. :)

So in the midst of that summer craziness I had a biopsy done on my thyroid nodule 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.

Two diets, one life

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.

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.

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).

An unexpected hiccough

It 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.

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.

This is what it feels like to have a healthy child

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.

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.

“How often would you say she has abdominal pain?” the GI asked me.

“All the time,” I answered. “Every day. All day. All night. She tells me she has tummy aches all the time.”

I know I said that, but I can’t believe it. Because Ellie’s all better.

What 7 days as a vegan taught me about life

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?

Recently I underwent a weeklong cleanse. What on earth was I thinking!?! 

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 seasonal cleanses 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.

Putting our hopes in Ketotifen

Back 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.

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.

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.

When a grain-free diet isn’t working, look to salicylates

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.

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.)

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 quercetin, 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.

Fresh food allergy testing, going off allergy meds

Last week I took Ellie in to her allergist's office to do fresh food allergy testing. The way this works is a lot like traditional skin prick allergy testing. First the nurse used the food extracts, taking plastic pins that had been submerged in food extracts and then poking them into Ellie's back. With the extracts, Ellie had positive results for parsley and spinach. Because the results were so clear, we did not follow up with the fresh foods for parsley and spinach.

Next, came the fresh food testing. I had brought in a bunch of foods that I suspected for causing problems for Ellie. I focused on foods that cross-react with birch tree pollen since we've been suspecting Oral Allergy Syndrome, but I also threw in random foods my mama instincts told me were suspicious. It was actually very cute because Ellie was not keen on doing a second round of "pokes" but the nurse encouraged Ellie to poke the pins into the fruits and vegetables which really helped settle her down. With the fresh food testing Ellie tested positive for celery, carrots, lemon, grapefruit.

Making the decision to use allergy medicine

Man we have been through the wringer lately. Ellie has been very ill - up every night for hours on end with tummy aches that we can't seem to fix. We have been keeping her on a very conservative diet and yet she keeps reacting to things that used to be fine. Over the weekend I did more research online about Oral Allergy Syndrome - which her allergist suggested as a possibility on Friday - and I've become convinced that this is an issue for Ellie.

So we were faced with the decision of trying to eliminate all foods from Ellie's diet which can cross-react with environmental allergens like birch tree pollen. This would have included foods like carrots, apples, cucumbers, zucchinis and almonds, which are all critical in her extremely restricted diet. The other option was to try Singulair. Every bone in my body resisted the idea of taking one more food out of Ellie's diet so, yesterday, after a hellish night, I decided to take a leap of faith and try the Singulair. She had a better night last night (up four times, but much much better than hours of screaming). I am feeling very cautiously optimistic.

Uncovering more allergies and Oral Allergy Syndrome

The past few weeks have brought a series of revelations that I'm hopeful will someday soon bring us to a place of healing for Ellie.

How do I sum it all up? The first realization came last month when I realized Ellie was reacting to cinnamon. This opened up a new level of awareness for me that Ellie may have allergies that still have not been identified. I became more observant of symptoms like skin reactions and started to notice some interesting trends.

• For example, Ellie recently was eating some green beans that had been sauteed in garlic and her hands got red and she started asking us to wipe them off over and over again. I put a split garlic clove on her inner arm and she developed a rash. No more garlic ....?
• I had taken Ellie off fermented cod liver oil because I had been giving her cinnamon flavored FCLO. The new order of unflavored oil arrived and she started having tummy aches and was complaining the oil made her lips hurt. No more FCLO .... ?
• A few weekends ago we traveled up to Seattle and in one day Ellie had crab and scallops. That night she was up vomiting for three hours until her poor tummy was completely empty. No more shellfish .... ?

This morning we went back in to Ellie's allergist to see if any of these  problems could be verified by skin prick testing. I came up with a list based on our recent experiences, including the day she got a severe stomach ache from eating a banana, and a random last-minute feeling I had that I should check walnuts.

What's for dinner?

I've been living in limbo this week as we await test results both for myself and Ellie which will help us determine what our next steps will be. After going back and forth about whether to test Ellie for fructose intolerance or small intestine bacteria overgrowth, we decided last week to test for SIBO since it can cause problems with fructose, along with other things Ellie is struggling with (tolerating any fermented foods, for example). And this week I will get news on a stool test and a food intolerance test. I'm not great at waiting, so I've been going a little crazy.

So over the weekend I turned my attention to taking some practical steps to make living with this diet a little easier. I find that I can work myself up every single day trying to figure out what to make for dinner. You would think when the main ingredient options were just meat and vegetables, it would be easy to keep things simple. But somehow that actually causes me to make things more complicated. I think because the ingredients are so simple, I feel compelled to keep our meals very varied so keep boredom at bay. But trying a new recipe every night is not practical, and I realized I needed to create some structure around dinnertime.

Cinnamon Allergy - AHA!

Ellie is allergic to cinnamon. I just figured this out. Here's how it happened.

During our coconut trial this winter Ellie was having a snack - pumpkin "cheesecake" - that she loved. Everytime she ate it, though, she got a red rash around her mouth. And if some cheesecake got on her cheek, a red rash would appear there too. This struck me as odd, and I started to wonder if it was a sign that coconut was not going well. When we pulled the coconut back out of her diet, and therefor pulled the cheesecake - I stopped noticing the rash.

That was until one morning when I gave her a breakfast "porridge" I make her sometimes. It's a mix of ground pumpkin seeds, walnuts, chia seeds, flax seeds, stevia and cinnamon that you pour hot water over and it turns into a yummy, goopy porridge. Well she was eating it and suddenly I noticed that same red rash on her face. How odd. So I compared the two recipes and looked for what they had in common. I decided stevia was the prime suspect, since I had recently read that people with fructose intolerance often can't have stevia and decided to pull that out of her diet.

Reflux explained

In the 2.5 years Ellie has struggled with reflux (among many other digestive symptoms) I've been uniquely perplexed by this symptom. Many nights I wonder - why reflux tonight, and not another night? What was different about today's food?

Western medicine has a very mixed-up understanding of reflux, believing it is caused by too much acidity in the stomach. This explains why we had Ellie on acid-reducing medication for months when she was younger. But it never did any good. And I've talked with lots of other parents with similar stories. I remember a good friend telling me about his little boy who had horrible reflux and was put on medication. "How's the medicine working?" the doctor asked a few weeks later. "Well," my friend cheerfully replied, "at least the vomit smells like bubble gum now!"

Fructose intolerance

The other day I fed Ellie a banana.

We have been eating very limited fruits and when we do have them we primarily eat low-sugar choices like blueberries and apples. But there was a banana lying around the house and Ellie asked for it and I thought, “why not?”

She ate the whole thing up enthusiastically – along with some almond butter – while we were at the park and a warm feeling swelled inside me. I have been really struggling with feeling like Ellie’s diet is far more restricted than necessary right now, and I wanted to believe in my heart that the banana was going to be OK. We had our snack in the park and afterward I pushed Ellie in the swing and then we watched our dog Pepe run around the field. About 30 minutes later, suddenly, Ellie practically doubled over. She looked up at me and said, “Mama, I have a tummy ache.”

Heading back to safe territory

Oh, if only I could learn a lesson in a day, or a week – life would be grand. But sometimes life has to unfold for months or years before I can look back and see the big picture and – if necessary – see where I lost my way.

Over the course of the past couple months we’ve moved away from GAPS and toward the Body Ecology Diet, meaning we added quinoa and buckwheat to the rotation. We also did a coconut trial that went down in flames. My family went through a lot of stress this winter and overall we’ve been on a downward slide since the fall. Ellie’s been complaining of stomachaches on a regular basis (which has frustratingly not been resolved by removing coconut, though she is much improved).

And the last straw was that this past week blood work showed that I am well on my way to being diagnosed with Hashimoto’s. 

Months later, the coconut trial goes down in flames

So, here's what happened.

Here's what we know. Ellie can't digest fats well. She's on two supplement - digestive enzymes and bile salts - that help her body digest fats and even with that she cannot tolerate some foods high in saturated fat, like beef, ghee and coconut. No doctor has ever been able to tell us why this is so, but it is what it is and we work with it.

Knowing all that, and feeling really confident that Ellie had come a long way, we decided to trial coconut in November. I wrote that post, saying that coconut had gone amazing, on Nov. 22. Two days later my grandma had a stroke and two days after that we relocated up to my aunt's house to spend a week with my grandma in Hospice. Our live went into major upheaval mode and the next month included a funeral, family holiday parties, Christmas and a week-long vacation. And over the course of that time Ellie's health fell apart. Suddenly she wasn't sleeping through the night anymore. She was waking up screaming, having terrible reflux, crying and unable to tell me what was wrong, except that she had a tummy ache.