Saturday, May 28, 2011

Contemplating our way forward

Day 38

It's been a roller coaster ride lately. On Wednesday - optimistic from our recent addition of fish - I fed Ellie green beans and roasted duck (both new additions). She was up in the night with terrible reflux and I felt so discouraged. Then, on Thursday, we had a playdate and I spontaneously decided to feed Ellie (and me) 1/2 a banana with nut butter. I didn't have any food prepared and the kids had brought snacks and I just couldn't bear to let her watch them eat their granola bars and raisins with nothing to eat herself. And - surprisingly - nothing horrible happened. Feeling incredibly restless by dinner that night we decided to make something with red peppers and spices - also new additions - and Ellie did absolutely fine. Yesterday we tried scrambled duck eggs and again they made us both sick. Adding on to all of this - we have been introducing commercial probiotics and S. Boulardii and Ellie has shown zero signs of die off.

All of these things put together have raised some serious questions about the GAPS diet. First it's important to say that I have no doubt that going through Intro has been a helpful and healing experience for us. There's no doubt that GAPS has a lot to offer. But.

A lot of the things that should work are not working. Dairy did not work in any form. I notice that feeding Ellie lots of fat aggravates her reflux. But the book says we should be eating a lot of fat. Juicing totally didn't work for us and I'm afraid to try again. And I'm supposed to be seeing some type of die off showing me that the probiotics are working and I'm seeing nothing. I understand that constipation is common on Intro, and both of us have been suffering from that in spades. We are sick of our food. I knew that doing GAPS Intro would be hard, but at this point I wonder if being this miserable is worth it. Today we were out to lunch and Ellie developed a terrible face rash when the other people at the table squirted lemon into their waters. This shows me we're nowhere near "healing" her food allergies and I wonder how many people have actually healed allergies with this diet.

Of course we've seen improvements. I don't want to make it seem like this has been a failure. For example, since starting SCD in early January we haven't had to give Ellie Benadryl to end a food reaction once. That used to be a common occurrence when she'd be up for hours in the night screaming and cramping.

Yesterday I had a brief phone conversation with the nutrition counselor a local naturopath referred me to. I had filled out a very detailed intake form so she knew Ellie's storied health history. One of the first things she said was this:

"Natasha Campbell McBride is brilliant and I respect her a lot," she said. "But I’m not a fan of the diet at all. Nutrition is like math – there’s more than one root to solve a problem."

Ahhh ... a woman after my own heart. I went on to tell her how awful I have felt since being on SCD and now GAPS (for a total of 139 days now). And about how, while some of Ellie's symptoms have improved, others have not improved or even gotten worse. For example, she started growing well once we started SCD. But her reflux has been absolutely awful, especially since going on Intro.

"That’s no way to live," she said. "Our food should be nurturing us."

She said she believes GAPS is too fatty and not fibrous enough, evidenced by the fact that Ellie and I are experiencing chronic constipation, which was not a problem before going on the diet. 
I am struggling with all of this new information. When I initially read Breaking the Vicious Cycle and Gut and Psychology Syndrome I was nodding the whole time, reading passages aloud to Ian and highlighting a large percentage of each book. These were the first explanations I had read of what was going on with Ellie. Everything about them rang true - her issues with gluten and dairy, her low immune levels, her many and increasing food allergies, her sensitivity to loud sounds, her reflux and stomach cramping, her failure to thrive - it all made sense after reading these books.

So why is it that the diets prescribed in the same books don't seem to be working for us? I believed so completely that I had found the answer to our problems when I read these books. So I'm sitting with this uncertainty. I'm not making any changes, besides progressing through Intro as prescribed in the book (well, as closely as I can get anyway). We have our first full appointment with the nutrition counselor on Wednesday and I look forward to hearing more specifics about what she thinks will work best to heal my baby.


  1. Hi Annie- I thought I'd chime in since it seems like even though me and my son don't have as many food allergies and such we are both going through some difficulties on this diet. I have to ask a few questions because I have also been studying hormones- adrenal and thyroid. What is really amazing about the body is that no one thing works alone, all systems work together, you can't just focus on symptoms or one problem, its all part of a larger picture. Maybe the reason why her gut is not healing and her food allergies are not going away is because she is stressed, she is not producing enough of the good hormones to balance out the stress hormones. I have found this to be the case when switching to a low-carb high fat diet, I was stressing my body out. I have learned through the work of Dr. Ray Peat- a biologist, that our body prefers sugar as our main fuel source. Despite all those low-carb fanatics out there who eat lots of meat and fat (was one of them!), some people just don't do well on that kind of diet! Not to mention that a high protein diet is inflammatory and catabolic. Sugar from fruit and starches from things like potatoes (you can read about this enlightening fact from another failed GAPSter on the GAPS help group about why her husband included potatoes and is a totally different person because of it), increases metabolism, increasing all the good thyroid hormones which will regulate digestion and heal the gut! amazing! I am so thankful I figured that out, I do not do well on meat and veggies, or meat and fat, I need lots of sugar or I feel stressed out, I still eat a protein type diet but I am including more fruit and sugars. If you want to start researching this look up ray peat, or listen to this podcast by a nutritionist who follows him, and the other guy who promotes more of a high sugar and starch kind of diet to increase metabolism and burn fat, but it talks about candida and food allergies, and what kinds of fruit and starches help:

    It is so incredibly enlightening. I know I directed you to a different nutrionist before and I love what he does, but i think he doesn't have the entire picture for all people, when you eat right for your type yes u may feel better, but it may not address hormone imbalances! And did you know if your adrenal glands get stressed that can also result in food allergies? Maybe the intro did help to a certain extent, but it was too stressful? Could you just add in fruit and honey (maybe even potatoes!) and see if that gives her more healing for the time being? Of course just don't take my word for it, do what works, if this is not working then I would not continue on the same path no matter how much you believe in the diet. I hope I didn't overstep, I feel for you so much, its really hard to see a child going through health hardships when I know you've been doing such good things for her.

  2. Hi Annie,

    I hear your frustration and your (very valid) ponderings.

    Of note, it is common for some people to react initially to the higher fat content (some need to start with almost none and work up very slowly), and also quite common for some to show no obvious response to the initial doses of probiotics.

    I don't think Dr Natasha believes in a "one size fits all" approach to healing, and I think this is well reflected in her recent post 'One Man's Meat...' Likewise, I too do not believe that one approach can resolve everything for everyone. (Personally, I present GAPS for those who would like to try it, and for the many, many people for whom it brings incredible recovery.) Because healing -with or without GAPS- is an individual path, it does involve both time and tweaking. Both of these elements can trigger a lot of frustration, for sure.

    I wanted to comment, too, on the idea of a link between fat/fibre proportions and constipation. In my personal and community experience, there is not a conclusive link here. So many people eating the higher fat/higher meat proportions of paleo, early GAPS, etc, have no constipation (after initial die-off). I always have constipation in die-off, and not otherwise, despite eating a lot of fat and meat. Again, on this point too I would refer one to Dr Natasha's 'One Man's Meat' post. ie. I believe each person's optimal proportions are individual, and it is usually through trial and error that these are determined, but that high fat/low fibre is not a constant across the board in the issue of constipation.

    Janelle's post, too, also wonderfully presents more of the nuances that we must all consider in our individual healing journeys.

    With your creativitiy, openness, determination and love for your dear daughter I'm confident you will find the ultimate path for you and for Ellie!

    All my best,

  3. Hello again, I've been researching all day (yes I'm obsessed!), found a good article about food allergies being related to poor digestion or enzyme function:

    You could start giving Ellie the needed digestive enzymes especially since you said she is having trouble digesting fat.

    There is an anecdote in that article regarding someone who got much better after supplementation. Constipation can also be hypothyridism, again you can't just look at diet, you have to look at the whole system, the thyroid is THE powerhouse, if you are not creating enough thyroid hormones your whole body will suffer, including digestion. I guess some people are saying that hormones will self-regulate on this diet, but doesn't give much information about what foods actualy help the thyroid like adequate protein with fruit and coconut oil and minimizing anti-thyroid substances such as soy, fluoride, toxins from pesticides, heavy metals, raw cruciferous veggies, PUFA's from grains, nuts and seeds, fish oil, but can also come from non-organic meats and eggs. Not that you are doing anything wrong, just wanted to mention how important adequate glandular function and minimizing stress is. Alrighty, hope you are doing good! We're all on this journey together.

  4. Janelle and Baden - thanks so much for your support and your suggestions and resources. We are indeed all on this journey together. I'm taking a GAPS mental health day, and I'll start thinking about all these ideas tomorrow.

  5. Hi again Annie,

    Just wanted to say that you again inspired a post over at my blog ("When In Doubt..."). Your ponderings and emotions are shared so clearly in your posts that they really inspire me.

    And I wanted to say here that while three of the opening examples I used overlap with your post, I didn't intend this as pointing to you specifically :) It just happens that three of the issues you are discussing above happen to be ones we hear quite commonly, so served as excellent pieces to start the post from.

    While typing to you here earlier, I felt I wanted to write more in response...and made it all into a blog post, as I know others go through the same as you are presenting.

    Janelle: I'm really excited about your research and thinking, too!


  6. Baden,

    I saw your post and it spoke to me so directly I knew it had to be inspired from what I had written! Thank you so much for all your encouraging, patient, wise words. It's so great to be connected to a mama who's farther down this road than I am and can see things with more clarity.