An update on Sarah’s elimination diet.

An update on Sarah’s elimination diet.

Over a year ago, I posted about why we started an elimination diet for our daughter, and how we went about it.

The backstory

Read this post for the details, but in a nutshell: 3 of our 4 kids were allergic to milk when they were born, and we thought they all grew out of it around age 3 or so. But our daughters both began experiencing symptoms again at ages 4 and 6, respectively. Sarah, our 6-year-old, soon began having serious tummyaches and headaches (but no histamine reactions, meaning we weren’t dealing with a true allergy) at almost every meal.

After much trial and error, and numerous pediatric consults, we arrived at a diet comprised mostly of whole foods and free of gluten, dairy, soy, and seed oils. Her symptoms disappeared, and we breathed a sigh of relief.

We had a lovely six months free of headaches and tummy troubles, but then the symptoms returned with a vengeance. That’s when we started the elimination diet. The details on what we eliminated, and why, and for how long, are in that same post.

elimination diet list

Where we left off

An elimination diet trims the patient’s diet down to the foods least likely to provoke a reaction, and s-l-o-w-l-y reintroduces other foods one by one, taking note of which foods the patient can tolerate and which ones are out. It was painful, but it worked.

The whole process took several months. When it was over, we had a long list of foods Sarah needed to avoid to stay symptom-free: some we expected, like wheat, soy, and dairy; others surprised us, like lime.

After we had our results, we had no problem keeping Sarah on the plan. If anything, she was over-eager to stick to the limited diet, showing little interest in testing new foods that might provoke the horrible stomach pains.

Sarah still had the occasional adverse reaction to foods I thought should be perfectly safe, which had me wondering if we should consider a full GAPS protocol. We ultimately decided not to strictly follow that plan, although numerous texts and conversations with friends who were walking that road were enormously helpful—both practically and motivationally—as we continued to untangle Sarah’s dietary issues.

Where we are now

Sarah stuck to her restricted diet for almost a year. Physically, she felt great.

But emotionally, it was really hard. I didn’t realize food’s power to bring people together until my daughter couldn’t eat that food. While Sarah was on the elimination diet, we hardly ever ate out (because canola oil is literally unavoidable in many American restaurants). Sharing meals with friends was extremely difficult (unless we were cooking); we even packed up our own vacation food and took it with us (which actually turned out pretty great).

We’ve let Sarah choose for herself what she wants to eat, and when, although at times we’ve reminded her that a certain food might provoke a reaction. Over the holidays, she opted to try a tiny bit of a special dessert at a family gathering, wanting to fully participate in the festivities even if it did mean enduring a reaction.

But nothing happened. No headache, no stomach pains. For days, we waited for a reaction to appear—but the reaction never came.

Emboldened by that success, Sarah started occasionally indulging in special foods for special occasions, always in community. She’d eat a Christmas cookie here, some wedding cake there, a few chips with dip at a potluck. As she gained confidence, she branched out more.

We’ve done a lot of experimenting over many months. As of right now, nothing seems to bother her—as long as the quantities are restrained—except for peanuts.

An update on Sarah's elimination diet | Modern Mrs Darcy

Hypothesizing

Two years ago, Sarah’s food was making her sick every day, and today she can eat almost everything. My theory (and I’m no expert, just a self-educated nutrition junkie) is that her gut was chronically irritated, and the long break from the offending foods allowed her belly to heal. Once healed, she could tolerate those foods more often. My pediatrician concurs, saying she sees it all the time.

This is also the underlying theory of the GAPS protocol: spending months (or years) eating healing foods and avoiding irritating ones allows the digestive system to heal. Our doctor thinks Sarah’s digestive system—for whatever reason—needed healing.

But we’ve been warned that Sarah will only continue to tolerate a wide range of foods if her digestive system stays healthy. Most days, we avoid the foods that have a history of causing her—and so many others—problems. We eat a ton of produce and not much sugar. We drink a whole lot of water and not much of anything else.

The big picture

Compared to a year ago, Sarah can eat almost anything these days. I’m thrilled to be able to put the elimination diet—and it’s resulting restrictions—behind us. (Knock on wood.) But I’m most happy to be able to fully participate in the community aspects of food again: to be able to eat with others without Sarah feeling sick (or without me feeling sick watching Sarah feeling isolated because she can’t eat the food, again).

In all our dietary struggles, the food part has been challenging. But it was the isolation caused by food—or our inability to eat it—that killed me. I never expected that. (Ironically, processing those struggles in community with others who were struggling with dietary issues saved me. We could lament our isolation together, which sounds pretty pathetic, but it helped so much.)

With a history of digestive distress, it’s possible that this is a road we’ll return to in the future. For now, we’re glad to be off it, and my heart goes out to those who are walking it now, especially those who don’t expect to ever to leave it.

I’d love to hear about your experiences with restricted diets, food, and community in comments. 

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46 comments

  1. What a lovely ending to the story (at least for now!)

    I read A Year of No Sugar not too long ago, and she pointed out what you did-that food is a communal thing, and going strictly with no sugar made things difficult on a community level in ways she didn’t expect.

  2. Melinda Stanton says:

    I had a similar story with (true) food allergies– 5 were “over the line” and a ton of others were right underneath, so I almost completely cut out all of them. And you’re right; it makes eating anywhere but your own kitchen very difficult! Eggs, wheat, corn, milk, and yeast are in EVERYTHING! But after a time of elimination, I was retested; lo and behold, no food allergies! I still try to limit, but life is so much easier now. So happy for your happy ending!

  3. I’m so glad we haven’t experienced this. My kids can eat anything — they just don’t, which is frustrating for different reasons. I was reminded of this when we took them to the Netherlands this spring. One thing that makes international travel enjoyable for me, including to way more exotic places than the Netherlands, is that I can and will eat anything. If you’re in a place with reasonably hygiene then it’s just food and most food is pretty good. I hope eventually my kids will learn to see that. I know some don’t. A little after college I was in eastern Europe with some other Americans who complained bitterly about the cold cuts and cheese served for breakfast again, like it had never occurred to them that bacon, eggs, and pancakes were not universal culinary preferences.

  4. Tessa~ says:

    Thank you for sharing this… Seems it would be a strong beacon, for many people, struggling with gut issues. Not only parents and children.

    I have finally learned how to deal with mine. But it took me, way too long, with way too much suffering, to understand and to deal. -sigh-

    Hooray for your daughter! All the best to her, in the future!

    Tessa~

  5. Samantha Ann says:

    My sister suffers from chrones disease and I myself have a digestive disorder that is placed under the category of IBS because they do not know what causes it or why it occurs. A friend of mine suffers from gastro paresis and finds if she calls ahead often times they will be able to accommodate her, particularly if it’s a non-chain restaurant and smaller in size. Mind you, in order to help the restaurant, we’d often go at non-peak hours, eating earlier or later than the masses. I found that this really helped my friend and have started to frequent smaller restaurants that don’t seem to mind customizing my food as well. In reflection of their help, we always leave a fairly generous tip. As she gets older, you might find that stress and lack of sleep (studying for those midterms!) will effect her digestive track. I’ve learned that routine under stress can really ease the symptoms and that a good night sleep is worth a B instead of an A because it means I’ll be able to function. Just a couple things I’ve learned!

  6. Anung says:

    I kind of had something like that when I first went to college. I found out I was mildly anemic but couldn’t take medication to alleviate it. My stomach was completely unbalanced with doctors having no idea what was going on. We changed my diet several times but nothing worked. Then by chance one of my classes went to an Ayurvedic community and after eating their vegetarian and sometimes vegan food for three days everything went back to normal. Now I keep to a flexitarian diet and everything stays good.

  7. Bronwyn Lea says:

    I am so happy for you that you appear to be on the leeward side of this big challenge (knock wood!) Your comment that the hardest part was the emotional and social challenges that being an “other” food eater bring really resonated with me.

    My daughter is a picky eater, and we try to walk the fine line between respecting her sensitivities and tolerances (I suspect she has low grade sensory processing challenges), and yet still encouraging her to eat. I wrote her a light-hearted letter , Dr Seuss style, last year, to try and encourage her to try some new foods. After all is said and done, I don’t her to miss out on the shared life that comes from shared meals.

    Happy for y’all that you have many more shared meals in your future 🙂

  8. Polly says:

    My husband is gluten-free and it sucks. We are a vegetarian household, although he started eating chicken when he’s out or at work, and it’s really challenging to plan and cook meals that he, myself and the kids will all enjoy. Sigh. Food seems really complicated these days.

  9. That has to be so hard for her. I’m an adult and my lesser restrictions are hard for me, it’s so much tougher on a child.

    A few things I’ve done to make it easier:
    -When the bread basket (or other restricted food) comes I choose that moment to take a walk, to the bathroom or to return a text. By the time I’m back everyone has mostly finished eating that item and I don’t have to stare at it.
    -Indulging in something I really love but won’t always buy. If I have to bring my own food to an event that is something I’ll do. Something like a few pieces of smoked salmon or some other dish I really love ( this summer is was Pioneer Woman’s Blueberry Chicken salad, with modifications).

  10. MelissaJoy says:

    My experience with eliminating gluten started 8 years ago when I was diagnosed with an auto immune disorder. Because of the gluten elimination many of my symptoms disappeared and my quality of life improved dramatically. A cross contamination would cause much distress though. The very hard part of this elimination diet was that I already felt isolated geographically so being gf pushed me further into that “special” category. About one month ago, after a long period of meditating and prayer, it was time for me to start reintroducing gluten again. The community isolation (including my own sweet family) was the tipping point. I can’t say I feel physically awesome like I did when I went off gluten but the freedom of choosing has done incredible things to my outlook. I am hopeful that my elimination experience will guide me in a more thoughtful approach to eating and living in community.

  11. Fascinating. We’re still playing with my 2 year old’s diet. Nothing as awful as what you’ve experienced, but she gets nasty diaper rashes (even potty trained!) and eczema all over her legs if she eats wheat. She also throws up after eating anything with coconut in it. At her next doctor’s appointment we’ll get her tested for allergies (my DH forgot to bring it up at the 2 year appointment, which was the earliest the doctor said we could do allergy tests).

    Re: the irritated gut theory, one of my friends had horrific health problems and when nothing the doctors did worked, cutting out gluten helped… for a time. Then the symptoms came back and cutting out dairy helped.. for a time. Then they finally diagnosed it as some kind of arthritis and got her the appropriate treatment and after her gut had a chance to heal (according to her doctor), all of a sudden she had no problems with gluten or dairy anymore and she’s been fine for a few years.

  12. Trina says:

    You hit a nerve here. I so agree with you. Food used to be something we gathered around, now it is something that isolates us. We are not on a restricted diet, but have many friends who are. I’ve make an effort at potlucks and get togethers to bring gluten free or GAPS foods–it is so fun to see the smile on the faces of the kids who need the special food. Your post showed me that this little extra effort is so worth it.

    I’m also really excited to hear that the GAPS diet did indeed help heal Sarah’s gut. I have two other friends who have gone through similar journeys–from kids who were sick and allergic to so much, spending a season on GAPS, then able to add in even highly allergenic foods like gluten. This is so exciting! Congrats, mamma. Good work.

  13. Kirsten says:

    How awful! I was having side pain and was told it was IBS, eat more fiber. Another doctor ordered a colonoscopy, which showed inflamed intestines. Finally I saw a naturopath who ordered a food sensitivity test. It was just a blood draw but tested for 96 foods. The results came back in a scaled system with how I was reacting. Insurance didn’t cover it but it was only $130. Very much worth it and I got the results in two weeks rather than try an elimination diet. I had done Whole 30 previously and expected to feel better with that. Now I know for sure what my food problems are.

    • Katherine S. says:

      Hi Kristen,
      Do you know the name of that blood test? Is it something that you can only get through a naturopath? I had heard of it before, but my doctor is claiming there is no such thing and that he can’t order it. He is also completely dismissing my concerns that food sensitivities are the root of my sons chronic diarrhea. It might be time for a new doctor, but he won’t refer me to a specialist, grrrr.
      Katherine

      • Kirsten says:

        Hi Katherine,

        The test I had done is called FoodStats Antibody Assessment. It was conducted by US BioTek Laboratories in Seattle. I’m sure other facilities do it as well. Because it hasn’t been proven by the FDA, insurance won’t cover it. Still worth it in my opinion. I’m not sure if a regular doctor would have ordered the test for me but since I had just moved to a new city I figured I would give a naturopath a try. So glad I did!

        Hope this helps!

  14. Steph says:

    We’ve been dealing with food issues around here too. I’ve been gluten free since 2006 and am still unable to tolerate it (though I’m much less sensitive to slight cross-contamination, thank goodness). Around the time my daughter turned 4 last fall she was complaining of stomach aches and headaches as well. We’ve been experimenting and eliminating and bringing foods back in. We got really strict for quite a while and saw massive improvement even upon bringing things back which makes me suspicious that it’s a gut healing thing as well. She’s still off gluten and we limit dairy but as long as she drinks plenty of water seems to be doing okay at the moment.

    And you’re right, the social part is the hardest. Being gluten free isn’t so bad because it’s just one thing and people are becoming increasingly aware but when you start adding oils and food colorings, etc. it gets really hard to feel like part of the community.

  15. So wonderful to hear that healing is possible! I’ve been very fortunate to have not only my husband’s support as I’ve converted to a Paleo lifestyle but also the support of my friends and officemates. Maybe its because I’ve approached this change for health reasons (I have RA) rather than weight loss, but without exception everyone has encouraged and never tried to sabatoge!

  16. ed cyzewski says:

    So glad you’ve got this figured out!

    Have you read Notes from a Blue Bike by Tsh Oxenrider? She mentions how her entire family had stomach trouble after returning to America after living overseas for a few years. Many other expats report similar issues.

    • Anne says:

      Yes! I’d forgotten that part. That reminds me of the tv show Survivor (is that still on?) where several of the contestants through the years realized they had issues with gluten or true Celiac after spending a few months eating weird foods (but not twinkies or spaghetti) in the outback or jungle or whatever, and felt pretty fantastic for the first time ever, even though they were borderline starving by the end of their experience. Apparently eating next to nothing feels better than eating foods your body can’t tolerate.

  17. Adrienne says:

    Thank you for sharing your daughter’s journey to intestinal healing. Our son was diagnosed with IBS after a multitude of tests. He is so miserable that he is afraid to eat at another person’s house, go to camp, or the school cafeteria. I’ve even seen him double over after consuming a simple glass of ice water.
    The elimination diet that you tried is much more involved than the one our family practitioner recommended. I will read the GAPS diet book and give it another try. Any further information you choose to share on this subject is greatly appreciated. It is nice to know we are not alone. 🙂

  18. Bonnie says:

    Thank you for sharing this. Two of my boys carry epi pens for nut allergies and one of them is also allergic to dairy (severely) and eggs. We just learned that he’s also allergic to wheat, soy, tomato, and even corn. It’s so nice to hear that he does have a chance of being able to eat some foods again. I’m sure dairy and nuts will always be a danger for him but maybe some of the lesser ones will work out.

  19. Liza says:

    First, I want to say that I’m thrilled for y’all that your daughter was able to heal and is able to eat every day foods. I hope she continues to stay healthy!

    I completely understand the isolation of not being able to fully participate in gatherings centered around food. My son has true allergies to wheat, eggs, and nuts, and I suspect at times that we need to cut out more. It kills me to see him after baseball games, dejected because he can’t eat the snacks everyone else is eating. I always bring something for him, but it’s not the same. I hate school parties because while some parents are great about trying to make sure he’s included, others don’t care.

    For me, the list of foods I can’t eat is growing and continuing to grow. I’m allergic to latex and there are 44 known foods that cause a cross-reaction. There are 10 on the list that I know I can’t eat, but there are a few more that I suspect I need to eliminate. The problem is that all of the things I can’t eat are favorites: avocados, melons, bananas, mango, tomatoes. Wheat is one of them and it’s actually easier for me to say no to wheat than to say no to avocado and mango!

    The problem is that many of these foods are also acidic and can hurt my mouth the same way the oral allergy syndrome does. I’m wondering if avoiding acidic foods could heal my mouth the same way an elimination diet can heal your gut.

  20. Megan says:

    My heart goes out to you, as I know all too well the struggle of having to be hyper careful of every bite that your child eats. My daughter has Crohn’s disease. She is now 16 and was diagnosed at age 10. Digestive disorders make it impossible for some kids to live normal lives. I applaud you for being so patient with her diet and symptoms!! It’s not easy!!

  21. Heather says:

    I read your post this morning and then I was perusing FB and saw this story posted about there being a possible link between antibiotics and food allergies in children http://mic.com/articles/97294/scientists-may-have-discovered-how-to-stop-your-peanut-allergies-for-good?utm_source=huffingtonpost.com&utm_medium=referral&utm_campaign=pubexchange_facebook. It’s interesting and I wonder how it will play out with more studies on it. I’m just thankful that I don’t have to deal with food allergies with my two boys. I’m glad that Sarah is able to partake in foods at gatherings that she wasn’t able to before!

  22. Jill Mello says:

    Thank you for posting. It’s taken many years for us to figure out my baby boys food issues or intolerances. I never understood how horrible they can be until my recent experience with duck eggs. Never having had problems with chicken eggs, I was flummoxed as to what was making me horribly, horribly sick, only to find out that the ducks I lovingly and organically raised for five months were laying eggs that I cannot tolerate at all. Your caring about your daughter and her health is encouraging. Thank you for sharing!

  23. Kim says:

    Your comments about the social and community aspects of a restricted diet are so true. Raising two children with food allergies we run up against this all of the time. It can feel very isolating. Thanks for sharing your family’s experience.

  24. Loved reading your story — we had a similar one. In fact, the food references in Lizzy & Jane came about because I had to “step up my game” in the kitchen and was poring over cookbooks and nutrition books. That is a direct quote, by the way, — the directive from my daughter as I was cooking from a very limited range of options.

    Two years ago, she was having terrible problems and we began to eliminate foods as well. Eliminating dairy and gluten, in the end, has seemed to cure them — and that has changed the way the whole family eats.

    I think it’s true that so many things “hit” our digestive system and we have to be careful to keep them healthy so they can handle it…. Thanks for sharing!

    • Anne says:

      It’s fascinating to hear how real life informs plot points. Thanks for sharing! And I’m so glad your family is in a good place with food now.

  25. gwinne says:

    Glad to hear things are better!

    My daughter was on Neocate as an infant, as even after months of a radical elim diet on my part, she couldn’t tolerate breastmilk. And at age seven she ate an ice cream cone and hasn’t really looked back. She’s not allergic, or intolerant, to anything anymore.

  26. Julie says:

    Yes, yes, yes! I have nursed six kids, and almost all of them have been allergic to something which, in turn, greatly restricted my diet; it is very isolating and lonely. I never realized how much food was a part of everyday life until I couldn’t participate. I’m so encouraged by your story of healing.

  27. Emily Zaino says:

    This post made me cry happy tears! I’ve had horrible allergies and sensitivities throughout my life and have decided to do an elimination diet to once and for all determine what is “wrong”. With this decision I had resigned myself to the knowledge I may not be able to eat my own wedding cake in October this year. This post had me realize that even a little bit may not hurt on my wedding day and has given me hope that I will no go without! Thank you so much!!

  28. Amanda says:

    I have been dealing with food sensitivities for about 10 years now, and by far the worst part of it is trying to eat (preferably well) when traveling or at family gatherings. That is one of the reasons I’ve recently discovered in the last couple years that I LOVE going to Disney World for vacation. The table service resturaunts are great at dealing with allergies & sensativities, and since you can identify specifics while making reservations there aren’t usually to many surprises. I would (and have!) planned vacations there just so I can feel somewhat normal while eating out so much over the course of a vacation!

  29. Rebecca says:

    Thank you so much for this. It is really encouraging to read. My three kids and I have discovered food sensitivities over the last couple of year. It is a lot of work to try to feed everyone the right thing. It worked for a while but now I am not feeling good anymore, even while working hard at eating the right things. If it were just me I think I would throw in the towel. But I don’t want my kids to be in pain.
    I am very encouraged by this post. I am looking at the healing the gut angle of things and really blessed to hear that it has worked for your daughter.

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