Once upon a time, in a place far far away, two people had a little girl. The parents had read that early dairy was linked to diabetes, and since diabetes was in both of their families, they kept their little girl away from dairy for her first year. When she was 16 months old, she had a spoonful of yogurt. She vomited almost exactly 24 hours later – a feat she would repeat with any dairy exposure. After a while, she would get green diarrhea instead if the dairy was a hidden ingredient that was overlooked. However, she didn’t appear to react to any dairy her mother (me) ate.
For extra fun, the little girl got rashes from citrus – even in tiny amounts. So we made sure she had a healthy diet without meat (we were vegetarian then), dairy, or citrus.
This little girl grew, and stayed in the higher percentiles for height and the lower percentiles for weight. She was also always on the border of anemia or anemic, even when given supplements. In addition, she had “loose stools”, which the pediatrician said were “normal” for toddlers.
The little girl became a big sister, and her younger sister had no problems with citrus (plus the big sister outgrew her citrus problems). They both needed to stay away from dairy, but that seemed easy as vegetarians – many things were created vegan.
As she aged, the oldest started having a really rough time with tantrums, and would need to be restrained several times a day to keep her from hurting herself or others. When we discussed this with the pediatrician, she said it was all within normal, but she did give us a referral for an allergist and then a naturopath to see if any foods were problematic. The allergist found no official (IgE/blood test/skin prick test) allergies, but said if she reacted to dairy, keep it away from her. The naturopath tested her for Celiac disease, and since that test can give false negatives, also tested her ferratin (iron stores). Her Celiac test came back positive, and her iron stores were 0. At that point, we became gluten-free.
My grandmother took all the gluten-food I had, and then took me on a stock-up shopping trip at the local heath food store. I got a lot of support from a small email list, and started rethinking how to cook. We took out soy at the same time as gluten, following the advice of a lot of people that the proteins in all 3 (dairy, gluten, soy) are incredibly similar, and if the girls were craving soy it could be problematic. (and it was – all they wanted was noodles and tofu for a long time before we changed our diet)
We changed our diet in a massive way – we stopped being vegetarian, cut out gluten and soy, and saw a huge difference within 72 hours. We also added supplements like zinc, fish oil, and enzymes. The children started acting hungry, and gaining (good) weight. They would eat almost anything you put in front of them. The stools were solid within those 72 hours. There were some withdrawl tantrums, but even I could feel a change – I was more relaxed without gluten. Life became much easier in the house – the tantrums were fewer and farther between, life was calmer, even though I was cooking more.
I had blown off the idea of kids reacting by playing with PlayDoh (which contains wheat), but reactions happened within hours of playing with it – tantrums, diarrhea, anger, etc. After that I listened more to what my friends with more experience said – there is a learning curve to cooking like this! Realize that some of your first attempts at “ingredient-free cooking” will end up feeding the birds, squirrels, or dogs. But you will find your comfort zone.
It was into this home that our third child was born – and I swore not to eat dairy, as I had learned that my healing celiac gut could pass the proteins into my milk. Our third child was somehow the most sensitive – she vomited if I ate milk products by accident. She reacted to corn in my diet. Once she outgrew corn, she reacted to eggs. And then she developed full-body hives after eating berries. Then it happened a second time, but much worse. The third time, she reacted to a Strawberry Starburst I had eaten, and then she nursed – within 20 minutes she was covered head-to-toe in hives, becoming lethargic, and having diarrhea – an anaphylactic episode, that thankfully was OK with Benadryl.
We went to a new allergist, and she was tested – positive for berries via the skin prick test, but negative for anything else. The doctor also acknowledged that some reactions were real, but not testable (ie: IgG, IgA reactions), and if she reacted to something, keep it away from her. But the Epi-Pens should be kept near her along with the Benadryl because of the berries.
As time has gone on, we were able to add soy back into our diet, but we use it in moderation. ditto for corn. And I still keep Egg Replacer around for when I make treats for our friends with egg allergies. In the fall of 2007 our family became two households, and in the fall of 2008, we were able to add dairy back into the girls’ diet.
Our family is now “only” free of gluten and berries (strawberries, raspberries, blackberries, etc – blueberries and cranberries are fine and in a different food family). We eat really well, but it is so different from how we were eating 15 years ago. In many ways, we are eating much better, with many more whole foods. The price, though, is convenience. Thankfully, as time goes on more and more restaurants and people are aware of Celiac Disease, Food Allergies, and Food Sensitivities, which makes our lives much easier. There are more and more foods (even “mainstream” foods) being labeled as “gluten-free”. And the new labeling laws are also very helpful when shopping (except for things like strawberries and other non-top-8-allergens).
Please feel free to email me with any questions about our diagnosis saga or anything related to it.