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.
In talking with Ellie's allergist again on Monday it sounds like Ellie could have a very extreme case of Oral Allergy Syndrome. In the typical case a person gets symptoms that are mostly just irritating. During pollen season a person can get an itchy mouth and tingling sensation from eating certain raw fruits and vegetables that share nearly identical proteins to the pollen a person is reacting to. But in rare cases a person can a) react to the proteins even if they've been cooked or frozen and b) get not only symptoms in the mouth but also terrible GI symptoms like cramping, stomach upset, diarrhea and even vomiting. This appears to be what's happening with Ellie.
I find this cross-reaction of environmental allergens and foods absolutely fascinating. It's an area I was never aware of and certainly wasn't on the lookout for. For example, scallops share a protein with dust mites. Ellie has vomited twice from eating scallops, and both times we were staying in other people's houses. Several times she's eaten scallops at home and been fine. And she tested negative for a skin prick test for scallops (which of course isn't 100% reliable). But all this leads us to the possibility that Ellie is actually allergic to dust mites, not scallops, and the relationship between the environment and the food exposure is what led her to get sick in those instances. Crazy, right?
I also find it interesting that soy and wheat are cross-reactive with birch tree pollen, and those were two of the earliest foods we removed from our diet.
All of this new information inevitably leads me to re-examine the past and wonder if I did the right things. I looked back in a journal I keep about Ellie and noticed that it was in March - when she was 8 months old - that she suddenly "fell apart." (Not that she was a blissful baby - far from it - but things really really went bad in March.) We had recently finished sleep training her and she was doing amazing - putting herself to sleep at night and sleeping through the night. Then suddenly she was a wreck. No doctor I took her to to (and I took her to A LOT) could explain why. I started pulling foods from her diet, starting with dairy, followed by soy and then through that summer we pulled corn, wheat and eggs (she only had a positive allergy test to eggs). Fast forward to the next March, when Ellie was 20 months old, that the Specific Carbohydrate Diet suddenly "stopped working" and we switched to GAPS. What's the deal with March? Birch tree pollen season begins in February or March in Oregon. So I question myself. I question whether Ellie could have been eating goat yogurt and duck eggs this entire past year and how that would have affected her growth and development.
But I can't berate myself for too long before I think about the fact that we could be starting yet another year of frustrated searching for a new diet that would serve her, without knowing her tummy problems are actually a reaction to environmental allergens. I feel so grateful that I happened to pack a raw carrot for Ellie's allergist appointment last Friday, and that she happened to be eating it while the doctor was in, and protested that her carrot was spicy. Amazing how one moment unlocked the door to all the answers I've been searching for.
Interestingly, Ellie's allergist said that not only can O.A.S. cause gut symptoms, but environmental allergies can cause these problems all on their own. In one study in Sweden, where the season shifts from winter to spring very quickly, allergy patients suddenly started complaining of Irritable Bowl Syndrome symptoms when spring arrived. The study found that the pollen which entered the digestive system through the nose, being swallowed as part of the postnasal drip, was enough to cause IBS symptoms in patients who were very sensitive to birch tree pollen. Crazy. So it's possible that on some days Ellie's tummy problems have nothing at all to do with food.
I think the million dollar question at this point is whether Singulair will allow us to free up Ellie's diet, or if we'll have to avoid O.A.S. foods, in addition to using the Singulair. We are following up with the allergist next week to do fresh food testing, meaning they will poke the pricks into real foods I bring in - rather than processed food extracts - and then prick Ellie's skin and watch for a reaction. If she reacts to a bunch of O.A.S. foods that will give us further confirmation of what we're dealing with, and the severity of the reactions will perhaps guide what foods we truly do need to avoid. So our days of trail and error are probably far from over.