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Another Awful Reaction To Gluten Challenge

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This forum is such a wonderful source of information! I am so glad to have finally found it, and especially grateful to people who have come back and posted their outcomes later so that others could see how things ended up.


I’m having an awful response to a gluten challenge, and I know that many others had the same experience. My question is: does the immediate and dramatic resurgence of symptoms when returning to gluten after just 12 days gluten-free make it more likely to get positive test results?


I am 37 years old and am meeting with a new doctor next week to discuss celiac testing. I've always felt sick after eating bread and have avoided it, but over the years I've normally eaten some gluten on most days, and significant amounts (usually pasta or bagels) once or twice a week. Since January, I reduced my wheat intake further after equivocal allergy tests (which eventually showed a clear negative for wheat allergy). A whole life's worth of symptoms improved dramatically. At that point I still had small amounts of gluten most days in soups or cereals, and I was eating baked goods with some barley flour. A few weeks ago I tried a strict gluten-free diet for just under two weeks. When I reintroduced gluten, I had an immediate resurgence of nausea, diarrhea, itchy and raw rash covering my whole scalp, insomnia, SI joint pain, swollen lymph nodes, and extreme irritability. This was after just 12 days fully gluten-free! My original symptoms seemed much worse (or at least more immediate) after I briefly stopped eating gluten and then returned to it.


I am very determined to keep eating some gluten every day until I see my doctor in nine days. My four-year-old daughter has the same symptoms I had as a child, and a host of specialists (pediatrician, neurologist, pediatric GI, allergist) have been refusing to take our dietary concerns seriously for years. For her sake if not for my own, I really need to know whether I have celiac or not. If I do, I will make them test my daughter! She is still eating gluten.


However, this gluten challenge is so awful that I can hardly stand it. And it’s particularly scary because I felt this same way a few years ago, just before I ended up in the ER twice and was finally admitted to the hospital with rapid weight loss, bizarre neurological symptoms, extreme nausea and dizziness, etc. They tested me for everything under the sun (except celiac!) at the time and ruled out MS and dozens of other diseases. I finally figured out on my own that the trigger for my sudden decline was due to taking Ambien CR. But all of the problems had started years before I took it, and have continued ever since. I’m trying to look on the bright side of my current awful reaction…Since the symptoms came back worse after such a short time off gluten, would that be a sign that my body is revved up enough that the tests will pick up any celiac antibodies or intestinal damage that I have? 

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