I like to see black-and-white proof of things I believe to be true in order to confirm my feelings and to prove the correctness of my feelings to others. When telling others about something that’s been done or said, I like to show them proof in an e-mail or some other thing that can be seen or heard. Physical, conclusive proof is important to me for a lot of things, and I struggle hard when I don’t have confirmation of what I think is true. That’s what’s made things so hard for me while dealing with all these food issues. While I know I react to the foods, I have a hard time drawing conclusions about the reason(s) without definitive proof in the form of test results from a doctor or a doctor’s official diagnosis.
I’ve always struggled with not really knowing the root cause of all my food reactions and making sense of inconclusive test results. Celiac disease testing wasn’t really conclusive either way. The blood test and biopsy were both negative, but I tested positive for one of the major genes and have other risk factors like IgA deficiency. The tests are not always accurate. Someone with negative blood work could still have celiac disease. He/she could still have a positive biopsy if the doctor decides to pursue one in spite of negative blood work. When a gastroenterologist is taking tissue samples for the biopsy, he/she may not take enough tissue samples, or he/she may take them from undamaged areas. Celiac disease damage can be patchy. So, I really can’t go on those tests to say that I definitively do not have celiac disease. The gastroenterologist I’m seeing now believes I do have celiac disease, and she said to tell people I have it if it means my dietary needs get taken seriously. However, she can’t officially diagnose me without a positive biopsy. The only way to get a positive biopsy is to go back on gluten to induce the intestinal damage. She and I both know that I could not complete a gluten challenge. She and I both feel I would react severely even to a tiny serving of a gluten-containing food.
I had similar problems with allergy testing. All my skin testing, back in 2012 and earlier this year, was negative. The result of my wheat allergy blood test was a low positive, a Class I result, which hardly seems convincing. The first doctor to check for a wheat allergy via a blood test thought the result was a false positive and even went so far to call it a negative result. The second allergist, while he didn’t say anything was a false positive, did call my results borderline. I had to ask for an Epi-Pen prescription, though, and while I’m glad he granted my request, I don’t think he would have given me one if I had not asked for one. For a long time, I’ve suspected my reactions to foods to be allergies, but I was always thrown by the descriptions of food allergies because my symptoms were not listed with the typical allergy symptoms. Whenever I would read up on food allergies versus food intolerances, I would always end up confused and frustrated, with more questions than answers. Food intolerances just didn’t make sense at all, yet not everything fit with the descriptions of food allergies either. However, having my symptoms alleviated by antihistamines served to bolster the idea that I was suffering from food allergy reactions. Wheat, barley, and rye were equivocal to low positive on allergy testing. Flaxseed was negative, although tests showing high eosinophil counts that went down after removal of flaxseed from my diet confirmed that reaction. Gluten was negative. Vinegar and guar gum could not be tested except through a food challenge, which hardly seemed worth the time and trouble to have done. While I definitely had some sure signs of food allergies, the results just didn’t seem to back up the idea for all my reactive foods, at least not convincingly. I’m currently going on my sensitivity to the tiniest traces and my response to antihistamines as evidence that I have true food allergies instead of intolerances or sensitivities.
I went back to see my gastroenterologist in April. I took my allergy test results with me and told her how much antihistamines, especially Benadryl, helped me feel better when I took them after symptoms of a reaction surfaced. She asked me if I had Epi-Pens, and I told her I did, showing her the ones I always keep with me. I told her I keep Benadryl with me as well. I believe she would have written a prescription for Epi-Pens if I didn’t already have one. She also seemed to suspect that I was dealing with food allergy reactions and not with something like histamine intolerance. She seemed very concerned about what could happen if I was ever exposed to more than just a trace amount of wheat/gluten. In the past, she had always seemed surprised by how little causes symptoms to surface. When looking at my test results, she told me that many doctors would look at those and tell their patients to continue eating gluten, that it’s not a problem for them. She told me to go by how I feel and not worry about the test results. It’s so nice to have a doctor who takes the time to listen to me and who believes me about what I experience and what I think causes my symptoms. She reminded me that I needed to listen to my body and trust my instincts, regardless of the test results.
While it can be hard at times to reconcile what our bodies are telling us with test results and with diagnoses that doctors give or don’t give, it’s important to listen to our bodies and trust our instincts about what is going on with them. I believe I’ve gotten to where I am today by listening to my body, by learning what reactions feel like and when I’m having them, and by trusting my instincts about what my body is telling me and what things may or may not be causing problems for me. It’s been a long, hard, and rocky road, but pieces are falling into place, and I believe I’ve been slowly progressing. Figuring out the food allergy connection and the vitamin/mineral deficiencies have gone a long way in helping me push forward.
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