If you have extreme gluten sensitivity and are wondering why you’re having issues that seem outside of celiac disease or non-celiac gluten sensitivity, it might be worth exploring other causes. One such cause may be allergic reactions to wheat, barley, and/or rye.
Over time, I began having more and more noticeable symptoms to smaller and smaller traces of gluten, and they began to occur more and more frequently. I also noticed that my symptoms were hitting sooner and sooner after exposure, well before any food had a chance to hit my intestines. I began to wonder if something other than (or in addition to) celiac disease or non-celiac gluten sensitivity might be going on. Many times I would go online to research food allergies and food intolerance. I would get frustrated reading about these conditions because it didn’t seem like what I was experiencing lined up with either of them. Everything about food allergy seemed to fit except for the symptoms. I never had swelling or hives. I never felt like my throat was closing. I never felt lightheaded and dizzy, as if I would pass out, although I did feel as if I were having episodes of vertigo. I didn’t have the typical gastrointestinal symptoms like vomiting and diarrhea. In fact, my primary gastrointestinal symptom was constipation. The other symptom I had, besides the vertigo, was a “lead-weight” feeling as if I could not move or would have a very difficult time moving my body. Nothing at all about food intolerance seemed to fit. A lot of what I read about food intolerance indicated that a small amount of the food could be eaten and that symptoms would occur when a certain threshold was reached. Reacting to small traces of residue picked up from a surface seemed like a ridiculously low threshold to me. Also, in some cases of food intolerance, after a period of time of avoiding the food, the food could be successfully reintroduced into the diet. That certainly didn’t seem to be true in my case either since I’ve had more frequent known exposures to very trace amounts and more noticeable symptoms from smaller and smaller amounts over time. There’s no way I’d be able to reintroduce wheat and gluten-containing foods back into my diet. My research just wasn’t leading me anywhere, so I just continued taking things one day at a time and dealing with sources of exposure as I came across them.
A huge turning-point in trying to figure out what in the world was wrong with me was learning that antihistamines helped with my symptoms. I never even thought about trying antihistamines to see if I might be dealing with a food allergy until the beginning of this year. I’d always used antihistamines to help with my seasonal “hay fever” allergies but never even considered that they could be used to treat symptoms of food allergy reactions as well. My gastroenterologist gave me the idea when I explained to her that I thought my reactions might be allergic in nature, and she suggested that I try taking Zyrtec daily. I decided just to try taking one when I suspected a reaction rather than on a daily basis, and the first time I tried it, I noticed that it helped. Benadryl made an even bigger difference. After discovering the connection between antihistamines and the resolution of my symptoms, I sought allergy testing for wheat, for which the results came back with a not-so-convincing low positive. I got a low positive result with wheat twice and equivocal results with barley and rye once. After researching low positive and equivocal results heavily, I realized that allergic reactions to foods can still happen even if the results are that low. While I could still have celiac disease or non-celiac gluten sensitivity, I definitely believe I have an allergy to wheat and possibly to the other gluten grains as well. It’s been a little difficult to convince myself of that fact with the test results I have and with the fact that other causes could be at play as well, like histamine intolerance. I really don’t think I have histamine intolerance, and neither does my gastroenterologist. She believes I have food allergies as well and was glad I was able to get a prescription for an Epi-Pen. Time and time again I’ve been able to observe the Benadryl helping with symptoms, and almost every time I’ve had symptoms, I could pinpoint something that could have been the source of trace exposure. Many times I’ve had meals or snacks with foods containing high amounts of histamine, and I haven’t noticed issues with them. I eat leftovers all the time as well and have not noticed problems just with eating leftover food. When I discuss my food issues with others now, I tell them that I’m allergic to wheat and possibly to the other gluten grains and no longer feel like it’s a lie or not the complete truth like I used to feel.
If you’re experiencing symptoms from extremely low traces of gluten, take stock of how quickly you notice reactions. If it’s within minutes, well before any food has a chance to make it to your intestines, you could very well be dealing with an allergy. I could definitely notice symptoms within minutes of ingesting a contaminated food item, sometimes in mere moments. Also, try experimenting with an antihistamine. Take one when you suspect symptoms of a reaction and see if it helps you feel better. You may want to try several times just to rule out coincidence.
There were times when I thought that feeling better after taking an antihistamine could have been a coincidence, but it’s happened so many times now that I’ve ruled out any possibility of it being a coincidence. If you suspect that you may be dealing with an allergy to one or more of the gluten grains, see an allergist to get tested. He or she can confirm an allergy and prescribe you Epi-Pens in case you develop anaphylactic reactions in the future, which can develop at any time and have the potential to be deadly. It’s essential that you have the protection available in case it ever happens. I keep my Epi-Pens and Benadryl on me at all times so I can treat symptoms of a reaction that may occur anywhere I happen to be. Fortunately I’ve not had to use my Epi-Pens yet, but I’m thankful to have them available in case I ever do need them.
What I described above is the steps I took to determine whether or not I was dealing with allergic food reactions. It may not fit your situation at all, and you may need to do something different. Please consult with your doctor about any questions you may have about your particular health situation. However, I hope that my journey to discover that I was dealing with food allergies may help you or someone else you know figure out the cause of your (or his/her) extreme gluten sensitivity if it’s something outside of celiac disease or non-celiac gluten sensitivity. Having a food allergy diagnosis if one exists is important in order to have protection if anaphylactic reactions ever occur. Only a doctor can prescribe Epi-Pens, and he/she should give you a prescription if you’ve been diagnosed with food allergies, or you can ask for a prescription.
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