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Intestinal Swelling


lcarter

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lcarter Contributor

It took years for me to be finally diagnosed: As an only child, I had a problem with dairy as an infant, with projectile vomiting after bottle feedings (Mom didn't breast feed), and was continually underweight. I was very sickly growing up with frequent flu like symptoms, yet no doctor suggested food allergies or intolerances all those years. At 27, I became pregnant for the first time. I weighed only 98 lbs at 5'3". So, the ob-gyn told me I needed to gain weight -- he recommended lots of high calory foods which usually seem to involve dairy. I did as told and got so ill they were afraid I would loose the baby. He sent me to a gastroenterologist who said, "oh, you have lactose intolerance, just limit the amount of dairy you ingest." That wasn't the answer! Out of desperation a nurse friend suggested an allergist who was also knowledgable about food problems. It was a long drawn out process -- but this wise, almost retired dr finally figured out that I was milk protein intolerant and could not tolerate even the faintist hint of milk in foods or meds. However...there was still something else which didn't show up on any of his tests. So, I continued to have minor (in comparison) problems thoughout another 15 yrs. It took an emergency trip to the hospital (after eating amost a 1/2 box whole wheat Tiscuits on an airplane flight), in sever pain with the small intestines almost swollen shut, and the surgeon threatening to take out part of my intestines, that it was ever sugested that it could possibly be gluten. A couple of months later I had a repeat experience and took seriously the idea of gluten being the culprit. I went on a gluten free diet imediately. I kept feeling better and better until all my symptoms gradually went away. My gp after a few months did a blood test for celiac when he found out I was eating a gluten free diet--of course, the test was negative. Then, he suggested that I have an endoscopy, but I refused as I knew these tests are not 100%. Besides, what was the point? The diet worked! Fortunately, I have to be such a bear about what I eat because of the dairy protein intolerance, gluten wasn't that hard for me to eliminate as well. It's been over 2 yrs now and I remain absolutely symptom free! :D


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    • julie falco
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    • Jmartes71
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    • Scott Adams
    • Scott Adams
      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
    • Scott Adams
      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
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