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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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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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