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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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    • trents
      If you have been on a gluten-free diet for four years, all of the testing with the exception of the HLA one, was a waste of time. Not sure why your physician would have even considered it.  But that doesn't explain your ongoing celiac-like symptoms. It's beginning to look like they are being caused by some other medical issues unrelated to a gluten disorder. 
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      Thanks for the insight!  It has been a whirlwind...very overwhelming and frustrating at times.  But what you are saying makes sense to me. I have been on a Gluten Free diet for 4 years now Its been suggested to me to get a second opinion  
    • heart390
    • trents
      Sorry for rambling on so much. It was not clear to me from you first post that, although you have known for several years that gluten had been causing you distress, that you had already eliminated it from your diet.
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      Because a close friend has had Celiac for years - I've eliminated gluten after the ER said all I had was a huge pocket of gas several years ago.  The gluten will be my 4th autoimmune disease.  Thanks so much for all your input!!!
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