11 years ago- colonoscopy: found nothing, declared diarrhea to be due to ibs. Eliminated triggers: dairy, caffiene, high fat. For years- saving grace was carbs. BUT I still had bouts of diarrhea and was never really normal. (Note: stomach was always flat, unless I overate and bm would quickly shrink back stomach).
December 2009- bad abdominal pains: ultrasounds found a bunch of cysts but my doc. said they are not large enough to be causing pain. Weight: 128. (Note: highest in 15 years.)
Feb 2010- people are telling me i look really skinny. Stepped on scale, 120 pounds (lowest weight in 15 years). Horrible stomach distention and pain, No matter what I eat or drink. when I wake up stomach is somewhat flat, but still pudgy. After ingesting anything, it balloons, 2-3 months pregnant / no relief.
Blood- protein levels off, low iron and b12, celiac test just a little off (but not true indicator that I have the disease, I am told).
Colonscopy / endoscopy- biospy for celiac (negative). Found mast cells- h2 allergy cells, which dr said was 'strange'. Said I must just have ibs, and told me to take pepcid for mast cells, but didn't address why I have them.
2nd opinnion- gastroenterolgist said he would have said celiac, but saw biopsy was negative. He was about to dismiss me as ibs and give me pills. Then when I inquired about the mast cells, only then did he actually read my report (and his eyes bulged). He said it appears I might have colitis and put me on pepto for 2 months- then I should call him to give update.
Skin allergy test- minor (level 1) only allergic to corn, walnuts and celery, significant (level 2) fish allergies- I don't even eat fish though
Please help!! I feel like i'm wasting away, and stomach is always in pain and bloated. I am forced to associate eating with pain now.
I went off gluetin for 1 week, and didn't notice results but then ate it again when biopsy was negative. I am planning to go off it again for as long as I can, on my own accord. I feel it is the only hope I have now, but it will be hard because I can't eat any milk product, and high fat foods (beacuse of the ibs) hurt my stomach so I have to eat in moderation.
I would definitely give the gluten free diet a try for at least a month. Just eat protein, fats, veggies and berries. See how it goes. You can't cheat. And by the way, were you gluten free before the biopsy. You have to have been eating gluten for about a month before the biopsy. If you were gluten free before the test, your intestines had time to heal up to some extent. Good luck!
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