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About Pagosapig

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  1. The range my Iga test fell in was just at 4%, which from my research sounded like a false positive. And since my biopsies didn't show anything conclusive it makes me think that it is time to look into anything else. I have tried the low fodmap diet and I also found no relief and I have done my best to rule out any common food sensitivities. As far as mast cell activation disorder nothing has shown up like that on my blood tests, but I will definitely bring it up and see if that's a possibility. Since it seems to be nonresponsive I'm curious about the possibilties of something chronic
  2. My doctor did the blood test, but my iga levels were not elevated very much at all. Not in the range you'd expect for celiac. Thats why I am suspisious that this isn't celiac
  3. So my doctor thinks I may have celiac disease, but the longer I am gluten free the less I am convinced. I have been gluten free for almost nine months now and I really haven't had any significant improvement. Initially I had some improved symptoms (but I tend to attribute this to being more deliberate about taking the right medications at the right time). When I stopped taking my medicine (antidepressants and Imodium) my symptoms return. I do eat gluten free, but the foods I eat without terrible D seems to be chicken and peanut butter...which isn't really a good mix for prolonged health. I met with my dietician recently and we tried to make out a list of new foods to try. So naturally I tried following here list to the letter, within 24 hours of trying to introduce more complex foods I had terrible symptoms (prepare for some serious tmi here folks) I had terrible stabbing pains on the left side of my abdomen that have lasted for a week (though have diminished in intensity), fairly consistent diarrhea, nausea, loss of appetite and occasional blood in my stool. Now these didn't seem like celiac to me so I went in to urgent care, they sent me for blood test and a small bowel follow through. I have not heard back from these yet since it’s the weekend. To me these seemed like some kind of IBD, does anybody have any input or words of wisdom about this? It should be noted that my doctor thinks that I have celiac because I have one of the genes that makes it more likely, even though the biopsies they have taken and what they have seen in my colonoscopy/endoscopy have not shown any villi damage.
  4. Thank you all for the input. I thought it seemed early for that diagnosis, I am now waiting for a second endoscopy to see what the change is in my villi. I'll be the first to admit that I'm still getting a hang of getting enough nutrients and minerals on my limited diet. But I did test negative for SIBO and my antibody levels seem to be where they should be. As far as cc I don't eat out and I keep my cooking to specific pans that are specifically gluten free. I will be asking my dietician to help me test for other food intolerances (I know dairy is one for sure!). Is there anything else I should ask about when I go in next?
  5. So I have been gluten free for a little over 8 months now and I am very strict to not cheat and minimize any chances of cross contamination. When I first started the gluten free diet I saw some improvements, but then these stopped and even regressed. I have continued to lose weight and my gut has not been a happy camper. My GI has said that I most likely have refractory celiac disease and expects to do a combination steroids and constant work with my dietician. The point of this being, has anyone had a similar experience and is there anything else I should know or expect?