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catarific

Been Tested - Negative But... ?

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I have done the blood work for Celiac - and it came back negative. But, somehow, I think that the results could be a false negative. I still continue to have diarrhea and soft stools (since early September) when I eat any sort of bread or crackers and no longer can eat cookies, pasta, oatmeal, potatoes, rice, etc. Now I know potatoes do not have gluten but it seems that once this all started, it was not just the gluten sensitivity that evolved but also a sensitivity to high fructose. I also have this skin problem(sort of dry spot that sometimes gets inflamed) on a small portion of my butt (had it for years but never really thought much of it until I read more about celiac symptoms). I had been diagnosed with IBS, but somehow, after this really bad bout of either a virus or food poisoning - the actual gluten/wheat intolerance and high fructose intolerance appeared. It almost seems as though that was the target for all these problems. Instead of IBS, could this have been celiac or wheat intolerance all along? I am now going to try going gluten free as well as avoiding high fructose as well.

Could the results of the blood work be wrong? Should I pursue this further or just try an avoidance diet first?

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False negatives in both blood and biopsy are all too common so yes your blood test could be a false negative. If you are going to pursue further testing you need to keep eating gluten until it is done. You do have the option of doing a dietary trial, which is IMHO the best test there is, but if you decide later that you want to have the endo done you would need to do a gluten challenge for about 3 months. If you need to be gluten free that challenge can make you very ill.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I too have been told I have IBS. I really don't think IBS is a valid diagnosis. There has got to be some underlying condition cause your tummy to be upset. I had the bloodwork come back as negative too. I was told by my immunologist that the false negative rate is very high. He suggested I get and endoscopy and colonoscopy done. I had them done Monday 11/29 and am currently waiting for the biopsy results.

The dry skin patch you described sounds like eczema. I have had that since I was a baby. I get several patches of dry scaly skin, usually on my trunk or butt area. It is worse when the weather gets cold. Eczema can be a symptom of celiac disease.

Good luck on your search for an answer. You can try a gluten free diet to see if it helps, but if you are considering getting the endoscopy and colonoscopy, you should wait until afterwards. Not consuming gluten regularly can cause false results on the celiac biopsy if your intestines have begun to heal.


Jessica

"One person can make a difference, and everyone should try."- JFK

Self diagnosed gluten intolerant- December 2010

Lactose intolerant- since childhood

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Tested negative here as well. As to potatoes, they are a night shade and can cause inflammatory problems with RA. My RA has responded positively to strict gluten free. I can't touch potatoes, though, without becoming immobile for days. I miss them. If you have the option of getting an endoscope done I would proceed. My GP ordered one in spite of the negative blood test in light of anecdotal evidence of reaction to gluten. Scope was positive. Make sure your GI doctor knows to sample from multiple sites if you get the scope done.

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thanks for your answers. Funny, my gastroenteroloist thinks because my tests came back "normal" everything is okay. He is pushing for a colonoscopy without ever mentioning endoscopy. Now I do realize that an endoscopy is necessary but even that might not always show positive if I have not been ingesting gluten. I would hate to have to forgo all my hard work and have to make myself sick - and I am hoping my Gastroenterologist is more astute than he seems to be - I guess I should call him and talk to him...huh? He certainly has not given me any insight into how to solve my problem - he never suggested trying to stop eating gluten - his line was you need to be the detective. Are most gastroenterolists this detached or is this the norm?

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thanks for your answers. Funny, my gastroenteroloist thinks because my tests came back "normal" everything is okay. He is pushing for a colonoscopy without ever mentioning endoscopy. Now I do realize that an endoscopy is necessary but even that might not always show positive if I have not been ingesting gluten. I would hate to have to forgo all my hard work and have to make myself sick - and I am hoping my Gastroenterologist is more astute than he seems to be - I guess I should call him and talk to him...huh? He certainly has not given me any insight into how to solve my problem - he never suggested trying to stop eating gluten - his line was you need to be the detective. Are most gastroenterolists this detached or is this the norm?

In my experience, the doctors seem to want to test for everything else fist. It's as if they don't believe celiac exists, but they will diagnose you with IBS in a heartbeat :huh: You may have to stand up for yourself and really push the doc to do more testing. That's what I had to do. Good luck!


Jessica

"One person can make a difference, and everyone should try."- JFK

Self diagnosed gluten intolerant- December 2010

Lactose intolerant- since childhood

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