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possibility of Celiac Biopsy, but Panel shows neg.

cnascar24race

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cnascar24race Newbie
cnascar24race
Posted

can anyone help me out. I received my electronic endoscope finding from back in December. They told me that I had a possibility of having Celiac but then had me do the blood work. After I did the blood work I started on a gluten free diet. I felt even worse. The results were this: "The duodenal biopsy shows inflamed mucosa with surface epithelial
lymphocytosis, expansion of lamina propria, superficial mucosal erosion and
partial/patchy villous blunting. Though not enti...rely specific these findings
are described in patients with celiac sprue. Clinical and endoscopic
correlation with appropriate followup is recommended. ". I then had follow up blood work that ruled out celiac disease. Was on the gluten free diet AFTER the blood work for 3 weeks and felt worse. The blood work came back showing no celiac - I do not know all of the tests he did but I know they took 5 tubes of blood. I went off the gluten free diet and had a colonoscopy done. I haven't received those results yet. All blood work of my white blood cell and red blood cell counts are nomral. I feel a lot better since going off the gluten free diet which was over 2 weeks ago. Any insight would be appreciated.

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cyclinglady Grand Master
cyclinglady
Posted

It is hard to say without seeing your celiac blood panel results.  Can you post them?  

Three weeks is not much time to make a significant difference.  Most celiacs takes months if not a year or so to feel well.  The gluten free diet has a huge learning curve.  It takes a while for most people to avoid cross contamination and hidden sources of gluten.  There is also a common withdrawal period that makes you even feel worse!  

There are other things that can cause villi damage besides celiac disease:

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CherylS Apprentice
CherylS
Posted

Some people with celiac test negative on blood test.  I have read of people feeling worse when they stop gluten because of detoxing.  I hope you can get some answers soon.

Gemini Experienced
Gemini
Posted

The Celiac blood panel never rules the disease out.  Many, many people test negative on the blood work and then positive on the biopsy....which you did.  This is just an example of how doctors are showing doubt because of liability concerns.  You have villous atrophy associated with Celiac Disease and the other stuff that happens to your gut when you eat gluten and are not supposed to. Have you considered gene testing to see if you carry any of the genes which predispose you for Celiac?  That could help with a decision that should not be difficult with your test results, but doctors will be doctors. 

As far as feeling worse on the diet, you most likely were not 100% gluten free and it really takes quite a while for some to improve on the gluten-free diet.  With gut damage, anything you eat can bother your gut until some healing occurs.

I hope you find your answers to your health woes but it certainly looks like Celiac.  

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