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Endoscopy Showed Normal Bowel Does This Mean I'm Not Got Celiac

Nenee

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Nenee Newbie
Nenee
Posted

Hi there

I had my colonoscopy and endoscopy the other day they took random biopsies and managed to get 1 from the entrance to the small bowel

He said my bowel looked normal but I feel so I'll on gluten it's in real. Iv also had low iron levels for 5 years and lots of symptoms

Has anyone ever had a normal bowel only for the blood test or biopsies to show celiac disease?

I'm so frustrated

:-(

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ravenwoodglass Mentor
ravenwoodglass
Posted

Celiac damage can be patchy and they need to take at least 6 to 8 biopsies of different areas. Did you have a celiac panel done? If so what were the results? Keep in mind that even a short time gluten free or gluten light can cause an increase in false negatives and some of us even on a full gluten diet can still show negative on testing. When you have finished all celiac related testing then give the diet a strict try for at least a couple of months. Sometimes the body can give us answers that tests can not.

Cara in Boston Enthusiast
Cara in Boston
Posted

I had a positive blood test and a negative biopsy. My doctor officially diagnosed me with "gluten intolerance" since my many, many symptoms all cleared up once I went gluten free.

My son has celiac disease - which is what prompted me to get tested in the first place. I am certain I have it, the biopsy just didn't find it. The treatment is the same so it doesn't really matter to me.

My son's doctor said the "of course" I have it. Either the biopsy missed the damage or I do not yet have enough damage to be measured. Having a son with it, having a very positive blood test, and having a positive reaction to the gluten-free diet is enough proof.

Cara

Nenee Newbie
Nenee
Posted
  • Author

I started eating gluten free bread but I still bloated up after that does anyone else have this problem after gluten free bread? Unless I have an issue with yeast to?

Iv been eating gluten free for a few days now and iv noticed my anxiety is better and anger to!

Just don't get that a gluten free wheat free bread makes me bloat???

At this rate il be living of rice and water :-(

GottaSki Mentor
GottaSki
Posted

One biopsy is not enough. Perhaps your GI does not have a lot of experience looking specifically for Celiac Diesease? Positive blood test + improvement on gluten-free diet = Celiac Disease.

Do you have your blood test results? Do you know if you had a full Celiac panel? Were your vitamins/minerals besides iron tested?

Doctors are practicing and it seems many need a lot more practice along with some education about Celiac ;)

Mom-of-Two Contributor
Mom-of-Two
Posted

Some people have issues with gluten free products and flours. Especially when starting out, sticking to whole foods is a great idea. I have had bloating and such with gluten free grains like pizza dough, tortillas, etc and most recently some gluten free brownies that were made with garbanzo bean flour, etc. I do fine with rice flour and quinoa based pastas though.

Good luck!

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      Increased intraepithelial lymphocytes after 10 yrs gluten-free

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      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
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