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


Nenee

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Nenee Newbie

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

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

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

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

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

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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      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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