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How Accurate And Informative Is A Small Bowel Biopsy?

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Hi there. I am unsure whether or not I have Celiac Disease. I have many of the symptoms (reflux, gas, brain fog, abdominal cramping, occasional diarrhea (10% to 30% of the time?), back pain, tendency toward dehydration (I drink 50% to 100% more water than others I know), and fatigue). I also have asperger's syndrome. I had extremely frequent ear infections and nosebleeds as a kid, and now have a sinus infection nearly as often as not.

Several of the doctors have thought of Celiac Disease, and I got the test for transglutaminase antibodies. It was negative (7, with results over 20 being abnormal). I am now scheduled for a endoscopy, primarily to look for the cause of my diarrhea, but I asked them to do a biopsy to check for Celiac as well. Now, after looking at the symptoms of Celiac Disease more closely it looks like it could very well be my problem... but I'm starting to consider just going gluten free instead of getting the biopsy done.

So here's my question, finally - how much will the biopsy tell me? If it is negative, does that mean that gluten is in no way responsible for any problem I might have? Would it also mean that I don't have any similar problems, like a casein intolerance?

If you've got the patience, I also have another, unrelated question. Right now I am suffering quite a lot due to itching skin with no rash, and no apparent cause (they must have tested my blood for just about everything at this point)... the itching itself isn't so bad but it does keep me from sleeping - I am feeling tired all the time (I can take antihistamines and feel drugged constantly from that, or I can skip them and be exhausted due to sleep deprivation instead) and am starting to get very depressed because of it. Have any of you fine folks with Celiac Disease experienced something similar? The main traits of this problem are that I itch all over my entire body and have no rash or visible symptom, and that the itch is not usually intense but it is persistent enough to prevent sleep. This is what got me the endoscopy in the first place.

I would very much appreciate any answers or insight you may be able to provide!

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Celiac.com Sponsor (A8):

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Hello, and welcome.

You will find many posters here on the board with experiences and questions such as yours. I will try to address some of them.

No, sadly an endoscopy cannot even rule out celiac disease, let alone gluten intolerance and says nothing about casein intolerance. There is about a 20% false negative rate for celiac, and it does not address gluten intolerance at all. As an aside, many doctors (GI's included) do not believe in gluten intolerance. Your doctor ran only one of the blood tests for celiac disease. There is actually a whole celiac panel, and you can be negative on some and positive on others. The full celiac panel is:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP IgA and IgG (this is the newest - and many feel the most accurate - test)

Total Serum IgA 9this is run to verify that you produce normal IgA antibodies)

Itching skin with no rash is often a sign of a food intolerance, and many of us develop other food intolerances along with celiac because gluten gives us a leaky gut which allows larger particles of other food into the blood stream and sets of an autoimmune response to those foods with sufficient exposure. So you will tend to develop intolerances to those things you eat the most. Tiredness, exhaustion, insomnia, are all common in those with gluten intolerance., along with all the other symptoms you mention.

We all have to make our own decisions as to how far we push our medical professionals for testing. Many of us give up. If you need any more help in making the decision, fire away.


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson


Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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