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Flat Mucosa And Celiac Disease?

JaniceS

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JaniceS Newbie
JaniceS
Posted

I recently had an EGD and Colonoscopy done and in the report I recieved it says that flat mucosa was found in the bulb and the duodenum and that biopsies were taken to test for Celiac Disease... however I already had bloodwork done to test for Celiac Disease and everything came back normal. I have a follow-up appointment for two weeks from now, July 1st, but the wait is really getting to me. I was told NOT to go gluten free because it can effect the results of a Celiac test, however if cutting gluten out of my diet might make me feel better I am willing to risk it. From reading things online it seems that flat mucosa is almost ALWAYS celiac, but I cannot find anything else that causes it... only things that say stuff like "flat mucosa is almost always a sign of celiac disease" but it never says what other things it could be a sign of. Please someone, help. I am stressing and I don't know which way to turn! Is it possible to have a negative blood test for celiac but still have celiac? Thank you.

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Harpgirl Explorer
Harpgirl
Posted

It is possible to have a false negative. The book I've been reading even says that it can be attributed to lab techs who, if they see the celiac testing at all, rarely get requests for it, and tend to perform the test incorrectly. There are a number of reasons to get a false negative, but that one really stood out to me. :blink:

ravenwoodglass Mentor
ravenwoodglass
Posted

Unfortunately both blood and biopsies can come back with a pretty high rate of false negatives. Since you have had both bloodwork and biopsies for celiac call your doctor and ask what other testing they are planning on doing for celiac. If they say they are just waiting for the results and are not doing any further testing you could go ahead and start the diet. Being on the diet will not effect testing for other problems. If they say they plan on doing gene tests be aware that not all celiacs have the 2 most common genes and that you don't have to be still eating gluten for the gene tests.

No matter what the test results of the biopsy do give the diet a good strict trial when you are done with celiac testing.

JaniceS Newbie
JaniceS
Posted
  • Author

Would you mind telling me which book you're reading? I would like to educate myself on this issue as well.

I think I have to agree with you on the lab-tech being the problem, since (assuming that is) I am sure that it is more likely to have human error than other things. I guess I can't really say I am relieved to hear that you can get false negatives, but it would make sense.

Sorry, I didn't see the other post when I replied. Thank you for the information about the glute-free diet. When my doctor's office opens I will be sure to call, however speaking with my GI is almost impossible, and in the past when I've left a call back message I've never receieved one. I've been researching some gluten-free recipies and am planning on heading to a Barnes and Noble today to see about looking at a few gluten-free cook books. If it turns out to be Celiac, I would like to be a little more prepared.

Harpgirl Explorer
Harpgirl
Posted

Would you mind telling me which book you're reading? I would like to educate myself on this issue as well.

I'm reading Living Gluten-Free For Dummies by Danna Korn. What's really nice is I've got it digitally on my ereader, so I can highlight and make notes. Then when I go to the store, I can take it with me and look up the highlights so I know which ingredients to look for. There are a lot that I never would have thought of! :o

JaniceS Newbie
JaniceS
Posted
  • Author

I'm reading Living Gluten-Free For Dummies by Danna Korn. What's really nice is I've got it digitally on my ereader, so I can highlight and make notes. Then when I go to the store, I can take it with me and look up the highlights so I know which ingredients to look for. There are a lot that I never would have thought of! :o

Ohh great! I have an e-reader as well, didn't even think of looking for gluten free books on it. That is a great idea, thanks. Really it probably makes shopping a lot easier too - so you know exactly what to buy for what you plan on making. Absolutely brilliant! Thanks!

Harpgirl Explorer
Harpgirl
Posted

Ohh great! I have an e-reader as well, didn't even think of looking for gluten free books on it. That is a great idea, thanks. Really it probably makes shopping a lot easier too - so you know exactly what to buy for what you plan on making. Absolutely brilliant! Thanks!

No problem ;) I'm also told that Dangerous Grains is a good one too. It's also available digitally.

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      I don't see how cornstarch could alter the test results. Where did you read that?
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    • Julie 911
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      By Julie 911 · Posted

      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
    • trents
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      By trents · Posted

      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
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