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The Glutenator

By The Glutenator
in Doctors

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The Glutenator Contributor
The Glutenator
Posted

Hello,

I have been having some gastrointestinal symptoms for a while now and my doctor finally ran a blood test for celiac. My initial symptoms were bloating (looked pregnant), gas, very frequent trips to the washroom, food cravings, and fatigue. As I understand it my immunoglobin levels were very high, even for celiacs (my levels were 52 and normal is less than 20 according to my doctor). I then went for a biopsy and went gluten-free immediately after that. After about 5 weeks I am feeling a lot better. The gas went away very quickly and the bloating and other GI symptoms are getting much better. My energy level is also up 110%. Imagine my shock, then, when the biopsy came back negative. My doctor said he hadn't seen this before and said the blood test almost never gave false positives. I am completely convinced I have celiac disease, especially since the sensitivity of the blood test is so high and all my symptoms are going away, but the negative biopsy was frustrating. My doctor won't officially call me a celiac without the positive biopsy, but isn't recommending a gluten challenge and second test because all my symptoms will come back. Has anyone else had a positive blood test and negative biopsy? What are your suggestions from here? Thanks!

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elle's mom Contributor
elle's mom
Posted

Hello,

I have been having some gastrointestinal symptoms for a while now and my doctor finally ran a blood test for celiac. My initial symptoms were bloating (looked pregnant), gas, very frequent trips to the washroom, food cravings, and fatigue. As I understand it my immunoglobin levels were very high, even for celiacs (my levels were 52 and normal is less than 20 according to my doctor). I then went for a biopsy and went gluten-free immediately after that. After about 5 weeks I am feeling a lot better. The gas went away very quickly and the bloating and other GI symptoms are getting much better. My energy level is also up 110%. Imagine my shock, then, when the biopsy came back negative. My doctor said he hadn't seen this before and said the blood test almost never gave false positives. I am completely convinced I have celiac disease, especially since the sensitivity of the blood test is so high and all my symptoms are going away, but the negative biopsy was frustrating. My doctor won't officially call me a celiac without the positive biopsy, but isn't recommending a gluten challenge and second test because all my symptoms will come back. Has anyone else had a positive blood test and negative biopsy? What are your suggestions from here? Thanks!

False negatives on biopsies are very common. It just means that there are some areas of your small intestine that aren't completely demolished and your surgeon managed to biopsy this area rather than an area that has been affected. The damage to your intestine may but patchy, but that doesn't mean you do not have celiac disease. Although with the positive dietary response, it does mean you can at least consider yourself non-celiac gluten sensitive. Your doctor should know this, if he does not then I would be apprehensive in trusting him to further manage your condition.

I would recommend the book "Healthier Without Wheat" by Dr. Stephen Wangen. It explains all about the different tests for celiac and gluten sensitivity and does a good job of differentiating between the two.

Although the biopsy is still considered the "gold standard" for the celiac diagnosis, there's nothing saying you can't just go on eating gluten free without it if it makes you feel better, it's up to you though; don't let your doctor tell you to go back on gluten. All you'd be doing by going back to gluten is waiting until it further damages your health. This is very unfortunate.

Just as a side note too, I'm not exactly sure 52 is a really high level (I've heard of some being in the 100's or even over 1000 as in my daughter's case), but that doesn't mean anything. It is true that false positives are slim to none, so I would definately not entertain that idea. It's like pregnancy, either you are or you aren't, the value of the number is irrelevant. Good luck to you.

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