Do my test results indicate celiac disease?

[AnnieVz]

Hi! I recently got tested and my Transglutaminase was 12 - a positive test result. My doctor says it’s definitely not celiac disease which I find a tad confusing. I did have a biopsy in 2015 which was negative but I didn’t have gluten every day before the biopsy - in fact, I usually have gluten maybe once a week. I convinced them to do another biopsy.
 

I have a lot of abdominal problems and I’m constantly bloated. They keep telling me I have difficulty accepting my ibs diagnosis but I feel like something is wrong. I also have a horrible rash across my legs. Any tips on how to cope with the doctors? Anyone else experienced doctors who try to convince you it’s all in your head? Also, how much gluten should I have before my biopsy? 

[Scott Adams]

Welcome to the forum! Is there a chance you can share your complete test results, with the high marker levels? To me it sounds very strange that any doctor would immediately dismiss celiac disease if you had a positive TTG test. That test is very specific and considered a good indicator or celiac disease, or at the very least, gluten sensitivity (~12% have non-celiac gluten sensitivity for which there is currently no screening tests available, while ~1% have celiac disease).

If you were mostly gluten-free before any of your tests it could definitely cause false negative results. Eating gluten only once per week would definitely mess up your test results. For blood tests you should be eating at least a slice of wheat bread daily for a minimum 6-8 weeks, and for a biopsy at least 2 weeks, and here is more info about that:

 

[RMJ]

I once asked a doctor if a drug required for a test he recommended would affect my celiac disease.  He said I probably didn’t have celiac disease.  I replied that it had just been diagnosed via biopsy and that ended the conversation.  I don’t know why some doctors are so anti-celiac! 

Was the doctor who told you the positive test did not indicate celiac a gastroenterologist? If so I’d find another one.  At least you have convinced them to do another endoscopy - be sure to eat plenty of gluten beforehand as Scott recommended in his post.

You might go to a dermatologist, tell them you test positive for celiac disease, and have the rash tested for DH (dermatitis herpetiformis). There is a specific way to take the DH sample with respect to the rash location, someone with more knowledge of DH can tell you more.

[AnnieVz]

10 hours ago, Scott Adams said:

Welcome to the forum! Is there a chance you can share your complete test results, with the high marker levels? To me it sounds very strange that any doctor would immediately dismiss celiac disease if you had a positive TTG test. That test is very specific and considered a good indicator or celiac disease, or at the very least, gluten sensitivity (~12% have non-celiac gluten sensitivity for which there is currently no screening tests available, while ~1% have celiac disease).

If you were mostly gluten-free before any of your tests it could definitely cause false negative results. Eating gluten only once per week would definitely mess up your test results. For blood tests you should be eating at least a slice of wheat bread daily for a minimum 6-8 weeks, and for a biopsy at least 2 weeks, and here is more info about that:

 

[AnnieVz]

Thank you!
 

I’m going to eat gluten every day before the biopsy. He literally only took one test, I’ve attached the result here (it’s in Swedish). I asked him and he says I don’t have any deficiencies which usually is an indicator of celiac disease. Hence, he’s positive that it’s just ibs…

 

[AnnieVz]

10 hours ago, RMJ said:

I once asked a doctor if a drug required for a test he recommended would affect my celiac disease.  He said I probably didn’t have celiac disease.  I replied that it had just been diagnosed via biopsy and that ended the conversation.  I don’t know why some doctors are so anti-celiac! 

Was the doctor who told you the positive test did not indicate celiac a gastroenterologist? If so I’d find another one.  At least you have convinced them to do another endoscopy - be sure to eat plenty of gluten beforehand as Scott recommended in his post.

You might go to a dermatologist, tell them you test positive for celiac disease, and have the rash tested for DH (dermatitis herpetiformis). There is a specific way to take the DH sample with respect to the rash location, someone with more knowledge of DH can tell you more.

No he wasn’t a gastroenterologist. He didn’t want to refer me to one either but he ended up doing it after I complained. The rash comes and goes so I don’t have it at the moment but I will go to one when it comes back. Thanks! 

[RMJ]

It is absolutely possible to have celiac disease without deficiencies or even without typical symptoms - like me!  I’m so glad that your original doctor referred you to a gastroenterologist. I hope you get a clear answer when you have your endoscopy/biopsy.

[Scott Adams]

You have a high TTG result, which is normally interpreted as probable celiac disease. For the doctor to toss this out and ignore it because you may not have vitamin or mineral deficiencies yet is a bad idea. To me, you've caught this early, before it has reached a more serious stage, but you really don't even know this yet, as you haven't had a biopsy. I believe too many doctors dismiss a celiac diagnosis because of their personal biases against the concept of needing a gluten-free diet for life.

Please let us know how things go with your biopsy, but even if your villi are still not flattened, this blood test result still indicates you have an abnormal autoimmune response to gluten, so you're likely non-celiac gluten sensitive, for which we currently can't screen, but the treatment is the same--a gluten-free diet for life.

[AnnieVz]

On 6/9/2021 at 7:10 PM, Scott Adams said:

You have a high TTG result, which is normally interpreted as probable celiac disease. For the doctor to toss this out and ignore it because you may not have vitamin or mineral deficiencies yet it a bad idea. To me, you've caught this early, before it has reached a more serious stage, but you really don't even know this yet, as you haven't had a biopsy. I believe too many doctors dismiss a celiac diagnosis because of their personal biases against the concept of needing a gluten-free diet for life.

Please let us know how things go with your biopsy, but even if your villi are still not flattened, this blood test results still indicates you have an abnormal autoimmune response to gluten, so you're likely non-celiac gluten sensitive, for which we currently can't screen, but the treatment is the same--a gluten-free diet for life.

I had pretty severe villous atrophy and they’ve now officially diagnosed me! I’m glad I pushed them to do so.

[Scott Adams]

Thank you for the update, and sorry to hear of your official diagnosis, but I'm glad that you can now treat this with a gluten-free diet and hopefully recover 100%. Good on you for pushing your doctor to get the biopsy! You may want to get tested for vitamin and mineral deficiencies, and you will likely need to start supplements (which are gluten-free of course!). A good vitamin & mineral supplement that includes a B-complex, along with vitamin D is a good way to start.