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Got test, but was gluten free

TheTeaCups
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TheTeaCups Newbie
TheTeaCups
Posted

I suspect that I have some sort of gluten allergy. I’ve been sick for a long time and I was tested for Lupus but never celiac. So I went for a second opinion and that doctor thought it might be a food allergy and suggested an elimination diet starting with gluten. After a few weeks I feel great. Energy is back, joints don’t hurt, I don’t feel sick after I eat, IBS is non-existing. Went back to my doctor and he decided to test me for celiacs, I told him I had been gluten-free for over a month and he told me it didn’t matter, that the tests would be fine. My levels came back 266 mg/dL which is normal. So he said I don’t have celiac. So I was like fine, I’m not celiac I’m going to eat this sandwich! Pretty much got sick not long after. I’m just so frustrated with doctors and this whole process. 
 

sorry for the vent 

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cyclinglady Grand Master
cyclinglady
Posted
15 minutes ago, TheTeaCups said:

I suspect that I have some sort of gluten allergy. I’ve been sick for a long time and I was tested for Lupus but never celiac. So I went for a second opinion and that doctor thought it might be a food allergy and suggested an elimination diet starting with gluten. After a few weeks I feel great. Energy is back, joints don’t hurt, I don’t feel sick after I eat, IBS is non-existing. Went back to my doctor and he decided to test me for celiacs, I told him I had been gluten-free for over a month and he told me it didn’t matter, that the tests would be fine. My levels came back 266 mg/dL which is normal. So he said I don’t have celiac. So I was like fine, I’m not celiac I’m going to eat this sandwich! Pretty much got sick not long after. I’m just so frustrated with doctors and this whole process. 
 

sorry for the vent 

That result is either a positive on the celiac panel or your Immunoglobulin A (IgA) is in the normal range which indicates that most celiac IgA tests (like the TTG, DGP and EMA) would be valid.

Do you have the test results in hand?  You should keep copies of all your medical records.  It is your right!  

It only takes one positive on the celiac panel to move forward and consult with a GI.  

I am sorry that your doctor is misinformed!  It does sound like you do better on a gluten free diet.  Unless you have some serious doubts and can not maintain a lifelong gluten-free diet without an official diagnosis, consider staying gluten free.  Only you can determine what is best for you!  

 

RMJ Mentor
RMJ
Posted

That is not a celiac test result.  Celiac results are NOT reported as mg/dL.  It is most likely a total IgA result. Were there any other results?

cyclinglady Grand Master
cyclinglady
Posted
13 minutes ago, RMJ said:

That is not a celiac test result.  Celiac results are NOT reported as mg/dL.  It is most likely a total IgA result. Were there any other results?

I agree.  Clarification is needed.  

TheTeaCups Newbie
TheTeaCups
Posted
  • Author

This was the other one. But like I said, I haven’t eaten gluten for a while before he administered the test. 

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Fenrir Community Regular
Fenrir
Posted

Being gluten free for a month could certainly cause a false negative. After I went gluten-free my weak positive TTG IgG went negative after a month. 

frieze Community Regular
frieze
Posted

Dr. Should be reported to the appropriate board in your state.  AFTER, you have new doc in place.

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