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So Confused!

runnerkat

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runnerkat Apprentice
runnerkat
Posted

OK - I don't know what to make of any of this. Negative bloodwork, negative biopsies, negative gene tests, but I went gluten free after all the testing was done (don't worry - I ate plenty of gluten until all the tests were taken) and I've been feeling so much better ever since. No gas, no stomach pain, no excessive thirst, etc. etc. But all my tests were negative. What gives? Where can I go from here? Am I really not gluten intolerant? Does anybody have any helpful insight? Thank you in advance!

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Ursa Major Collaborator
Ursa Major
Posted

First of all, the testing is FAR from perfect. Secondly, you don't have the official celiac disease genes for what they consider celiac disease genes in North America, but in other countries they accept other genes as celiac disease genes. You might have those.

And thirdly, if it makes you feel bad, don't eat it. It is irrelevant if all your testing was negative, if eliminating gluten makes you feel better.

You may have celiac disease, and the damage isn't sufficient yet to show up on tests. Or you may be non-celiac gluten intolerant, which is just as bad.

Either way, the treatment is the gluten-free diet. Good for you for trying it anyway after your negative test results. Keep up the good work and don't worry about tests. The diet is the most reliable test anyhow.

nora-n Rookie
nora-n
Posted

I have negative everything too. But my daughter is daignosed celiac (with negative tests and biopsy).

What were your gene results?

Which blood tests were done?

nora

runnerkat Apprentice
runnerkat
Posted
  • Author

Ursa Major - thank you so much for your response. It really made me feel better. :) I know that if the diet works for me then thats what I need to do - I guess its just hard to have all the tests come back negative, and it makes me feel like maybe I'm missing something or its all in my head. I guess I just wanted the certainty of a test result to back me up.

nora_n - It's nice to hear that there's others out there like me! That's weird that your daughter is diagnosed - she must have gotten it from somewhere. I was negative for both the DQ2 and DQ8 genes. I also don't know exactly what the names of the bloods tests were, but I know they did the full celiac panel (multiple times).

nora-n Rookie
nora-n
Posted

Someone else here recently had a negative gene test, and her mother was diagnosed and she too. They just wanted to check the genes for curiosity and she was negative . She phoned and said this is highly unlikely and they sent the test to a bigger lab and they found DQ8.

Mistyping happens.

I will look for the thread.

Here it is:

Open Original Shared Link

nora

ShayFL Enthusiast
ShayFL
Posted

I tested negative with Kimball, but postitive with Enterolab DQ1 and DQ3 (Subtype 6 and 7 respectively). I wonder if Kimball messed up mine too. Or if Enterolab would have found DQ2 or DQ8 if they existed......

nora-n Rookie
nora-n
Posted

According to Dr. Lewey Enterolab does not do any genetic testing but it is done at a contracting lab. (Bonfils)

https://www.celiac.com/articles/21567/1/Ten...ting/Page1.html

Open Original Shared Link

nora

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