Getting Tested

[CatherineG]

Hi! My functional doc has me doing the celiac panel test, but I have been gluten free for about three years. She said I need to eat a slice of bread or two for three or four days before testing, but everything I’ve been reading says I need to eat gluten-containing foods for at least six weeks. I was concerned about being “glutened” for a week, but six? I’m afraid I won’t be able to function. I have Hashimoto’s and stopped gluten to bring those antibodies down. Now, whenever I have a bit of gluten, I get very dizzy, extremely fatigued, my hearing gets weird - I feel drugged. I’ve also developed issues with dairy (back ache, joint pain, etc), which is part of what prompted my doc to order the test. My question is, if I eat a moderate amount of gluten for just a week or so, will I still get an accurate result from the celiac test? 
Thank you! 
PS I do have the HLA-DQ2 gene. 

[CatherineG]

48 minutes ago, CatherineG said:

Hi! My functional doc has me doing the celiac panel test, but I have been gluten free for about three years. She said I need to eat a slice of bread or two for three or four days before testing, but everything I’ve been reading says I need to eat gluten-containing foods for at least six weeks. I was concerned about being “glutened” for a week, but six? I’m afraid I won’t be able to function. I have Hashimoto’s and stopped gluten to bring those antibodies down. Now, whenever I have a bit of gluten, I get very dizzy, extremely fatigued, my hearing gets weird - I feel drugged. I’ve also developed issues with dairy (back ache, joint pain, etc), which is part of what prompted my doc to order the test. My question is, if I eat a moderate amount of gluten for just a week or so, will I still get an accurate result from the celiac test? 
Thank you! 
PS I do have the HLA-DQ2 gene. 

PPS I’m also on LDN - should I stop taking that before the celiac panel test, as well? 

[trents]

Welcome to the forum, CatherineG! I would not expect one week of two slices of bread to yield antibody test results that are valid. From your description of your reaction to gluten consumption it seems obvious to me you have either celiac disease or NCGS (Non Celiac Gluten Sensitivity) and with Hashimoto's and the DQ2 gene it is likely celiac disease. Is there a particular reason you need to differentiate whether it is celiac or NCGS, reason enough to torture yourself and risk further damage to your health?

I would not think LDN would affect the test results.

Edited June 25, 2023 by trents

[CatherineG]

2 hours ago, trents said:

Welcome to the forum, CatherineG! I would not expect one week of two slices of bread to yield antibody test results that are valid. From your description of your reaction to gluten consumption it seems obvious to me you have either celiac disease or NCGS (Non Celiac Gluten Sensitivity) and with Hashimoto's and the DQ2 gene it is likely celiac disease. Is there a particular reason you need to differentiate whether it is celiac or NCGS, reason enough to torture yourself and risk further damage to your health?

I would not think LDN would affect the test results.

Thank you, Trents! 🙂 As silly it sounds, I’m not entirely sure why my doc is testing me for celiac. And though I have explained my reactions to gluten she may not understand their severity (and thus thinks the test won’t be an issue). But if eating gluten for only a week or so won’t yield accurate results, it seems senseless to do it all. 

[trents]

My concern in this situation would be that, despite the symptomatic evidence that you have celiac disease, the test results will be negative and that might send your functional doc in a different direction as well as create doubt in your own mind.

[Scott Adams]

I agree, if you are going to do at gluten challenge to be tested it must be done according to protocol, or you will suffer needlessly and get unreliable results that could lead some to start eating gluten again (after their doctor tells them they have negative results!). More info is here:

 

[Deb2820]

A little help here, please. I am unable to find a health provider who is willing to do the testing. They simply pick 1 symptom out of a hat and treat that 1 symptom. I never get any better.  This has been going on for years. I don't feel well and I'm fighting a system that works against me. How many ways can I say that I can't do this anymore? I am finally seeking a holistic medicine doctor instead. Anyone have a referral in Indiana? Thank you.

[trents]

1 hour ago, Deb2820 said:

A little help here, please. I am unable to find a health provider who is willing to do the testing. They simply pick 1 symptom out of a hat and treat that 1 symptom. I never get any better.  This has been going on for years. I don't feel well and I'm fighting a system that works against me. How many ways can I say that I can't do this anymore? I am finally seeking a holistic medicine doctor instead. Anyone have a referral in Indiana? Thank you.

Welcome to the forum, Deb2820!

There is also the option of purchasing a home celiac test kit from a commercial provider such as Imaware. About $100 I think.

[CatherineG]

22 hours ago, Scott Adams said:

I agree, if you are going to do at gluten challenge to be tested it must be done according to protocol, or you will suffer needlessly and get unreliable results that could lead some to start eating gluten again (after their doctor tells them they have negative results!). More info is here:

 

Thank you! Those are my concerns, too - I’ll share them with my doc. And thank you for the article!