Possible False Negative? Need Advice

[lenzipam]

Hello. New here and looking for some advice on this:

I recently did a 4 week gluten challenge and got blood work done for celiac. Everything came back normal except for the DQ8 gene, which I tested positive for. I’d be fine accepting that I have NCGS, but the problem is I’ve got symptoms that are only explainable by celiac (joint pain after eating gluten, sudden intolerances to dairy and soy while on the challenge, fat in stool etc) and I’m at a loss if they aren’t. Adding in the fact that my GI told me a 4 week challenge should be fine when I see a number of sources online say it should be 6 at least and I’m worried that I’ve got a false negative here. So I’ve got two options I’m weighing here. Should I—

A) Continue doing the gluten challenge and try for blood work again? I’ve only been off it for a week, can I just pick it up again and do another two or three weeks? Or does taking a break wipe away all signs of antibodies and I’ll need to start over from scratch?

Try to get referred for an endoscopy / biopsy instead and give up on the blood work? Thought this might be an easier way of going about it, since a challenge for this is only two weeks.

[cristiana]

Hello Lenzipam and welcome to the forum

You are right in stating that 6 weeks seems to be the minimum recommended time period for the trial.     Here in the UK it's usually recommended that one consumes at least two slices of glutenous bread per day through that period.

Out of interest, were you totally gluten free before the trial? 

Also, how debilitating are your symptoms when you consume gluten?  Would you find it very difficult to consume gluten for a few more weeks?

Cristiana

[Scott Adams]

Can you share your test results with us? I’m just curious because your levels may have been high enough to demonstrate that you’re reacting to gluten.

[lenzipam]

2 hours ago, cristiana said:

Hello Lenzipam and welcome to the forum

You are right in stating that 6 weeks seems to be the minimum recommended time period for the trial.     Here in the UK it's usually recommended that one consumes at least two slices of glutenous bread per day through that period.

Out of interest, were you totally gluten free before the trial? 

Also, how debilitating are your symptoms when you consume gluten?  Would you find it very difficult to consume gluten for a few more weeks?

Cristiana

I was strictly gluten-free for just over a month before the trial. My symptoms aren’t absolutely debilitating, but they’re certainly uncomfortable and make it hard to function. Lots of brain fog, joint pain, nausea, headaches and stomachaches, constipation, etc etc. I could probably do it, wouldn’t be great though lol

[lenzipam]

24 minutes ago, Scott Adams said:

Can you share your test results with us? I’m just curious because your levels may have been high enough to demonstrate that you’re reacting to gluten.

Sure-

IgA Quant - 100 mg

TTG IgA - <2 u/ml

DgP IGG - 3 units

Nothing here to really suggest anything off, they’re all in normal range as far as I know. But with that DQ8 and some of my symptoms I can’t help but worry.

[cristiana]

Thanks for posting those.

I guess the difficulty which we face in this sort of situation is that is possible to have negative blood tests and still be a coeliac - either because one hasn't been consuming enough gluten to generate a sufficiently strong reaction, or despite gluten consumption, a small minority of coeliacs have negative blood tests but their endoscopies show villous damage.  

If you are happy to have an endoscopy, which could also be useful to find out if you have other issues like gastritis, it would be the best way of ruling in/out coeliac disease, as long as you are consuming enough gluten to generate a reaction.  

1 hour ago, Scott Adams said:

Can you share your test results with us? I’m just curious because your levels may have been high enough to demonstrate that you’re reacting to gluten.

Scott - I just wanted to check with you, would you agree that two weeks of consuming gluten is sufficient prior to an endoscopy?

[lenzipam]

19 hours ago, cristiana said:

Thanks for posting those.

I guess the difficulty which we face in this sort of situation is that is possible to have negative blood tests and still be a coeliac - either because one hasn't been consuming enough gluten to generate a sufficiently strong reaction, or despite gluten consumption, a small minority of coeliacs have negative blood tests but their endoscopies show villous damage.  

If you are happy to have an endoscopy, which could also be useful to find out if you have other issues like gastritis, it would be the best way of ruling in/out coeliac disease, as long as you are consuming enough gluten to generate a reaction.  

Scott - I just wanted to check with you, would you agree that two weeks of consuming gluten is sufficient prior to an endoscopy?

I think the endoscopy’s probably the best idea. I’ll be seeing my GI doc again later this week, so I’ll ask him about it. Thanks so much for your help!

[Scott Adams]

The Mayo Clinic recommendation is to eat two slices of wheat bread daily before the biopsy.

Also, you could have non-celiac gluten sensitivity, and currently there is no way to test for it. If your tests end up negative for celiac disease, you may still not find relief until you go gluten-free, and if this relieves your symptoms it's likely you have NCGS.