Celiac testing options

[Ali W]

Hi everyone, I’m new here & hoping for your insights on testing for celiacs. I’ve already found the forums so helpful.

I have severe gluten intolerance and have suspected celiacs for years. My aunt has celiacs, I have another autoimmune disease (hashimotos) and when I eat even a tiny amount of gluten, I get an itchy rash on my hands, elbows, feet and scalp (DH?), plus chest tightness and total exhaustion. As a result, I’ve been largely gluten-free for a couple of years now.
My GP and naturopath suspect celiacs, but have discouraged me from testing because I react so badly to gluten.

However, I feel like a diagnosis would be reassuring in a way (sometimes I feel like I’m going crazy) and might help with better treatment from doctors.

Is anyone aware of testing options that don’t require 8 or more weeks of a high-gluten diet? Has anyone else gone through testing even though they react so badly?

[trents]

An endoscopy with biopsy of the small bowel lining is the gold standard test for celiac disease. The pre test gluten challenge is only 2 weeks for this but would need to be eating significant amounts of gluten daily, the equivalent of two slices of wheat bread.

[Scott Adams]

I would not necessarily expect better treatment from doctors with an official diagnosis, but it’s possible you could get certain follow up tests ordered that you otherwise might not have access to.

On the downside you may pay more for private health and life insurance.

Keep in mind that a negative test won’t exclude non-celiac gluten sensitivity, which is ~10x more common.

[Ali W]

2 hours ago, trents said:

An endoscopy with biopsy of the small bowel lining is the gold standard test for celiac disease. The pre test gluten challenge is only 2 weeks for this but would need to be eating significant amounts of gluten daily, the equivalent of two slices of wheat bread.

Thank you, that’s good to hear. Different from what my GP has told me, but I’m hoping he’ll refer me to a specialist who’ll have more up to date info.

2 hours ago, Scott Adams said:

I would not necessarily expect better treatment from doctors with an official diagnosis, but it’s possible you could get certain follow up tests ordered that you otherwise might not have access to.

On the downside you may pay more for private health and life insurance.

Keep in mind that a negative test won’t exclude non-celiac gluten sensitivity, which is ~10x more common.

Thanks Scott, both good points there. I hadn’t considered the insurance factor, but still think I would just feel better knowing. 

[trents]

1 hour ago, Ali W said:

Thank you, that’s good to hear. Different from what my GP has told me, but I’m hoping he’ll refer me to a specialist who’ll have more up to date info.

Thanks Scott, both good points there. I hadn’t considered the insurance factor, but still think I would just feel better knowing. 

Whatever doctor you see, make sure you clarify the pretest gluten challenge period. And keep in mind, even GI docs are not necessarily current on gluten related problems. Many of them, especially if they have been out of medical school for a number of years. What many on this forum have discovered is that you have to go armed with information, be assertive and be your own advocate.

Edited October 11, 2021 by trents

[Ali W]

11 hours ago, trents said:

Whatever doctor you see, make sure you clarify the pretest gluten challenge period. And keep in mind, even GI docs are not necessarily current on gluten related problems. Many of them, especially if they have been out of medical school for a number of years. What many on this forum have discovered is that you have to go armed with information, be assertive and be your own advocate.

Having battled doctors about my thyroid for many years, I have no doubt this is the case. It’s disappointing and frustrating, but I’m used to it. These forums have been so helpful for information like this (thank you!) and just to see that others have had experiences like mine. I really appreciate your insights and advice.