Celiac?

[willow33]

Has anyone here been diagnosed with this? I've been having GI issues since last September and I'm starting to wonder if I should ask to be tested for Celiac Disease. My PCP took blood and tested for food allergies (dairy, wheat) and all came back negative. But from what I'm reading online you can have a negative wheat allergy test and still have celiac, right? Because one is an allergy and celiac is an auto-immune disorder. Do I understand it correctly? I'm just so frustrated. At first I thought it was our water since my issues started right after we moved to another state. So I started drinking filtered water and nothing changed. Then I thought it might be my birth control pills since I switched to a new one right before my issues started. Again nothing changed.
Any and all advice would be great! TIA!

[wellyes]

DH has autoimmunine issues that are probably celiac. He definitely can't eat wheat. For him it started around age 25. There us often a trigger event... Stress or medical ( for him it was a bad case of food poisioning).

When he started to have symptoms, he had a lower endoscopy. Results inconclusive - of course, he'd just started having symptoms so of course he would not have long term scarring / damage. He has never been formally diagnosed. But eliminating wheat made a huge difference.

I would get tested but also start an elimination diet - especially if there is any history of autoimmune issues in your family. Or a parent with long term undisclosed health problems (celiac is not uncommon but was rarely diagnosed a generation ago).

[Dr C]

I'd get tested first before starting an elimination diet... If I recall correctly, if you start the elimination diet before getting tested you can get a false negative.
The way the testing usually works, in my understanding, is that you have a blood test and if that's normal it rules out celiac, and if it's positive you go to GI and they do a biopsy. I believe that eliminating wheat will make your biopsy normal.

[mytwosons]

DS1 has celiac. I started having some digestive issues and brain fog/ADD symptoms, which I was able to tie to gluten. (I didn't eat much gluten because we are GF at home, so I noticed the reactions.) My blood test came back negative, which could mean I don't have celiac, I wasn't eating enough gluten prior to testing, or it was a false negative. My doctor thought I was probably celiac given my son, but it could also be an intollerance. (I later read gluten can't be fully digested by humans.) I went GF and can't go back now (which I would need to do to be retested). I see and feel a definite difference and am in pain if I accidentally ingest even a very small amount of gluten. So, I would make sure you are eating a lot of gluten, get tested, and only when you decide you are finished with testing try the elimination diet.

[MamaSnoo]

I'd get tested first before starting an elimination diet... If I recall correctly, if you start the elimination diet before getting tested you can get a false negative.
The way the testing usually works, in my understanding, is that you have a blood test and if that's normal it rules out celiac, and if it's positive you go to GI and they do a biopsy. I believe that eliminating wheat will make your biopsy normal.

This is what I thought too.

[ThreeofUs]

Well, celiac is notoriously hard to dx with blood tests. It's an intolerance, not an allergy, and blood tests show lots of false negatives.

And it's not just from wheat - it's from everything in the wheat family (wheat, spelt, rye, barley, etc.) and from things contaminated with wheat (like oats).

If you think these things bother you, and you've had the blood test, then try going gluten free and see if it makes you feel better. You'll notice a difference in a couple of weeks.

http://www.celiac.com/

[goldenpig]

Positive blood test is helpful, but negative blood test does not rule out celiac disease because it is not as sensitive and can have false negatives. If you are having symptoms I'd see a GI. Gold standard is upper endoscopy with biopsy. But don't start gluten free diet until after the biopsy because if you are gluten free that can also result in a false negative on biopsy.

[trcy]

if you start the elimination diet before getting tested you can get a false negative.

This is correct. I worked with someone that had gluten allergies, but not celiac. They tested her for both. From what she explained to me, with celiac there is a destruction of the intestinal villa and with allergies there is not. Good luck!

[wellyes]

I worked with someone that had gluten allergies, but not celiac. They tested her for both. From what she explained to me, with celiac there is a destruction of the intestinal villa and with allergies there is not. Good luck!

But either way, the treatment is the same, right? Eliminate wheat and related grains completely. So I'd think the elimination diet is more important than the diagnosis, which is frequently not accurate / reliable. If elimination works, great. If not, test for different problems.

[tiapam]

Have you had your thyroid tested? My worst GI issues have always been related to my thyroid. What are your symptoms?