How do I know that I am celiac

[Addy86]

Hi there. I am facing some digestive issues since 2017. Meanwhile I have been to many doctors, so many tests were conducted including MRI, CT , Fibroscan, ultrasound blood work etc. I have looser stools, somewhat feeling of fullness, nausea and right upper abdominal pain. I thought it may be due to Any liver disorder but doctors did not diagnose anything. Ya I have mild back pain as well. Going through a very tough time. Can someone please help me know that can it be due to celiac?  and how I can get myself diagnosed for the same ?

[trents]

Addy86, welcome to the forum.

The first stage of celiac disease diagnosis is a blood test to for antibodies typically produced by celiac disease. The most important test is the Ttg-IGA but since it is very specific for celiac disease but not particularly sensitive, it is wise to have a more complete celiac panel blood test done as described here: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/. I would print this information out and give it to your physician after asking to be checked for celiac disease. Most of the regulars here on the forum will attest to the fact that many physicians lack awareness about celiac disease and so you may have to take the doc by the hand here.

There are also home test kits available for about $100 USD. https://www.imaware.health/at-home-blood-test/celiac-disease-screening

If the blood antibody test is not conclusive then the doctor may want to connect you with a gastroenterologist who can perform an endoscopy/biopsy of the small bowel lining to check for damage to the "villi", the distinguishing characteristic of celiac disease. There is also something called "gluten sensitivity" or non celiac gluten sensitivity (NCGS) that gives many of the same symptoms as celiac disease but does not damage the villi. Currently, there is no test for NCGS so symptoms and how the symptoms respond to a gluten free diet are the only way to diagnosis it. 

Before any testing is done for celiac disease it is very important not to start a gluten free diet. Stopping gluten will invalidate either kind of test.

Have you been checked for gallbladder disease?

Edited June 13, 2021 by trents

[Addy86]

Yes. Doctors did not find anything wrong with gall bladder but since I have mild pain in my shoulder blade I said doctor to check my liver and gall bladder. They did CT , MRI MRCP , Fibroscan etc. I am overweight. Just wonder that a person can be overweight with celiac ?

[trents]

It is more common to be underweight with celiac disease but yes, some go the other way because their body tells them to eat more in order to try and make up for nutritional deficiencies. celiac disease causes poor absorption of nutrients. I'm wondering if you might have NCGS. 

[Addy86]

I believe there is no confirmatory test for NCGS!!!!! Is it the only way to gluten free and see the change ?

[trents]

12 minutes ago, Addy86 said:

I believe there is no confirmatory test for NCGS!!!!! Is it the only way to gluten free and see the change ?

Correct. But I would pursue testing for celiac disease first so you don't sabotage the test results by having gone on a gluten-free challenge.

[Addy86]

Ok. Thanks a lot.

 

[trents]

Most welcome!

[KylieG]

On 6/14/2021 at 1:22 AM, Addy86 said:

Ok. Thanks a lot.

 

How did you go @Addy86? I have had very similar symptoms and investigations as you and have come to the conclusion that I have NCGS. It’s frustrating that there is no real way to diagnose it but going gluten free was amazing for me. Many of my symptoms lifted within days.

If your bloods do come back negative for celiac it would be interesting to see how you feel from going gluten free. 

I had a duodenal biopsy performed which was my only clue to a gluten sensitivity. Not celiac. 

Would love to hear how you go!

Kylie

[KylieG]

On 6/14/2021 at 1:57 AM, trents said:

Most welcome!

Hi @trents

I’m having trouble finding the original thread but I saw you mention somewhere that there are long term risks for those of us with NCGS if a gluten free diet is not followed.

I’d love to read more about this. I hadn’t heard that to date. Are there any good articles around?

Thanks,

Kylie

[trents]

Perhaps, I am wrong about NCGS producing essentially the same long term health risks as Celia Disease. I certainly was guilty of an over statement at least. Found this:

"In addition to experiencing GI symptoms, patients with NCGS most often experience a complex of extra-intestinal symptoms, including a “foggy mind”, which is described as an inability to concentrate, reduction of mnemonic capabilities, and lack of well-being as well as tiredness, headache, anxiety, numbness, joint/muscle pain, and skin rash/dermatitis." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6182669/

And this: 

"Gluten sensitivity shares many symptoms with celiac disease. However, according to a collaborative report published by Sapone et al. (2012), individuals with non-celiac gluten sensitivity have a prevalence of extraintestinal or non-GI symptoms, such as headache, “foggy mind,” joint pain, and numbness in the legs, arms or fingers. Symptoms typically appear hours or days after gluten has been ingested, a response typical for innate immune conditions like non-celiac gluten sensitivity. "https://www.beyondceliac.org/celiac-disease/non-celiac-gluten-sensitivity/what-is-it/

And this: 

"Some people experience symptoms found in celiac disease, such as “foggy mind”, depression, ADHD-like behavior, abdominal pain, bloating, diarrhea, constipation, headaches, bone or joint pain, and chronic fatigue when they have gluten in their diet, yet do not test positive for celiac disease." https://celiac.org/about-celiac-disease/related-conditions/non-celiac-wheat-gluten-sensitivity/

KylieG reports having Hashimotos and NCGS but that may be coincidence: 

 

I think I was keying on things like numbness to hand and fingers and assuming that reflected neurological damage. 

Edited July 4, 2021 by trents

[juanjo]

Hi @Addy86 I have exactly same problems than you since 2 years ago, tons of tests and doctors without diagnosis. The only thing I have discovered during these months is when I stop to eat gluten my symptoms improve, not to 100% of recovery but maybe to 70% and my transaminases come back to normal... but I'm not ok yet, still with chronic pain in the right side, mid back pain... 

So I can imagine that I'm NCGS.... very frustrating.