Celiac Genetic Test Results

[Emmy208]

Hi there, I’ve posted once before on this forum. I’ve done some blood tests (ttg-IgA, DGP-IgA/IgG, EMA IgA) for celiac and they were all negative, but after the blood tests I went gluten free and felt much better. For those who don’t know, I’ve had severe chronic fatigue, bloating, mainly constipation but also sometimes diarrhea, chronic nausea, muscle pain, migraines, unexplained vitamin deficiencies (D, zinc, iron), high inflammation markers (CRP, C4a, ESR), an itchy blistering rash that is symmetrical, yellow stool (gross ik sry), and white spots all over my nails. Since going off of gluten, the fatigue, GI issues, rash, migraines have improved significantly. I decided to get a genetic test to rule out celiac and I only had half DQ2, so I assumed I didn’t have to worry about having celiac bc it didn’t seem very likely. However, I went and saw a doctor a few days ago who told me that she thinks it’s still possible I have celiac. Apparently she’s seen something like this happen before. I am so confused honestly at this point. Is she right that I might still have celiac? What do you guys think?

[knitty kitty]

Yes, I agree with your doctor.  Some HLA DQ alleles are potent enough they can cause Celiac just by themselves.  

Have you had the itchy rash biopsied?  Dermatitis Herpetiformis is the itchy rash that some Celiac people get.  Having DH is a diagnosis of CeD, too. 

Talk to your doctor and nutritionist about supplementing with essential vitamins and minerals while you are healing.  

Hope this helps.

[Emmy208]

14 hours ago, knitty kitty said:

Yes, I agree with your doctor.  Some HLA DQ alleles are potent enough they can cause Celiac just by themselves.  

Have you had the itchy rash biopsied?  Dermatitis Herpetiformis is the itchy rash that some Celiac people get.  Having DH is a diagnosis of CeD, too. 

Talk to your doctor and nutritionist about supplementing with essential vitamins and minerals while you are healing.  

Hope this helps.

Thank you, yes this helps a lot! 
I agree, I don’t think I am going to completely rule out celiac yet. I haven’t gotten a DH biopsy because I’m currently at school and there is no dermatologist knowledgeable of DH near me. Plus my mother thinks I’m kind of crazy for believing I might still have celiac which is also a problem. Bc of that I don’t know if I’ll seek an official diagnosis. Even if I did have celiac, though, I don’t think anything about my eating habits would change. I already avoid gluten cross contamination like the plague since it makes me so sick. I’m at least going to get a SIBO test though and treat that since I know a lot of people have both CeD and SIBO. I’ll def keep supplementing in the meantime. Lol maybe someday possibly over the summer I’ll do a test and see if the malabsorption symptoms return after having a few slices of bread but idk if it’s worth it. I may just not get a diagnosis and know I probably have it since my symptoms are pretty similar. 

[Scott Adams]

I think you're misinterpreting genetic results here: " I only had half DQ2, so I assumed I didn’t have to worry about having celiac bc it didn’t seem very likely." 

The fact that you have a marker includes you into a larger group of people that may develop celiac disease, even if that risk is small, you are still in that pool. If you then have celiac disease symptoms like "severe chronic fatigue, bloating, mainly constipation but also sometimes diarrhea, chronic nausea, muscle pain, migraines, unexplained vitamin deficiencies (D, zinc, iron), high inflammation markers (CRP, C4a, ESR), an itchy blistering rash that is symmetrical, yellow stool (gross ik sry), and white spots all over my nails," then you definitely could have celiac disease. 

By going gluten-free and finding relief of many of your symptoms, it is further confirmation that you could have it, or at the very least, do have non-celiac gluten sensitivity. There is no test for NCGS. Celiac disease must first be ruled out, but the two share many of the same symptoms and NCGS is 10x more common than celiac disease.

If you'd like to share the details of your blood test results, feel free to do so, as they may shed more light on your situation. Did they do a total IGA test? 

 

[Emmy208]

20 hours ago, Scott Adams said:

I think you're misinterpreting genetic results here: " I only had half DQ2, so I assumed I didn’t have to worry about having celiac bc it didn’t seem very likely." 

The fact that you have a marker includes you into a larger group of people that may develop celiac disease, even if that risk is small, you are still in that pool. If you then have celiac disease symptoms like "severe chronic fatigue, bloating, mainly constipation but also sometimes diarrhea, chronic nausea, muscle pain, migraines, unexplained vitamin deficiencies (D, zinc, iron), high inflammation markers (CRP, C4a, ESR), an itchy blistering rash that is symmetrical, yellow stool (gross ik sry), and white spots all over my nails," then you definitely could have celiac disease. 

By going gluten-free and finding relief of many of your symptoms, it is further confirmation that you could have it, or at the very least, do have non-celiac gluten sensitivity. There is no test for NCGS. Celiac disease must first be ruled out, but the two share many of the same symptoms and NCGS is 10x more common than celiac disease.

If you'd like to share the details of your blood test results, feel free to do so, as they may shed more light on your situation. Did they do a total IGA test? 

 

Thank you, yeah you are right. After I got my gene test, my mom didn’t think it was possible I had celiac and tried to talk me out of thinking I had it. It definitely also threw me off because quest told me I was entirely negative for celiac genes but then did provide a list of the HLA alleles detected, one of which was one of the DQ2 alleles (but for a while I had no idea that meant I was at risk). Later, I did more research and found out that it could still cause celiac. Since I was accidentally exposed to gluten last week (someone cross contaminated the dairy free butter in the gluten-free fridge), I’ve been starting to think I definitely could still have celiac since my stool went back to yellow after the glutening and I don’t think non-celiac gluten sensitivity causes yellow stool (but I could be wrong about that). As I mentioned in another post, I did not have a total serum IgA test done so I am going to ask my doctor about a test for it. 

Thank you again for your help! 

[Scott Adams]

Let us know how it turns out.