Curious - Q for Seronegative Celiacs & NCGS - did you gene test?

[Celiac's Wifey]

I am seeking more info from seronegative celiacs (celiacs where the blood tests did not show it) but later biopsy confirmed & from NCGS diagnosed whose symptoms were allieviated on the gfd 

What blood tests for celiac disease did you do? / Were your numbers totally low / normal?

Were you gene typed?

What were your results of gene typing?

I'm especially curious to try to get a sense of if there are other DQ7 types out there who were seronegative.... but had symptoms resolve on the diet.

Also were any of you ANA tested?

(Asking because my kids are at risk. Half my husbands family are biopsy-confirmed celiacs - but most with weird paths to diagnosis - he was confirmed through DH skin biopsy / his sis never had a positive blood test but had tons of Marsh III lesions at time of endoscopy / first cousin had one equivical positive blood test as teen, when no damage was found on initial endoscopy doc advised her gluten was fine -- six years later new endoscopy showed major damage. Curious if there is a tie between genetic types. They haven't all been gene typed but we know my husband is DQ7)

[ironictruth]

16 hours ago, Celiac's Wifey said:

I am seeking more info from seronegative celiacs (celiacs where the blood tests did not show it) but later biopsy confirmed & from NCGS diagnosed whose symptoms were allieviated on the gfd 

What blood tests for celiac disease did you do? / Were your numbers totally low / normal?

Were you gene typed?

What were your results of gene typing?

I'm especially curious to try to get a sense of if there are other DQ7 types out there who were seronegative.... but had symptoms resolve on the diet.

Also were any of you ANA tested?

(Asking because my kids are at risk. Half my husbands family are biopsy-confirmed celiacs - but most with weird paths to diagnosis - he was confirmed through DH skin biopsy / his sis never had a positive blood test but had tons of Marsh III lesions at time of endoscopy / first cousin had one equivical positive blood test as teen, when no damage was found on initial endoscopy doc advised her gluten was fine -- six years later new endoscopy showed major damage. Curious if there is a tie between genetic types. They haven't all been gene typed but we know my husband is DQ7)

My brother was reportedly seronegative. However, I recently found out he had only the TTG and EMA done. They did not run the DGP. He is DQ2, positive biopsy. His son was screened, also only for tTG and EMA and was negative. He has DQ2 though.

I am TTG and EMA negative. My DGP is negative when separated into DGP IGA and IGG, however, it is positive on a combined screen. This is funky. The positive number did not fluctuate greatly from a gluten free diet to a gluten challenge. So we are not sure how reliable it is. I am DQ2 positive. ANA was normal. First biopsy normal, second showed inflammation only, final endoscopy was done with a specialist and biopsy showed Marsh 2-3A, increased IEL, crypt hyperplasia. 

I am in a similar boat. Need to have my son screened and the genetic test is not covered. Plus, not all docs run the DGP which although can be a false positive, can also be useful in screening, especially in my family's case. I am exploring trying to make it work locally or bringing my son to see my out of state specialist when I return for follow up biopsy next year. I hate to wait a year, but he seems happy and healthy. However, we too do not present with the text book classic symptoms in my family either. 

Good luck! 

[Gluten-free-01]

23 hours ago, Celiac's Wifey said:

I am seeking more info from seronegative celiacs (celiacs where the blood tests did not show it) but later biopsy confirmed & from NCGS diagnosed whose symptoms were allieviated on the gfd

I'm a NCGS and the gfd has helped me a lot. My symptoms were neurological, GI and gynecological problems. A family member has celiac and two other family members (who are deceased) had gastrointestinal cancer and epilepsy.

In fact, I may be a seronegative celiac. My blood tests were negative but I didn't have an endoscopy/biopsy (lack of trust in doctors). 

23 hours ago, Celiac's Wifey said:

What blood tests for celiac disease did you do? / Were your numbers totally low / normal?

Gliadin IgG 0,2 (Ref.: 0,0 – 0,9) neg.

Gliadin IgA 0,1 (Ref.: 0,0 – 0,9) neg.

Endomysium IgG negative

Endomysium IgA negative

ttg IgG 0,1 (Ref.: 0,0 – 0,9) neg.

ttg IgA 0,1 (Ref.: 0,0 – 0,9) neg.

total IgA 1,98 (Ref.: 0,70-4,00)

23 hours ago, Celiac's Wifey said:

Were you gene typed?

No. It's quite expensive and I can't afford it now. But, I'd like to get these genetic tests in the future.

23 hours ago, Celiac's Wifey said:

Also were any of you ANA tested?

No, but I do have some thyroid issues - borderline hypothyroidism (TSH was borderline high).

23 hours ago, Celiac's Wifey said:

his sis never had a positive blood test but had tons of Marsh III lesions at time of endoscopy / first cousin had one equivical positive blood test as teen, when no damage was found on initial endoscopy doc advised her gluten was fine -- six years later new endoscopy showed major damage.

To be honest, this is exactly the reason I've decided not to rely on the negative blood test results. I don't want to keep on eating gluten for x more years only to find out that the damage is 'already severe enough' to be detected.   

[Noobette]

I had 23andme testing which showed I have genes DQ2.5 and DQ8. When I learned this I decided to stop eating gluten to PREVENT getting celiac, but didn't worry about cross-contamination. A year later I got sick, and eventually had an endoscopy which showed Marsh 1. My blood tests were negative, as one would expect for anyone eating gluten-free. My gastroenterologist told me I could either decide to live like a celiac, or do the full 12-week gluten challenge. I cleaned up my kitchen and started being very careful with eating away from home, and my symptoms went away.