My Gene Tests - So What's My Risk?

[purplemaryjane]

So I have assumed myself to have NCGI after negative serology a couple of years back. I am doubting this now, thinking back, so I figured maybe I'd have the genetic test done, and if low risk, not bother with the gluten challenge and testing, and just stop worrying.

Wrong!

Here's my results, hoping someone out there can tell me what my risk is (like 2%, 5% etc) since I can NOT for the life of me find this info.

Just fyi, I do have ankylosing spondylitis (diagnosed 2 1/2 years ago, went off gluten then after negative serology). I also have HLA-B27, feeling like I somewhat got the short end of the genetic lottery stick!!

Results: Positive for celiac disease-associated HLA alleles. (done by Kimball genetics)

Results: DQ2 (DQ!a*05/DQB1*02): positive

DQA1*05:01 or *05:05 detected

DQB1*02:01 or *02:02 Detected

DQ8 (DQB1*03:02): Positive

DQB1*03:02 Detected

I know 20-30% of the population have DQ2, but I wonder how many have DQ8? And how many people have both, like me?

If anyone has wise words, I'd love to hear them. In the meantime, I'm 2 months on lots of gluten, feeling tired, irritable, poor concentration, itchy all over, some mouth sores, joint pains, lots of the big C, gassy, upper abdo pains after eating and kind of heart burn feeling, and little (not itchy) bumps all over my neck, back and shoulders. I am having my labs done this week, then booking an endo regardless of the results. Then, going back off gluten, no matter what!! I don't do strict gluten avoidance though (as previously thought NCGI), and don't want to if I don't have to. I felt fine with that ....

Wishing I had my results already - waiting is no fun!!

Thanks

[shadowicewolf]

I have both genes.

Others probably know more than i do, but you aren't alone

[1desperateladysaved]

I was 4/4 of gene alleles! DQ8 yes and DQ2 yes. I hope you are off gluten very soon.

Diana

[kareng]

Open Original Shared Link

"What percentage of those with the genes will develop celiac disease?

Less than 5% of those with one or both genes will develop the disease."

Open Original Shared Link

"If I have a gene for celiac disease, does that I mean I have it?

Genetics don’t diagnose celiac disease. They do, however, clarify whether an individual is “at-risk” for it. If this is the case, you should closely monitor your symptoms and submit to blood tests every 2-3 years or immediately upon the sight of symptoms. When the genetic predisposition for celiac disease was detected (on Chromosome 6) researchers noted that the genes were a necessary but not sufficient condition for the disease to develop. In fact, up to 1/3 of the U.S. population has the genes for celiac disease. Meaning, those who have the DQ2 or DQ8 gene can develop celiac disease at any time, but only about 5% of those people actually will."

[pricklypear1971]

I have a half gene of both. I am genetically at lower risk than average (according to LabCorp)....yet here I am.

Worry less about risk, more about what works.

If gluten-free works, it works.

[cassP]

my advice is: you have a dq2 & a dq8, you have SO MANY of the Gluten intolerant & Celiac symptoms, you've been on 2months now of heavy gluten eating.... ! Get a full Celiac panel NOW, and then GO OFF Gluten forever.. having 2 Celiac specific genes, PLUS having all the symptoms, and already having Anklosing Spondolitis.. i would assume if i was u, that continuing to eat gluten is a sure route to developing celiac (if you dont already have it)... many times- our antibodies dont show up on blood panels, and the damage to our S.I. doesnt show up on biopsies- untill the damage is already substantial...

just my personal opinion.. good luck to u, i hope u get a panel done now, since u have a better chance of getting an accurate reading since uve been eating it... also get the Total Iga Serum to see if you're Iga deficient, cause then all your Celiac panels could be false readings

[Takala]

I read your other post also.

My original intent with going on a grain free diet was to attempt to get my spinal arthritis symptoms under control. At the time I had been snookered into going into an HMO for health insurance because my spouse's co worker recommended them. What a mistake. The official policy of said HMO's so- called "treatment" for what I had was to be told to take over the counter anti inflammatories, aka NSAIDS. Like ibuprofen. That's it. Also, their POS alleged "rheumatologist" told me that I, previously diagnosed with this about 2 decades earlier at this point, did not have arthritis, only "fibromyalgia," but he would do an x- ray to see if there was anything wrong. Then he had to eat his words when of course there was something wrong plain to see, but there wasn't going to be treatment/further diagnosis, when I started developing all these neurological symptoms. You would not believe what some of these quacks said to me because they wanted to see the "end stage" which is when the vertebrae start to fuse in places, which I didn't have. This is why I always tell people that IF they have any choice in the manner, to RUN away from HMO's, especially so - called top rated HMO's, if they have any sort of chronic disease, because they will refuse to diagnose, verify, and treat your diseases, and try to get into a PPO, even if it costs more money. The HMO's have such nice statistics by making people who are actually sick get disgusted enough to leave them. The PPO's might also have some quacks, but at least you're not stuck with them. The person who finally scanned my "bright spot" brain lesions, which are a symptom of the neurological form of celiac, (if you bother to spend 10 minutes online in PubMed you can find this) still insisted, quote, "diet has nothing to do with this."

By sticking to a strictly gluten free diet after initially doing a grain free, ultra low carb one (and dairy free, took a while to get some dairy back in) modified Specific Carbohydrate Diet (SCD) I was able to get most of neurological symptoms under remission, get the arthritis flares under control, and I do not take prescription drugs (knock on wood) nor daily over the counter drugs for this. I gradually regained my sense of balance, and the feeling in my hands, and FINALLY about 3 years ago got the feeling back in both my feet. I still have to be very vigilant about constantly doing physical therapy which I was taught to do roughly 18 years ago, in order to be able to "pass" as a normal person. I also have been taking multi vitamins high in the b vitamins, and calcium, mag, and D for what it seems is just about like forever, even before I found out that official celiacs are low in B vitamins, and I'm convinced that and the diet change has so far helped to somewhat preserve what is my ratty- looking spine. The best unexpected thing has been getting rid of the chronic kidney problems and the costochondritis, the inflammation in the ribcage which is undescribable until one experiences it. If my ribcage stiffens up, I know I have had a cross contamination problem.

I found that the stricter that I kept my diet clean of gluten, the better that I felt. Because I am not on daily meds, I am acutely aware of how I feel and react to this. But I also do not want to deal with any more rheumatologists who don't know what the freaking symptoms are of the diseases that they are SUPPOSED to specialize in, after dealing with a few of these con- jobs who have gotten big fat insurance payments for the initial consult and told me "I don't know what is wrong with you, but you don't have... blah, blah." Finally got a regular doc who recognizes I am somewhat of a freak who can still move around because I work at it and am basically athletic.

Because of your genetic "jackpot" and your (celiac) symptoms when you restored gluten to your diet after a time off, and because celiac is a known robber of bone mass and strength, due to the loss of the lining of the gut which allows the proper absorbing of nutrients, after you get as much testing as you can, you should, imo, seriously go back on a gluten free diet.