Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

My Gene Tests - So What's My Risk?
0

7 posts in this topic

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 :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

I have both genes. :)

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

0

Share this post


Link to post
Share on other sites

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

Diana

0

Share this post


Link to post
Share on other sites

http://www.cureceliacdisease.org/archives/faq/what-percentage-of-those-with-the-genes-will-develop-celiac-disease

"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."

http://www.cureceliacdisease.org/archives/faq/if-i-have-a-gene-for-celiac-disease-does-that-i-mean-i-have-it

"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."

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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." :ph34r::angry:

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,347
    • Total Posts
      917,420
  • Topics

  • Posts

    • Weird Reaction
      Hi again Richie, A lot of coeliacs have a problem with coffee, maybe you do too. It could explain the shakes you describe. I am sensitive to coffee, and haven't touched caffeine since last summer. (The detox lasted for 10 days and it wasn't pleasant, so if you ever give it up, do it gradually).  Sometimes when you're intolerant to something, when you have it, it makes you feel 'better' but it doesn't last and usually end up worse, it's like a drug - and in the case of caffeine it is. I also take a daily probiotic (gluten free and dairy free etc)., which is good for healing the gut.
    • Weird Reaction
      Cristiana and Flowerqueen, I haven't been officially diagnosed as Celiac but I had a DNA test in March 2015 which revealed I had the Celiac gene on both sides so it was advised that I have a test to see if I did have it. I didn't but I went off gluten immediately and haven't "knowingly" eaten it since. Before the DNA test I didn't have the nausea and trembling type feelings that I do now but I occasionally got the shortness of breath which I used to put down to being a smoker. (I quit almost 16 years ago) Anyway, this morning I woke with the nausea feeling, the trembling, loss of appetite, feeling of doom again but it happens so intermittently. I do have some unavoidable stress in my life all of a sudden so maybe it's all connected some how. But on the plus side my bowel movements have returned to normal and I go often especially after waking and having coffee. (Oh, and Cristiana don't worry about tmi with me. You would have to try pretty hard to offend me and nobody has done it yet. haha) I always think the worse to. The internet and Google are great but information overload becomes a real possibility creating some frightening scenarios. It's just interesting that the coffee with the MCT Oil (Brain Octane is the actual name) and butter makes me start feeling better and the nausea, trembling, anxiety seem to be extinguished by it but coffee with low fat milk doesn't although I do get more energy from it. I did read somewhere that MCT Oil was good for gut health though and if I had to describe it it would be like it just smooths over all the bad stuff with a nice soft lining.  It was recommended in my DNA test that I have more fats in my diet and low processed foods but I occasionally have gluten-free biscuits, gluten-free ice-cream (my true weakness) and gluten-free weet-bix. I've checked most of these items ingredients and they are pretty good. There is a lot of gluten free rubbish out there though which I completely avoid. Thanks GFinDC for your reply. I was going to speak to my Naturopath when I see her about Immune Health. My plan usually involves the Liver Tonic I mentioned above and heavy on the L-Glutamine which, apparently, is supposed to be excellent for gastrointestinal health but I'm not going to supplement with anything just yet until I get my blood work done and see if it reveals any deficiencies. I'm suspecting Iron though. Because I've had recent tests all coming back good I'm thinking a possible scenario would be a die-off effect I've heard of where all the bad bacteria have been killed off but your body can't rid itself of them quick enough so you actually feel or get worse before you get better. That's where the detox strategy comes in and I'm assuming replacing them with Good Bacteria via Probiotics. Again, this is what I have read in the past but it does seem to make sense in some cases. I do feel better in having found these forums though.  
    • Daughter with celiac- need test result help
      You are doing well.  We didn't have a "normal" tTG for 6 years and were also very strict.  Kiddo was dx with hypothyroid as well and tTG fell a lot after getting on meds for that but still didn't normalize.  Finally cam down within the last 6 months (this after a trip to THE Celiac Dr. several years ago).  I wish we had done a DGP much earlier and I had pushed for that sooner.  I would start there and see what happens.     Sounds like you're doing everything right though. Sometimes it just takes time. 
    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Celiac.com: Portable Device Can Test If Your Food Is Gluten-Free
      For people with gluten allergies or celiac disease, the idea of eating out in restaurants can be terrifying. It typically involves scrutinizing menus and ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,483
    • Most Online
      1,763

    Newest Member
    Amanda912
    Joined