• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Let's Post Our Celiac Genes - Everyone Join Plz !
0

14 posts in this topic

Recommended Posts

I have seen this on other gluten free forums and thought it would be interesting and resourceful to do it here. If you've had a genetic test for celiac post your result and celiac diagnosis or symptoms. I'll start first:

Mom - DQ2.5/DQ2.2 - 48 years old female - positive blood work marsh 3B at biopsy

Myself- DQ2.2/DQ2.2 - 24 years old female - bloating and diarrhea

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


roxieb73    3

DQ1/DQ1 (subtypes 5,6)

Negative blood

No intestional biopsy

Rash biopsy DH or Lichen Planus (they aren't sure which but both autoimmune gluten reactions)

Too many symptoms to list but most severe being Osteomalacia. I have Iron defcient anemia, and critically low vitamin D, elevated Liver Enzymes etc....

Share this post


Link to post
Share on other sites
1974girl    23

Dd is DQ2.5 and DQ8. Husband has the same but it turned out type 1 diabetic in him Dd has hashis and celiac and eosinophilic esophagus. She has no GI symptoms at all. It's all internal. Jury is still out on type 1. I am praying going gluten free will stop that.

Share this post


Link to post
Share on other sites
cyberprof    62

ME: Diagnosed by biopsy 2/12/07 Marsh I. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Symptoms: gas, intestinal pain, bloating, big D, mouth/canker sores, anxiety, joint and spinal pain, vitamin/mineral malabsorption causing low Vit D, low Vit B and ostopenia and general poor health and early menopause. All the above symptoms gone/relieved. T-scores for osteopenia are improved in five years.

Son, age 19: Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5)

Symptoms: Previously delayed growth. 75th percentile height and 75th percentile weight at age 4. 3rd percentile weight, 25th percentile height (5'3") at age 15. Significantly delayed puberty (past age 15). Bone age 12.1 at age 15. Stomach aches, intestinal upsets and general poor health. Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Went gluten-free, casein-free 3/15/08. Now 6'3" (Over six feet!) and doing great.

Share this post


Link to post
Share on other sites
Ads by Google:


IrishHeart    1,633

"views" ...means the number of people who read this post and this site(while surfing the internet)...not necessarily members who are "ignoring you and not responding", okay?

Those "numbers of views" mean nothing --in terms of people "unwilling to respond"... so, don't take it personally. :)

I have Double HLA- DQ2 (I am a 2.2, according to my genetic tests--which is a "rare" combo for celiac--about 1%)

I am a diagnosed celiac and I had dozens of symptoms (my story is well told on here, so I won't bore everyone again) and I was left UnDXed for over 35 years.

  • Upvote 1

Share this post


Link to post
Share on other sites
sa1937    324

I've read your post, am diagnosed by positive celiac blood panel and positive biopsies but I don't have a freakin' clue what my genes are. I suspect there are others in the same position who've read your post.

Likewise my adult daughter is also celiac and obviously got at least one of my genes but she has no clue what they are either.

Nonetheless, your question is an interesting one for those who know what genes they have.

  • Upvote 2

Share this post


Link to post
Share on other sites


Ads by Google:


Lisa    457

I've never been tested, and don't see the need for it.

  • Upvote 2

Share this post


Link to post
Share on other sites
cyberprof    62

"views" ...means the number of people who read this post and this site(while surfing the internet)...not necessarily members who are "ignoring you and not responding", okay?

Those "numbers of views" mean nothing --in terms of people "unwilling to respond"... so, don't take it personally. :)

I have Double HLA- DQ2 (I am a 2.2, according to my genetic tests--which is a "rare" combo for celiac--about 1%)

I am a diagnosed celiac and I had dozens of symptoms (my story is well told on here, so I won't bore everyone again) and I was left UnDXed for over 35 years.

IrishHeart, do you and/or your docs think that your severe symptoms are because of the heterozygos nature of your genes (hah! I wrote jeans first) or because of the 35 years? My genes are homozygous but I was undiagnosed for 30+ years.

Share this post


Link to post
Share on other sites

IrishHeart, do you and/or your docs think that your severe symptoms are because of the heterozygos nature of your genes (hah! I wrote jeans first) or because of the 35 years? My genes are homozygous but I was undiagnosed for 30+ years.

Cyberprof, are you homozygous (two copies of DQ2.5) or heterozygous (one copy of DQ2.5) ?

Share this post


Link to post
Share on other sites


Ads by Google:


IrishHeart    1,633

IrishHeart, do you and/or your docs think that your severe symptoms are because of the heterozygos nature of your genes (hah! I wrote jeans first) or because of the 35 years? My genes are homozygous but I was undiagnosed for 30+ years.

I really never discussed it much with him after we saw the test results.

To be honest, his first priority was to get me straightened out. I had many deficiencies and he only ordered the genetic tests as part of the full follow up diagnostic package on me.

I requested them because my Dad had suffered some strange & horrible gastro symptoms and had pernicious anemia and dumped hematocrits which required blood transfusions for 8 years. We know now that he certainly was a celiac, but it's too late for him. My Mom also suffered many symptoms and once she saw how this thing tried to kill me, and then looked at the gene test results, taking into account her own health history, she went gluten-free (Her doctor thought she was very wise to do it and her many symptoms have resolved and she is the most amazingly healthy 85-year- old there is. :) ) I had also hoped it would encourage my siblings to be tested (as they have many AI diseases) but to no avail.

When I see him for my checkup in October, I'll ask him his thoughts.

  • Upvote 1

Share this post


Link to post
Share on other sites
beachbirdie    43

Just adding to what others said...don't stress about the number of views vs. the number of replies, I think there are a lot of folks who just can't get the gene tests!

I am a DQ 2.2.

Lowest risk category but positive blood test. Vague non-classic symptoms...along with Hashimoto's disease.

A proud member of the "1% of the 1%" I guess.

Share this post


Link to post
Share on other sites
ravenwoodglass    1,214

I'm a double DQ9. You can see by my sig how much fun that was prediagnosis.

Share this post


Link to post
Share on other sites
hey    0

I just got genetic testing done a few days ago. Here are my results (been trying to figure out what they mean but it's so complicated):

DQA1 Genotype:

0505 (HLA-DQ2)

DQB1 Genotype:

0301 (HLA-DQ3)

0202 (HLA-DQ2)

Brief summary of my symptoms: I have many chronic fatigue symptoms, sleep apnea, mental fog, mild digestion problems, and am possibly hypothyroid (most of my immediate family members are hypothyroid).

Btw, I don't know if I'm gluten sensitive or not yet. I'm new to the gluten-free diet but haven't really noticed any improvement so far. I did have some kind of stool test done for celiac disease several years ago but it came back negative.

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
      107,874
    • Total Posts
      938,425
  • Member Statistics

    • Total Members
      65,773
    • Most Online
      3,093

    Newest Member
    nicorinse
    Joined
  • Popular Now

  • Topics

  • Posts

    • ennis how do you test for Candida overgrowth did I have to see a functional doctor or do medical doctors test. It would seem like a plausible  explanation to my symptoms. 
    • Hello everyone.    Ive been diagnosed with celiac for about 4 years now. It's been a rough road but I feel like I've gotten as good as I can get with eliminating gluten completely from my diet.    I am an undergraduate student with a driven passion to become a nurse (I'm a guy, I know). I love the field and can't wait to help people every day.   As some of you may know, the nursing curriculum is extremely intense. I have an very strict routine and schedule where I can handle the rigor of my classes, work, and fitness (I am really into health and fitness, it's the best release from the stresses induced from school. I get 6 hours of sleep on the dot and manage to work, volunteer, study, and eat decently well. I love my life when it's on this routine and am so happy and social with people around me. I'm making progress, I'm moving forward, making something of my life.    But lately I've been suffering. I've been getting sick a lot more often from what seems to be random uncontrollable cross contamination from various things. When I get sick, my routine gets all messed up, I fall off my schedule, and things start going downhill. I like to call it the "celiac rut" I get stuck in. When I'm sick I can't work out, without working out I get extremely stressed and can't sleep. Without sleep I can't focus on my school and you know, the slippery slope that pretty much leads to lots of depression and anxiety.    This. Absolutely. Sucks. I fall behind in school and have trouble focusing on my priorities because I need more sleep to heal, and I can't go to class or the gym when I'm throwing up or spending hours on the toilet. Plus the mental symptoms turn me into an angry antisocial gluten monster. So that's always fun.   I really don't know how to manage this. I feel like at this rate I won't be able to keep up with my daily life. I physically can not handle the lifestyle I have when I get sick, and it piles up because when I get better I'm like weeks behind in material in my classes.    I am am normally a super happy outgoing guy, I love being the person I truly am. But gluten is singlehandedly tearing my life apart and the depression is starting to take it's toll.    I honestly dont know what to get out of posting this. I just hope that someone has some sort of trick or secret to get through this awful "celiac rut."
    • Hello, I have the same issue with the hair loss a few months after going gluten free, I have been getting the b12 shot and was also told to take Vit D and Calcium, Also told it was because my guts are still not happy after all i put them thru, It's very upsetting losing the amount of hair I have, my right side of my head is about 65% thinner then the left...Was told it see a Diet person right away. 
    • There is sort of a detox/withdrawal thing for the first few weeks for most. Keep a food diary, often after a glutening a new intolerance will creep up for awhile. Sort of your body associating another food with gluten, and or it just being picky while damaged. Write down everything you eat, how you fix it, seasonings etc. Change up the diet, and look for patterns.  My own gut is being picky today and had D after 2 meals so I am rotating up and narrowing down the culprit tomorrow myself....only see 4 common things in my food dairy.
    • Thanks for your reply. I'm currently grain free, although I ended up making kitchary because I needed something of substance in my stomach. Seems to have helped. Some other symptoms coming on strong, so just hoping I have some answers soon, to make sure I'm at least on the right path!
  • Upcoming Events