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.

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

14 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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....

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Thanks for those who replied.

More than a 100 views and 3 replies ! Lol so co-operative ! I'm not asking you for your credit card number just to clarify :P lol

2

Share this post


Link to post
Share on other sites




"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.

1

Share this post


Link to post
Share on other sites

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.

2

Share this post


Link to post
Share on other sites

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

2

Share this post


Link to post
Share on other sites

"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.

0

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) ?

0

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.

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.

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

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
      103,371
    • Total Posts
      917,535
  • Topics

  • Posts

    • Newbie Mom - How is my son feeling?
      Hugs to you and your daughter. My son and I are in the same boat, or at least,  paddling alongside your boat.  At their age being scrupulous about their diet is not only incredibly hard but socially isolating. Adults consider celiac people to be a pain so imagine what their young friends think.  Feeling so unwell and having no energy adds to their distress. And the thing is - I don't think at that age that they really understand that even the slightest bit of gluten will set them back badly.  I know my son is convinced one sweet won't matter. It really really sucks.  
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      No one in my wider family gets it, although my sister is certainly trying to understand. She gets that I will bring all food for my coeliac kids when we come for meals and is okay with that.    For other social events, I will suggest the meal is at my place so I can control the gluten.  But my biggest battle is my children's father (my ex husband) who refuses to get it, and thinks I am being stupid and trying to prevent him seeing V.  I have offered that V can visit but not eat nor stay the night.  Ex does not have the means or the brains to manage gluten free meals.    At this point it looks like I may need to go to court to get an order to prevent V from being forced to go and get glutened. I really really hope to avoid this, but its not looking good. 
    • celiac disease is psychosomatic
      I guess it's the "natural flavoring" which throws me off. It could or could not contain gluten and it's in so many products. I haven't been on a gluten-diet for as long as you...6 years. I may have bee undiagnosed and untreated for more than 25 years since i had signs that went back to chidhood. Yes, I have balance/anxiety/neuro issues. I know anxiety is connected to damage in intestines, but I don't know for sure if celiac causes balance/neuro issues. I was already tested for brain ataxia, but I didn't get too far on that. Well, there wasn't an exact test, but the neurologist noted that I was walking straight or something on those grounds so I must not have it. I know studies have shown Transglutaminase 6 antibodies indicate gluten ataxia, butthat test is not yet available to the public.  
    • Newbie: mother to coeliac kids
      Today is day 5 and I know it takes much longer to recover, but he is so ill today he has skipped school and is in bed asleep when he is not writing around in pain.   I will interrogate him later - there is a chance he ate something from his friends.  
    • celiac disease is psychosomatic
      after nearly 6 years gluten free, i still have some balance/anxiety/neuro issues.  they're the last to leave the symptom party, i'm afraid.  i attribute this to the years and years i went undiagnosed and untreated (25 years~! )  i don't have much faith in the medical field's intelligence or in their ethics. funny story:  my obgyn bill had a charge on it that my insurance denied - $25.00 for 'smoking cessation intermediate 5-8 min'  WHAAAAAT?!  (the doctor said it would be a good idea if i quit smoking.  i'm like 'no shit, sherlock')  called the billing office and told them i'm not paying it.  WHY?  1.  do you have any idea how much money i would owe my dad????!!!  2.  i don't smoke with my vagina.  they took off the charge
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • 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
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,516
    • Most Online
      1,763

    Newest Member
    milliew
    Joined