Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anyone Else Dq2.2 Homozygous? I Have Q's For You.


Chakra2

Recommended Posts

Chakra2 Contributor

Does anyone else here know that they have 2 copies of the DQ2.2 gene? I would be interested to know more about what your symptoms were/are and what the age of onset was for those symptoms. And if we're related! (ha, ha)

I had daily vomiting as an infant, bladder infections and constipation as a child, waning of symptoms until adolesence, joint pain/mild digestive issues/lots of belching and gas as a teenager, mild anemia/low good cholesterol/severe D alternating with C/ sudden dairy intolerance after college, waning of symptoms in grad school (except by then I thought of D and C cycles as normal digestion), then at 33 one year after first child born symptoms became more problematic. Bloating, lower abdominal pain with every meal, seemed suddenly "allergic" to all kinds of food that had never bothered me before, continued hairloss long after postpartum time period, fatigue, depression, irritability, and the continuing D and C.

Just curious about how many out there have diagnosed celiac with 2.2/2.2, how many have gluten intolerance, and whether or not the severity of symptoms in either of those cases is linked to having the "lower-risk" genes.

Thanks!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Mari Enthusiast

I had the test at Enterolab and have 2 DQ2 markers - 302 and 602. They did list the serologic equlivent but can't remember it. There was a note that said I had one main celiac gene and the second DQ2 made the disease worse. I had symptoms of low energy, food sensitivities by age 4, and slow growth, leg pains. I didn't begin to have intestinal problems until I had a Salmonella infection when I was 19. I developed endometriosis in my 20's and increasing problems with chemical sensitivities. I never felt well but Drs kept telling me I was OK, just get more rest. One brother developed Type 1 Diabetes in his 30's and all 4 of us sibs had food sensitivities as young children.

Gemini Experienced

Does anyone else here know that they have 2 copies of the DQ2.2 gene? I would be interested to know more about what your symptoms were/are and what the age of onset was for those symptoms. And if we're related! (ha, ha)

I had daily vomiting as an infant, bladder infections and constipation as a child, waning of symptoms until adolesence, joint pain/mild digestive issues/lots of belching and gas as a teenager, mild anemia/low good cholesterol/severe D alternating with C/ sudden dairy intolerance after college, waning of symptoms in grad school (except by then I thought of D and C cycles as normal digestion), then at 33 one year after first child born symptoms became more problematic. Bloating, lower abdominal pain with every meal, seemed suddenly "allergic" to all kinds of food that had never bothered me before, continued hairloss long after postpartum time period, fatigue, depression, irritability, and the continuing D and C.

Just curious about how many out there have diagnosed celiac with 2.2/2.2, how many have gluten intolerance, and whether or not the severity of symptoms in either of those cases is linked to having the "lower-risk" genes.

Thanks!

Yup...I am the proud recipient of a double, dog dare DQ-2! :lol: I thought I had triggered in my late 20's (I am 51 now) because of the severe stomach pain I endured after eating but in retrospect, I may have triggered as a very young child. I always had stomach pain and discomfort and can remember being sick back to the age of 4. It came and went. I was also extremely pale and thin, compared to everyone else. Back in the 1960's, people did not drag their kids off to the doctors all the time and sought professional help when they were sick only. I am not sure Celiac would have been looked for in the early 60's, to be honest. I was diagnosed Celiac via blood work as I failed all the blood tests by huge numbers. I declined the biopsy because I was suffering from severe nausea all the time and couldn't deal with having a tube shoved down my throat.

My appendix nearly ruptured at the age of 8 and I had an emergency appendectomy. My intestinal tract was all inflamed but they blamed that on the bad appendix. My teen years were OK but that could have been my honeymoon phase of the disease. The other HUGE clue was I always took excellent care of my teeth yet I had horrible tooth and gum issues. The dentist was always so perplexed by this. My 2 center, lower teeth came in with no enamel on them, which I had to have capped. I was also painfully thin and many in high school thought I had an eating disorder. That really hurt because I have never had any kind of eating issues other than food caused me pain at times. I love to eat.

When I read books on Celiac Disease and saw just how many symptoms I had over the years, I was downright PO'd that it was missed for so long. I had almost every know symptom for it, except acid reflux. Mouth sores, neurological symptoms, failure to gain any weight ever...the list goes on and on. Along the way I developed Hashi's thyroid disease, Sjogren's Syndrome, Reynaud's

Syndrome and I still cannot digest lamb. All other meats are fine but I just cannot eat lamb.

I have read that those with a double DQ-2 or 8 will have the severest form of Celiac and that makes sense. Double trouble! I have successfully eradicated gluten from my diet and it literally was like a miracle cure. All symptoms gone and I have never felt better. So, now I have to be careful I don't offend people with my obnoxious anti-gluten stance because, from where I am standing, I think a boatload of folks I know have it and they don't want to go there! :ph34r:

nora-n Rookie

mari, 0302 is DQ8, the other main celiac gene, and 06* is DQ6 which is a subtype of DQ1.

Check the charts at the HLA DQ page on wikipedia.

  • 1 year later...
Lynn-M Newbie

I was tested by Enterolab as having HLA-DQB1 0202 for both Allelle 1 and Allele 1, which indicates non-celiac gluten sensitivity.

When I was a kid, my legs would ache a lot in the evening. I was always asking my Dad for a leg rub. I didn't have problems with any foods, but I hated drinking milk, which my parents would force me to do.

I'm only 5'1", despite having several brothers well over 6' and many tall relatives. I definitely am the runt of the family. As an adult, I had some gas and bloating, but it didn't seem extraordinary to me. I had about 20 cavities by my 50s, even though I didn't eat much of anything that had sugar in it, nor drink any soda, nor eat much processed food. I thought I ate a very healthy diet, which included lots of homemade "healthy" whole grains.

I was diagnosed with osteoporosis in my late 50s, despite taking lots of supplements and exercising. My teeth are not very white - they look transparent at the tips. My fingernails have strong vertical ridges and the white at the tips is transparent where the ridges extend into the white area. As an adult, my feet, knees, elbows, and hands would ache a lot. I would get canker sores occasionally. I can drink my homemade kefir made from raw milk, but I get a lot of bloating from commercial milk.

I never did blood testing for celiac. After my osteoporosis diagnosis, I did the Enterolab stool gluten sensitivity panel. My Antitissue Transglutaminase IgA was 9, my antigliadin IgA was 8 (normal is <10 for both of those), my fecal fat was 94 (<300), so they said there was no direct evidence of gluten sensitivity. So I kept eating gluten, although I was concerned that my numbers were so close to the threshold for diagnosis. My B12 was low on a Spectracell test, and my blood tests stayed in range but showed low iron, low protein, low RBC, and high MCV.

Eight years after the stool test, in December 2011, I heard a radio show about genetic gluten testing and decided to eliminate the doubt I had about eating gluten once and for all. So now I have no doubt that I should not eat gluten. I never felt that bad before, but I haven't had any bloating since I stopped eating gluten over a month ago.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Seeking advice on potential gluten challenge

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Seeking advice on potential gluten challenge

    3. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

    5. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Seeking advice on potential gluten challenge

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,154
    • Most Online (within 30 mins)
      7,748

    Kathy N
    Newest Member
    Kathy N
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
    • trents
      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.