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 A Subtype (5,8)?


johanna

Recommended Posts

johanna Newbie

I have the DQ8 gene which isn't as common as DQ2. I'm curious about others with similar genes and what their health conditions are b/c I wonder if there are any trends associated with this gene combination. My test results showed problems with gluten and casein. I also have seasonal allergies and a number of mild food allergies. And probably totally unrelated, but b/c there is believed to be a genetic component will mention it--have severe adverse reaction to fluoroquinolones that affect my tendons.


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



Celiac.com Sponsor (A8-M):



Nancym Enthusiast
I have the DQ8 gene which isn't as common as DQ2. I'm curious about others with similar genes and what their health conditions are b/c I wonder if there are any trends associated with this gene combination. My test results showed problems with gluten and casein. I also have seasonal allergies and a number of mild food allergies. And probably totally unrelated, but b/c there is believed to be a genetic component will mention it--have severe adverse reaction to fluoroquinolones that affect my tendons.

I have DQ8 (that's 0302 isn't it?) and also 0501.

I'm also casein intolerant. My symptoms were IBS, autoimmune thryoid disease, lots of joint/muscle aches. I don't have allergies. I think I also get brain fog from gluten. I've heard the 0501 gene is tied to neurological effects of gluten intolerance.

What are fluoroquinolones found in?

johanna Newbie

It's a class of antibiotics. I took cipro with no problem, but then with avelox I was disabled for a couple of months. Still have mild lasting effects 5 months later. This reaction seems to run in families, but they're not exactly sure what causes it.

dlp252 Apprentice
I have the DQ8 gene which isn't as common as DQ2. I'm curious about others with similar genes and what their health conditions are b/c I wonder if there are any trends associated with this gene combination. My test results showed problems with gluten and casein. I also have seasonal allergies and a number of mild food allergies. And probably totally unrelated, but b/c there is believed to be a genetic component will mention it--have severe adverse reaction to fluoroquinolones that affect my tendons.

I have DQ8. Also have seasonal and year round allergies. I have lots of intestinal symptoms and a lot of lightheadedness and brain fog, joint pain, acid reflux, and many more, lol. I am also casein intolerant and have other sensitivities which I haven't nailed down yet. I only showed 4 slight reactions when I had my food allergy test about 3 years ago...there may be more now though.

  • 2 years later...
Hallie Davis Apprentice

I, too have the DQ8 gene. I also have lupus/CREST overlap syndrome (lots of aches and pains), IgG kappa monoclonal gammopathy, some sort of neuropathy (aching, burning hands and feet), with skin nerve biopsies showing progressive loss of nerve fibers), Hashimoto's (autoimmune) thyroiditis with slight goiter and hypothyroidism, mild liver inflammation showing up on PET scan. I was negative for viral hepatitis, and have never drunk more than a couple beers a week, so I suspect this is autoimmune liver inflammation. There are periods of time when my arms go numb every night no matter what pillow (or none) that I use. My 5 herniated discs were definitely NOT present when the arm numbness began. I suspect the CREST is affecting my peripheral circulation, and that may be contributing to the neuropathy. I have mild occasional reflux which can go along with CREST also. I also have osteopenia, and a history of "frozen shoulder". I do not have the celiac antibodies, and a duodenal biopsy was negative for villous atrophy. I do have many allergies, however, including nickel, thimerosal (also mercurachrome, merthiolate and anything else with mercury in the compound), Macrodantin (nitrofurantoin), benzoil peroxide, monocryl and vicryl suture materials, PABA, Monistat, nonoxynol-9. I do not seem to metabolize Ultram or Rozerem properly, possibly because the liver inflammation. The first pill of each of these is okay, but the second dose hours or even a day later, causes an ensuing 18 hours of vomiting. Because treatment for hypothyroidism was delayed for about 4 years, moderate-to-severe obstructive sleep apnea occurred, and I must now sleep with a CPAP machine to keep my airway open.

Because I have so much of the autoimmune stuff that can go with DQ8 and/or celiac disease, even though I don't have celiac disease, I have opted to go gluten free in the hopes that this will lessen my autoimmune problems, and prevent the creation of new ones, such as diabetes and MS.

  • 7 months later...
RollingAlong Explorer

DH has the DQ8 and DQ5. He is intolerant of gluten and casein and has given them up. The tests show he is allergic to soy and eggs also but they are not totally out of his diet yet.

He had no GI symptoms before accidentally going gluten-free. Instead he seemed to be developing pre-diabetes, despite being slender and exercising. He also had problems with mood, a mild depression or lack of motivation. He needed a great deal of sleep. He was starting to get headaches. Heartburn. And ED, not explosive diarrhea, the viagra kind of ED. On the gluten challenge, he developed new symptoms - a never ending burp, one week long bout of symetrical hives (didn't look like DH, not intensely itchy), fevers/chills and once his fingers and knees got very swollen. (His challenge ended with a negative biopsy. )

He felt the brain fog was related to the casein, or at least, he got a lot of improvement once he went CF.

He has tinnitus, but I am not certain if that's related. Oh, and I forgot about the canker sores - those are gone now!

His sister has ulcerative colitis, which is arguably autoimmune. I think DH was very lucky and caught his gluten problem early, because he's doing a lot better gluten-free/CF. Blood sugar, ED, much improved.

He does not seem to react to gluten now, which makes me nervous. It seems very unlikely he hasn't made any mistakes....

Mother of Jibril Enthusiast

I have DQ8 and DQ7 (which are both subtypes of DQ3). I'm intolerant to gluten and corn. Aside from the digestive symptoms, I also have autoimmune hypothyroidism and lots of weird problems with my skin... rosacea, flaky scalp (which seems to be either psoriasis or sebhorreic dermatitis), halo nevi (depigmented areas where my skin is reabsorbing a mole), dermatofibromas (little hard lumps of tissue that I recently found out are benign tumors), acne, autoeczema (an itchy rash in reaction to gluten), and a mysterious rash on my butt that I've had forever and has never been diagnosed as anything in particular. I also have joint pain in my knees, shoulders, and hips that comes and goes... but has mostly been a lot better since I changed my diet. Oh... and chronic dry eyes with inflammation, which requires prescription eye drops and periodic checks for glaucoma. <_<

In addition to celiac disease, DQ8 has been associated with type I diabetes, rheumatoid arthritis, lupus, Sjogren's syndrome, and antiphospholipid syndrome. But... keep in mind that lots of people have these genes without ever getting these disorders (it requires some kind of trigger like severe stress or a virus). Also, a lot of these disorders are based on more than one gene.


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



Celiac.com Sponsor (A8-M):



  • 1 year later...
ellie-lynn Newbie

This thread is kind of old, but I'm fascinated by the idea that similar constellations of symptoms might be connected to these different types of genes. For those who know your gene type, I'm wondering how you found out -- did a particular doctor or specialist order the tests? Did you ask for them yourself? I don't know what gene type I have, but my celiac symptoms were more neurological and autoimmune (I had only very subtle GI symptoms). My bloodwork for celiac was off the charts, so they didn't make me do a gluten challenge and biopsy to diagnose.

I'm seeing an allergist for the first time next week, and am wondering if I should ask about the gene testing. I went gluten-free 5 months ago (in December) and had been getting steadily better. I developed joint pain, but that went away with elimination of nightshades. Then in early April my face broke out all over and I started to have mild OAS reactions to foods that had been ok before. I'm thinking maybe it's the pollen, but I'm afraid that this is going to be the start of more new permanent allergies. Anyway, I'd be curious to hear more about if and how celiac patients and docs are using this gene info to troubleshoot symptoms and additional diseases (I developed Hashimoto's autoantibodies, but it hasn't messed up my TSH yet -- am hoping the gluten-free diet will keep this subclinical ...)

Luvbeingamommy Contributor

This is interesting. To pp, my GI doctor did the Celiac gene test and then I also did with Enterolab which tests for gluten sensitivity also.

I am not familiar with the subtypes, I know I have the one related to neurological problems. I had a stroke in Nov. at 25 years old, nothing was found but celiac, that I pushed for testing. After the gene tests and a TON of other tests, my neurologist believes it's related to the gluten. Kind of still baffles my mind, luckily I recovered well, but it was still scary.

Can anyone tell me what genes I have again??

This is what I have- HLA-DQB1*0201 or HLA-DQB1*0302 and any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302. Not sure exactly what that means, but I did find it was related to neurological issues.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,807
    • Most Online (within 30 mins)
      7,748

    MoonBear
    Newest Member
    MoonBear
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • nanny marley
      Oh yes I can understand the tiredness after going threw all that, must be exhausting especially on the mind I have high aniexty so I can understand that , I wish there more easier ways for people to get help , I had a MRI on my spine some years ago without anything it was really quick and no prep , I understand the need for  them to see better with the bowel ,but you think they would use something a little less traumatic  for ibd sufferers on the bowels by now ,I hope your feeling better today 🙏
    • Colleen H
      I wonder if tingling burning feet are part of it.. I'm not sure if it's the med reaction that people with gluten intolerance get or the food we ate  It's frustrating because a person who did not want to admit to himself I had this condition wanted me to eat this chicken sandwich and now I'm stuck with a variety of symptoms plus now I'm hungry on top of it..  I'm new to this so I forget that "one bite" of the wrong thing can hurt us.😔. Do we stop eating if someone exposed us to gluten ??  My stomach is rumbling but my joints hurt ...  It's weird because I can feel the anxiety coming on.  I get joint problems ,  I don't know if anyone ever got hot flashes?? I suppose if it affects people head to toes you can get that too.   It's weird...hard to decipher what is what.   Also how long do I have to deal with this attack??  Makes me feel like not getting up out of bed.  I get too many symptoms which  horrible.  Thank you for your response..  
×
×
  • 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.