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

Genetic Testing - Double Dq8 - Anyone Else Have The Double?


GFinMN

Recommended Posts

GFinMN Apprentice

just got my genetic test results back from the mayo clinic. double DQ8. the doc thinks that is causing me to be an extremely sensitive celiac, more than most. does anyone else have the double? does it really make a difference? i'm new to this genetic stuff and don't totally understand it.

thanks.


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



Celiac.com Sponsor (A8-M):



gfpaperdoll Rookie

oh wow, I have never heard of anyone being double DQ8. Most people seem to have a DQ2 & a DQ8 or DQ2 & a DQ1, or DQ8 & DQ3, etc, in other words either one of the gluten genes & one of the gluten intolerant genes, or one of each of the gluten genes, or two gluten intolerant genes.

Those of us that are double DQ1, know that it is a bummer with a lot of neurological stuff & additional food intolerances/allergies... Most double DQ1 people I know also cannot tolerate dairy. I cannot tolerate grains...

I recently read a post by someone that was double DQ2 & it seems that they had it very bad also.

I wonder if it is having the two copies of the same gene that is so bad?????

Would you mind giving us a list of your health issues?...

ravenwoodglass Mentor

I am the only one in my family to have the gene test. I am not a DQ8 but am a double DQ9. In my case that double dose did seem to lead to more sensitivity than most. I would imagine a double of any gene would cause an increased sensitivity to what ever that gene predisposes us to.

GFinMN Apprentice

yeah, i seemed to be A LOT sicker than any of the other celiacs i know. mine came on very suddenly. within one week i had tingling in hands and feet, pins and needles over entire body, unable to swallow food, major nausea. this was pre-diagnosis. first they thought i had MS or some neurological disorder, then ruled all that stuff out and finally found celiac thanks to gastro doctor. i also developed a major limp in my right leg. thankfully, all the neuro symptoms went away once i went gluten-free. however, i have been at the mayo clinic cause my stomach isn't healing and i have developed reactive-hypoglycemia. that's when the doc discovered the double DQ8. i am VERY strict with diet - don't eat out, no cross contamination, checked all hair and beauty products, yet my intestine is still inflammed according to the mayo. the doc said he has seen this happen in people with the double gene.

gfpaperdoll Rookie

gluten-free in MN, you might need to try going dairy free also, & for a time grain free, you might be able to add some things in later. But for now, I would play it totally safe & not eat any grains. I would also not eat soy, no one needs soy. No artificial sugar. just rethink everything that you are eating. I think that you can still get some great meals with a limited diet of meat, seafood, veggies, fruits & nuts. maybe eggs if you do not have a problem with eggs.

I know that it is difficult to change your eating habits but the rewards are so worth it.

I know you will be better soon...

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

      ttg iga high (646 mg/dl) other results are normal

    2. - knitty kitty replied to Rejoicephd's topic in Related Issues & Disorders
      4

      Basic metabolic panel results - more flags

    3. - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      ttg iga high (646 mg/dl) other results are normal

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

      ttg iga high (646 mg/dl) other results are normal


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,330
    • Most Online (within 30 mins)
      7,748

    Strider55
    Newest Member
    Strider55
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Rejoicephd, I'm not a doctor, but I experienced severe thiamine deficiency.  Your symptoms seem really familiar.  Malabsorption is a real thing that happens with Celiac.  A multivitamin is not going to prevent nor correct nutritional deficiencies.    Doctors do not recognize nutritional deficiency symptoms.  Gastrointestinal Beriberi is not recognized often.  Caused by thiamine deficiency, high dose thiamine supplements or IV administration with other vitamins, minerals and glucose under doctor's care is needed.   Thiamine deficiency is found in anemia.  Thiamine deficiency in the kidneys can result in electrolyte imbalances and cloudy urine.  Thiamine deficiency can cause high blood sugar which can cause cloudy urine.  Dehydration can cause cloudy urine.   I'm linking some PubMed articles.  You see if your symptoms match.  Discuss the possibility of Gastrointestinal Beriberi with one of your specialists soon!  Just to rule it out.  I'm very concerned.   I'm linking some PubMed articles.  You see if your symptoms match.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/#ref3 From Section 3: "In conclusion, TD limited to the gastrointestinal system may be an overlooked and underdiagnosed cause of the increasingly common gastrointestinal disorders encountered in modern medical settings. Left unattended, it may progress to wet or dry beriberi, most often observed as Wernicke encephalopathy.". . And... Refeeding Syndrome https://www.ncbi.nlm.nih.gov/books/NBK564513/
    • trents
      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
    • kpf
      Thanks so much. This is what I thought but really wanted a second opinion. I appreciate this. 
    • xxnonamexx
      I have heard about numerous food sensitivity tests blood and the prick and how nothing is very reliable I think trial and error probably best bet.
    • trents
      As ShariW explained, soy itself doesn't contain gluten but most soy sauces sold in stores and used in restaurants contain wheat as an ingredient so they are not gluten free. As I understand it, there are two traditional ways of making soy sauce. One way contains wheat and one doesn't. The most popular one found out there in the wild does contain wheat, however. Kikkoman offers a line of gluten-free soy sauce and Teriyaki products that are often sold by grocery store chains like Safeway. There are food allergy/food sensitivity tests available and your physician can order them or give you a referral. They fall into two categories, the skin prick kind and the blood test kind. One you might look into is called the ALCAT test which might be the most helpful for foods. However, the reliability of these things is questionable. The results can be helpful as a place to start but the results often don't match up with real life experience. There are reasons for this and you might do well to research food sensitivity testing reliability on the Internet. 
×
×
  • 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.