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

DQ6 and Celiac


AuntieAutoimmune

Recommended Posts

AuntieAutoimmune Newbie

Does anyone here have any knowledge of studies that were done in India that showed that HLA DQ6 can be an indicator for a form of Celiac disease? This form appears to attack people neurologically as well as gastrointestinal. I learned about this from a nurse who is very involved in the gluten-free community. I am a double DQ6, and before being diagnosed with NCGS, I could barely walk, and I had all of the gastro issues, too, including mouth sores. To date, I have been diagnosed with Sjogren's, Hashimoto's, and Raynaud's.

I have always said that my form of NCGS would someday be classified as autoimmune, and I am trying to find out more. Any help appreciated. Thank you!  


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



Celiac.com Sponsor (A8-M):



trents Grand Master
(edited)

Auntie, I tend to agree with you. My impression is that the more we learn about gluten-related disorders the more we realize they don't very well fit our former neat little categories that reflected the assumption that they were separate and distinct conditions. My observation is that many of our forum participants who have been diagnosed with NCGS have neurological manifestations. And I think it is becoming obvious as more research is done that we have a very incomplete picture of the genetics of gluten-related disorders.

Edited by trents
Wheatwacked Veteran

 It might have been an article here on Celiac.com. I did find one from 2021.

"People with two copies of specific genes, such as HLA-DQ7 (a form of HLA-DQ3 that's similar to HLA-DQ8), risk very strong reactions to gluten, just as people with two copies of HLA-DQ2 can develop very severe celiac disease, [Dr Fine] says."  Do You Need Specific Genes to Have Gluten Sensitivity?

 

AuntieAutoimmune Newbie

Thank you so much, Wheatwacked! 

  • 2 weeks later...
Posterboy Mentor
On 7/12/2022 at 10:30 AM, AuntieAutoimmune said:

Does anyone here have any knowledge of studies that were done in India that showed that HLA DQ6 can be an indicator for a form of Celiac disease? This form appears to attack people neurologically as well as gastrointestinal. I learned about this from a nurse who is very involved in the gluten-free community. I am a double DQ6, and before being diagnosed with NCGS, I could barely walk, and I had all of the gastro issues, too, including mouth sores. To date, I have been diagnosed with Sjogren's, Hashimoto's, and Raynaud's.

I have always said that my form of NCGS would someday be classified as autoimmune, and I am trying to find out more. Any help appreciated. Thank you!  

AuntieAutoimmune,

You asked about India....since you are an Auntie I will assume you are from India as well?

Are you from Northern India by chance.

Some of the symptom's you have mentioned can also be confused for Pellagra or more properly Pellagra Sine Pellagra....

Unless you have per fuse skin issues it is probably only the Psuedo Pellagra form of the disease.

Mouth sores can be a sign of Vitamin B2 deficiency.

Here is an article about it....

https://glutenfreeworks.com/health/tongue-magenta-swollen/

This is more noticeable (and common in Northern India) because they have a high dependence on Jowar aka Sorghum....in their diet.....

Here is research about it.....

https://pubmed.ncbi.nlm.nih.gov/744647/  

You can try a gluten free flour made of Sorghum to see if it helps or makes your symptom's worse then you will have your answer.

Here is a nice thread about it...

Taking Niacin aka Nicotinic acid  in low but frequent doses (like 50mg 3x with meals) might be helpful for your skin issues associated with Sjorgen's diagnosis as well!

I wrote a blog post that might be helpful to you.

Good luck on your continued journey!

I hope this is helpful but it is not medical advice.

Posterboy by the grace of God,

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

    2. - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

    3. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,959
    • Most Online (within 30 mins)
      7,748

    jenny44
    Newest Member
    jenny44
    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

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • 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.