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

Is Dq8 A Death Sentence?


jasonD2

Recommended Posts

jasonD2 Experienced

i found out that the celiac gene i have is Dq8 - i read it is the rare gene and can also predispose you to other autoimmune diseases. Am i basically screwed no matter what? i could already have another autoimmune disease and not even know it - i cant handle this!


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

You are so dramatic! :lol:

All kidding aside, DQ8 is rarer than DQ2, but not rare. DQ2 and 8 are the two genes they say a person must have to be diagnosed celiac...yet, you can carry these two genes, separately, together, or doubled and never develop celiac. Also, these are not the only genes which can cause autoimmune diseases. I have an autoimmune disease, and I am double DQ1.

Another thing I often wonder about, my sister was diagnosed celiac 9 years ago from flattened villi. Our dad did not have flattened villi, yet is gluten intolerant. I had the gene testing done, and have two DQ1 genes, which means, both of our parents have at least one DQ1 gene. Our dad isn't a celiac, and has one DQ1, our mom is not gluten intolerant, and has at least one DQ1 gene...so, what are the odds my sister has DQ2 or 8 genes? Slim, to none? DQ1 genes are considered gluten intolerant and neuropathy genes...now that's a double whammy, wouldn't you think?

Jason, there are much worse diseases and syndromes to deal with other than celiac disease. Celiac has a RX with rare side effects, if you go gluten free. Many celiacs are very healthy, once they remove gluten from their lives. My sister does great, she is a great cook, and even her family often prefers her gluten free food. If you go gluten free, many of your other symptons may disappear, or may not...there is not "for sure" answer until you change your lifestyle, and find out what happens.

I went undiagnosed for so many years...I was actively ill because of gluten for over 20 years, that we know of, how many years before that, we are not sure. I developed a Vit B12 deficiency, which caused my gluten ataxia, sensory and axonal neuropathy, and aids in my CFS problems. My neuropathy is showing slight improvement and I have been taking B12 for nearly 5 years. I also have a Vit D deficiency, which is finally improving, along with a ferritin deficiency.

Go gluten free and start thinking about getting better. You can do it!

Jestgar Rising Star

The HLA genes are associated, not causative. You could have none of the predisposing genes for autoimmune diseases.

jasonD2 Experienced

Thanks for the info- and yes i live for the drama sometimes ;-)

mysecretcurse Contributor

Hmm I don't know anything about gene's and testing, all I know is my body thrives and becomes very healthy and beautiful when I follow an allergen free diet. Don't stress, it's the worst thing for you!

Mtndog Collaborator

All I have to say is THERE IS NO WAY I'M DYING just because I have DQ8......unless that's 8 sundaes from Dairy Queen!

Now take a deep breath and repeat after me "My genes cannnot kill me, my genes cannot kill me" :P

jerseyangel Proficient
All I have to say is THERE IS NO WAY I'M DYING just because I have DQ8......unless that's 8 sundaes from Dairy Queen!

Now take a deep breath and repeat after me "My genes cannnot kill me, my genes cannot kill me" :P

:D I'll chime in about my DQ2 also--nope, not gonna get me!

Seriously, Jason--don't worry about your DQ8, just be as gluten-free as you can and try to relax and enjoy. ;) I have many intolerances too and sometimes it gets old but I focus on what I can have. Once you "own" this thing and are comfortable with what you need to do, it gets so much easier. :D


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



Celiac.com Sponsor (A8-M):



jasonD2 Experienced

Gracias all

I noticed on my report that it says DQ8 (DQA1 03XXm, DQB1 0302) and that the doc wrote down heterozygote/carrier/50% prob

does this mean i inherited one allele from each parent?

mommida Enthusiast

Well....

When we were goint through the testing. (What a waste of time nightmare.)

My daughter's genetic test came back DQ2 and DQ8 positive. My test came back negative, negative for anything Celiac related.

Being that this is my biological daughter, I had to ask if we even matched as mother to daughter. Prometheus labs would not comment, would not do the test over again, and then they explained statistically how INACCURATE the genetic testing is. 30% human error rate, genetic mutation, and falling into the 2% zone of missed genes ( because at that time the test was supposed to be 98% accurate. (Insurance didn't cover all of the amount and we payed a lot of money for not a lot of answers, just more questions. <_< )

I did some research into really off the wall genetic issues such as fetalmaternal microchimerism and diagnosed chimeras with no visible characteristics.

So to wrap up this rambling, live your life and don't take this genetic test too serious. As it is not a certain direction for anything in your life. :D

JennyC Enthusiast

I'm HLA-DQ 08 (0302) and 02 and I do not even have celiac disease, my son does. (But it's quite obvious where he got the gene! :blink: ) I don't have any autoimmune issues at this time, but I do experience intense inflammation very easily. It's not a death sentence. Just be sure to listen to your body.

heathen Apprentice

it's really important to remember that the genetics we know about are just PREDISPOSITIONS! there are Celiacs who don't have any of the known genes and plenty of people who have them without Celiac Disease. Like most things, Celiac is a combo of genes and some environmental factor (illness, exposure, etc) we haven't figured out yet. While you are technically your genes, YOU ARE NOT YOUR GENES. further, DO NOT BE DEFINED BY A DIAGNOSIS!!!!

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. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,156
    • Most Online (within 30 mins)
      7,748

    mike101020
    Newest Member
    mike101020
    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

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • 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!    
×
×
  • 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.