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

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,246
    • Most Online (within 30 mins)
      7,748

    IRENEG6
    Newest Member
    IRENEG6
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.