Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Dq-1 Question
0

4 posts in this topic

Did anyone on this forum who was gene tested come back as a DQ-1 or double DQ-1 and then go on to have a positive biopsy? Any info on this would be greatly appreciated!

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi Gemini,

I'm curious about others who have double DQ1 as well. My Dad has double DQ1 subtype 6 and has MAJOR issues with ataxia.. balance issues started about 6 years ago...but they didn't put two and two together, walks with a wide gait, had chronic hives for close to four years and no doctors could relieve them. He is considered by the medical community to be "wheelchair bound" although he gets around with a walker and assistance from my mom, but has falls way too often. There are many other things ... difficulty swallowing, slurred speech, arthritis, joint pain... so many things.

After trying to get doctors to listen and test him, I finally went with him to a doctor appointment and asked if they would test him. When they said no, I said... is it okay if he goes gluten free? The doctor said, well, it certainly won't harm him, but its not going to help either. My dad went gluten free in April, and his chronic hives went away, his gait is more normal, his speech is improved, his strength is better. His doctor was stunned to find that out that his 4 years of chronic hives were gone, and is going to try gluten free on 4 other patients with chronic hives that he hasn't been able to treat successfully.

We saw Dr Joseph Murray at Mayo Clinic in Rochester, MN (head of Mayo's Celiac Research Dept and practicing GI) a couple of weeks ago... who said, almost all people he sees with gluten ataxia are wheelchair bound at their first visit, because this doesn't get diagnosed accurately or quickly and there is about a 6 month window from onset to no reversal of neurologic symptoms. I should add to this that my dad was always VERY athletic, agile, active... and for years... you would never have suspected that gluten was doing its dirty work on him. He is now a very different person from the dynamo that he was. Gluten takes its toll in a very very destructive way. Also, people should be aware that 15 percent of celiacs have digestive issues... 85% do NOT. Digestive issues were thought to be key, but they've realized that the people with digestive issues screamed loudly and that's why they were heard... others didn't have those types of symptoms... therefore didn't/don't get diagnosed.... for a VERY long time... if ever. There are so many doctors that are so clueless. Gluten is a systemic poison...and it doesn't affect just intestines (although that is a primary symptom for me personally... it isn't the case for my dad).

Please...if you or someone you love has symptoms like these... and double DQ1... get them to go off gluten PRONTO! It is pure poison to their system. My dad unknowingly ingested the toxic gluten for 80 years and it wasn't until he'd ingested it for 65 years that symptoms showed up.... damage had been done for years and years. My Mom is diabetic and carries the DQ2.5 celiac gene... I have that from her and the gluten sensitive gene from my dad.... an unlucky combination, but I finally was diagnosed with celiac after many many years, and things have turn around 98%!!! I feel like a different person. It scares me to no end that I could have ended up like my dad in 25 years. Don't let them tell you double DQ1 isn't a big deal...its a HUGE deal. :( There are studies being done ... and in fact a paper was publish about it, but most doctors don't stay abreast of the research papers like they should. You'll find it if you Google it.

I don't know if ALL of my dad's issues are caused by gluten, but a good chunk of them seem to be directly related. And I know what it does to me, and I have 1 DQ1 gene. Good luck to you... hope you find the answers you seek.

0

Share this post


Link to post
Share on other sites

m.hadjivassiliou@sheffield.ac.uk

0

Share this post


Link to post
Share on other sites

m.hadjivassiliou@sheffield.ac.uk

Thanks frieze... that's the one! B)

0

Share this post


Link to post
Share on other sites

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
0

  • Forum Statistics

    • Total Topics
      104,123
    • Total Posts
      919,495
  • Topics

  • Posts

    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
    • Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old.  Life is going to get harder for her.  Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.   In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years.  His parents were perplexed.  Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease.  So, he ate pizza.  He was too embarrassed to tell his parents.   My daughter does not have celiac disease.  She was first tested two years ago.  Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year.  It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.   It certainly sounds like your younger children should be screened.   I wish you both well!      
    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
    • I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  
    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,161
    • Most Online
      1,763

    Newest Member
    Jashan8534
    Joined