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
      104,655
    • Total Posts
      921,623
  • Topics

  • Posts

    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,657
    • Most Online
      3,093

    Newest Member
    pablito
    Joined