Jump to content

  • 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):

Dq-1 Question

Gemini

Recommended Posts

Gemini Experienced
Gemini
Posted

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!

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

Celiac.com Sponsor (A8-M):


MsCurious Enthusiast
MsCurious
Posted

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.

frieze Community Regular
frieze
Posted

m.hadjivassiliou@sheffield.ac.uk

MsCurious Enthusiast
MsCurious
Posted

m.hadjivassiliou@sheffield.ac.uk

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442
    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...