Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

We Need More Research On Dh


itchy

Recommended Posts

itchy Rookie

There are always so many questions about DH, and so few concise answers.

I would be helpful if there was more research on the problem. I think it would be relatively easy to shed light on some of the DH questions. Perhaps even 'citizen research' among us would work if someone was willing to take on overseeing the project. A few people willing to intentionally gluten themselves under semi controlled circumstance, and then keep a diary of the results might add some really helpful knowledge.

I think we should ask the leadership of our American, British, Canadian, Australian, etc. coeliac associations to focus some attention on some of the simple questions regarding DH. I urge you to write them.

Some questions:

1. What is the effect of physical contact with gluten containing substances.

2. How quickly does a response to gluten take after ingestion of gluten.

3. What is the response to iodine.

4. What is the specific effect of various substances that might 'cure' DH.

There are probably many more questions that people want answered.


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

I agree 100%.

I'd love to volunteer to be glutened; however, since I get neuro symptoms I respectfully decline.

I am sure I'll get glutened (and therefore an outbreak) anyway, so it would be great to be able to report those episodes.

Hopeful1950 Explorer

Here is a link to very current article in "Skin and Allergy News" explaining that the practice of dermatology is moving away from "medical" dermatology and focusing on aesthetic dermatology and surgical procedures. Patients who are sick with chronic conditions are being pushed off to other specialties. Research is going by the wayside. All in the name of the mighty dollar I'm sure.

Open Original Shared Link

I think it will take one doctor, with access to funds, to come down with a terrible case of DH for research to actually take off. Since it isn't "life threatening" nobody is interested.

pricklypear1971 Community Regular

Interesting article.

I've always noticed Derms are "fix-it's". They want to remove it, give it a pill or cream. The concern isn't the cause-but the fix. However, that makes sense to a degree...patient shows up miserable and needs help. They help.

Derms aren't subtle ( at least the ones I've been to). They slap down some serious meds or procedures at lightning speed.

My Derm "fixed" til it wouldn't fix then told me I had to find the root cause. I'm pretty sure I have.

I do agree that cosmetic advances will lead to other advances; and I'm all for integrative medicine where different specialties practice along side each other. I think all patients would benefit.

I've wondered if the reason there's so little DH dx out there is because doctors don't want to fiddle with grey area - and that seems to be where DH lies...biopsy is tough, the fix is tough (meds must be monitored, diet is stringent)....it isn't solved by 1 visit and a rx or procedure.

DH is a lot of work to dx and manage (if patient is on meds).

  • 3 weeks later...
squirmingitch Veteran

But just wait until the docs realize they can get lots & lots of visits (read $$$$$) out of Celiacs with DH THEN they'll be diagnosing everyone with it.

Jaded by experience.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Rebeccaj's topic in Super Sensitive People
      4

      symptoms.

    2. - knitty kitty replied to NCalvo822's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly Diagnosed

    3. - knitty kitty replied to Rebeccaj's topic in Super Sensitive People
      4

      symptoms.

    4. - Rebeccaj replied to Rebeccaj's topic in Super Sensitive People
      4

      symptoms.

    5. - knitty kitty replied to CeliacPI's topic in Related Issues & Disorders
      8

      Lymphocytic Colitis with Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,518
    • Most Online (within 30 mins)
      7,748

    Lois S
    Newest Member
    Lois S
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Should not be a problem except for the most sensitive celiacs. The amount of gluten that would get in the air from cooking alone has got to be miniscule. I would be more concerned about cross contamination happening in other ways in a living environment where others are preparing and consuming gluten-containing foods. Thinks like shared cooking surfaces and countertops. And what about that toaster you mentioned?
    • knitty kitty
      Hello, @NCalvo822, Blood tests for Celiac Disease test for antibodies our bodies make in response to gluten exposure.  These Tg IgA 2 antibodies mistakenly attack our own bodies, causing problems in organs and tissues other than just the digestive tract.  Joints can ache, thyroid problems or the pancreas can develop.  Ataxia is just one of over two hundred symptoms of Celiac Disease. Some people with Celiac Disease also make tTg IgA 6 antibodies in response to gluten exposure.  The tTg IgA 6 antibodies attack the brain, causing ataxia.  These tTg IgA 6 antibodies are also found in people with Parkinson's disease, though they may not have Celiac Disease.  First degree relatives (parents, siblings, children) of those diagnosed with Celiac should be tested as well.  Celiac is genetic.  Your mom and sister should be tested for Celiac, too!   Definitely a good idea to keep to a gluten free diet.  
    • knitty kitty
      @Rebeccaj,  When you smell toast or pasta cooking, that means that particles of that food are floating around in the air.  Airborne gluten can then be inhaled and swallowed, meaning the food particles get into your digestive tract.   If you're careful to avoid gluten and are still having symptoms, those symptoms could be caused by vitamin deficiencies.  
    • Rebeccaj
      ok thanks for your advice. But my question was what happens when someone you know in a house is cooking pasta or toast that's flour  Airbourne without eating.?
    • knitty kitty
      Do discuss this recent article with your doctors.  Thiamine Vitamin B 1 is important to intestinal health.  Thiamine deficiency can occur in Celiac Disease due to malabsorption.  Supplementing with a B Complex, Benfotiamine, and Vitamin D can help symptoms.   Thiamine deficiency aggravates experimental colitis in mice by promoting glycolytic reprogramming in macrophages https://pubmed.ncbi.nlm.nih.gov/39890689/#:~:text=Our mechanistic study revealed that,necessary to protect against colitis. "Conclusion and implications: Our study provides evidence linking thiamine deficiency with proinflammatory macrophage activation and colitis aggravation, suggesting that monitoring thiamine status and adjusting thiamine intake is necessary to protect against colitis."
×
×
  • Create New...