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We Need More Research On Dh


itchy

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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.


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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.

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