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Just diagnosed

Allthatsall

By Allthatsall
in Dermatitis Herpetiformis

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Allthatsall Newbie
Allthatsall
Posted

Hi Everyone, I was just diagnosed about two weeks ago with DH after a 5 yr battle for a diagnosis. As I am just learning, I am hoping someone can help answer a few questions and clarify a few confusions. 

- I have always had IBS since I was in my early 20s. But I am reading that everyone that has DH has celiac. Is this true?  my Dr. Said there are cases of non celiac DH.

- I keep reading about other triggers to avoid besides gluten. What other things should I avoid?

- Why did my Dr tell me to stop taking Aleve? I can't find the answer to this on Google.

- What are the other symptoms of DH besides the rash and itching? There has to be more and I have had a variety of issues that seem to coincide with my rash flares. 

 

Sorry this is so long and thank you in advance.

 

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squirmingitch Veteran
squirmingitch
Posted

Welcome to the club you never wanted to be a member of. I'm glad you actually, finally got a diagnosis. 

A dx of dh IS a dx of celiac disease. DH is the skin presentation of celiac disease. NO, there is no such thing as non celiac dh. If you have dh, you have celiac.

Triggers to avoid...... iodine can make the rash flare severely. This does not mean you need to avoid all iodine containing foods b/c we need iodine. You might want to drop the iodized salt & just use plain salt, at least for a while. Eating a lot of shellfish might make your rash flare as shellfish is high in iodine. 

Aleve is an NSAID. NSAID's tend to aggravate the rash so it's best to avoid them unless you really need it. Tylenol seems to be the least offender so if you have to take something, Tylenol would be preferable. 

Allthatsall Newbie
Allthatsall
Posted
  • Author

Thank you for your reply. Can you tell me if there are other symptoms associated with DH. I have suffered from migraines for many years as well as some joint issues. Can these things be attributed to DH? Some of what I have read seems to say yes, but there are so few studies out there. Thank you again.  

ravenwoodglass Mentor
ravenwoodglass
Posted
4 hours ago, Allthatsall said:

Thank you for your reply. Can you tell me if there are other symptoms associated with DH. I have suffered from migraines for many years as well as some joint issues. Can these things be attributed to DH? Some of what I have read seems to say yes, but there are so few studies out there. Thank you again.  

A diagnosis of DH is a diagnosis of celiac. Migraines and joint pain can also be symptoms of celiac. I haven't had a migraine since I went gluten free but my joint pain took a few months to resolve.  I hope you get some relief soon.

squirmingitch Veteran
squirmingitch
Posted
5 hours ago, Allthatsall said:

Thank you for your reply. Can you tell me if there are other symptoms associated with DH. I have suffered from migraines for many years as well as some joint issues. Can these things be attributed to DH? Some of what I have read seems to say yes, but there are so few studies out there. Thank you again.  

Since dh is celiac disease, one can have any & all symptoms of celiac disease. I had migraines for 30 years that went away after being gluten-free for a while. Mind screaming pain in bones & joints. Lots of neurological issues. Swelling. Muscle tics. Skin pain & burning. Hot flashes, depression, brain fog -- extreme brain fog!, nausea, vertigo, heart pounding & irregular, anger issues. I could go on & on but the point is that all those things resolved after I was gluten free for a while. 

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