20 Years Misdiagnosed, Does This Look Like Dh?

[tippyyyy]

Hello,

I am a 27 year old female born with eczema. Somewhere around middle school I started getting lesions on my skin and doctors just assumed the eczema was getting worse. A couple of years ago, one doctor said it might be Psoriasis. It wasn't until recently I was informed that it didn't look like psoriasis but could be DH. I have had this skin problem for about 20 years and it's been a nightmare to live with, I'm feeling hopeful that it can finally be diagnosed correctly. I live in France and getting an appointment with a specialist isn't as easy as just calling and scheduling an appointment. Until then, I just wanted to get the opinion of the forum on whether it looks like I have DH or not. Thank you in advance!!

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[squirmingitch]

tippyyyy, please tell us more about how the rash feels & reacts. Does it itch? When? Is it worse at certain times of the day or year? Does it sting? Does it burn?

[tippyyyy]

Yes it is extremely itchy, people tell me not to scratch but I can't help it. I wake up in the middle of the night because of the itching. Like eczema, it is also symmetrical, which is why I thought it was just a severe case of eczema for so long. I have it on my inner and outer thighs, arms, elbows, lower back, buttocks and my lips. I used to use steroid creams but stopped because of the negative long term side effects. I've tried chinese medicine, supplements, acupuncture, all kinds of creams, oils etc. The only thing that cleared it up almost 100% was when I went on vacation in the Caribbeans and spent a lot of time swimming in the sea.

I know for sure there are 2 things that make my lips worse: french fries and soy sauce. If I eat those 2 things, I can feel a tingling sensation in my lips and the next day it becomes itchy and dry like the pics. I've read a lot on DH and everything I have is leading me to believe I have DH except one thing..the statistics. I've read that men are more likely to have this and it is rare for Asians. I am female and Asian. Maybe I'm just really, really unlucky?

[squirmingitch]

Oh screw the statistics! Personally I think they are outdated. But even if they are correct that doesn't mean ALL females don't have dh right? So don't get hung up on that. I can tell you there have been WAY more women on here with dh than men. That could mean men just don't tend to come on a site like this & talk about it or it could mean the quote unquote statistics are wrong or were taken from a small sampling that happened to be weighted with men.

It's possible you could have 2 things going on at the same time. 

Oh & forget thinking you can't have dh b/c you're asian. Yep, you could be really, really unlucky but the stats that say mostly in people of northern European descent have been updated & they are finding that more & more nationalities they "used" to think didn't get celiac in actuality DO. 

 

Honestly, your photos could or could not be dh. It is really hard to look at a photo & say. The way the rash acts is much more of an indication & what you describe is consistent with dh except for the almost clearing up 100% when you were on vacation. Question --- were you eating gluten on vacation or had you been going heavy on the fresh seafood & not eating bread & gluten items? 

 

Bottom line is you should get a dh biopsy & then you will know. I think it's pretty horrible that this has been a lifelong thing with you & no doctor has ever tested it. I think dh at least deserves to be ruled out definitively. 

[tippyyyy]

I was on a cruise ship so I was mainly eating their food which was a lot of seafood. But I believe I also had pasta, and probably other foods with gluten. My skin cleared up pretty well for a few months after the cruise then it started coming back.

Anyways, I'm planning to get tested, but in France you must have a recommendation letter from a GP to see a specialist. I've done that already and I'm just waiting to hear back from the hospital, I heard you could wait months before seeing a doctor. I am so tired of this disease and not knowing 100% what it is, that I am kind of hoping I do have DH. That way I'll have a diagnosis and I'll know that going gluten free might clear up my skin..

Thanks squirmingitch for the input, I really appreciate it

[ravenwoodglass]

I agree with previous poster. I suffered with DH for over 40 years and it is miserable. If you do have a dermatologist test for it by biopsy do make sure they are doing it correctly and are actually looking for DH. They need to biopsy next to an active lesion. 

While it sounds odd I also got some relief from swimming in the ocean. I don't know if the salt water just helps to dry out the lesions or what but it did seem to help. My Mom used to use a 'horror' story from her childhood when I was little and would complain too much about the itching. She also had DH and her mother used to open the lesions with a scrub brush and pour salt on them. A very painful treatment as anyone who has gotten salt on a wound accidentally would know. It would however clear her lesions for a short time.

As to your being Asian. Celiac is now being diagnosed more in the Asian populations from what I remember reading. I started looking into that when I had my genes tested and discovered I have two copies of a gene that originates from Asia or the Middle East. There are some fairly recent peer reviewed articles that are showing it to be a Celiac associated gene. Sorry I don't have a link but the articles can be found with a search. If memory serves me I found them on PubMed.

I hope you get some answers soon. It would be a good idea to have your doctor run a celiac panel on you. While folks with DH often have a false negative result it wouldn't hurt. Just keep in mind that it may show up negative even if you do have DH.