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Dh and diagnosis

Shollie

By Shollie
in Dermatitis Herpetiformis

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Shollie Newbie
Shollie
Posted

Hi there,

im new to this site and was hoping for some advice please. For the past 10 years or so (in mid thirties now) I have been getting a rash in the exact same location on my buttocks that comes and goes sporadically. I've always wondered what it was as it is so intensely itchy it's almost unbearable. It starts with the skin feeling a bit sore/burning and then gets extremely itchy with very small water-filled blisters. It stays like that for a few days then starts to ease off. After a session on google I convinced myself it was herpes (which it wasn't) but then stumbled across a condition called dermatitis herpetiformis which seemed to describe the exact rash I'd been experiencing, even down to the age it started and the fact it comes back in the same location- the buttocks being a common place to get it. Based on this I stopped eating gluten and I did feel a lot better in many ways but then became pregnant and resorted to eating gluten again as I was hungry all the time and struggling with nausea. I am currently 2 weeks off having my baby so I am thinking about the future and diet after the baby has arrived.

I am now wondering whether I should get tested for celiac but I've read a lot about how unreliable and long-winded testing can be. So would it better for me to go back to removing gluten from my diet without having a diagnosis? If the rash comes back I could go to the doctor for a proper diagnosis of the dh but the problem I have (and it's not bad problem to have) is that the rash hasn't come back for a while despite me eating gluten. I've read that dh can go into remission despite eating gluten which makes it all even more confusing.

so really the question I have is do I just go with the simple solution which is that the rash I get seems to be dh and that would mean gluten doesn't do me any good so I should just cut it out. Or should I chase a proper diagnosis of the dh? And from what I've read if you get a diagnosis of dh it's a given that you'll also have celiac so the rash is enough to diagnose both conditions? 

Sorry for the long post! I don't want to diagnose myself with anything unnecessary but I also don't want to ignore a potential problem that may be harming my intestines. 

Thanks 

shollie 

 

 

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Jmg Mentor
Jmg
Posted

Hi Shollie and welcome :)

I can't give you any specific answers on DH, there are others here with more experience and I'm sure they'll answer soon. I guess the more specific you can be about the rash the better, eg was it symettrical?

 

 The other thing which occurred to me when I read your post was shingles, that started for me with the sore and tender feeling prior to blistering. but I think that pain level would've had you at the doctors and even then it could perhaps be linked to celiac. 

I did collect some links and sample questions here on the diagnostic process however which may be of some help:

Best of luck!

 

Shollie Newbie
Shollie
Posted
  • Author

Hi and thanks for replying to me!

to be very specific about the rash... It always comes up in the same place which is on my buttocks at the very top of the crack (sorry for tmi but I had no idea how else to phrase that!). It is intensely itchy and the blisters are very small and contain clear fluid. The rash comes on and off and doesn't stick around for longer than 4-5 days each time. I can go for long periods without getting it but each time I get it the location and symptoms Are identical. The other thing worth mentioning is that I used to notice the rash came up after periods of digestive and stool issues. Regarding whether the rash was symmetrical I'm not entirely sure about this as the location of the rash makes it quite hard to get an idea. 

Thanks for posting the other chats for me about diagnosis, I will have a look at those.

shollie

GFinDC Veteran
GFinDC
Posted

Hi Shollie,

You might get more help if you post in the Dermatitis Herpetiformis section of the forum.

https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

You can also report the thread and ask a mod to move it to the DH subsection if you'd like.

Shollie Newbie
Shollie
Posted
  • Author

Oh great thanks, I will post in there instead.

 

GFinDC Veteran
GFinDC
Posted
16 minutes ago, Shollie said:

Oh great thanks, I will post in there instead.

 

No need, I moved the thread for you.

Shollie Newbie
Shollie
Posted
  • Author

Thank you! 

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Shollie Newbie
Shollie
Posted
  • Author

moving the thread didn't seem to help with any response! I think I'll just use my initiative on this one and go to a GP. Seems like the most sensible option. 

cyclinglady Grand Master
cyclinglady
Posted
12 minutes ago, Shollie said:

moving the thread didn't seem to help with any response! I think I'll just use my initiative on this one and go to a GP. Seems like the most sensible option. 

DH is not as common and we have fewer members.  I can recommend that you ask your GP for a celiac screening and then a referral to a dermatologist who knows how to biopsy for DH.  Then keep reading through the DH section for tips and suggestions.  There is a very specific way to obtain a biopsy.  Keep eating gluten because all celiac disease/DH testing requires you to be on a gluten diet.  Do not go gluten free yet!  

celiac disease can cause other rashes as well.  

Hang in there and so excited for your new arrival.  Best wishes!  

squirmingitch Veteran
squirmingitch
Posted

HI Shollie, soory I'm so late to the party but I've been pretty busy with some things in my life & didn't have time to post.

60% of those with dh test negative on the celiac blood panel. You'll need to find a derm who is experienced in dh. So very many derms dismiss it out of hand and say it's eczema, psoriasis, bed bugs, & so on & so forth. They prescribe creams & pills that don't do any good if one has dh. The problem is that it's usually steroid creams or meds & the use of those skew a dh biopsy & give a false negative. If you've taken oral steroids or steroid shots within 2 months prior to a dh biopsy then you most likely will get a false negative. The biopsy MUST be taken ADJACENT to a fresh lesion NOT ON ONE!!! This is of the utmost importance. Scratching can destroy the pattern pathology will be looking for so try not to scratch. yeh, I know, easier said than done. You still have to be eating a regular gluten diet even for the dh biopsy or you'll get a false negative.

Why go for a dyed in the wool dx? Because you're going to have a child and you might end up having many children. Celiac is a genetic disease, so your kids could present with celiac at some point. If you have an official dx of celiac then it will be sooooooooooooooooooooooo much easier to get your kids tested. All first degree relatives should be tested every 2 years in the absence of symptoms and immediately if symptoms present.

The best way to learn is just to read thread after thread after thread in this dh section.

 

GFinDC Veteran
GFinDC
Posted

Hi shollie,

It's a good idea to find a doctor who is familiar with celiac diagnosis.  You can try searching for a local celiac  support group in your area.  They might have recommendations for good doctors.

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