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Could This Be Dh?

JennShad

By JennShad
in Dermatitis Herpetiformis

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JennShad Newbie
JennShad
Posted

Hi everyone, I'm new here. I have never been diagnosed as celiac or gluten intolerant, but for the past 6 years, I've come to my own conclusion that there is a good possibility I am. I do not have insurance, so going to the doc for multiple tests isn't an option. It took about 4 years for me to determine gluten may be the cause of the health issues I've been having. The first time I ever went gluten-free, and I say first time because I've gone on and off several times over these last 2 years, but the first time I took it out of my diet, I was a new person! But without an "official" diagnosis, I find myself around holidays or birthdays, talking myself out of it, thinking maybe it's all just in my head. I've had gastrointestinal symptoms for the full 6 years, hair loss, even tooth enamel loss! Muscle weakness and soreness, etc., etc., etc...I'm sure the roller-coaster of going from a gluten-free diet back to eating gluten, only makes matters worse. So after being gluten-free for some time, again, I decided to be in denial 6 weeks ago, right before Christmas, and start eating gluten again! Well now for the same amount of time, I have developed this insane "rash" that won't go away!

After living on benadryl for 4 weeks, I had to cave and pay to see the doc, the itching was making me lose my mind! The flares were severe, sometimes painful, and very widespread...always bilateral too...well, of course she didn't know what it was...sent me on my way with a treatment cycle of prednisone and zyrtec to take nightly...for...ever, I guess! That was 2 weeks ago. The rash remains, I have not had one rash free day, but the meds have lessened the severity and frequency of these flares....but since finishing the prednisone, it comes back a little more and a little stronger each day. I am still eating gluten currently, thinking maybe I should see if I can get this biopsied and checked for DH...and this way I would know for sure whether I'm celiac or not. I have just read that a biopsy positive for DH, automatically confirms a celiac diagnosis...which is a lot cheaper that a colonoscopy!

I've attached a few pics, this is very very mild and really doesn't give an accurate picture of how severe this has been....but I thought it would be worth a shot and see what others have to say. Any input would be appreciated! Thanks:D

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

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zamm0 Apprentice
zamm0
Posted

Yes, could be. Infact I have DH and those pictures look very similar. I've had it for >2 years and it pre-dated my Celiac diagnosis by almost as much. Since going gluten-free four months ago I've now tested negatively for Celiacs i.e. the diet is working. I still have DH though, it's not too bad - elocon used very sparingly calms it down pretty well. I get it mainly on top of my back, shoulder, and abdomen at the sides, and head/face much more mildly. Used to get it on the legs too but not now for some reason.

KaleidoscopeDream Newbie
KaleidoscopeDream
Posted

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I'm not an expert by any means, and I only found out what I have is DH less than 2 months ago, but your spots look exactly the way mine did in the early stages. I've had this current outbreak for over a year now and have only been gluten-free for a few weeks at this point, but I've had some marginal relief after switching all my bath and body products to gluten free ones meant for sensitive skin. At the very least, my body wash has aloe as the first ingredient, so when the itching is really terrible I take a lukewarm shower and clean the rash gently and I have an hour or two of relief. It has also helped with the drying and peeling stage of some parts of my rash. I have also been trying to go low iodine as has been suggested on the forum here, but I think it's too soon to notice a change.

So, as I said, I can't diagnose you or anything, but the raised bumps and welts are very familiar to me, and I have confirmed DH with a dermatologist. I followed advice given here and asked the derm to biopsy healthy skin near the rash, so I definitely suggest making sure your doctor does that if you do decide to get a biopsy.

Good luck!

JennShad Newbie
JennShad
Posted
  • Author

Thank you guys so much for the input! Now I just need to find the right Dermatologist that will hopefully listen to me.

JennShad Newbie
JennShad
Posted
  • Author

2 Photos from last night/this morning flare

Open Original Shared Link

Open Original Shared Link

texas flood Newbie
texas flood
Posted

Dang...you should try to find a dermatologist that can get you in today. That's a pretty bad flare up. It looks like mine have in the past. I have an appt this afternoon with a derm.

JennShad Newbie
JennShad
Posted
  • Author

And this is mild! I'm searching for a derm with experience with DH...I'm having a difficult time.

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      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
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