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Look At My Pics Please

Cmlgl

By Cmlgl
in Dermatitis Herpetiformis

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Cmlgl Rookie
Cmlgl
Posted

So let me start by tellig my story. About a year Ago I started getting very itchy skin. It began to flare up worse and worse.I went to the dermatologist who said I had eczema. I have gone back again during a flareup and they still say the same thing. It's not eczema I actually have hives. I have done my own research and I am convinced I have DH and will be asking for a biopsy. I am 29 year old female. What do you think of these pics? I live off of Benadryl or atarx and have been on steroid creams and protopic that just hurt my skin. Also all my rashes are bilateral . Lately it's my back an ld buttocks

E8E177CF-F58B-4B67-8B07-0698231876AB-5004-0000032A2C13A844.webp

B4149B5F-777B-4FC4-B1C1-35F10AF54722-5004-0000032A28700018.webp

6A82C7D8-205C-4B7C-9EFE-E8186E9EA5F3-5004-0000032A2448E2F6.webp

99DE7239-EEDD-420A-B773-CC0FC6E0FB8E-5004-0000032A2560C763.webp

5310D3F0-ED17-4215-8FEE-5F1C7386A57C-5004-0000032A23AFCD7E.webp

I believe this is a true dh lesion

C9669C2E-25D5-43ED-B2D7-58A38C76D797-5004-0000032A228A1988.webp

95118876-0F97-4A35-AEFB-FA75A90DC7B7-5004-0000032A234C75E1.webp

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ciamarie Rookie
ciamarie
Posted

Yep, sure looks like DH to me. You said you have been on steroid creams, hopefully not recently if you want to see a derm for a biopsy? Apparently recent steroid use will reduce the likelihood of it being diagnosed. In the meantime, have you found the thread about itch relief on here? As well as info. on the right way for a dermatologist to biopsy? (Next to the lesion, not on it...). You don't want to start eating a gluten-free diet until after any tests, unfortunately.

Hopefully others will agree, but I figured I'd throw in my comments.

And, welcome to the forums, keep us posted on a possible visit to a derm or going gluten-free!

Cmlgl Rookie
Cmlgl
Posted
  • Author

Thank you. I have an apt for the 16th and I am going to request the biopsy next to a lesion. Might have to. Be on my butt.... Ouch!

ravenwoodglass Mentor
ravenwoodglass
Posted

It may be a combination of DH and hives. I had both. I know you are in agony right now so I would suggest in addition to seeing the derm that you ask either him or your GP for a celiac panel. After all testing for celiac is done then do give the diet a good strict try. Also check your topicals, shampoos, lotions etc for gluten ingredients. I hope you get some relief soon.

pricklypear1971 Community Regular
pricklypear1971
Posted

Yours looks a lot like mine. The arm pits and waist and tail bone are the worst, aren't they?

I use Vanicream and ice packs on mine. Vanicream doesn't irritate and ice packs stop the itching.

Good luck with your biopsy. Stay off the steroids of you can til after biopsy. Be prepared, if you're on them and go off it will flare.

Cmlgl Rookie
Cmlgl
Posted
  • Author

I'm off everything but Benadryl since I am 12 weeks pregnant. I will make and apt for my GP or ask the derm for a celiac panel

jmb002 Newbie
jmb002
Posted

I was just diagnosed with DH and mine looked almost identical to yours. I had what looked like hives all over the place. I didn't have any blisters whatsoever. I went to 2 dermatologists and my GP several times before I finally got the diagnosis, but I started on dapsone two weeks ago and my rash is almost completely gone. The dapsone has given me relief where nothing else did and now I am almost completely gluten free for a week. Hope you have better luck getting diagnosed than I did :(! Good luck! Hope you feel better soon!

Jenn

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Cmlgl Rookie
Cmlgl
Posted
  • Author

Jenn did they do a biopsy??? I har read it has to be done a certain way...

jmb002 Newbie
jmb002
Posted

I had four biopsies done by a doctor that didn't really know where to do the biopsies. I ended up being diagnosed with scabies, atopic dermatitis, and medication allergies. I finally started researching myself and figured out it was DH. I went to a new dermatologist and told him that I thought it was DH, so he started me on a trial of dapsone. In the two weeks I have been on the dapsone the itch and rash are almost completely gone......the itch was almost non-existent in two days or so. I actually went back today and he told me he isn't even going to do a biopsy. He said he feels like the dramatic response to dapsone was diagnostic itself and I had DH. You might look at the thread I started called "Does this look like DH to you?" Squirmingitch posted some links to websites that I printed and took with me to the doctor's office. The links tell exactly where the biopsy should be done as well as gives other information about DH which I found very interesting and informative.

Hope that helps!

Jenn

Jackson Newbie
Jackson
Posted

This looks exactly like something I had two years ago. I felt it was just a really bad case of hives and it lasted about 10 days. It wasn't until this year that I figured out it was DH in one of its more recognizable, meaning classic, presentations! For the past 5 months I 've been on the low iodine and low salicylate diet and for the past two weeks the rash is calmer than it's been in years.

squirmingitch Veteran
squirmingitch
Posted

Yuppers, looks like you have dh. sad.gif I'm sorry.

Welcome to the board. I hope you don't have as big a problem getting dx'd as most of us but be prepared. You have it bad & IMHO blisters & lots of lesions are just around the corner for you. I hope not but I'm afraid that is likely to happen. You've been given good advice by the others.

You might want to check & see if there is a celiac support group anywhere near you. If there is, you can check with them to possibly find a derm in your area who has experience with recognizing & taking a biopsy of dh.

Don't stop eating gluten until testing is finished. And try your best not to scratch. Scratching easily destroys the markers they will be looking for.

Keep us posted.

Cmlgl Rookie
Cmlgl
Posted
  • Author

Thank you all. This has been such a battle. I never thought I would wake up one day with allr these skin issues and not have a reason. After my testing I will be going gluten free regardless of the results. I tried going dairy free already and it didn't help. I've had some food allergy testing all that came out neg. I may make an apt at another derm just to have it lined up for a second opinion. The itch consumes my day. I don't go outside because of how my skin looks. My last hive outbreak 2 days ago I soaked in a bath with a cup of apple cider vinegar and it was very soothing but the damage was done from all the itching. I wake up with blood from itching in my sleep. Honestly this has gotten me quite depressed. I really hope by result of the biopsy comes back pos. I just want answers.

kmag Rookie
kmag
Posted

That looks like what I had before I gave up gluten. I never had it as wide spread as you and honestly, I'd forgotten how red it was. Like many people here, I've never had a positive result for gluten testing, but it absolutely is DH. Be prepared that you may never get an absolute answer.

It wasn't until I went gluten-free that I ever got actual blisters. I still get tons of hives. It's like they live just under the surface of my skin and wait for the slightest scratch to come blaring alive.

It's pretty normal to go through some depression about this. Seriously, it's completely crazy-making stuff! I've cried about it many times. It's taken 1.5 years of gluten-free living (strict, too), to get to a point where I see a wee bit of light at the end of the tunnel. Compared to what it was, my skin looks good, though it still itches like a mother.

I feel for you, I really do. Unless you can get into see a derm quickly, I wouldn't wait to go gluten-free.

squirmingitch Veteran
squirmingitch
Posted

kmag's last line is another reason so many with dh don't have official dx's. The moment I figured out what it was --- that was it! --- I went gluten-free with the next thing I put in my mouth. No way I was waiting around for an appt. When you realize it can take up to 2 years & sometimes even longer for the antibodies to get out of your skin; you don't want to waste one single day of getting started.

Cmigi, since you're pregnant I know you're going to be on pregnancy vitamins. You need to talk to your doc about this. You may need to find a suitable vitamin that DOES NOT contain iodine. Iodine is medically known to an effect on dh. It can really make it flare! That is what most of us have experienced also. A few have not had iodine make any difference but that seems to be the minority.

I have a vitamin which is gluten-free as well as iodine free. it is Solgar brand "Vitamins Only" but I don't think they qualify as a pregnancy vitamin. Pricklypear has a iodine free vitamin also. You could ask your doc to prescribe (even if they have to compound it) some LIQUID pregnancy vitamins which are gluten-free & iodine free.

Cmlgl Rookie
Cmlgl
Posted
  • Author

Well since my derm apt is in 2 weeks I'm gonna keep on going. I can handle 2 more weeks, I've done a year worth of this!

squirmingitch Veteran
squirmingitch
Posted

Well since my derm apt is in 2 weeks I'm gonna keep on going. I can handle 2 more weeks, I've done a year worth of this!

This is good. Since your child can end up with celiac it would best if you can get a dx.

Cmlgl Rookie
Cmlgl
Posted
  • Author

Really it's hereditary?? My 7 year old has a lot of stomach pain, we took her to a pediatric gi and since she has no diareah it anything they said its in her head. I wonder if it could be the start of something for her down the road? Just pain to begin and in 10 years things will be worse

psawyer Proficient
psawyer
Posted

There is a genetic factor, but only a minority of those with the genes actually develop celiac disease. It is recommended that all first degree relatives of someone diagnosed with celiac disease be tested.

  • 1 month later...
deb445 Rookie
deb445
Posted

I'm a little late to reply, so I don't know if this is useful information or not..........

My son used to get this rash, head to toe, and start bleeding.

We were given a prescription for a very expensive cortisone cream, but what

we found effective (before going gluten-free and df) was a homeopathic ointment called

Arnica ointment. As a baby, he would literally sigh when it was applied, and it

would take the itch/pain away, and take away the inflammation.

Very difficult days and sleepless nights for the whole family,until we got it all

sorted out. I feel for you, and hope your discomfort gets under control.

When he has a flare up, I pull up his pant leg for the tell-tale sign that he has

been glutened. There is one spot on his leg (he was born with it) that welts

and discolours first - our secondary indicator.

Good luck

StephieRN Rookie
StephieRN
Posted

Aw your rash looks super uncomfortable :( I hope it heals soon

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