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19 replies to this topic

#1 Cmlgl

 
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Posted 01 October 2012 - 12:43 PM

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
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I believe this is a true dh lesion


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#2 ciamarie

 
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Posted 01 October 2012 - 01:00 PM

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!

Edited by ciamarie, 01 October 2012 - 01:01 PM.

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Gluten-free since the end of October 2011

#3 Cmlgl

 
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Posted 01 October 2012 - 01:04 PM

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!
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#4 ravenwoodglass

 
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Posted 01 October 2012 - 01:36 PM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 pricklypear1971

 
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Posted 01 October 2012 - 01:38 PM

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.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#6 Cmlgl

 
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Posted 01 October 2012 - 01:47 PM

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
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#7 jmb002

 
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Posted 01 October 2012 - 01:50 PM

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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#8 Cmlgl

 
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Posted 01 October 2012 - 02:37 PM

Jenn did they do a biopsy??? I har read it has to be done a certain way...
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#9 jmb002

 
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Posted 01 October 2012 - 05:17 PM

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
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#10 Jackson

 
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Posted 01 October 2012 - 05:50 PM

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.
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#11 squirmingitch

 
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Posted 01 October 2012 - 06:15 PM

Yuppers, looks like you have dh. Posted Image 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.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#12 Cmlgl

 
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Posted 02 October 2012 - 03:13 AM

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.
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#13 kmag

 
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Posted 02 October 2012 - 05:58 AM

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.
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#14 squirmingitch

 
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Posted 02 October 2012 - 08:56 AM

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.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#15 Cmlgl

 
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Posted 02 October 2012 - 09:51 AM

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!
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