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Does This Look Like Dh To You?


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25 replies to this topic

#1 jmb002

 
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Posted 10 September 2012 - 03:07 PM

Ok I am new here but wanted to know your thoughts on this rash. I, like most I have read about, have an intensely itchy rash and cannot seem to get an accurate diagnosis for it. Here is a little back story on me.

First of all let me say that in 2006 I had a hysterectomy due to dysfunctional uterine bleeding at the age of 33. In 2007, I had a total thyroidectomy due to Hashimoto's thyroiditis and goiters. I have had a lot of trouble regulating my thyroid medications since then.

At the beginning of this year I was diagnosed with severe Vitamin D deficiency; my level was 3 with normal being above 30 and below 12 being considered severely deficient! YIKES!

At that same time, my mother passed away from a short battle against stage 4 colon cancer at the age of 56.

Fast forward a couple months and I developed a rash on my left breast that was extremely itchy. The doctor said it was a fungal rash and prescribed myconazole. I faithfully applied this cream and it did not get better. In fact, over the next 2 weeks, it spread to my right breast and left hip. The rash was/is insanely itchy and very uncomfortable. After several weeks of this I decided to go to the dermatologist. He immediately did a biopsy and sent me home on Lidex cream and Gold Bond itch lotion to help treat the itch. I took Benadryl at night just to get some sleep but wake at about 2:00 a.m. itching again. Finally after a week of the Lidex with no improvement he put me on prednisone with almost full resolution of my symptoms. Biopsy came back with large amounts of eosinophils indicating scabies or drug reaction, which the dermatologist quickly ruled out by the appearance of my rash. Since I improved on the prednisone he sent me on my way saying I was allergic to some soap or my underwear or some other nonsense. Anyway, fast forward a couple weeks (after the prednisone finished) and the rash came back full force.

I have never had any blisters but the spots are intensely itchy. The lesions looked like hives to me (I am a nurse) and the dermatolgist agreed. They get MUCH worse when I sweat or am physically active, which is really a pain because I try to work out every day.

Last week I went back to the dermatologist because the rash was back in full force now on both of my hips and breasts and now my elbows are itchy and have little bumps on them. He once again biopsied and the areas but I haven't gotten results back yet.

I decided to start researching the matter myself since I was getting absolutely nowhere with the doctors. I did call his office today to see if results were in and told them I thought that maybe I had DH but the doctor was out so I got nothing from the phone call. I talked to my GP who literally laughed at the fact that I was trying to self-diagnose, but hey someone has to do it!!

Anyway, I am going to try and attach some pictures of my rash and see what you all think. Keep in mind this is after being on 50 mg of prednisone for 4 days and I am just starting to taper today. I have NOT give up gluten yet because I simply would like to have a diagnosis and I am not completely uncomfortable at this point on the prednisone. Do you think it looks like DH to you? I am beginning to understand the frustration of patients I take care of when physicians and medical professionals do not "listen" to them......it is extremely frustrating and frankly quite insulting. Thanks so much for your time, I really do appreciate it!

Jenn

http://http://m1147....f7.jpg.html?o=0
http://http://m1147....60.jpg.html?o=1
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#2 pricklypear1971

 
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Posted 10 September 2012 - 03:54 PM

I can't get your links to open, but that's rather irrelevant to me.

You have a bigger problem than doctors that won't listen. You've been on a steroid. Steroids are a contradiction to accurate Celiac dx (which is what you'd be if you have DH). As I'm sure you can and have read, Refractory Celiac is treated with steroid therapy. In the very fine print under dx'ing Celiac (particularly pediatric protocols) they always ask "steroid therapy"? as a cause of testing to be falsely negative.

The fact that you've been dx'ed with Hashis is enough to be screened for Celiac. http://www.curecelia...s2_Symptoms.pdf

Did the derm take an accurate biopsy? http://www.arupconsu...petiformis.html

So... as someone who has been down the boob rash route, antibiotic and antifungal route, antipsychotic/antihistimine route, prednisone route, topical steroid route..... I'd try to get the rash biopsied while still on gluten. I'd try to get blood antibody testing http://www.curecelia...s3_Antibody.pdf while still on gluten. But keep in mind the pred may have hosed the dx for about 3 months. I say 3 months because I think I've seen that time thrown out there somewhere but don't remember where.

Another alternative I've considered (and I must be suicidal to have even considered this) is to trial Dapsone for my DH. Theoretically, if it worked, I could go back on gluten for antibody and endoscopy testing OR skin testing after I got off Dapsone. I don't think Dapsone would interfere with antibody or endoscopy results.

If you take a quick survey of people with rashes on here, that are probably DH or at least related to gluten, you'll find a high percentage of us have Hashimotos. I don't think I have a research article that says that, but I swear it seems to go together.
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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!

#3 eatmeat4good

 
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Posted 10 September 2012 - 04:11 PM

Yes, DH can present like hives.
I had long raised red welts that eventually started weeping and oozing. It burned and itched like crazy. I now have long linear scars where the skin was scratched and they are white and de-pigmented where the DH healed. So yes DH can present as welts and rashes without blisters. I have Hashimoto's and a goiter too.

I was treated for chronic hives and chronic impetigo, and chronic acne and it was finally decided that I had neurotic excoriation. No meds helped. I diagnosed myself when I read about DH here. It did not look like DH to the Dr.'s who saw me. But they were wrong. Yes, even though the literature says that you shouldn't diagnose yourself with DH because it can be dangerous, I went ahead and did it anyway because no Dr. would. And guess what? It is more dangerous NOT to diagnose DH than it is to diagnose it yourself and get well.

They really know nothing about this disease.
Try to get diagnosed by testing but if they won't just go gluten free.

I can't see your pics either...but your description is eerily close to the way my DH presented. Many years into having the mysterious hives, I developed the classic watery blisters of DH, but it still wasn't recognized.

Read the DH forum, ask questions, and be aware that you may have to diagnose yourself if your Dr. doesn't.

Iodine is an issue for some of us. It keeps the antibodies active in the skin.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
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#4 squirmingitch

 
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Posted 10 September 2012 - 04:14 PM

I couldn't get your links to open either but the symmetrical presentation, itching like a bear & waking you at night, Hashimotos, the hysterectomy. the low Vit D all add up. Like Prickly says the steroid will put you out of a dx for a while. That means dx by blood panel, endoscopy, or dh biopsy. Most ppl with dh tend to test neg. on the celiac blood panel. And there is a high false neg. on the dh biopsy even when everything is done correctly. AND you will have to be eating gluten for any of the tests.

Oh, & Prickly & I both have been down the steroid route with the same results --- when you stop the dh comes roaring back like gangbusters.Posted Image

Just b/c you don't have blisters doesn't mean it isn't dh. Read the sticky (pinned) at the top of this forum. DH presents in numerous ways not just as blisters. You don't want to get to the point where you get the blisters --- all of us who have had them can attest to that.

Can you try to repost your links?
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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.

 


#5 jmb002

 
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Posted 10 September 2012 - 04:47 PM

Ok lets try this again.....


http://s1147.photobu...ms/o553/REBJMB/
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#6 jmb002

 
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Posted 10 September 2012 - 05:03 PM

s1147.photobucket.com/albums/o553/REBJMB

Thank you so much for the responses! They make me feel like I might not be losing my mind!

I have saved all the links you posted, Prickly, and will be reading up on them tonight.

I am going to continue to push for a diagnosis, but if I absolutely cannot get one I will just have to try going gluten free.

Hopefully you can see the photos now....

The ones of my hip show to big scabs, which is where the last biopsies were taken last Wednesday!
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#7 squirmingitch

 
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Posted 10 September 2012 - 05:18 PM

Dang! I'm sure glad to know those are where the biopsies were taken. For a minute there I thought, "What the &^%$ are those?"!!!!!
The photos are small & hard to see detail but it looks like it could very well be dh; especially when you say that's influenced by the prednisone.

I'm going to warn you also that if you go gluten-free & then decide you want to go back to gluten for testing then You could very well have symptoms you were not expecting & don't experience now. And the dh may come back worse than ever. This is the problem & the way it goes with going gluten-free & then deciding to challenge. Just giving you the heads up before the fact. So if you really want a dx then continue to eat gluten & don't even go gluten light okay?

And NO, you aren't losing your mind. Well, dh can make you lose your mind & celiac disease makes your brain do weird things but mostly doctors who don't listen or know are the biggest factor in us losing our minds. But those docs are quick to tell us it's all in our minds! Grrrrrrrrrr..........

Let us know how it goes & were here so ask anything at any time.
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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.

 


#8 itchy

 
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Posted 10 September 2012 - 05:23 PM

Thank goodness for the internet that helps us take responsibility for our own health. I'm not sure what the problem is with MD's who refuse to recognise DH. Perhaps they are convinced that we are part of what they consider to be a gluten-free 'fad' around the English speaking world. I think they often see 'wheat intolerance' as an 'alternative medicine' diagnosis, ingnoring the rapidly increasing rate of coeliac disease. It doesn't help that people with DH often don't have typical coeliac gastrointestinal symptoms.

JMB, from your symptoms I'd suspect DH. Intensely itchy and bilaterally symetrical would be big tipoffs. As soon as you mentioned 'elbows', mine started to itch. You may want to watch for some linearity in the lesions, too.

My $.25 worth: I encourage you to question whether you really need a formal diagnosis. There may be real, and important reasons for having a formal diagnosis in your particular life, but I have got along quite well for the past few years without one. I mean, given your experience with MDs does their diagnosis really mean anything?

A few weeks of strict gluten avoidance would probably tell you whether it was DH, though it could take much longer to go away.
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#9 jmb002

 
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Posted 10 September 2012 - 05:23 PM

Thanks so much! If you double click on the picture I think it gets bigger....at least it did for me! :) Either way I appreciate the advice. I plan on continuing eating gluten until I get a diagnosis. First of all I eat a TON of bread, pasta, etcetera so this will be a HUGE undertaking for me.

Thanks so much all for the information and I will definitely keep you posted!

Jenn
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#10 squirmingitch

 
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Posted 10 September 2012 - 06:02 PM

At their largest the photos are only about 2" x 2" --- too small for my eyes to see them well.

Good luck & we all hope you can get a solid dx answer one way or the other.
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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.

 


#11 pricklypear1971

 
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Posted 10 September 2012 - 06:36 PM

If I'm not mistaken , those are punch biopsies but taken from an affected area? If so, that wasn't the skin area necessary for a DH biopsy. It should be taken from clear skin.

Will be interesting if they find iga, though. That's what I've noticed from a few people who post here - they get an inconclusive biopsy lab report that finds iga but not in the DH pattern. If you couple an iga finding with positive dietary response or rash response to gluten then it seems (to me) the biopsy was just unfortunately not accurate enough for some reason. Get my point? DH is hard to biopsy, even if you do everything right.

There is the possibility you can get an rx for dapsone and if it controls the rash, stay on gluten to get antibody and endoscopy testing. And, if it controls the rash that's a string indicator of DH.

On another note, if you eat lots of pasta and bread you can still eat it. Just different pasta and bread-like substance. I shouldn't put it that way, because there are some decent gluten-free breads out there. I'm just not into breads. Wasn't Pre gluten-free except for a few homemade ones and NOLA French bread...but that's another story.
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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!

#12 GottaSki

 
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Posted 10 September 2012 - 07:18 PM

Oh my goodness - Jenn, your description is exactly the rash I had for four months just prior to celiac diagnosis. Started with a section on my upper stomach just below the bra line - insanely itchy - patches of red welts - very much looked like hives - spread all over my stomach/chest, then had patches on legs, arms and scalp. Improved with a med primary gave me for itching - don't remember what it was. I never had it biopsied because it had disappeared about a month before I was tested for Celiac. I have never had the rash again since removing gluten and have often thought it might have been DH, but always thought DH had to have blisters!

You do learn something new every day :)

Thanks Eatmeat, Squirmy, Prickly and Itchy for the great info!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#13 jmb002

 
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Posted 12 September 2012 - 09:53 AM

Well biopsy results came back in......of course I got the brush off from the doctor. He claims that it is a drug reaction (I have been on the exact same meds for years with zero reaction and he has said all along that this was NOT a drug reaction) and is sending me back to my GP for further intervention! I called yesterday and spoke to the NP I see and she had never even heard of DH. She was going to do some research and get back to me. In the meantime, I have printed all of the information I can get my hands on (thanks to everyone here) and am going to present it to her later today. I am hopeful that MAYBE I can find some resolution. I am contemplating requesting a trial of dapsone to see if it improves my symptoms and then try to get legit biopsies outside the rash area (yes Prickly you are right all four biopsies were done of the MOST active areas of rash) and have antibodies drawn. Thanks again for all of the information you provided me so that I can make more informed decisions!
Jenn
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#14 pricklypear1971

 
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Posted 12 September 2012 - 10:26 AM

Get copies of all dermatology labs. You may be surprised at what you find.

An NP could biopsy it correctly, of she has the equipment. You need a magnifying glass to find the true clear skin, IMO.

If you respond to dapsone its an indicator. If you still don't know and govgf without testing, if it responds to iodone withdrawal that's another indicator.
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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!

#15 jmb002

 
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Posted 12 September 2012 - 11:40 AM

Prickly, I am going to go tomorrow and get copies of all of my records from that office tomorrow. I have made an appointment with a new dermatologist on Monday and am going armed with all of the information you gave me.....thanks a million! I also talked with my GP who said they are going to run the antibodies, but of course want to wean me off of the steroids first. I am hoping the dermatologist will give me a trial of dapsone and see if it works. I am just starting the wean and am already itching like crazy towards the end of the day, so I KNOW this will not last and once I am off prednisone the rash will be back full force!

Thanks again for all of your helpful information!
Jenn
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