Does This Look Like Dh To You?

[jmb002]

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

Open Original Shared Link

Open Original Shared Link

[pricklypear1971]

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. Open Original Shared Link

Did the derm take an accurate biopsy? Open Original Shared Link

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 Open Original Shared Link 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.

[eatmeat4good]

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.

[squirmingitch]

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.

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?

[jmb002]

Ok lets try this again.....

Open Original Shared Link

[jmb002]

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!

[squirmingitch]

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.

[itchy]

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.

[jmb002]

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

[squirmingitch]

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.

[pricklypear1971]

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.

[GottaSki]

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!

[jmb002]

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

[pricklypear1971]

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.

[jmb002]

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

[pricklypear1971]

Ice packs. Others have used Walgreen's benzocaine.

And a shot of tequila doesn't hurt, either.

[squirmingitch]

The steroids help but the minute you go off them it's worse than ever. You have to get off them & get through the hell & then it won't be as bad. Also, the steroids will make tests negative for 2, maybe 3 months.

Good luck with the new derm.

[jmb002]

Well I can't believe it but the doctor took one look at my elbows, hips, legs, and other various parts and said I believe you have dermatitis herpetiformis. You could have knocked me over with a feather. I had told the PA that is what I thought it was and she didn't think so, so she had the doctor look too! Glad he did. I am starting on dapsone in the morning with the hopes of going gluten free once I am able to get the celiac panel drawn in a couple of weeks. Thanks to everyone here that provided me with advice, it helped greatly!

Jenn

[pricklypear1971]

Well, yay!

Hope the dapsone works and you can proceed with testing.

Do they really think 2 weeks off steroids is enough time?

[jmb002]

That is what the doctor said. I am going to try and give it at least a month, but we will see how the dapsone therapy goes. I am anxious to start it this morning.....I understand people with DH see a dramatic improvement in symptoms in just a couple of days.

[squirmingitch]

But ppl with dh often test neg. on the celiac blood panel --- add to that the steroids......

But I am happy as heck that the doc looked & WOW! he actually recognized it. Why didn't he do a skin biopsy? A positive skin biopsy of dh IS a dx of celiac.

[pricklypear1971]

But ppl with dh often test neg. on the celiac blood panel --- add to that the steroids......

But I am happy as heck that the doc looked & WOW! he actually recognized it. Why didn't he do a skin biopsy? A positive skin biopsy of dh IS a dx of celiac.

I would assume (and you know what they say about that) a biopsy on steroids would be the same as blood work/endoscopy???

Maybe take it when you come off dapsone (but then you'd be gluten-free....)?? Sigh.

[squirmingitch]

Yes, the biopsy on or recently having quit steriods will be the same as blood work/endoscopy.

[eatmeat4good]

I hope the Dapsone works for you. Are they going to do blood tests in 2 weeks? You should be monitored by blood tests to be sure you don't get anemic. I had great relief from Dapsone and then a terrible reaction so I couldn't take it anymore. Just be aware of what to watch for with side effects. Many become anemic. Some have no problem taking it. You will know very soon which one you are. So happy the Dr. recognized your DH!

[jmb002]

The plan was to do a celiac panel in a couple of weeks. I am not sure why he didn't do a biopsy, but my suspicion is that he didn't have time. I was schedule to see the PA whom emphatically claimed it was hives and I just needed to go back on the steroids and suck it up. I was pretty upset about it and was ready to walk out. I told her I wanted the doctor to look at it and she grabbed him out of another room to come have a look. He took one look at biopsy results from other doctor and my skin and said it was DH. At this point I feel good about the diagnosis as that is what I believed it was all along, but thought if I could have the blood work confirmation as well it would be nice. I guess if I go in a couple of weeks for blood work and it comes back negative I will just go gluten free anyway. I definitely believe that it is DH. I have been on dapsone for 2 days now and am seeing slight improvements in the rash and my overall itchiness has really gone down. He said I should see marked improvement in 4 days and if not call him, so we will see.

This illness is EXTREMELY frustrating! I completely understand why people self diagnose and do what they have to to make themselves feel better! At one point during my conversation with the PA I was in tears and had to apologize later for being such a (insert nasty word).

Thanks for the advice and all of the information! I took all the information I printed from this website to my doctor's appointment. The doctor said my case was "different" looking so had several PA's come in and look at it. Maybe that will help some other poor sucker who is itching and scratching themselves to death!