Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Does This Look Like Dh To You?
0

26 posts in this topic

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.photobucket.com/albumview/albums/REBJMB/a9078df7.jpg.html?o=0

http://http://m1147.photobucket.com/albumview/albums/REBJMB/2b450d60.jpg.html?o=1

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets2_Symptoms.pdf

Did the derm take an accurate biopsy? http://www.arupconsult.com/Topics/DermHerpetiformis.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.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets3_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.

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.ph34r.gif

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?

0

Share this post


Link to post
Share on other sites




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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Ice packs. Others have used Walgreen's benzocaine.

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Well, yay!

Hope the dapsone works and you can proceed with testing.

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,418
    • Total Posts
      917,668
  • Topics

  • Posts

    • Italian pasta
      Get some celiac travel cards to print off and keep in your wallet.  Present them to your waiter.   http://www.celiactravel.com/cards/ Tell the airline that you need a gluten free meal, BUT take food with you because odds are the airlines will make a mistake.   As far as the wheat pasta.....some folks say the wheat is different.  I personally think they are kidding themselves.  There is no scientific proof that I have found to support this theory.  (Anyone want to present such data?)  Italy, from what I heard is great for celiacs.  I'll know for sure this summer!  I'll be there!   As usual, we plan on bringing some packable food, but we are good at shopping at grocery stores for food and picnicking when traveling.  I expect foods at grocery stores to be clearly marked as they were in Great Britain since they are part of the EU.  
    • Villous atrophy with negative tTG IgG/IgA, high Gliadin IgA!
      It looks like you have a few options that you need to consider pursuing: 1.  Get back to your doctor and tell him to figure out what's wrong with you.  Take a friend because it helps to have someone listen and take notes who is not the patient.  Get copies of all lab reports and doctor notes always and keep a file on yourself to share with future doctors or to monitor your progress.   2.  Ditch this GI and get a new one (SIBO is real per my celiac savvy GI).  Take a friend with you.   3.  You say you are lactose intolerant.  Experiment by going lactose free for six months -- not just a few days.  This will help to promote healing and help determine if milk (lactose or proteins) are causing villi damage and not gluten. 4.  Recognize that some celiacs test NEGATIVE to antibodies.  Per Dr. A. Fasano and Dr. Murrary, based on their clinincal experience and recent data just published, they estimate that 10 to 20 percent of celiac disease patients test negative to the serology screening test. That means consider yourself a celiac and stop your gluten intake for at least six months.  Normal vitamin and mineral levels do not rule out celiac disease.   5.  Recognize that you can multiple reasons for villi damage.  That's why a second consult with a celiac savvy GI is important.   Good luck!    
    • Continued Symptoms
      Try keeping a food and symptom diary.   She could have allergies or intolerances.  But, again, I am not a doctor!  I am healed from celiac disease, but I still react to certain foods and have allergies.  Those will probably never go away as I have been plagued with them all my life (as my siblings have too).  She could have a milk protein intolerance and not just lactose.  Eliminate all dairy too see if it helps.   Speech really normalizes by the age of 8.  I can not say if your public school will evaluate her.  My home-schooled friends are still monitored by the state and receive state funding.  So, I would assume they would receive all the same benefits.  Try calling.  
    • Weeks in and feeling no better
      Let me tell you that based on what people post on this forum, it takes MUCH longer to heal.  In theory,  it should just take a few week on a gluten diet to promote villi healing.  Your body is constantly regenerating new cells in your gut on a daily basis.    Why the delay?   First,  it takes a long time to really master the gluten free diet.  So, in the beginning, dietary mistakes are often made which can delay the healing time.  Second,  celiac disease is an autoimmune disorder triggered by gluten causing a "flare-up" which can be measured by the level of antibodies in your system.  Antibodies can take weeks, months or years to come down.   Third,  there's the type of damage done to your body to consider (e.g. bone damage, depleted iron levels).  Usually anything neuro takes much longer to heal. Has your doctor checked you for nutritional deficiencies?  If not, ask.  You might be really low on a vitamin or mineral.   You could be low on digestive enzymes (actually they can not be released in a damaged gut).  So even when eating gluten free foods, your body is not digesting and absorbing the necessary nutrients.  You could help the healing process by taking gluten free supplements and enzymes.   But it is best to see what you are actually deficient in.   Most of these deficiencies resolve with time. Finally, my parting words of wisdom (as passed on by many of our members), is patience.  I know.  Hard to be patient when you want to feel well, but it will happen.   Hang in there!  
    • Gluten and panic attacks
      Now if everyone out there who probably has a gluten problem adopted your attitude, they would be having a much better life.  After over 10 years gluten-free myself, who really cares about gluten pizza? I go months without gluten free pizza, which is very good by the way, and I am not an emotional wreck.  Imagine!  Glad you feel better and yes, it was the wheat!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,550
    • Most Online
      1,763

    Newest Member
    ahp
    Joined