• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Does This Look Like Dh To You?
0

Rate this topic

26 posts in this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
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.

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.

  • Upvote 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?

Share this post


Link to post
Share on other sites
Ads by Google:


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!

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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!

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

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.

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

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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.

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

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!

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!

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
      108,156
    • Total Posts
      939,971
  • Member Statistics

    • Total Members
      66,141
    • Most Online
      3,093

    Newest Member
    Victoria Zoey
    Joined
  • Popular Now

  • Topics

  • Posts

    • Dairy is a major issue with celiac, due to the enzymes to break it down being produced by the villi tips being mostly destroyed or damaged first. Eliminating for a few months may be critical. I might suggest digestive enzymes, I am taking Jarrow Enzymes at 2x the dose, Jarrow Bromelain, and sometimes some extra papaya enzymes. I have issues breaking down the large amounts of foods I consume otherwise (I am trying to body build bulk). I also would look at some protein powders if I was you. Vegan protein powders are easy to digest most times an can be great. Pumpkin Seed protein is the easiest on the stomach, being a balanced PH, high in zinc, iron, magnesium, it is very good for recovery and putting on weight in addition to others. Might also consider blends, try not to get anything with too much gums in it. I like NutraKey V-Pro and MRM Veggie Elite. I also buy a whole list of others. On her food, veggies, and meats should be cooked to almost mush, try using a crockpot and stewing them. This will make them easier to digest and break down.
      Is she having any other issues? Like Bowl issues? I find I can loose hunger if I back up, and I have to take magnesium like crazy and eat a whole lot of fiber to keep it moving. Take it you already read the newbie 101 section about getting all new cookware, and deconing the house? Bit of a extra tip I swear by to everyone, Freezer Paper/Butcher Paper. Makes a nice clean prep surface and easy clean up.
    • Hi Kirsty, Gluten messes me up in a lot of different ways, some of which I recognise in your first list. You can find a massive list of symptoms associated with celiac here: https://glutenfreeworks.com/gluten-disorders/symptom-guide/ and it may be that some of your other symptoms can be found there. It's also worth searching this forum as it's been going for a long time, in internet years at least.  It certainly messed with my blood sugar and like you I'd take tests which didn't reach the extreme values, but that didn't stop the symptoms. The only way I realised this was when I removed it from my diet, for other reasons and found that a load of different other symptoms also resolved.  After this happened I then went back on to gluten for a test, a gluten challenge. My symptoms came back, but my blood test and endoscopy were negative for celiac. My consultant told me to avoid gluten for life.  In your case you need to decide whether to push for more celiac testing or not. If not, please consider fully excluding gluten. My own experience is that it's not something that you can have a little of and get a health benefit, you are still engaging your auto immune system. Obviously if you're experiencing extreme symptoms when you remove it you should do it in consultation with your doctor, but maybe if you could just get through those difficult first few days you may experience relief from some of your symptoms? Best of luck matt    
    • So... his gp did a genetic test - positive - and has referred him to a gi. His paed and diabetes educator have ordered the genetic test and another coeliac screen for 3 months and then they will decide if he needs to see a specialist because they're still convinced its most likely a false positive. Why test at diagnosis of diabetes if they don't believe the results anyway? Why is this disease so confusing for the medical world?  Anyway we're sticking with the gp and hopefully it won't be too long before he gets into a gi.  It seems that blood tests don't matter in any situation. If they can find any excuse to invalidate them they jump at it.  Makes me so infuriated I just laugh about how I already seem to know more. 
    • Thank you! I have been considering lactose, though I'm reluctant to remove more things from her diet. She has not had the classic lactose intolerance symptoms of diarrhea, gas, or bloating, though I know she could still have trouble with it. She's been on the medication for less than a week, so it's not the cause of her symptoms. I did not call the manufacturer but it is listed as safe on glutenfreedrugs.com (under the brand name periactin). It was prescribed by a pediatric GI who specializes in celiac. The first question my daughter had for the doctor was whether the medication is gluten-free, and she told us it was.   
    • cyclinglady, I think Joseph is hoping to exclude celiac disease.   I feel for him, as I also had a hard time accepting my daughter's celiac.      I had this gene test done hoping our GI doctor made a terrible mistake.   But now I have triple prove that my daughter really does have it! I agree with you and others, that if biopsy confirmed celiac disease, you do have celiac disease. (But on occasion, doctors can be wrong, right?) However, I have a distant relative (not related by blood) who thought she had celiac diease for 10 years (no biopsy done), lived a strict gluten free life style, but still suffered from health issues, ended up in the mayo clinic, and found out that she did not have celiac.    She did not have the celiac gene.
  • Upcoming Events