documented day 76 of itchy rash - is this DH?

[MsJess]

On May 20th I noticed some itchy bumps on both of my wrists starting to slowly spread further up my arms and so I went to the dermatologist. She gave me a steroid shot hoping it would go away and gave me some topical corticosteroid cream as well as zyrtec. Well a few days later I ended up with shingles, only itchy (not painful). So I went back to her and she gave me a spray corticosteroid. The cream nor zyrtec was stopping the itching so I stopped using it. The spray did not work so I just powered through it thinking the rash was related to the shingles. Fast forward to a couple of weeks after my shingles went away, my rash still wasn't going away and it was spreading. She decided she was going to do a biopsy on one of my spots. It came back as eczema which I have never had before. Meanwhile it has spread to my stomach, back, neck, hands, arms, the front of my shoulders near where my armpits begin, upper legs, inner thighs, bottom, chest, sides of my abdomen, and feet. She wants to do a patch test on the 17th since she thinks it's caused by a contactant. I thought it could be my laundry detergent, dryer sheets, or body wash as they all had changed recently. I changed back and nothing. Oatmeal baths do nothing. I am losing sleep and concentration. I have blisters on my hands that are itchy but so painful and drain clear fluid. This rash is progressing very aggressively it seems and it's not getting better. Yesterday I found out about DH. I used to have digestive issues but it would be random and I never found out what it was caused by. It cleared up so I assumed it was gone. I don't know if it could move on to be DH or what. I just am so tired of this rash. I have times where I scratch til I'm bleeding and still no relief. Sometimes it feels like a deep rooted itch that if I scratch with a little more force that it will relieve but it never does. I have bruises from scratching. Can anyone give me any insight into this rash so hopefully I can address the issue and get rid of it? 

 

Edit for more info: My dermatologist gave me prednisone to use for 10 days at my last visit with her on the 19th. I used it but it's like it didn't work at all. I used to take two benadryl to get some sleep at night but it stopped working so I stopped taking it.

[Gemini]

Ms Jess.......both DH and eczema are related to Celiac Disease.  DH is actually the skin manifestation of Celiac. I would highly suggest going back to these not too helpful derm docs and asking for a DH biopsy.  There is a specific way it has to be done so you need a derm with Celiac/DH knowledge.  A few comments......

Most dermatologists are pretty useless at helping anyone. There are so many rashes and causes of them, they generally don't bother to find the root cause, just medicate, medicate, medicate.  That is only temporary help, if at all.  They overuse steroids and they are becoming the new antibiotics and you know how that all worked out.  Using steroid creams and shots is not something to be used repeatedly.  Ask for another biopsy for DH and see your PCP about getting tested for Celiac Disease. They could do a full antibody panel to see if something shows on that.  A positive biopsy for DH is a diagnosis for Celiac.  It really sounds like DH, from the intensity of itching that you describe. Many rashes are food related but you will not hear that from the derm crowd. They always seem to blame laundry detergent or fabric softener and I know this from experience.  There are people on here with DH so I hope they chime in with their expert advice.  Do not take any more prednisone because that will interfere with Celiac testing.  Make sure you are eating gluten for testing and be pushy about it if they balk at the idea.  Polite, but pushy! 

[squirmingitch]

Gemini gave you good information. I'm going to repeat some of it because it bears repeating.

NO MORE steroids!!!! You should have been finished with the Pred on the 29th. That makes 5 days you've been off it. You need a minimum of 2 weeks off. 

DO NOT QUIT EATING GLUTEN YET! You will get false negatives on testing.

Now.....

Oh you poor, poor thing! My heart goes out to you. {{{{{{{{{{HUGS}}}}}}}}}}}}}}}}

It sure sounds like dh to me too & I ought to know. You sound so much like I did having the mother of all outbreaks. 

Okay, let's get to work here:

You need to get a dh biopsy & it's not done ON a lesion like she did the previous biopsy. Getting a properly done dh biopsy is the fastest & surest way to a dx. A dx of dh IS a dx of celiac disease & no further testing is needed. Open Original Shared Link

 So first off, you need to get a derm to do a dh biopsy the CORRECT way. Print these off & take them with you & make SURE they read them & do it the correct way!

It is important to have your dermatitis herpetiformis skin biopsy performed by someone who has diagnosed the skin condition before and knows how to do the biopsy. The skin sample must be taken from skin directly adjacent to the suspected dermatitis herpetiformis lesion, as opposed to directly from the lesion, since inflammation in the lesion can destroy the IgA deposits. FROM:

Open Original Shared Link

This is more technical for the professional:
Open Original Shared Link

INSIST on a dh biopsy. Do not let them run you down the road of try this cream, use that potion, it's scabies, it's psoriasis, it's poison ivy, it's contact dermatitis, it's bed bugs. They can play that game AFTER they do a dh biopsy if the biopsy is negative. They work for YOU. Tell them you want them to prove it's NOT dh and that can be done with a correctly performed dh biopsy.

ALSO, you want an order for a blood test. An eTG  TG3. This is an Elisa test for anti-epidermal transglutaminase. If they won't give you the order then get your PCP to do it.

Open Original Shared Link

Open Original Shared Link

 

Note that 60% of those with dh test negative on the celiac blood panel. Never the less, you should pursue getting the full, current blood panel. Your PCP or any doctor can order this. I just want you to be aware that there's a 60% chance it will turn out negative if you have dh which I believe you most likely do. Here's the full panel. Make sure they order the whole thing.

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

I want to mention that the patterning they will be looking for in the dh biopsy is easily destroyed by scratching.  Yeh, I hear you!  Sooooooooooooo, here's what I suggest. The biopsy needs to be taken next to a fresh lesion so pick a few out the day or two before the appointment & tape some super thick gauze pads over. This is to help you remember not to scratch that area & to protect the area. 

 

What can you do now for relief?

Nonsteroidal anti-inflammatory drugs may exacerbate dermatitis herpetiformis; however, ibuprofen appears to be safe.

Iodides may elicit or exacerbate dermatitis herpetiformis. Here's a link for a low iodine diet:

Open Original Shared Link

 

 

 

[squirmingitch]

I knew I forgot something.

Those with dh tend to have none to milder, fewer GI issues than those celiacs who do not have dh yet we do have the same damage to the villi.

I too, had more GI issues before the dh presented. After the dh presented, I had random issues other than I had horrid bloat and gas & belching in the latter stages before the dh presented. This carried over when the dh went nuts but I didn't have diarrhea but maybe once every 6 weeks or so & then just for a part of a day.

More than 50% of diagnosed celaics did not present with GI issues. There's a fun fact for you. There are many, many more symptoms of celiac than just GI issues. 

[Fundog]

I don't have anything to add to the excellent advice and wisdom you have already been given, but as someone who has been where you are and gave up without complete testing, you have my heartfelt compassion and empathy.  Do read that thread about ways to stop the incessant itching and feel better.  There is light at the end of the tunnel!  I had my horrible rash for A YEAR before the lightbulb moment hit me that it might be a food allergy.  Three weeks gluten free, and I had finally stopped scratching myself to bloody ribbons.  Unfortunately, that was AFTER I had given myself cellulitis (hence a desperate need for a solution) and BEFORE getting my dermatologist to give me a biopsy.  Of course I got inconclusive results, other than "itchy skin."  It didn't matter, I have my answer:  I am never going back on gluten.  Shortly after that worthless biopsy, I accidentally ate wheat again, several times.  Once again the rash was back.  I resolved to be more careful, and started over.   Three weeks later I woke up with clean (not blood stained) sheets again, and it gets better every day.  I will continue to have purple polka dots for a lot longer, but I see daily improvement.  I found the two things that helped me the most, if at all, are Caladryl lotion, and baking soda baths.  A cup and a half to a full tub of warm water, and soak until you are wrinkled.  Good luck!  I hope you get some answers, and some relief.

[squirmingitch]

Fundog those purple polka dots will fade & in time disappear. it takes a while but they do go away.

[MsJess]

Thanks for the responses guys! Good to know I may be getting close to pinpointing this. I called my dermatologist yesterday and told her nurse practitioner I wanted to be tested for DH and she seemed so put off by the fact I wanted to be tested for something that they didn't come up with. I'm wondering if i should just cancel the appointment with her altogether and just go to a PCP. I actually don't have a PCP at the moment but I have gotten a few suggestions and perhaps they can get me in the office and do the tests you guys have suggested. I don't have any spots on me right now that I haven't scratched the top layer off (oops) but I'm sure more will pop up. Right now they're all just pinhead sized dots all over. I added pictures so you can see what it looks like. I realized the oatmeal baths may have been causing me to break out more, if DH is what I have, so I stopped that and took an epsom salt bath and I was able to get some decent sleep. Not great sleep, but hey, I'll take it where I can get it.

 

[squirmingitch]

A PCP is not going to do a skin biopsy but can order all the blood labs. I dunno, do you think the derm will go ahead & do a dh biopsy put out or not? If the answer is yes, then you might as well do it there than try to get an appt. somewhere else where they may act the same way. In the meantime, you could call around or email different derms & ask who has experience with the skin manifestation of celiac disease.

Good that you lost the oatmeal baths. I did find Epsom salts baths to help.

You can also have a shot or two before bed to help you sleep. 

[MsJess]

The NP told me she would email my doctor and would get back with me on Monday since she's out of the office today. I guess we will see if they will do it. I don't know if I want to even have her do the patch test. My mom suggested I go to a specific dermatologist but when I called back in June, there was a two month waiting list. I could probably try to get in to see her but I'll be waiting a while. 

I may try taking a shot or two. Or six. 

[squirmingitch]

Just MHO but I think a patch test at this point is a waste of time & money.

Just make sure to take the instructions for how it's to be done & make her read it. I'm going to tell you something ~~~ lots of people have gone in & talked to the derm about it & then by darn! the derm goes & takes it from directly ON a lesion anyway!!! Usually, it's taken somewhere that the patient can't watch, like the back or the neck etc. and the patient doesn't even know it wasn't done right until they get home & can look in a mirror. I would say if at all possible to take someone with you so they can watch & help you advocate.

I had to have spent about a year not sleeping. Sheer exhaustion was the only time I was "out". Looking back, I can't believe I lived through that.

[MsJess]

I probably will cancel it then.

My issue is that I don't see a good lesion for them to take from. I'm hoping a new one pops up I suppose. Yesterday I couldn't even concentrate at work because of my itchiness. With the Epsom salt bath, it has been such a relief. I'm still itchy but not nearly as much as yesterday.

 

Yeah I've been relying on Starbucks for like a month to get me through the day. No bueno. 

 

A little sad that if this is what it is, that I won't be able to eat a lot of things I love anymore though. Some gluten free foods just don't taste quite the same to me. 

[Fundog]

Don't feel too bad about ditching those foods.  I did at first, but then when I finally stopped scratching myself to bits, I realized those foods are not worth the misery.  Plus, I got online and started learning how to make all those treats from scratch, using my very own custom blend of whole grain flour!  One of my favorite foods is pizza, and I found an awesome recipe for gluten free crust, using my custom flour blend.  Oh man, it is so yummy!  And super simple to make, too.  The only thing I really miss is Chinese food.  Our family tradition when we go "into town" 50 miles away to do our monthly grocery shopping is to have lunch or dinner at the Chinese buffet.  But now I can't eat there because nearly everything is swimming in soy sauce.  We will have to find a new favorite restaurant for our traditional grocery trip dinner.  (One of the primary ingredients in soy sauce is wheat, so you'll need to watch out for that.)

[MsJess]

Thanks for the tip. I'm a fan of sushi so I will be missing out on that as well (the kinds I eat have gluten). I just need to hurry up and get these tests over so I can stop eating this because now I've eaten lunch the itchiness has presented itself and won't go away! 

[p33stewart]

I haven't eaten gluten since 2010.  When I get stressed I get a horrible rash.  Never thought it had to do with celiacs.  I do buy a creme at Walgreens called Vanicreme and it makes it stop itching.  Doesn't have cortizone or any of that junk in it.  I don't know why it stops it but it actually clears it up.  My sister and I had the rash at the same time and had tried everything.  The dermatologist told her to try it, it worked so she told me to try it.  It is about $15 for the jar but I am sure you would hock your soul to stop itching, I know I would have.  My rash doesn't look like yours it is raw blotches so maybe not the same thing but my husband had a different rash and he is not celiac and it stopped him from itching when he finally decided to listen to me ( 4 trips to the Dr later).  Maybe because it is thick enough it stops it from getting air, I don't know I just know that it is now in my house at all times.  The same brand bar of soap is nice to wash with.  Haven't had the rash in a long time, maybe 3 yrs because when I get stressed I start bathing with the soap and anything that itches gets a good dollop of Vanicreme.   Hope it will stop the itching so you can get some sleep.  Ask the person behind the makeup counter if she has any coupons for it, sometimes you get a great deal from them on it.  

[Fundog]

5 hours ago, MsJess said:

Thanks for the tip. I'm a fan of sushi so I will be missing out on that as well (the kinds I eat have gluten). I just need to hurry up and get these tests over so I can stop eating this because now I've eaten lunch the itchiness has presented itself and won't go away! 

Lol, I know exactly how you feel!   In the meanwhile, eat your fill of all the sushi and other gluten filled treats you love, until you have a proper negative association with them.   My sister (who also has celiac) told me that she has since developed an aversion to what she describes as the  "slimyness" of gluten grains.  I have yet to experience that, since I regularly bake wheat bread for my family.  However, I have developed an association between anything containing wheat and my dark fantasy of walls covered in sandpaper.   When I tell people of this, they look very alarmed and quickly move all wheat containing items out of my reach, lol.

 

[MsJess]

Lol well I had to go out last night and buy all new bath products as all my body wash contained oatmeal. I feel like it will be beneficial for me to eat gluten free since it will force me to eat better. I'm so beyond ready to be diagnosed though because this itching is going to ruin my skin. I used to have such beautiful pale skin and now it's blotchy and speckled and scaly. 

[Di2011]

Hi Jess

Your photos look a lot like my DH. I am not officially diagnosed. I find avoiding gluten in food is not the only fix. Avoiding bakeries, bakery aisles, and watching who is eating what at a cafe/restaurant table I am sharing with others... Among other seemingly crazy things.

Last week, after a year of being mostly itch free, I thought I would be brave.. test my reaction. I went to a bakery/cafe and had coffee with my Mum. Bad decision. Lesions all over my stomach and arms. Uggh. In hindsight I see a bakery with flour filling spaces including coffee beans just waiting for me to itch. 

I find both hot and cold somewhat soothing. Cold/hot packs, face washers. At my worst I used the cheapest frozen peas. They can be formed to target the worst, sleep depriving, areas, wrapped in whatever I could find (facewasher, teatowel etc). Warm showers might aggravate but at the time of showering they are calming and almost like a mini meditation time in lieu of sleep. If you do, drop the temp slowly over time .. And if you can slowly, slowly take it to cold. The warmth is calming for the mind, and(slowly) cooling at the end of a shower or bath I find calming for the skin.

At my worst a few years ago I deliberately scratched. There is something - I call it the little white dot -  in its manifestation that once gone the insane itchiness stopped. I was in an extreme state -head to toe for over a year, blood stains everywhere, before I got to this state. Try not to scratch (I know..hard huh!?!) It is not pretty. 

As much as I wish I had an official diagnosis - we all have a limit, a job to do pay bills, a family to care for. I had really amazing advice from people on this site. The best was to go with instinct. The second best (of so many) was to keep talking and asking questions.