1 1
Metoo

Possible DH - It is driving me crazy

Rate this topic

Recommended Posts

I was gluten free for 5 years....because of a rash on my hand, at the time I could get no doctor to listen to me after months, and a couple of cousins who could no longer consume gluten,  I went gluten free.  However the past year...I had turned into gluten light...I wasn't avoiding cross contamination anymore, or communion. 

In September....I broke out in an awful bumpy red rash all over my elbows, back of my legs, back of my neck.  The dermatologist did a biopsy, which turned up negative....however I was not eating much gluten, certainly not enough for a gluten challenge.  The dermatologist seemed confused told me not to eat gluten if that helps, that it clinically looks like DH but was confused by the biopsy. 

I went seriously Gluten free in October.  I was healing it seemed to be all calming, then about 2 weeks ago I was glutened. 

Now..the rash is out of control, the very next day it flared up.  I have it now all over my chest and seems to be spreading up my neck.  Its intensely INTENSELY itchy, so much I scratch it and it bleeds, I wake up in the night scratching it, it hurts/burns it itches so much.    The fact that I am 2 weeks out and its still morphing has me worried.

I have a dermatologist appointment tomorrow. 

Has anyone gone on dapsone for a very short period?  Or found another topical medicine that works? 

If nothing else I guess I am hoping for a skin cortisone shot. 

I am beginning to live in fear of food.  ugh. 

  • Like 1
  • Upvote 1

Share this post


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


Nooooooooooooo on the cortisone shot!!!! Oral steroids or steroid shots will work BUT when the steroids are done there is a backlash of the rash that will make you wish you had never been born!!!! Trust me, been there, done that!

Dapsone has a lot of side effects. Read up on it before you jump in the arena. Many here have tried it and the majority had side effects & had to quit it however some have done well on it.

My dermatologist prescribed Fluocinonide Cream (or ointment) 0.05%. It really helps!

Share this post


Link to post
Share on other sites

MeToo & Squimingitch, I too had many biopsies & cultures that came back negative which I now know is because they were not performed properly. I wholeheartedly agree on NO to the cortisone shots, I had two big loads, a week apart, and initially my rash started to get better, but, within 2 weeks, it came back with a vengeance and a life of its own. I then went on a 6 month treatment of oral prednisone (60 MGs a day) and it did nothing for the rash, only caused me more side effects and was horrible to taper off of it. I would avoid steroids at all costs if you can. Even the topical cortisone  creams. The Dapsone has been a wonder drug for me. I’m aware of all it’s side effects and do hope to get off it soon. I started at 50mg a day and 3 weeks later dropped to 25 mg a day. I’ve tried completely stopping it twice, but within 2-3 days the Rash returns and I cannot handle the pain and itch (after feeling such relief!) that I will stay with it a few more months. And of course, I’m gluten free for life. These pics were from my all time worst, probably a week before I was dx’ed by our very caring family Doctor, (on his own time over the weekend)  - I then had a Gluten blood panel test and a proper skin biopsy which both confirmed his diagnosis  - so much for the dozens of “specialists” I saw & spent so much money on, all the time for light therapy 4x a week, the many medications for misdiagnosed diseases, Scabies, excema, herpes, psoriasis, spider bites, impetigo and several other “guesses” or even the “Sorry, I just don’t knows!” 

D89CC77D-B030-4971-A2B8-DDE0ABB8A803.jpeg

C1A19576-7722-460F-9DB0-5DF4410EFD89.jpeg

Edited by Barbie Wickham
Added information

Share this post


Link to post
Share on other sites
2 hours ago, squirmingitch said:

Nooooooooooooo on the cortisone shot!!!! Oral steroids or steroid shots will work BUT when the steroids are done there is a backlash of the rash that will make you wish you had never been born!!!! Trust me, been there, done that!

Dapsone has a lot of side effects. Read up on it before you jump in the arena. Many here have tried it and the majority had side effects & had to quit it however some have done well on it.

My dermatologist prescribed Fluocinonide Cream (or ointment) 0.05%. It really helps!

I never knew steroids made it worse. Thank you for posting this. I too have the rash on my knuckles, but it's undiagnosed. The allergist prescribed steroid cream and it only seemed to make it worse so I stopped using the prescription. My intent is to do an eight week gluten challenge after the holidays, but after reading this original post I'm fearful that my rash will spread. Right now it's contained to my knuckles not to mention the other symptoms like throbbing joint pain, dizziness, fog, fatigue. The last time I was glutened I felt like I wanted to vomit, which I had never experienced before. Can symptoms worsen or spread each time you're exposed? Seriously hesitating to do this for eight weeks after reading this thread.

Share this post


Link to post
Share on other sites

I've never heard anyone say that topical steroids make the rash worse but it's a different story with oral steroids or steroid shots.

Glutenings can have different symptoms & severity. We're all individuals but yes, as a general rule, reactions get stronger the longer you are strict gluten free.

Share this post


Link to post
Share on other sites
Ads by Google:


okay.....this answered a lot of my questions!  I will try to avoid the steroid shot.  It is seriously wearing me down.  its like I can't' get away from the pain / itching.

The other question I had was....the reaction seems to be getting worse...the more I avoid gluten.  I was going to ask the derm today if that was true or not.  I mean this break out was way worse than last one. 

It calmed down a little today, so there is some relief!   I will see if I can post a photo on here of it, its not as red today. 

Share this post


Link to post
Share on other sites

You have to understand that the antibodies have been deposited under the skin. You won't be free of the rash until all the antibodies are gone from under your skin. That can take weeks, months or years. There is no one answer for everyone. DH is like the bastard stepchild of celiac as far as research goes. Celiac has not had enough research & dh has gotten far, far less than celiac in general. I don't want to discourage you but I have been on this road for 6 years now. My rash has slowly ramped down with each passing year. From what people on this site have reported, my case is the minority. I just want you to know. 

The dh rash is extremely sensitive to the tiniest amount of gluten, the tiniest amount! I tell people with dh that they are playing with fire if they eat out. You really can't take any chances. 

The dh rash can & does come & go seemingly at will. It can present whether or not you are eating gluten. It can & will present after you're gluten free. What exactly spurs it to flare? Any number of factors and few that are medically confirmed but those of us with the rash can confirm. Stress plays a part. It is medically known iodine intake can be a factor as well as NSAID's. Maybe illness. Heat & humidity, sweat. 

You will think you have it all figured out & then BOOM! suddenly it turns the tables on you & you realize you didn't have it all figured out. Trying to predict this stuff will drive you absolutely bonkers!!!! Save yourself the grief & don't try to predict. Human nature says you will try to predict. Ah well, that is human nature after all.

I would advise staying away from oats, even purity protocol oats. Research says 10% of celiacs react to even those purity protocol oats and most who have come on this site with dh, report they can't eat oats at all.

  • Like 1

Share this post


Link to post
Share on other sites
14 hours ago, squirmingitch said:

The dh rash is extremely sensitive to the tiniest amount of gluten, the tiniest amount!

Yes. I would get the ITCH back, not the rash part, when I ate gluten-free cookies or crackers!

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
1 1

  • Who's Online   10 Members, 2 Anonymous, 428 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of gluten-free fare, with 240 coeliac-safe eateries throughout this huge city. The super hip city of Portland also ranks highly on this list, with the capital of counterculture rich in gluten-free cuisine, with San Francisco and Denver also included. Outside of the states, several prominent European capitals also rank very highly on the list, including Prague, the picturesque and historic capital of the Czech Republic, which boasts the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge 330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe eateries.
    The full top ten gluten-free cities are shown in the graphic below:
     

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com