• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Help For The Itching, Stinging, Burning, Pain Of Dh
1 1

43 posts in this topic

Recommended Posts

sisterlynr    7

For me, popping the blisters is not only satisfying but makes the area less itchy and start to heal. I wait until they get to the perfect hardness. Sometimes the blister fills right back up, for as much as a day. Does anyone else find this to be true?

Also, in the summer I was able to get big spears of aloe. I kept it in the fridge and would put it on itchy areas. Worked very well.

I've also found tea tree oil to help with itching.

I first had blisters on the soles of my R foot and had no clue it was DH and neither did many doctors. I would sterilize a needle and puncture the blister to release the fluid. It DID make the itch not as bad. Yes, mine would refill and I would repeat and I also applied athletics foot cream. The salve dried the blister and it would peel as it healed. I would then apply Bacitracin ointment to avoid infection. I have Type II Diabetes.

I then broke out on my shoulder and scalp and still no diagnosis. When my whole body broke out in Mar 2012, there were way too many blisters to break open. Let's just say I was covered like a blanket. I thought of shaving my body. . . was desperate to stop the itch. . . I'm on Dapsone and am recovering!

Share this post


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


I never had any luck with Triamcinalone (Kenalog) neither the cream or the shot :-/ I didn't get improvement with anything less potent then Floucininide, best result were with Clobetasol Propionate. I found this listing a few years ago and it's really helped me visualize the different strengths of topical corticosteriods. So every time I changed doctors I didn't end up with another low potency cream/ointment under a name I didn't recognize.

https://www.healthne...lidel_natl.html

But I must admit I agree popping the blisters is the only relief from the pressure and pain of the blisters. Mine always seemed to fill back up at least once and I'd end up scratching off the scab/crust again. But once they turn into an itchy lesion then the Sarna was a great relief...

Nothing like self destruction to discover a good product. It's like "let me cut myself so I can by these great bandaids" :blink: a little different I know, but I still feel like the whole thing is very self-perpetuated.

Edited by tealiemonster

Share this post


Link to post
Share on other sites

yah Lidex did nothing for me. That is the Floucininide. Super potent steroids did nada. I got stretch marks now le sigh. No relief but my rash went crazy when I stopped using them and I tapered off too.

Share this post


Link to post
Share on other sites
Hopeful1950    16

Here's something I found that might provide some relief from the symptoms of DH. It's called Neurontin (gabapetin). It is used for restless legs, fibromyalgia etc. It was given to me years ago because of insomnia and fibro. A while back when I was having a really big awful flare of helllish itching, burning DH, I decided to see if it would help and it did! It really mellowed out the night time itching (I took it at bedtime) and seemed to have a lingering effect the next day. It is not a horribly sedating drug so it can be taken during the day if you don't have to drive or anything. It doesn't have any direct effect on the rash itself, just relieves that overall tingling, burning, itching that makes a person want to roll around on astro turf to make it stop.

Share this post


Link to post
Share on other sites
sisterlynr    7

I can see where Neurotin would help with the symptoms. My Dad had spinal stenois and his legs burned and stung. He took Neuotin.

Just a word of caution while taking this drug. You have to wean off of it or can suffer seizures, which happened to my Dad once. It is helpful to neuropathy patients.

Share this post


Link to post
Share on other sites
Hopeful1950    16

Wow. The doc that gave me the Neurontin never said anything about weaning off of it! (No surprise there). I think the dose I took was 100mg and I only took it intermittently (not every day) so I didn't have any problems, thank goodness. Thanks for giving us the heads up.

Share this post


Link to post
Share on other sites
karinschm    0

Hey everyone,

I don't know if someone already posted about this, but anyway, I also have DH (and I am celiac, diagnosed about 1 month ago by a skin biopsy) and found that topical vitamin B5 works wonders for me -- relieves itching, DH heals faster, prevents the appearance of dark spots and scars, with the bonus of not being an irritant agent. Since it acts as a natural anti-everything (anti-inflammatory, anti-allergic and so on), besides being a skin healer and protector, I think it makes sense... Here is an article about it.

Incidentally, Vitamin B5 is helping my skin to recover in general -- I always had super dry skin, with acne and red spots due to celiac disease. Once I removed gluten from my diet and started doing a "ritual" of vitamin B5 (nighttime moisturizing mask and body creams), I notice the difference in 1 week!

Edited by karinschm

Share this post


Link to post
Share on other sites

Wow! No one has posted here in a while but I am overwhelmed by the experiences regarding DH, which I am 99% sure I have since I identify with almost everything on this forum. I have been itching insanely for 5 weeks. I have been strictly gluten free for almost 3 weeks but no relief. I have never heard of the iodine perpetuating the skin condition. I eat a lot of eggs and dairy and nuts. I am overwhelmed by the similarities in our ailment and also misdiagnosis'. I have not and probably will not get an intentine biopsy but I am scheduled for a skin biopsy next week. I have been packing my arms, shoulders and wrist in ice for about 5 years now. No topical creams work. Ever. Even a little. Nothing gives me relief but freezing my arms. I am exhausted and frankly depressed about it. Someone mentioned only eating meat, veg, and fruit. I guess I'll try that… hopefully before I go out of my mind. :(

Share this post


Link to post
Share on other sites
squirmingitch    495

Your biopsy will come up negative. You HAVE to be actively eating a full gluten diet up to the day of the biopsy. Sorry.

Share this post


Link to post
Share on other sites
Rita L    0

Okay. I'm not going to stop dear. I don't think you are disagreeing with me & even if you did ..... it's not against the law. :lol: Good things can come from hearty discussions batting things back & forth.

Oh I know the let's blame everything on menopause diagnosis. AND the "let's put you on antidepressants!" Very gleefully said & with a crazed look in their eyes. :huh: And how many people on this board who have been told countless times the same things!!!!!!!

And I am not denying you have legitimate pain from damage in the accidents, just plain life & DDD. What I am saying is that I think you will be amazed at how much pain will go away in time, gluten-free, & healing from gluten damage. Let me term it another way ---- despite the experiences I read on this board I never thought so much of my pain would go away simply from being gluten-free. I have been surprised!!!! Verily! I am surprised your neuro isn't apparently aware of just how much gluten affects the neurological aspect.

Have you checked the forum here for good docs in your area? And if you don't find anything there then POST there saying you're looking for a good this or that doc in your area. Also local celiac support groups can be a wealth of information in that regard.

And I understand & agree that it's not smart to blame everything in your medical profile on celiac & possibly missing something important in the process.

But rest assured that healing does happen. Healing takes time but it DOES happen! You can bank on that one. :)

I sincerely hope that one year from now I will see you posting about how much better your life is than it was one year earlier. There have been many, many who have done so & it is wonderful to read the stories.

Now, I want to address the issue of you eating or rather being afraid to eat or maybe terrified to eat. Honey, You CAN'T be afraid of food! Do not let that devil paranoia take you down!!!!! :ph34r: Do not let it terrorize you. If you do then you are lost. You have to stand up straight, head up, shoulders back & scream that demon down. Go ahead, I dare you. ;)

Do not wait until you're about to faint to eat. Eat regular meals. Not eating like you're doing is not helping to get the weight off. Eating regular meals WILL.

When in doubt I go back to chicken breast (cooked by me), raw veggies and raw fruits.... Gluten can cause so many "other" things" like fibromyalgia... like I have... RA-my mother.

Share this post


Link to post
Share on other sites
Rita L    0

Your biopsy will come up negative. You HAVE to be actively eating a full gluten diet up to the day of the biopsy. Sorry.

 

Wow! No one has posted here in a while but I am overwhelmed by the experiences regarding DH, which I am 99% sure I have since I identify with almost everything on this forum. I have been itching insanely for 5 weeks. I have been strictly gluten free for almost 3 weeks but no relief. I have never heard of the iodine perpetuating the skin condition. I eat a lot of eggs and dairy and nuts. I am overwhelmed by the similarities in our ailment and also misdiagnosis'. I have not and probably will not get an intentine biopsy but I am scheduled for a skin biopsy next week. I have been packing my arms, shoulders and wrist in ice for about 5 years now. No topical creams work. Ever. Even a little. Nothing gives me relief but freezing my arms. I am exhausted and frankly depressed about it. Someone mentioned only eating meat, veg, and fruit. I guess I'll try that… hopefully before I go out of my mind. :(

I did my own self test for Celiac and then went to see a doctor. He said, "You don't need a test to tell you that you have Celiac. I'm telling you that you have it. Go home and eat gluten and then come back. But why? Why would you put that much pressure on yourself?" So... I didn't and haven,t regreted it once! Now with the DH, my other doctor agrees with me on it and prescribed Dapsone so I'm giving it a shot.She says also that a test can verify but I have ALL the symptoms and she feels the test is not neccessary. And yes it does suck to eat just meat (I usually go with chicken) fruit and veggies. BUT hey, it if make me feel better then I do it. With Celiac it takes 3 months or more to eliminate the gluten. I drink plenty of water after a cross contamination.

Share this post


Link to post
Share on other sites

I'm new here. I just read all the posts on this thread. I am gluten sensitive with 6 other food sensitivities. After tests results came back with sensitivity results, I went gluten free for 3 weeks. Then went on vacation and ate lots of gluten.(San Fran-home of sourdough bread.) After 1 week vacation I came home and immediately started back on gluten free diet. Broke out with DH. Severe for a few weeks-burning, hot to touch, some bleeding, etc. Since then I have had a slight rash with intermittent flareups. I went gluten free 7 months ago. How long do you think this rash will last?? Even my naturopath thought it would be gone by now.  I can't use the hot tub at my health club. I swim, but the water aggravates it. Any time I get anxious it flares up. I need to swim. This whole "adventure" started with bad osteoarthritis and swimming helps it. As a side note-the most severe arthritis (difficulty and pain walking down stairs, extreme fatigue at end of day) went away after 3 weeks gluten free. The rest of the arthritis still remains, but I haven't given up a few of my sensitive foods yet. The rash makes me feel as if all this careful eating/eliminating favorite foods was not worth it. :( How much longer???

Share this post


Link to post
Share on other sites
kareng    1,992

I'm new here. I just read all the posts on this thread. I am gluten sensitive with 6 other food sensitivities. After tests results came back with sensitivity results, I went gluten free for 3 weeks. Then went on vacation and ate lots of gluten.(San Fran-home of sourdough bread.) After 1 week vacation I came home and immediately started back on gluten free diet. Broke out with DH. Severe for a few weeks-burning, hot to touch, some bleeding, etc. Since then I have had a slight rash with intermittent flareups. I went gluten free 7 months ago. How long do you think this rash will last?? Even my naturopath thought it would be gone by now.  I can't use the hot tub at my health club. I swim, but the water aggravates it. Any time I get anxious it flares up. I need to swim. This whole "adventure" started with bad osteoarthritis and swimming helps it. As a side note-the most severe arthritis (difficulty and pain walking down stairs, extreme fatigue at end of day) went away after 3 weeks gluten free. The rest of the arthritis still remains, but I haven't given up a few of my sensitive foods yet. The rash makes me feel as if all this careful eating/eliminating favorite foods was not worth it. :( How much longer???

 

 

While you are having a new outbreak, maybe you should go to a dermatologist and get them biopsied.  Make sure it really is DH.  Sounds like it might be a reaction to the pool water?  Maybe you have something else going on that you could fix.  

Share this post


Link to post
Share on other sites
squirmingitch    495

As long as you are eating gluten-free or gluten light the dh biopsy will turn up negative so if you want a biopsy you have to eat gluten for roughly 2 months. 

I'm sorry but you say you feel like all this careful eating/eliminating favorite foods was not worth it but you did NOT eliminate gluten b/c you went & ate it. If it is dh then you MUST be 100% gluten-free ALL THE TIME & that includes trips to San Francisco eating sourdough bread. You either eat totally gluten-free or you don't bother at all. Cheating on the diet is NOT an option. If it is dh then you can NEVER cheat. DH can present for years after being strict gluten-free. You need to decide here & now if you're going to get serious about this.

With dh, the gluten antibodies are deposited under the skin & you will continue to have flare ups until all those antibodies get out from under your skin. This is not like a light switch that you can turn on & off by eating gluten one week & not the next. 

Further, gluten sensitive people do not get dh. Celiacs can have dh. You say the testing came back with sensitivities. What kind of tests? 

Share this post


Link to post
Share on other sites

im very new, like 3 week s new to the celiacs "curse" ive had itchy rash covered legs and arm for about 4 years on and off, i found that applying neosporin eczema essentials lotion every night at bed time helped so much!! thank you all i look forward to your support, and hope to reciprocate!! have a good non itchy day!!

Share this post


Link to post
Share on other sites
Robins1668    0

It took two years for my DH diagnosis to come to fruition.

I'm 46 and started having food related allergies 3 years ago. Had hives for years.

Finally had a caring Dermatologist do a skin biopsy and confirmed DH. Was so relieved and totally thought I would get better. Wish someone would have told me that was a misconception.

I have fatty liver disease so the first time I was put on Dapsone my liver about killed over.

But now we have found the right dosage to actually help a little.

All my other food allergies-dairy, soy, vinegar now manifest the same way as DH.

But I'm a fighter and will not let this disease win.

I love to cook and now know how to do so, so I can enjoy food again.

So thankful I found this forum. Everyone needs love and support. It's amazing to know I'm not alone.

I agree Ice is our friend. So ir triamcynlone and lidicane.

My dapsone dosage was just raised from 100 mg a day to 200. Here's hoping that will really help. (Watching my liver closely)

Thanks!

Robin

Share this post


Link to post
Share on other sites
squirmingitch    495

Welcome to the forum Robin! Hang in there. It can take a while. Keep a close eye on that liver for sure. I'm glad you finally got a dx. That's a FEAT!

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

  • Forum Statistics

    • Total Topics
      107,905
    • Total Posts
      938,581
  • Member Statistics

    • Total Members
      65,816
    • Most Online
      3,093

    Newest Member
    Rossy
    Joined
  • Popular Now

  • Topics

  • Posts

    • Due to the nature of the kitchen on those kind of environments it is very hard to not have CC. They are obviously not confident that they are 100% gluten-free. Honestly I would not eat any any place like that due to CC issues. I had my share of so called gluten-free earlier on with my celiac in the beginning after dia. Yeah I only trust 3 places right now not to poison me. 2 have just 1-2 items I trust, I have talked to the managers and they even showed me how they are fixed (conveyor oven, that they place disposable foil sheets on the conveyor and I can have fish, veggies etc. placed on it and roasted then straight to the plate). I would not trust any kind of bin kept food, boiled, dipped, fried, or anything like that from a fast food or chain join if I was you. Many places the chef will on a whim add a bit of something to a sauce, roax, or dish to adjust consistency. (I am a chef and this is how your taught) in most cases a bit of a nuetorl flour (wheat) or starch (corn) is added......so in higher end restaurants you get this issue. Avoid eating out unless the entire establishment is gluten-free or you know how something is fixed. I might suggest a NIMA sensor for gluten testing if you insist on eating out at those kind of places, Most of us just bring our own meal prep, protein bar. or meal replacement shake for these problems. UPDATE Further research, https://www.buffalowildwings.com/Documents/BWW_Nutrition-Allergen_Info.pdf They do not use separate fryers, NOTE many of the gluten containing products potato wedges, wings, nuggets etc are all fried....so anything fried would be gluten contaminated. Considering the nature of this business....I would consider everything on the menu off limits, all their salads even seem to contain wheat?! I really would just stay away from BWW
    • I was browsing on QVC this morning and found they have a bread machine on sale.  It has a gluten free setting. Remember someone asking about them not too long ago so thought I would post a link to the item. Be sure to read the questions and answers at the bottom of the ad.  It is on sale for about $100 http://www.qvc.com/Breadman-2lb-Multi-Function-Stainless-Steel-Breadmaker.product.K44909.html  
    • Well, as a celiac the gluten causes your own body to flare with antibodies and mistakenly attack your body most people the intestines. (I also have it attack my entire nervous system and brain) Your antibodies can stay flared for weeks to a month or so with just a crumb, so cheating is not a option. The damage to your intestines will cause malabsorption for one, second the damage leads to food intolerance issues random allergies, the more damage and longer you go the narrower your list of foods you body can put up with will normally get, These can go away as you heal by the way in most cases, they will also come and go. I had the lettuce intolerance crop up for a month or two. I still have a whole list of NO foods you can check my profile to keep it simple. This disease if untreated can lead to other autoimmune disease, cancer, lymphoma, and we had a case were one member ignored the diet and had to get a emergency colostomy and a section of their intestines removed. Side thoughts, my body works best with fresh cooked veggies to the point of being mushy, I also find taking digestive enzymes makes it so I do not vomit. I take 2-3x times the dose on the enzymes and it works great. (Jarrow Vegetarian Enzymes Plus, and Papaya Super Enzymes, I take extra bromine when using vegan protein powder shakes.) As you heal there will be some wonderful options open up in the gluten free processed foods department, you will probably lose some of those veggie food intolerance issues after a year or so normally. I have lost a few myself and enjoy some I used to not be able to eat. I will give you the newbie 101 list and a list of potential food alternatives that might give you some hope to browse through.
      https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/ https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

        I also post some great recipes in the recipe section.
    • Solid advice. Wish that more people would consider that this might be necessary for some and not entirely paranoid. Could very well be airborne, but most likely culprit is something you're eating. That said, baking, construction/open drywall, farms/animal food and bulk/flour aisles in grocery stores are legitimate worries. I was recently having frustrating problems with random but minor flare-ups, and have eliminated almost all packaged food (even gluten-free) for a bit. It has helped tremendously. I hope that perhaps my sensitivity levels will calm down in a few years, but not being itchy and scabby is worth almost any cumbersome restriction. I think for me the problem has largely been to do with the use of oats in many dedicated factories (even gluten-free oats make me very, very sick). I came to this when lodging a complaint/notifying a company that I'd had an issue with one of their GFCO certified products. I figured that mistakes could happen, and could not imagine anything else I'd eaten that day could be a culprit (had only eaten veggies/rice/meat) so I contacted them to report it. Their response made me quite sure that the lot my food came from was fine from a legal/GFCO gluten-free perspective, but revealed that they make all their gluten-free products on the same line - which include granolas, oat flour etc. When I investigated it a bit more, I realized that many of the gluten-free products that I suspected were causing me problems (but had no real basis for why) were all made by companies that also make lots of gluten-free oat products. Previously, I had only avoided gluten-free products that contained oats as an explicit ingredient, and had never considered that the residues from gluten-free oats could be problematic. Unfortunately, now that gluten-free oats have been legalized in Canada, it is very difficult to find companies that do not use them in some capacity, which is why I axed most of the processed gluten-free stuff. Presumably, because the oats are considered gluten-free, there is no reason to clean the line or employ any allergen food safety practices from the company's perspective. While this may not be a concern outside of those who are super sensitive, it might worth considering if you are still having problems or have a known issue with oats. At the very least, avoiding most processed gluten-free foods (breads/flours/pastas/baked goods) seems to have helped me a lot, even if minor contamination with oats is not the true culprit. I would vouch for mostly sticking with rice, dry beans, root veggies and fresh corn (from the cob) as complex carbohydrate sources for a bit, even though it's a bit inconvenient.   
    • So I previously went to Buffalo Wild Wings and they gave me the gluten-free menu. I asked the waitress if anything is mixed into the fryers somehow with the ultimate nachos, since I read up that they don't switch out fryers for celiac customers, which is fine. She claimed there's no cross contamination happening there, as nothing goes in the fryers. I went back today to find out by the manager that they apparently deep-fry their corn tortilla chips from scratch, so I cancelled my order. But after rethinking, I asked if I could order everything except for the tortilla chips. She came back and told me there's yeast in one of the sauces for the nachos. Yeast is a toss-up, but it seemed to me like they were trying to get me to not order. Either BWW's is lying about their gluten-free menu, or the management was doing everything in their power to prevent me from eating there in order to not have a potential lawsuit. Has anyone felt this way when going to restaurants?
  • Upcoming Events