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The last few times I've had a break out of this stuff that I believe to be DH, I had to get a cortisone shot to get rid of it. Does anything heal it? nothing else seems to be working and I don't have the $$ for another shot.

any advice is greatly appreciated!!

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Have you checked all your toiletries and cosmetics for gluten? You need to figure out where the gluten is sneaking in. The only real 'cure' for DH is being really strict with the diet. Whenever you get any gluten it will reactivate the antibodies in the skin and it takes a long time for those antibodies to go away. I have been gluten-free now for 8 years, the first couple years a DH outbreak was one of the first signs I had been glutened but after that, once the antibodies had decreased the outbreaks started coming later in the glutening and now when I get glutened I only get at most one or two small sores that heal quickly. Unfortunately there are no real home remedies other than being strict with the diet.

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I would also love to know if there is anything you can do at home to ease the rash once you've had an outbreak!

I was diagnosed about five and a half months ago, and it seems like no matter how hard I try, I keep getting very painful outbreaks. I've done my best to eliminate gluten from my diet, as well as all my personal care products, but nothing seems to work completely. I'm afraid of going on Dapsone, as I'm already anemic and have read quite a few horror stories about the side effects.

Is there anything else we can do?

I would truly appreciate any help. (At this point, I'm getting a little desperate!)

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I would also love to know if there is anything you can do at home to ease the rash once you've had an outbreak!

I was diagnosed about five and a half months ago, and it seems like no matter how hard I try, I keep getting very painful outbreaks. I've done my best to eliminate gluten from my diet, as well as all my personal care products, but nothing seems to work completely. I'm afraid of going on Dapsone, as I'm already anemic and have read quite a few horror stories about the side effects.

Is there anything else we can do?

I would truly appreciate any help. (At this point, I'm getting a little desperate!)

Are you going with a pretty much whole unprocessed diet? Have you checked all meds and supplements? Meds need to be checked at each refill if they are generic and supplements can be labeled gluten-free even if they have wheat or barley grass. Do you have a significant other that eats or drinks gluten items? If you do have them throughly brush their teeth before any kissing. Do you consume distilled gluten grains in alcohol or vinegar? If you do drop them for a bit and see if it helps. Most of us will not react to them but some of us do. It takes a long time for the antibodies to leave the skin and new outbreaks are telling you that something is getting you somewhere.

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Are you going with a pretty much whole unprocessed diet? Have you checked all meds and supplements? Meds need to be checked at each refill if they are generic and supplements can be labeled gluten-free even if they have wheat or barley grass. Do you have a significant other that eats or drinks gluten items? If you do have them throughly brush their teeth before any kissing. Do you consume distilled gluten grains in alcohol or vinegar? If you do drop them for a bit and see if it helps. Most of us will not react to them but some of us do. It takes a long time for the antibodies to leave the skin and new outbreaks are telling you that something is getting you somewhere.

Thank you for your help!

I agree: With new outbreaks, I have to be getting glutened by something. Things seemed to be clearing up (I had a huge outbreak on my face from Christmastime), but just last week, I had an outbreak covering my whole body. :( I was so close! Anyway, to finally figure out what I'm doing wrong, I started a dairy- and egg-free, unprocessed diet. (As far as I know, I don't have a problem with dairy and egg, but I read that you can have other sensitivities you didn't realize that make the healing process harder.) I have also completely eliminated iodine. Basically, all I'm eating is brown rice cooked with water, fruits, vegetables, and almonds and walnuts, which according to their packages were processed in a gluten-free facility.

I don't take any medications, and I switched all my vitamins/supplements to Country Life brand, as the entire line is certified gluten-free by the GFCO. I didn't know these things could be labeled gluten-free and still contain wheat or barley grass?! Isn't that infuriating!

I don't have a significant other, don't drink, and with this new diet, no longer have vinegar. I really hope this elimination diet helps because I love food (and absolutely hate it) and these rashes are so itchy and painful. I'm losing my mind!

Is there any way the heal the rashes faster once you get them? They take so long to go away!

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I would also love to know if there is anything you can do at home to ease the rash once you've had an outbreak!

I was diagnosed about five and a half months ago, and it seems like no matter how hard I try, I keep getting very painful outbreaks. I've done my best to eliminate gluten from my diet, as well as all my personal care products, but nothing seems to work completely. I'm afraid of going on Dapsone, as I'm already anemic and have read quite a few horror stories about the side effects.

Is there anything else we can do?

I would truly appreciate any help. (At this point, I'm getting a little desperate!)

I like Weleda Calendula Baby cream and band-aids to prevent picking and help healing. It took my body awhile to become healthy and for my skin to truly improve even after I stopped eating gluten. Lowering refined sugar and increasing whole foods has made a huge difference in my skin. Gluten is in so much that I try to cook everything I eat and avoid restaurants. I try to cook with real garlic and onions and am very careful about flavor/spice mixes. I know you're tired with the anemia but the more you work at cooking and eating pure food the stronger you'll get. I only use honey as a sweetener. If there is any question in your mind as to whether something has gluten I suggest you just avoid it.

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the Dh which i've been suffering from for years finally got better recently when I cut out dairy from my diet. apparantly just a little in my tea was enough to keep it going. Also I was drinking an Amazake rice beverage that says gluten-free, but I found out that xantham gum, which is an ingrediant, is pretty much corn syrup. I cut this out and my Dh is at least 50% better, and as far as itchiness, is even more improved. i really thought that it would never get better. I have been gluten-free for @ 3 years, and my Dh was getting worse the last 6 months or so. Goes to show that you can't be too vigilant when it comes to making sure you don't get exposed AT ALL. I'm feeling really encouraged that it will continue to get better, Dh has really been making my life miserable for so long. I'm so glad to discover this forum, and to learn that there is help and support out there when i've been alone with all these problems and obstacles for so long. If you are doing any dairy, try going without it and see what happens.

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Most of the papers I've read in regards to how soon the gluten free diet has it's major effect on the presence and severity of DH start at the 6-12 months mark. Keep in mind it has to do with your immune systems reaction and if left alone is quite slow to clear up. Since this is an IgA reaction additional food allergies could potentially exacerbate it as well.

I have aloe vera plants in my yard that I gel every few days and it helps a little with the itching. I would not recommend the store bought aloe vera for this cause I have heard the urea in it can just aggravate this particular itching.

(Writing this at 3 in the morning because my DH is itching like hell and I refuse to go on Dapsone)

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Thank you so much for all of your help!

I'm finally starting to feel better after having my worst outbreak ever. (I accidentally ingested a little gluten, and boy, did I pay for it! Don't you just hate it when you know you've messed up, and there is nothing you can do except wait to see how bad the rash is going to be. Ugh)

I will definitely go get some Weleda Calendula Baby Cream and an aloe plant. (I'm not sure why, but I get welts whenever I use band-aids now.)

WheatChef, I know the itching is completely miserable, but know that you are not alone!

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I don't have DH myself. But I do take DPP-IV (DPP-4) if I think I may get some gluten somehow. DPP-IV helps break down the gliaden protein. There is another enzyme called AN-PEP that I haven't tried. AN-PEP is supposed to work better in combination with DPP-IV.

Anyway, I don't know if these enzymes would help with DH symptoms or prevent outbreaks.

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I find the herb sasparillo works well to ease the skin itch as this is a skin and blood cleanser. I use pawpaw ointment and calendula to treat my skin where it itches. For general skin dryness I use an olive oil base with jojoba oil. For hair wash I use henna wax conditioner and johnsons ph balanced body wash, deodorant a tea tree derivative as I tend to react to most normal toiletries. Overall best though is gluten avoidance to improve my skin.I avoid using any steroid based ointments given the long term effects.

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Interesting about urea being aggravating - it is in a lot of lotions for dry skin.

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The last few times I've had a break out of this stuff that I believe to be DH, I had to get a cortisone shot to get rid of it. Does anything heal it? nothing else seems to be working and I don't have the $$ for another shot.

any advice is greatly appreciated!!

I WAS JUST DIAGNOSED WITH THE DREADED (GLUTON) CILIAC DESEASE...AFTER GOING TO THE DOC WITH THIS CRAZY RASH.THE DOC WANTED ME TO TAKE A NASTY DRUG THAT MADE ME VERY SICK..SO I STOPPED IT AFTER 1 PILL.IAM DOING WELL ON THE DIET CHANGE.BUT BEING ALSO DIAGNOSED WITH IC ...I HAVE A DOUBLE WAMMY.AS FAR AS THE RASH...I HAVE SOME CREAM...BUT I FIND NOXEMA MEDICATED CREAM HELPS WITH THE ITCH.IAM PRAying for total deliverance from this nasty stuff.FUNNY HOW LIFE GO'S..IVE PROBABLY HAD THIS CONDITION ALL MY LIFE AND @ 60 YEARS OLD WE FIND IT ..THE BATTLE RAGES ON ...KEEP LOOKING UP! RC

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I would also love to know if there is anything you can do at home to ease the rash once you've had an outbreak!

I was diagnosed about five and a half months ago, and it seems like no matter how hard I try, I keep getting very painful outbreaks. I've done my best to eliminate gluten from my diet, as well as all my personal care products, but nothing seems to work completely. I'm afraid of going on Dapsone, as I'm already anemic and have read quite a few horror stories about the side effects.

Is there anything else we can do?

I would truly appreciate any help. (At this point, I'm getting a little desperate!)

I TRIED DAPSONE ...ONE PILL...I HAD A HEADACH FOR 36 HOURS ,UNABLE TO CONSENTRATE,BLURED VISION, STOMACK ACK... BAD STUFF....AND THE BLOOD TEST SHOWED I COULD TAKE IT ...NO THANKX..I HAVE FOUND NOXEMA MEDICATED HELPS WITH THE ITCH.RC

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    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
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