My World Just Crashed Again

[Guest JlazyH]

Ok, so I have a rash mostly on my butt that I have had for a year or better. All of a sudden it starts spreading, itching and just plane looks bad. I head for the doctor, he takes one look at it and says, "Do you mind if I have the other doctors here see this?" He new wright away what it was from their doctor books but had never seen it up close and personal. Yea you got it. It is Celiac Spru Dermitideus (spelling) Not really all that common but your's truley managed to get it. It now is spreading like crazy, oh boy. It can't be stopped and I just pray I don't get this crap on my face. The doc set me up with a steroid cream, Fluocinonide. It helps the itching but wont stop the problem. Oh Boy again. Just wondering if anyone else was luckey or unlucky enough to have this little kicker to go with your already Celiac problem. I would love to hear that someone has had it and found a way to stop it.

My Best, Jess

[frenchiemama]

I have dermatitis herpetiformis and when I'm breaking out I take 500mg of tetracylcine and 500mg of B3 twice daily. My skin stays pretty clear now though, but it took around 5 or 6 months of being gluten-free. I also use clobesetal (sp?) ointment.

[teebs in WV]

I have it too and am on Dapsone - it is an oral antibiotic that really helps, but has some potential side effects. It cleared it up - about 85% - within 48 hours. I don't using anything topical except for regular skin lotion. I was diagnosed with this first - before the celiac. That is how I found out that I had it - I didn't really have much problems with the GI issues before.

[tarnalberry]

Besides making sure you're gluten-free, also - for now - reduce the amount of iodine in your diet. It is required to produce the deposits that cause DH, so getting rid of it for a while can help. (You can reintroduce after a number of months if you maintain the gluten-free diet.)

[lovegrov]

You need dapsone until you are completely gluten-free for a number of months. Also reduce iodine during that time. If you remain strictly gluten-free, the DH will go away and you won't need the dapsone.

richard

[CeliaCruz]

I head for the doctor, he takes one look at it and says, "Do you mind if I have the other doctors here see this?" He new wright away what it was from their doctor books but had never seen it up close and personal.

Oh, doncha just LOVE it when the doctor says "Do you mind if I have the other doctors here see this?" I just feel special all over...like a leper with my own hit sitcom!

But seriously, now that the rash is more or less under control, I'd try to get yourself a good dermatologist. He or she will probably prescribe you a non-steroid cream like Protopic or Elidel which are good things to use on a daily basis. Steroids like Fluocinonide are great for clearing up a nasty rash, but ultimately you don't want to use them regularly if the dermatitis keeps coming back. Hopefully -- as everyone else has pointed out -- the gluten-free diet will clear everything up, but I've been gluten-free (and carefully so) for three months now and I still break out from time to time. Good luck!

[debmidge]

While I do not have any input on remedies, I have to say my thanks to you for letting the other doctors take a look at the DH. On a positive spin, it gives at least those physicians the knowledge of what DH looks like and maybe in your way you'll be helping another celiac who sees these physicians get a proper diagnosis as now they know what they are looking at.

[Guest JlazyH]

Bless you all for the input and help. I have been gluten-free for almost a year now and very strong about the diet. I have come in the last year from 170 lbs to 124 lbs and I am now up to 132, and very happy with the gain. I guess I am just "pissed" (sorry) that it just dosen't stop. Wasn't going to vent here, but you all are better than family as you go through the same thing. The other deal I am going through at this point is,I get to have my back re broken and rods from my butt to my neck installed. I again cannot wait for the gluten-free diet the hospital comes up with. Then try to have them understand to use patches, tape, and bandages that don't have a wheat base. I feel like I'm just seconds away from becoming a cartoon character.

Ok, I'm done with the pitty party I have going for some reason. My life really is good, as I have a new day every time I wake up. The best wife for 38 years, and 3 beautyful grand kids. There is so much to enjoy.

Jess

[CeliaCruz]

While I do not have any input on remedies, I have to say my thanks to you for letting the other doctors take a look at the DH. On a positive spin, it gives at least those physicians the knowledge of what DH looks like and maybe in your way you'll be helping another celiac who sees these physicians get a proper diagnosis as now they know what they are looking at.

That's a really nice thought. I often get frustrated at having to be the one to educate the doctor on what Celiac is. I mean, they're the ones who went to medical school and making the big bucks, shouldn't they be telling ME what I should do? But, like it or not, there is so little awareness of this disease and therefore it comes down to us to spread the word. If not, who else is going to do it? Right? At the very least, if we can all go to our physicians and be open about our status as Celiacs, they might actually start doing some research on the subject, talk amongst themselves about it and start treating the disease in a more capable way. Future generations will benefit...

Hey, JLazy, I'm curious. Did that doctor know you were Celiac before he diagnosed your rash as Celiac Sprue Dermatitis or was the "Celiac" aspect of the rash evident from the way it looked? If it's the latter, I'm impressed with that doctor.

[Guest JlazyH]

That's a really nice thought. I often get frustrated at having to be the one to educate the doctor on what Celiac is. I mean, they're the ones who went to medical school and making the big bucks, shouldn't they be telling ME what I should do? But, like it or not, there is so little awareness of this disease and therefore it comes down to us to spread the word. If not, who else is going to do it? Right? At the very least, if we can all go to our physicians and be open about our status as Celiacs, they might actually start doing some research on the subject, talk amongst themselves about it and start treating the disease in a more capable way. Future generations will benefit...

Hey, JLazy, I'm curious. Did that doctor know you were Celiac before he diagnosed your rash as Celiac Sprue Dermatitis or was the "Celiac" aspect of the rash evident from the way it looked? If it's the latter, I'm impressed with that doctor.

No he already new I had Celiac.

[teebs in WV]

I guess I was VERY lucky - my GP sent me to a dermatologist for the ugly, ugly, excrutiatingly itchy, burning, rash (did I say ugly?). Of course that was only after treating me for various other skin conditions (including scabies! That was a fun time......terrible lotion with potential terrible side effects, disinfecting the entire house, plus the embarrassment.)

The derm took one look at me and said he was 95% sure that I had DH (which is unbelievable now that I think about it! I live in a pretty rural area and the drs haven't seen a wide-variety of illnesses.) He did bloodwork (IGA?) and a biopsy of my arm and 2 weeks later confirmed via both tests that I had DH and therefore celiac disease.

My GP couldn't believe that was what was wrong with me - even after the conclusive bloodwork and skin biopsy! So, he sent me to a GI spec. for endoscopy. (That was only because he was concerned about my liver count, enlarged spleen, and enlarged abdominal lymph nodes!) Anyway, the GI confirmed it through the intestinal biopsy and my GP is acting really weird. I'm not going to get into that right now.

But like I said at the beginning of this ramble - I really am lucky. I only suffered with the rash for 4 months before being diagnosed. I have read horror stories of people suffering with it for years before being diagnosed. Plus, you have to admit - this is not the worst thing that could happen - there are other diseases that are much worse!

[floridanative]

I was dx'd today via biopsy. I also have a rash that I was told was dermatitus something or other but not herpetiformis. Now I feel sure it's actually DH which is only possible with sprue. Anyway, I've had the rash for about four years now. I have a wonderful rx compound cream (pharm. has to mix it up) called Duracream. It is fabulous and I hope now that I'll be gluten-free, maybe the rash will go away altogether. Time will tell I guess. The cream works wonders if you apply it every day.

[cindyann]

I did a Google search for duracream and it comes up as a vet product for cows. Any idea of the ingredients in the compound your pharmacist makes? Thanks for any info. I am undiagnosed DH but have had a rash since 1995 altho it's better now than ever after 1 year gluten-free. The derm did a biopsy in 1998 but was not positive.

[floridanative]

I'll see if I can get the ingredients from the pharm. this week. I know my doc literally has her asst. hand write all the stuff down and it must be like ten things that go in it.

[floridanative]

Sorry - my pharmacist won't fax the ingredients of my cream - said to call the dr. I had to leave a message with the nurse. She will probably call back next Friday (7 days on average for non emergencies). So anyway, I see now that on my jar is doesn't say Duracream anyway - don't know why because that is what my doctor calls it. So here is it: Eurax/Betamethasone CRM. Hopefully your dr. can give you the rx by that. Keep in mind that some pharmacies will not make compound drugs for you just so you know but you should be able to find one that will. Last order for me took a couple of days before they could get one ingredient in. However, I have no idea if it's gluten free. My rash biopsy was a few letters off from the Celiac DH. Now that I have seen a photo that looks like my tush before treatment, I'm sure I do have the DH only Celiacs get. This cream works great as long as you use it every day. If I skip it by mistake, my rash gets worse within 24 hours.

[teebs in WV]

I have been prescribed betamethasone ointment before (years ago - before dx). If I recall correctly, it is a type of corticosteroid (sp?) ....... but don't quote me on that.

[chrissy]

yep, betamethasone is a steroid cream. i have used it for 30+ years on my atopic dermatitis. i use betamethasone valerate -----brand name is valisone. i don't know how it would work for DH, but it works wonderfully for my atopic dermatitis.

christine

[Pegster]

I was given that in ointment form for my DH before my biopsies. It calmed down the rash, but wasn't a cure.

[floridanative]

I'm wondering if any of you know if the following creams for dermatitus are gluten free. I use a compound cream as stated above but with all I've been going through since my dx I stopped using the cream as I haven't had time to call the manufacturers of the two creams that are mixed to make one. Finally I started the process yesterday - Bristol-Meyers Squib (maker of Eurax cream 10%) verified that it is gluten free. But today Alpharma-NMC (maker of Betamethasone dipropionate cream 0.05%) stated point blank that they can not verify the gluten status of their creams as they do not test for it. While I know that this does not mean it contains gluten, I don't see how I can still use it unless someone here tells me they were able to verify it was gluten free in the past. For certain, over the past four years the cream controls the rash but doesn't get rid of it. Any ideas as to it's gluten free status? Thanks in advance if you know anything you can share.

[Fiddle-Faddle]

Hi, I'm not 100% sure that what I had was DH. It was, as one of you said so well, UGLY, raised, red, severely itchy-burny, and yes it looked like it was oozing with honey. But it was all over both arms (and very symmetrical). My doctor said it was just plain contact dermatitis--but there was not a GD thing that my arms were exposed to and the rest of my body wasn't! The dermatologist just sneered at the idea of DH--he said it is NEVER all over the arms like that.

He put me on prednisone for 10 days. On the 3rd day, I saw pictures on the internet that looked just like my rash, so I stopped eating gluten. By the 5th or 6th day, the rash started to fade, but it started to come back twice (but mildly), once when I ate a bowl of oatmeal (I didn't know!) , and once when I made tacos and ate taco chips.

I noticed that by going gluten-free, I dropped 10 pounds, my face doesn't look as puffy, and the mild but frequent gassy, crampy tummy is gone! Even if that rash had nothing to do with gluten, I'm glad I went off gluten! And today, FINALLY (after a month off gluten) I stopped craving bread. I plan to wait another month or so, and then try reintroducing gluten and seeing what happens.

The two times the rash came back, I tried Gold Bond medicated lotion and half-doses of Benadryl. I don't know if that was what worked, or if staying gluten-free (except for the mistakes) was what worked. The Benadryl certainly helped the itchy-burny part of it.

Sorry I don't have a better answer for you. I'm sending lots of sympathy your way, hope it helps!