Pictures Of My Rash

[Sam81]

Quick background to this is I was diagnosed with bechets at 16 at put on dapsone tablets - 50-100mg daily. Left to manage it on my own. I stopped taking it 2 years ago when I was pregnant and havent taken it since due to breastfeeding. Slowly symptoms of my body/stomach not liking something have come along and I also get this rash when I eat certain things. Im tired, irritable, constant stomach aches/pain, migraines, urgency for toilet and messy when I go, dizziness and bad memory. Dr's so far have put most of these symptoms down to stress and having children. But I feel different, my head is always foggy and I hate this anger that comes from no where. Rash has been treated over the years as Psoriasis, impetigo and one dr said it was because i must of left mess on me when I'd been to the toilet! Dr has done "celiac Blood test" which he says is negative but refuses to give me the actual result. From what I can tell he has only tested the "Anti-tissue Transglutonase" level? So here are some pictures of the rash I get on my face (purple marks that can be itchy but usually painfull and take months to go), bottom - (intensely itchy and burning - note the scratch marks!) and legs - these look more like hives I think. I havent included all the pictures of the rash on my beind as it's very embarassing - just imagine the last 2 pictures all over!! Everything else seems mild at the moment.

Any opinions, thoughts etc are welcome. Ive just had a colonoscopy (as Dr wants to do the cheapest procedure first) and it was clear. I have a dermatology app in 3 weeks and am seeing stomach people for first time in October.

[Skylark]

I don't know about your skin. Your face looks sort of like my rosacea but I only get it on my face and not anywhere elase. I Googled Behcet's disease because I'd never heard of it and came up with this article saying it can be related to food allergies.

Open Original Shared Link

A colonoscopy is useless for diagnosing celiac disease. The celiac damage is in the small intestine and the only way to find it is endoscopy with a biopsy. Even if your Dr. is looking in the right place (rather than up your butt) there is a fair chance of the biopsy missing patchy damage.

Your symptoms could certainly be due to gluten. You need to get the labs and find out if you had a proper celiac screen. I suspect not if your Dr. told you that a colonoscopy could diagnose celiac. If you are in the US, you have a legal right to get a copy of your labs. Next time you are at the office bring them a copy of HIPAA and tell them that you know your rights and refuse to leave without a xerox of your lab slip. Open Original Shared Link

If I were you, I'd keep eating gluten until you see the stomach Dr. and ask for celiac testing. None of the tests work if you've gone gluten-free. If you are negative it's fine to go ahead and try the diet after that.

[rosetapper23]

I hope you don't mind if I imply that your doctor is an idiot....but I'm afraid he's got to go! He clearly does NOT understand celiac disease or dermatitis herpetiformis. With all of your symptoms you're experiencing, you should have been referred to a gastroenterologist and dermatologist immediately. If your dermatologist decides to do a biopsy of your rash, you'll be lucky if you have one that is educated enough to know that the lesions themselves should NOT be biopsied (or else the biopsied tissues will test negative); rather, the clear skin right next to a lesion should be biopsied. I would recommend that you call ahead to the dermatologist and ask if he/she has experience biopsying for DH; if not, cancel and reschedule the appointment with a dermatologist who does. Either way, do a search on celiac.com for articles on the proper procedure for biopsying DH and bring them with you in case your dermatologist is clueless about how to properly perform the biopsy.

Since Dapsone is used to control DH, it makes sense that it would appear after you've stopped taking the drug. However, eating a strict, gluten-free diet will take care of the problem, too. Your doctor probably ordered only one bloodtest for celiac when there are four available. He should have ordered a minimum of two of those tests. It's quite possible that he doesn't know how to interpret the results either. Even if he was trying to save money, he should have opted for an endoscopy rather than a colonoscopy with suspected celiac, because a colonoscopy is useless when it comes to celiac. However, he may not have the skill to perform an endoscopy or interpret the results accurately.

I'm so sorry that you're suffering at the hands of an incompetent, inflexible doctor. Hopefully, you'll have answers soon. In the interim, please read up on celiac as much as possible and consider going gluten free even if your tests come back negative. People who have DH oftentimes test negative on both blood tests and biopsies. Also, be aware that if your dermatologist does biopsies that come back positive for DH, there is no reason for further testing for celiac--you definitely have it. You won't need to spend money on an endoscopy unless you want to know how much damage has been done. Again, though, celiacs who have DH oftentimes have patchy sections of villi destruction that can be missed.

Good luck to you!

[Sam81]

I hope you don't mind if I imply that your doctor is an idiot....but I'm afraid he's got to go! He clearly does NOT understand celiac disease or dermatitis herpetiformis. With all of your symptoms you're experiencing, you should have been referred to a gastroenterologist and dermatologist immediately. If your dermatologist decides to do a biopsy of your rash, you'll be lucky if you have one that is educated enough to know that the lesions themselves should NOT be biopsied (or else the biopsied tissues will test negative); rather, the clear skin right next to a lesion should be biopsied. I would recommend that you call ahead to the dermatologist and ask if he/she has experience biopsying for DH; if not, cancel and reschedule the appointment with a dermatologist who does. Either way, do a search on celiac.com for articles on the proper procedure for biopsying DH and bring them with you in case your dermatologist is clueless about how to properly perform the biopsy.

Since Dapsone is used to control DH, it makes sense that it would appear after you've stopped taking the drug. However, eating a strict, gluten-free diet will take care of the problem, too. Your doctor probably ordered only one bloodtest for celiac when there are four available. He should have ordered a minimum of two of those tests. It's quite possible that he doesn't know how to interpret the results either. Even if he was trying to save money, he should have opted for an endoscopy rather than a colonoscopy with suspected celiac, because a colonoscopy is useless when it comes to celiac. However, he may not have the skill to perform an endoscopy or interpret the results accurately.

I'm so sorry that you're suffering at the hands of an incompetent, inflexible doctor. Hopefully, you'll have answers soon. In the interim, please read up on celiac as much as possible and consider going gluten free even if your tests come back negative. People who have DH oftentimes test negative on both blood tests and biopsies. Also, be aware that if your dermatologist does biopsies that come back positive for DH, there is no reason for further testing for celiac--you definitely have it. You won't need to spend money on an endoscopy unless you want to know how much damage has been done. Again, though, celiacs who have DH oftentimes have patchy sections of villi destruction that can be missed.

Good luck to you!

Thank you! That's the first time I've chuckled in a long time! Yes my Dr is dopey. Im in the UK and we have the National Health Service so it works slightly differently. I will call ahead to the dermatologist but I suspect it wont get me anywhere! Can anyone tell me if all DH sufferers have to remove/manage iodine? In the UK if you're not diagnosed you're on your own...

[Sam81]

I don't know about your skin. Your face looks sort of like my rosacea but I only get it on my face and not anywhere elase. I Googled Behcet's disease because I'd never heard of it and came up with this article saying it can be related to food allergies.

Open Original Shared Link

A colonoscopy is useless for diagnosing celiac disease. The celiac damage is in the small intestine and the only way to find it is endoscopy with a biopsy. Even if your Dr. is looking in the right place (rather than up your butt) there is a fair chance of the biopsy missing patchy damage.

Your symptoms could certainly be due to gluten. You need to get the labs and find out if you had a proper celiac screen. I suspect not if your Dr. told you that a colonoscopy could diagnose celiac. If you are in the US, you have a legal right to get a copy of your labs. Next time you are at the office bring them a copy of HIPAA and tell them that you know your rights and refuse to leave without a xerox of your lab slip. Open Original Shared Link

If I were you, I'd keep eating gluten until you see the stomach Dr. and ask for celiac testing. None of the tests work if you've gone gluten-free. If you are negative it's fine to go ahead and try the diet after that.

Im in the UK, but thank you... very interesting...

[Hopeful1950]

Hi, your pictures look the same as my DH rash. Does it itch alot? For most people, the DH rash is intensely itchy.

[Sam81]

Hi, your pictures look the same as my DH rash. Does it itch alot? For most people, the DH rash is intensely itchy.

Massively itchy, specially the one on buttocks... I end up in a bad way with that one... Dou you mind me asking if you've been diagnosed?

[Hopeful1950]

Massively itchy, specially the one on buttocks... I end up in a bad way with that one... Dou you mind me asking if you've been diagnosed?

Dermatologists (3) were stumped. Called it "stress eczema". One biopsied, but was not looking for DH. Finally ended up at an allergist (after 8 years of suffering) and he tested me to see if I had food or contact allergies. All tests negative. He thought it looked like DH, so he ordered a blood test for celiac. It was negative which is not unusual for people with DH. I then went on-line and did a test with EnteroLab where you send off a stool sample. It came back positive that I was reacting to gluten. They also ran a test for celiac genes and I have two. Took these results back to the allergist and he said it was conclusive enough for him. I went gluten-free. I have never had the skin biopsy repeated because I just can't deal with the dermatologists. They just don't seem to want to listen.

My behind rash was the worst! So uncomfortable to be sitting on your itchy bits! Going gluten free really helped with the itching. It is taking longer to stop blistering and for the older lesions to completely heal. I can really tell when I have been glutened or have consumed iodine because that awful itching starts. It will keep me awake all night long.

Good luck with your testing.

[rosetapper23]

Sam81,

You'll be lucky to find any literature stating that iodine and gluten cause DH. The only place I've ever read about the connection is in Dr. Peter Green's book "Celiac Disease: The Hidden Epidemic." I don't believe there have been any studies on this--DH appears to attract no attention from researchers. It is still such a new type of diagnosis, doctors (and that includes dermatologists) are pretty unaware of the condition. You might try eliminating both iodine and gluten for a while and then try adding iodine back into your diet after the lesions have healed. If they blister up again, you'll have your answer about whether or not you can tolerate iodine. I'm so sensitive to iodine that because I have to take a thyroid medication now, which contains iodine, I have a chronic rash across the top of my back and on my "nether-feathers." If I eat something high in iodine, I immediately suffer an asthma attack, and if iodine comes in contact with my skin, it blisters up and the muscles under the skin feel as though they've been beaten with a bat. I had surgery last year, and the surgical team accidentally used iodine to clean up my skin--and the reaction almost killed me. My blood pressure crashed, I had a head-to-toe rash, and scalded-skin syndrome for nearly a month afterward--all my skin peeled off in sheets, including the skin in my armpits (ouch!!!).

So....you might wish to do some experimenting with regard to iodine. That and gluten have cursed my life...but things are better than they used to be, since now I know what to avoid.

[eatmeat4good]

Oh my god that is exactly what my DH looked like...the chin rash looks just exactly like mine did when it first started on my face. Those little blisters got ever larger as it continued to react on the edges...and itch and burn...until I had scratched excoriations in my skin. It moved to my forehead. (mine went on for 7 years) I had the leg rash that looked like hives too. Just exactly like yours. Only they got larger too and eventually started weeping and oozing. I don't have any advice about testing. It apparently didn't look enough like DH to warrant a dermatologist testing it in my case...It was called ringworm fungus on my leg, and acne, impetigo or neurotic excoriation on my face. I was never diagnosed by a Dr. but both of your rashes are same as the two kinds of rash I got before it turned much worse and deeply scarred my chin and forehead. My leg is fine and scar free. What's up with that? I had it way too long and only found Celiac a year ago....all the leg rash is gone and I only have 4 small sores on my face and they never really flare unless I get gluten. Takes forever to heal...but I'll bet gluten is your answer. That is really weird the hive-like ring...but that is what I had too....only on my leg. I cannot believe that. I've never seen pictures that looked exactly like my DH...but I know that is what it was because it responded so well to the gluten free diet...albeit slowly. I encourage you to try for a diagnosis...but don't mess around with gluten for too long...really. If you can't get diagnosed...you can go gluten free on your own. It isn't ideal...but sometimes it's the only way. I feel for you...I'm so glad you posted the pictures....for other's trying to figure it out...and because I have what you have....and if it ain't gluten...then I'd like to know what it is!

[lovegrov]

It's very hard to tell by pictures alone, but my DH did not look like that.

richard

[Sam81]

Thanks guys. Its a real "limbo thing" in that it seems to vary from person to person but it's helpful to have people with Celiac DH saying it looks similar. I don't understand why it seems ok for Dr's to think I have such a rare condition as Behcets (very rare for my ethnicity) but it's so hard to believe I may have DH, but they both have same medication - go figure.

I will go alone if no diagnosis although I worry about one of my children in particular and also worry about how to deal with the iodine side - is that removing all salt?? How do you know if Iodine is present??

[Flasaltwater]

Wow this looks

a little like my rash after I accidentally break the little blister they scab over by end up turning a purplish brown then after time goes by I am left with pupleish scars and lots of white spots where the scar use to be mine almost always have liquid in them I would not be ingesting any wheat or gluten see if your rash gets better that looks terribly itchy. HUGGS

[Sam81]

Wow this looks

a little like my rash after I accidentally break the little blister they scab over by end up turning a purplish brown then after time goes by I am left with pupleish scars and lots of white spots where the scar use to be mine almost always have liquid in them I would not be ingesting any wheat or gluten see if your rash gets better that looks terribly itchy. HUGGS

Oh it's driving me INSANE...........

[eatmeat4good]

In the US salt is labeled iodized...if it is iodized. There is also salt that is not iodized and it is sold right next to the iodized salt. The salt that is not iodized says this salt does not provide iodide, a necessary nutrient...or something like that. I don't know what you have overseas...but it would pay to find out.

There was another poster from overseas who wrote that the US puts way more iodine in their iodized salt than they do anywhere else. I don't know whether it is true or not...just thought I would mention it...but remember the foods that are high in iodine and limit them. You only need a tiny amount of iodine to stay healthy. Yes, we do not want to cause a deficiency, but we also do not want the antibodies to keep reacting to iodine...because then it will appear that gluten is not the answer....ya know?

It would be really nice if you could say what you said about Bechets to your Dr.'s. DH is thought to be rare too, but what if they could just do a biopsy for you? The fact that it responded to Dapsone is indicative of DH to some Dr.'s. But...I've never found any of them.

If they sell any type of Benzocaine product over the counter where you are, and if you tolerate it, it does provide relief albeit temporary. I stopped scarring myself when I found it.

I wish you the best of luck with the Dr.'s and I hope you post regarding your progress, as I am very interested in what you find to be true for you. Hugs...and congratulations for finding this site...smart girl! I was a bit slower in finding this goldmine than you were!

[rosetapper23]

Just want to add that while you're trying to get the DH to go away, you should avoid ALL salty gluten-free processed foods because the packages never say whether or not a product's salt contains iodine. That's true here in the U.S., and it may be true there. I'm sure you'll be able to find non-iodized regular salt for your cooking needs, though. Iodine is added to salt and other products here because the government thinks we're not getting enough. This is a joke because a lot of the dairy and vegetables in our country (and Canada) became contaminated with high amounts of iodine after the U.S. experimented with nuclear bombs in the 50s in one of our western states. The radiation dissipated quickly, but the iodine they used was absorbed by the soil in the mid-Western and Western states of the US and in parts of Canada, causing iodine contamination in our foods. For a while, Canada ran a bulletin that the dairy in their country was so high in iodine, it wasn't safe for children to drink the milk. This isn't common knowledge, but the government was required to run a public notice of this occurrence about 15 years ago...and I happened to see it...so, finally, the mystery of how the iodine got into our dairy and vegetables was solved. A geologist friend of mine told me that once iodine is introduced to soil, it's there forever and becomes part of the food chain.

[pricklypear1971]

Some of your rashes look like mine, ESPECIALLY when I was using corticosteroids. Now that I'm off, they are more typically DH.

I have Hasimotos, have responded very well to gluten-free diet, and am supposed to have my rash biopsied in about a week-if there's one there. I've decided not to purposely gluten myself. I enjoy LIVING.

I also think I'm sensitive to salicylates: red dyes and preservatives also seem to set it off - I ate Riceworks chips and all heck broke loose.

Now that I'm gluten-free and off corticosteroids my rash WILL heal, if I don't gluten myself.

[Sam81]

In the US salt is labeled iodized...if it is iodized. There is also salt that is not iodized and it is sold right next to the iodized salt. The salt that is not iodized says this salt does not provide iodide, a necessary nutrient...or something like that. I don't know what you have overseas...but it would pay to find out.

There was another poster from overseas who wrote that the US puts way more iodine in their iodized salt than they do anywhere else. I don't know whether it is true or not...just thought I would mention it...but remember the foods that are high in iodine and limit them. You only need a tiny amount of iodine to stay healthy. Yes, we do not want to cause a deficiency, but we also do not want the antibodies to keep reacting to iodine...because then it will appear that gluten is not the answer....ya know?

It would be really nice if you could say what you said about Bechets to your Dr.'s. DH is thought to be rare too, but what if they could just do a biopsy for you? The fact that it responded to Dapsone is indicative of DH to some Dr.'s. But...I've never found any of them.

If they sell any type of Benzocaine product over the counter where you are, and if you tolerate it, it does provide relief albeit temporary. I stopped scarring myself when I found it.

I wish you the best of luck with the Dr.'s and I hope you post regarding your progress, as I am very interested in what you find to be true for you. Hugs...and congratulations for finding this site...smart girl! I was a bit slower in finding this goldmine than you were!

Thank you, this site IS brilliant and minimises the over whelming feeling I get at the thought of removing Gluten and Iodine from my diet - as well as being vege (by choice). My dr has offered me medication to help the itching but I have opted for steroid creams/ointments as I am still breastfeeding and have recently found out that breastfeeding can minimise the chance of my son developing Celiac DH. So if I do have Celiac DH I would rather give him the best chance of not getting it - even if means waiting longer for the rash to go. I am building up my list of evidence and research and keeping a food diary and plan to go in 2 weeks, armed with a strong case - Poor Dermatologist will probably deem me insane... !

[Fancy Nancy]

Popping in on this conversation. I too am awaiting positive biopsy results. My blistering has been HORRIBLE! The question is I was on Dapsone 100 mg for one month and had NO HELP from it. In a stupid moment I ate a lot of salt last night and I can feel blisters all over my face, waxy under the skin bumps that you can almost drag out of your skin - bloody, clear fluid. What should I suggest to my derm (he's not convinced it's DH and told me to eat whatever I want last week. Not! I'm still gluten free until I know)to try for treatment? Up the dosage of Dapsone even though it didn't do a thing for me, I actually got worse. Or, what alternative treatment??? I've been gluten free for six weeks. Thanks!

[mommida]

I hope you find a doctor who knows how to diagnose you.

Celiac testing starts with the blood panel, then an endoscopy with biopsy. Gluten free diet is started and the patient should start to feel better and this is the confirmation stage of diagnoses.

Dh diagnoses can start at the dermatologist with a skin biopsy in the correct place for the outbreak. You can continue with the Celiac dianoses at this point because the same damage is present in a DH person's gut.

I had a "rosacia" out break about 2 years ago. First doctors put me on lotions and potions, they didn't work. The dermatologist put me on tetracycline killed my stomach and did nothing for the rash around my mouth. It was spreading elswhere too (forehead, toe, no ryhme or reason for that) Then the folks on this site were helping someone else with the same problem ~ probable ZINC defiency. I stopped taking the antibiotic and started a multivitamin ~ rash was gone as soon as the flared up stuff could heal. Now some vitamins don't have any toxicity levels, but a good majority do. Try taking a gluten free daily multivitamin. That brings us back to you may be Celiac or have some other gut issue if you are having such a vitamin mineral deficiency issue. So find a a doctor to work with.

[rosetapper23]

I would say that you are like many of us who suffer from DH--you simply CANNOT tolerate iodine. Now that you've seen the result of iodine ingestion, you'll need to try everything you can to eliminate any and all iodine in your diet. This may be why the blisters have not disappeared after six weeks of being gluten free. Don't eat seafood, iodized salt, salty foods, processed foods, or dairy (unless it's organic). For me, NO healing began without eliminating iodine...and then the healing was fast.

By the way, others on this forum have mentioned that Dapsone did not resolve their DH.

[Sam81]

I am not gluten free yet as I've been told not to until skin biopsy and endoscopy, Im keeping a food diary purely to illustrate foods high in gluten and wheat are setting me off.

Dapsone did seem to supress everything for me - I just thougt it was behcets - not DH. Rash did go though...

Sorry Rosetapper23, - just realised you were replying to Fancy Nancy!!

[rosetapper23]

No, sorry, Sam--I should have made that more obvious. Please let us know how your tests turn out, okay?

[Sam81]

No, sorry, Sam--I should have made that more obvious. Please let us know how your tests turn out, okay?

Will do, dermatologist is 11 days away and counting...

[Sam81]

Ok, had dermatology app yesterday. Didn't see consultant first - saw registrar. She thought it looked like DH but didn't seem to know much so got consultant to look. He said it DIDN'T look like DH - some form of psoriasis or eczema, but basically took a biopsy to shut me up. The took one of clear skin (i think) and one of affected skin. I'm just hoping they test the right one for the right thing!