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Pictures Of My Rash


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#1 Sam81

 
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Posted 28 August 2011 - 09:18 AM

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.

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#2 Skylark

 
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Posted 28 August 2011 - 10:30 AM

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.
http://ibstreatmentc...ts-disease.html

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. http://hpi.georgetow...cy/records.html

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.
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#3 rosetapper23

 
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Posted 28 August 2011 - 10:39 AM

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!
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#4 Sam81

 
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Posted 28 August 2011 - 11:56 AM

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...
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#5 Sam81

 
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Posted 28 August 2011 - 12:36 PM

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.
http://ibstreatmentc...ts-disease.html

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. http://hpi.georgetow...cy/records.html

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...
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#6 Hopeful1950

 
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Posted 28 August 2011 - 01:37 PM

Hi, your pictures look the same as my DH rash. Does it itch alot? For most people, the DH rash is intensely itchy.
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#7 Sam81

 
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Posted 28 August 2011 - 01:47 PM

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?
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#8 Hopeful1950

 
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Posted 28 August 2011 - 02:29 PM

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.
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#9 rosetapper23

 
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Posted 28 August 2011 - 04:06 PM

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.
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#10 eatmeat4good

 
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Posted 28 August 2011 - 05:04 PM

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!
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#11 lovegrov

 
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Posted 28 August 2011 - 06:29 PM

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

richard
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#12 Sam81

 
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Posted 29 August 2011 - 04:17 AM

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??
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#13 Flasaltwater

 
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Posted 29 August 2011 - 08:03 AM

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
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20 years ago told I had IBS, Have one child with Type 1 Diabetes
Symptoms are 20 years of loose stools
15 years chronic anemia still battling
Nighttime Bathroom runs, Insomnia, Bad Smelly Gas
last 2 years severe bloating 1 yr bad indigestion
1 year really bad itchy rash scars to prove it
Pica Ice and salt, no salt at the moment on an iodine break. :)
Small Stature 5'2
Cannot gain weight even have weighed as little as 90lbs currently 110
Hoping to get a diagnosis through skin biopsy and DNA

#14 Sam81

 
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Posted 29 August 2011 - 01:43 PM

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........... :(
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#15 eatmeat4good

 
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Posted 29 August 2011 - 06:36 PM

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!
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
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