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Pictures Of My Rash

Sam81

By Sam81
in Dermatitis Herpetiformis

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glutengirl42 Rookie
glutengirl42
Posted

Thanks for your response ravenwoodglass. I'm actually going to start the specific carbohydrate diet very soon. I'm mentally/emotionally trying to prepare myself and also get my house ready in terms of supplies. I've used rice dream before.. good to know.. I was unaware. What ingredient makes it no good?

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ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for your response ravenwoodglass. I'm actually going to start the specific carbohydrate diet very soon. I'm mentally/emotionally trying to prepare myself and also get my house ready in terms of supplies. I've used rice dream before.. good to know.. I was unaware. What ingredient makes it no good?

It is processed using barley but there is no reg that it has to be on the label so they removed that info a long time ago.

Skylark Collaborator
Skylark
Posted

As expected - damn useless. Told it's IBS and it's common - i am to go on a "low residue" diet. The rash is nothing to do with it, I can't cure the abdominal pain, bloating and nausea as well as curing the bowel issues - only one of these can be sorted and I am to remove fibre from my diet but then take fibogel to help. For a stomach guy he was very concerned with the bowel, refused to do an endoscopy will see me again in 4 months to change fibogel for something else if it doesn't work. Celiac (coeliac as it's called here) is all in my head.

I'm devastated and feel lost and very down....:( Did I mention I feel like a head case??

You are NOT a head case. I really hope the diet helps you.

glutengirl42 Rookie
glutengirl42
Posted

It is processed using barley but there is no reg that it has to be on the label so they removed that info a long time ago.

WoW... it's so frustrating that the label laws don't require full disclosure of ingredients. Very good to know. Continue to keep me informed :)

Sam81 Apprentice
Sam81
Posted
  • Author

And you aren't a head case.

Just to say the results of biopsy apparently showed nothing more than a scratch on the skin, except the letter I read (upside down) said more testing may be beneficial. They're now looking at Lupus regarding the rash in pics 2&4 - the ones that look like hives. Apparently Hives urticaria don't last more than 24 hours... Not what I've read. Also, they have done a RAST test for allergy to wheat... All because I stamped my feet. They now think I'm mental...

pricklypear1971 Community Regular
pricklypear1971
Posted

Just to say the results of biopsy apparently showed nothing more than a scratch on the skin, except the letter I read (upside down) said more testing may be beneficial. They're now looking at Lupus regarding the rash in pics 2&4 - the ones that look like hives. Apparently Hives urticaria don't last more than 24 hours... Not what I've read. Also, they have done a RAST test for allergy to

wheat... All because I stamped my feet. They now think I'm mental...

I know this is incredibly frustrating.

Good news is they are looking at Lupus, which is on the autoimmune spectrum. Any chance they are sending you to a rheumatologist? Good chance a Rheumy will listen to you about Celiac and order the tests.

And that doc must be on the pipe because chronic hives can do all sorts of things, including staying around for more than 24 hours.... Open Original Shared Link

This is a side note - I used to be obsessed with classifying my rash and upset because my dermatologist wouldn't give it a name - he said it was "caused by an autoimmune response" - which quite frankly was the BEST thing he could have said because I started looking for the autoimmune condition.

I obsessed over it being dermatitis, hives, psoriasis....he said it didn't matter because the goal was to relieve the

symptoms and NOTHING HE DID RELIEVED THE SYMPTOMS (furthermore Tge treatments were harming my adrenals). So, I had to find the cause. Perhaps having them look into Lupus is the first step to finding the cause for you.

Good luck and keep on going.

lub2bmom Apprentice
lub2bmom
Posted

have you tried going gluten free to see if it helps?

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Sam81 Apprentice
Sam81
Posted
  • Author

have you tried going gluten free to see if it helps?

Everytime I plan and attempt it I get a glimmer of hope that dr's may test for it so I don't start it! I haven't a clue were to buy stuff in UK so it's taking a lot of time planning - I don't want to be eating salad forever. I'm also vegetarian so that's adds complications in terms of protein or lack of it as all vege stuff is loaded with gluten and wheat. I'm being referred to an immunologist for akllergy to wheat. I'm going to ask for a rhematologist - even if i play on the behcets angle... ...been a while since they checked me out anyway...

I just feel like bechets and lupos are not real - you can only manage them - not cure them... Does that make sense to anyone?

I certainly dont mean to offend anyone by that statement - My family can't accept them. They laughed when I told them.

Natally Newbie
Natally
Posted

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.

Thank you for the information about iodine. I am new to this site and suspect I have a problem with gluten and I also suspect with dairy and yeast as well. So much information I need to give myself some time to take it all in.

  • 1 year later...
Mefellows Newbie
Mefellows
Posted

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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OMG! I get this. I thought it was just weird hives...just as itchy as hives. Is iodine (besides gluten) the answer?
ciamarie Rookie
ciamarie
Posted

OMG! I get this. I thought it was just weird hives...just as itchy as hives. Is iodine (besides gluten) the answer?

For some of us, yes. I also had to cut out MSG and all the msg 'alias' ingredients I didn't know about, as well as sulfites. Some folks on here had to go with low salicylates, so we're all a bit different. If or when you go low iodine, don't cut it out for more than maybe a couple of months? I'm not an expert... but it is a necessary mineral. As we heal, our body can process it better too.

I'd start with the gluten-free and possibly low iodine, then keep a food diary to see what sorts of other things may cause an issue for you. Then you can come back here with questions or for some research. Hope you stop itching soon!

Edited to add: If you want a diagnosis, don't start a gluten-free diet until you get a DH biopsy done or blood tests done or whatever testing your doctor agrees to do. Sorry, I should have put that up front.

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