Pictures Of Dh Rash, Biopsy Site And Skin Shedding.

[Darkfire Ann]

Hand in October 2012

Leg Oct 2012

.

Biopsy 1 with a bruise, then contact dermatitis around that and more DH around that. Oct 2012.

Skin shedding in two hours Nov 2012. This came from a nap and drying out during said nap.

I have more pictures, worse, oh so much worse but this is about as brave as I am right now.

[squirmingitch]

Welcome to the club.

Welcome to the board.

And (((((ANN)))))))

[Darkfire Ann]

Welcome to the club.

Welcome to the board.

And (((((ANN)))))))

Thank you.

[squirmingitch]

I went to your profile & read some of your prior posts. So you are on Dapsone now? How long? How's it working for you? You know, you really should probably start a thread here on the dh forum so that others with dh can read & benefit from it. You don't have to retype everything out --- you can copy & paste pertinent info. or put links in to your other posts.

[Darkfire Ann]

I went to your profile & read some of your prior posts. So you are on Dapsone now? How long? How's it working for you? You know, you really should probably start a thread here on the dh forum so that others with dh can read & benefit from it. You don't have to retype everything out --- you can copy & paste pertinent info. or put links in to your other posts.

I am 100MG a day. I am really scared right now it looks like four or five are wounds like infected. I am calling the derm tomorrow but i'm kinda freaked out right now. My first Dapsone dose was Nov. 27th 2012, 25MG I titered up to 100MG. This rash started in August, My right hand, the one pictured was clear on Sept. 27th. I have a nail polish picture of my clear hand. I am really bad. I might end up in the hospital, I cannot really show the extent of the rash as the pictures show nudity. My face has healed. Most of my scalp has healed. Some between and under my breasts have healed. By healed I mean they are scarred or hyper-pigmented. BUT healed. Sadly I am now dealing with another secondary infection. I had a double ear infection (first time in my life) then a left ear infection. I've done a course of Keflex and two courses of Doryx since September. Now....I assume I'll be back on Doryx with the Dapsone. I know a lot of people forgo Dapsone but I look at their pictures and pray I looked like that. I would turn it down too. But I have more than 50% coverage of my body. They can't find a GOOD spot to try and do a clean IFA biopsy though they want to try again. AND I am still reacting. We had to degluten the house again and I've been exposed several times. So I am still looking at days of reactions to come. But if you mean all the posts I made gosh I've done more hours of research on Celiac and DH than most Celiac trained doctors and osteopaths. It's kinda hard to put it all down, unless I am responding to something.

Here are what we think are the infected spots. This is as of Dec 11,2012. I have them covered. I use raw honey on these type of wounds with a surgeon and two derms ok. I cannot use Cleocin Liquid anymore nor neosporin so I started using honey with my doctor's approval.

[Darkfire Ann]

Here is my right hand on September 25th 2012. It is clean. Now as of Dec 11, 2012. I look like a leper.

[squirmingitch]

DF Ann,

Okay, are you low iodine? Many of us have to go low iodine for a while to get the rash to calm down. Iodine really fires the rash --- it's documented in medical texts. For low iodine guidelines see:

Open Original Shared Link

As to the possible cross contamination issue. Read or re-read the newbie 101 as a refresher course. There is a link in there about how to make sure your dishes, pots & pans, utensils, toasters etc.... are not cc'ing you. Also other great info. in that.

I strongly recommend you also eat only whole foods - strictly. Forget the processed foods. This is how you can insure you are not getting cross contamination until you get this stuff under some kind of control.

Are all your shampoos, conditioners etc.... gluten-free?

You have not been on Dapsone all that long yet & as we are all individuals then sometimes it can take a while for the Dapsone to kick in good. Also worth mentioning is the Dapsone is only going to help the itch at this point --- it is not going to heal the sores & lesions you already have going. They are going to play out their process regardless. AND Dapsone will not necessarily stop ALL the itch & mask ALL the dh from what I have read but it should make things far more bearable.

I remember reading on one of your posts that you have been gluten-free for 9 months now. You do realize a dh biopsy will be a false neg. since you have been gluten-free unless you ARE getting glutened. Also, topical or oral steroids used within 2 months prior will make a dh biopsy a wash.

AND dh can continue to react or present for up to & even longer than 2 years (maybe 10 years :ph34r: ) after going gluten-free. ALL the antibodies have to get out of the skin. Dh can flare & then go away & flare again & so forth anytime until all the antibodies get out of the skin. I have been squeaky clean gluten-free since Dec. 2011 & in Sept. I began a dh flare that is continuing as I type & it's as bad or very close to as bad as yours is. My entire body has been affected --- many portions multiple times. I do not have the option of taking Dapsone as I am allergic to sulfa drugs. And yes, my hubs & my sheets look like yours each morning with the skin shedding on them & naps too.

I know you are hurting & suffering & very, very scared. Dh is scary stuff & it loves to terrorize us! It isn't called the suicidal itch for nothing. And it will make you question everything you eat. It will make you crazy like a loon. I am so sorry that you are going through this. I wish not one single person more in this world had to go through dh. It's pure hell. Been there, done that, still doing it.

Dh also flares with stress. Yeah, I know --- dh stresses us out so how do we de-stress? I wish I had the answer.

I can't tell you much on the infected spots. It is what it is. I use a lot of witch hazel --- drying yes, but then you moisturize but witch hazel keeps infection down. Have you tried peroxide on the infected spots? Then you can coat with honey & go back & forth several times a day.

For what it's worth you are not alone in this. It doesn't help much but during the worst times it can help a bit to think about there being others of us out there who know what you're going through. There are those who have posted here who have made it to the other side of this viscous beast. That knowledge is what helps me most when things are the worst. When I first came here these people were actively posting on here & they helped me to learn all the ropes. Some don't post at all now & some are infrequent but I want you to know that there are people who have made it to the other side.

And tell us how your derm appt. went today.

Rant, rave, scream & cry --- it's allowed here.

Again, I send you huge & very tender hugs. ((((((((ANN)))))))))

[Darkfire Ann]

I am really exhausted but wanted to say 3 yrs ago when they did the endo I was 9 months clean. I went on Elavil. Gained 150 lbs and binged on everything in sight. Everything, then stopped. I'll explain more when I am feeling better. HUGS. I was not clean with the IFA biopsy but I was on ALOT of steroids. at least 15gr a day. 10 80gr tubes a month or another way 2 lbs of steroid creams per month. My skin is showing signs of stretch marks this is day two NO steroids. I am losing my ever loving mind with itch and didn't sleep last night.

[squirmingitch]

Awwww Sweetie, I feel your pain, I really do! I know the losing your ever loving mind itch. You can't think, you can't sleep, you can't cook, you can't eat for going insane with the incessant itching! You bite at anyone who says anything to you b/c the itch is consuming your brain & you can't deal with anything else at all.

I don't know how going off the steroids will play out with Dapsone in the picture but I know that w/o Dapsone when we go off the steroids the rash comes raging back with a vengeance. Been there, done that

.

I also know that for both myself & my husband we discovered that whatever we put on to help the itch doesn't always work every time. in other words we have to switch things up. Sometimes the CVS Caladryl copycat works great & then sometimes it does nothing, sometimes the Benadryl gel works great & sometimes it does nothing etc, etc, etc. So you might try switching off your topical treatments. Sometimes I will put one on just to say this isn't working; have to shower that off & try something else.

Sometimes the best relief I get is literally dousing myself with witch hazel & laying under the ceiling fan & repeat & repeat & it takes the fire out of your skin, then when you're dry put on CVS Caladryl copycat & when dry apply another coat & then a third. After about 1/2 hr. - 45 min. it sort of numbs you. We will sleep with that on. Talk about messy sheets! In the morning you have pink flakes & roly polys all over the place! Worse than skin shedding but who cares if you can get 1/2 nights sleep or more?!?!?

And then sometimes we do better with just Vanicream or Vaseline Int. Rescue Repairing Moisture.

I have often wondered what would happen with soaking in a cool tub of Epsom salts but we are renting while house hunting & this place does not have a tub so I can't soak in anything at all.

Hon, I really hope this gets lots better real soon! Hang in there as best you can. I'm crying for you. <3

[Darkfire Ann]

My iron is so low I was having cramps that contorted my legs. I woke up screaming one morning. The roundish rash on my right hand came from me biting myself to stop from screaming long enough to tell the husband to get me hot water, Epsom salts, towels and the tablet so I could Google I kept the left veggie drawer from my fridge by the bed with cool Epsom salt water for days and one day decided to sit on the freaking towel because NOTHING would stop the itch on my legs and butt. It freakin' works OMG.....downside. Dries the crap out of u and makes it worse later on. I have no tub either. But I would sit in a bucket if I thought it would help. I got so angry at the rash on my scalp I took the salt scrub I made and dumped it over my head. It broke the rash on my head. It hasn't come back but the pain nearly made me faint so I do not think I could do it elsewhere on me. I am using Aquaphor and Eucercin Intensive Repair and Moisturel w/ menthol right now. Vinegar dousing and a cool fan works for me sometimes but again the drying is bad. But I get some sleep. The derm said wait and see, they are better. The Hibiclins is working and the poison ivy treatment dried it out but hurt like a mofo. I am CCing, not sure from what. I have to go slow on what I am taking out of my diet and meds, too much at once is just having me chase my tail.

I am allergic to Sulfa drugs. Bactrim DS almost killed me. I am taking a HUGE risk taking a sulfone drug like Dapsone. But as one molecule can make air or a bomb....one molecule may be enough to allow me to continue with the Dapsone.

[Darkfire Ann]

We do not own a toaster, or anything like that. I do not use soap and shampoo. I make my own. I am also allergic to corn, rice, and other NON Celiac issues so there is no fake bread in my life. I use Remonds Real Salt, Pink Salt and Black Salt, not sure if they are safe. Gotta work on getting the skin off my potatoes. NO sea food. I am allergic to shrimp, crab, fish, tuna etc. I despise sushi and shasimi anyhow no help, no nori. I have red dye issues so that's not on the table. I am very chemical sensitive. I clean mostly with borax and water, or vinegar and stuff. I use Palmolive to wash dishes, never reacted to it before. I make my own laundry soap and NO fabric softener or scents of any kind. I am on a lot of meds, looks like NO gluten but corn yes. I am still looking. I am having issues with my morning coffee and no cream. I don't do milk but do like cheese so again one step at a time. I am too vulnerable to give up everything I am hanging on by a thread as is.

Please don't cry for me. I am crying so much already.....We might flood the place .It helps, you are helping. I do feel alone right now and very vulnerable. I need this place so badly right now.

[squirmingitch]

Cry me a river?

Okay, I think you said you have a gluten-free household. So that's good. Does your hubs ever eat gluten or have gluten beer when away from home? You can get glutened by kissing him if he hasn't brushed his teeth well after having gluten.

Do you have any pets? Cats & dogs should be fed gluten free food anyway but that will ensure you don't get cc'd from them.

I use Palmolive for dishes too & no problem. But I am terribly allergic to Dawn.

Don't rely only on the pharmacist to check if your meds are gluten-free. Call the manufacturer yourself in addition. Also, since you have the corn problem --- do you have a compounding pharmacy near you? They could compound meds for you that would be corn free, gluten-free, & rice free.

As to cheese..... don't know where you are but maybe you can find a local who has milk goats & even makes cheese from the milk OR if you're in a big city they have those open air markets where people from the country come sell produce & such. Maybe you could find some there. BUT you need to ask whomever how they sterilize the udders before & after milking. If they do NOT use iodine but instead use tea tree oil or such then you would eliminate the iodine factor from the milk & cheese. I know that commercially produced goats cheese is as full of iodine as commercially produced cow's milk & cheese. I'm a cheese lover too but I'm not touching it.

Try lots of honey in your morning coffee in place of the cream. I bet you get used to it. ;-)

Iron --- did you know that green peas (sweet peas) are VERY high in iron? I would imagine that includes snow peas & sugar snaps. Peas are even higher in iron than raisins. So eat your peas! Are you getting iron injections?

PEEL those potatoes & peel them deeply. You can still have baked potatoes. I double peel them & then lightly coat them in safflower oil, cover a pan with tin foil but do not wrap the potatoes in foil, just set them on the pan & bake them as you would regular baked potatoes. The outsides get crispy like skins.

Can you just try to use PLAIN non iodized Morton salt? I don't know about the Redmonds either.

If you eat whole foods only then you can be sure there is no cc from that. I will caution that you need to read the frozen veggie bags or pkg. & make sure it doesn't say it's produced in a facility that does wheat. Rare but it does happen so just giving you a heads up on that.

Hang in there Ann --- we're going to make that thread into a rope!

[Darkfire Ann]

I have GERD so I cannot drink black coffee it kills me but I dont want to give it up. I do not drink sweet coffee. It's one of the only things I have left. I went the RAW route, with Dairy. Did not work. I went the farmers market route. No change except the cost was triple. I mean we did RAW dairy for two years. Local good dairy for three years. NO change.....So I went back to store bought stuff, cuz the deal is this. The more pure it is the more protein and more likely you will react. The crap in the store isn't even food anymore but it makes me feel like ready to face the day, its a ritual, one I am clinging to. My allergist wanted me dairy free so badly and I can't do it. It's a battle I cannot win right now. My allergist is one who I hashed out with and went back to the store bought stuff because so little protein is left. I am experimenting with dry creamer and coconut stuff I am making, but it is a slow process.

My cats are hunters most of them eat raw meats/kills. There is cat food but only dry only a little. Corn, rice and all that starch is bad for cats. I have two with epilepsy they need real food not kibble. Hubby is gluten free at home. No booze either. ( i did find out booze takes the itch out but with my meds i have to make a choice and well the booze won twice but we are not drinkers really anymore) If he eats anything out of the house he showers before he even comes near me. He is a specialty painter so the shower is usually his first stop after work so it works. He was gluten free with me for many years, he likes it. He gets what he needs outside and that works for us.

I am going through the manufacturer websites and labels for the medications, the crap is like my Xanax it has changed manufacturers four times in 2012. HARD to keep up and I am still working on it. Plus I cycle meds in and out so again I am still researching. I cannot pay for compounded meds. I pay 0-2.60 per med. Some of them retail over 500 a month. I simply have no choice medicare does not cover compounds. I get extra help for medications because of my income so a 0 copay for a 500 dollar med, well...I dunno. The allergist told me the amount is so little I would not react to the corn starch in my meds. He also hasn't seen me like this. He isn't covered and wants 400 bucks up front just to walk in the door. Not gonna happen. So I need a new allergist too.

No iron shots until steroids gone and more blood work.

Ug peas really.... /cry...yuck. Another question. WHY not black strap molasses? I use it for iron, and all the electrolytes but the low iodine site said NO.....but it helps the cramps so much...do you know?

OMG DAWN.....fork....it killed my hands. I felt like I was going nuts. Thank you for telling me that. Sometimes you react to the dumbest stuff it's like you think you've finally gone bonkers for real this time....

One last real time sensitive question. I feel sick, lose my voice and generally ACHE like hell after going to bars. I assumed all the ambient beer in the air was doing me in. Is that possible? I have DJ friends, used to do promo work and photograph the EDM scene and was making money. I had to give it up it was killing me. One of my dreams was to be a photographer so when I got my first paid gig I nearly died...but all the beer in the air. I mean every bar, every time. I smoke so it was never that. Tomorrow night friends are throwing a huge party at a bar I used to work the EDM scene with, this is more a goth scene but the DJ and his wife are good friends, but can you get messed up from just being in a bar even if no one touches you? Hubby swears his research says no....I mean it's a goth bar I will be covered head to toe no one would even know I had a rash but seriously....could the beer do me in? I know I should just stay home I am really forking sick but part of me is like what if this kills me, I should go what if I never see them again.

[squirmingitch]

I tell you the truth Ann. You CAN NOT get sick by being in a bar. REALLY. You might get nauseous from smelling perfumes & after shave & the smell of beer may turn you off but you will not get sick from being in the bar. Honestly. No, the beer will not do you in unless you drink it.

[squirmingitch]

The problem with the store bought dairy Ann is the IODINE. And the iodine fires the rash.

Well, you need to make sure what little kibble you feed the cats is gluten free kibble. And if you feed canned then it also needs to be gluten free. That is how you keep from getting cc'd.

You hubs showers but does he brush his teeth before kissing you when he has been out eating gluten? That is how you will keep from getting cc'd.

As to compounded meds --- I have CHAMPVA & I was told over & over again by the pharmacies that it (or ANY insurance) would not pay for compounding. I also called CHAMPVA & they said they would not pay for compounding. Well, my compounding pharmacy did not make up the compound but ran it through the system FIRST to see if CHAMPVA would pay for it & they DID & so I got the 2 compounded scripts. So what you are told is not always so. People you talk to assume this or that but that doesn't mean they are correct. CHAMPVA is a govt. program as is Medicaid --- you never know until the compounding pharmacy tries to put it through. If your doc specifies that it has to be done this way b/c of allergies then how can they say you have to take stuff that will make you ill?

Again Ann, the molasses is IODINE so if you keep putting the iodine in your body then you will continue to think you have been cc'd.

So, you're doing milk, cheese & molasses --- all on the low iodine no-no list. Then why bother at all? Eat anything you want. You are the one who pays for it in maddening itching. I'm trying to help you here not treat you like a kid who doesn't want to give up things b/c it's hard for you. Sort of a tough love type of thing Ann. I DO care greatly! But if you won't listen then...... I can't force you & you will continue to be miserable. It's your choice.

You can think of food this way (peas) ---- a very wise person who has been down the dh road said this to me & I think she hit the nail on the head! "Food is my medicine; if there is no pill for this disease then let food be my medicine". All the while she was eating things she wasn't particularly fond of or had eaten enough of to last her a lifetime.

Again, I will say that just being in the bar will not make you sick. the beer is not in the air to be inhaled as if it were wheat flour floating around. Your fear may make you sick so say to yourself, "HOW in the world can they drink that foul stuff!!!!????" Turn it around. Do NOT say to yourself, "I'm going to get sick from this, I'm going to get sick from this, I'm going to get sick from this". Instead say, "They are going to get sick from that stuff, they are going to get sick from that junk, they are going to get sick from that stuff".

I wish you the very best Ann. I truly do. And I will continue to be here.

[squirmingitch]

Check it out:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[Darkfire Ann]

I didn't understand I guess what I was reading on the thyca? site. I still suffer from the brain fog. Not been clean too long. I get the iodine thing now. I didn't before. I found a nondairy, certified gluten free, creamer I seem to be ok with. Morning ritual preserved and no GERD issues. Time will tell on the CC part. I haven't had BSM in over a week and will steer clear of it. Hubbs just rewashed all pots and pans and everything to make sure the DAWN was gone and no trace ick left over on them. He does brush his teeth. I am sorry we brush our teeth in the shower, so taking a shower includes that. I know it's weird it's just a habit we have. We use ONLY peroxide and baking soda. NO toothpaste too many CC ingredients in there. I chose to do my own thing and not go to the bar which was good they had all manner of gluten there in the form of free food. I do not touch the cat's food and am not sure what we have this time it might be IAMS kitten which is kinda crappy I think. Our cats are indoor/outdoor cats and need the extra nutrition if they do not get alot of kills. I have no overweight sick cats, the two with epilepsy were born that way. I will look into a new brand. I took the vit-c pills out of my vitamin organizer. The rest are all certified clean. They do not use litter boxes much but I use feline pine and was told it was safe. It needs changing about four times a year and hubs does it. Now their cat treats are probably bad I haven't checked, but I want to ween them off that junk anyhow it's like crack for cats. As I have limited brain power I have not investigated most of this site to find doctors or post about it but will now that I know it's possible. Again thank you. The Doctor sure as bleep didn't know anything about this.

[Darkfire Ann]

Check it out:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

just saw this going to bookmark them thank you.

[Darkfire Ann]

I found out Remonds Real Salt NO iodine, it says right on the bag that legal disclaimer. "This salt does not supply Iodine a necessary blah blah blah" So it's safe.

[squirmingitch]

Cool about the Redmonds salt! YAY! That's one for our side.

Okay. I do understand about gluten head or brain fog as we call it. Maddening isn't it? Makes you feel like a complete idiot when you know you have the intelligence to understand all this stuff but your brain will not co-operate.

Oh, okay, so you brush your teeth in the shower. Not weird. I think lots of people do that. Hey, I had a friend who used to brush hers while she was in bed watching TV --- now THAT'S weird! I get way too messy to do it that way.

Chalk up 2 for our side with the non dairy gluten-free creamer! AND #3 for no gerd! Hey girl, you're on a roll now!

The thing about pet food & ESPECIALLY with cats is that pets lick us, pets lick themselves & we pet them, pets (dogs) can drool on us. Pets eating gluten food have gluten mouth & gluten saliva. Now if your cat has gluten mouth & then cleans itself the entire cat is a walking gluten fur ball. You touch then don't IMMEDIATELY wash your hands & eventually it can get from hands to mouth. You see?

Here's the doctor thread:

https://www.celiac.com/forums/forum/6-celiac-disease-doctors/

Just Google "grain free cat foods" & you'll come up with a plethora of foods to choose from.

Well, one day you will feel confident enough to go to an event like last night & feel comfortable. But that's fine if it's too soon for you yet. You'll get there. I have faith in you. When you're ready.....

[Darkfire Ann]

Ok I do typically use EVO, Blue Mountain, and Wellness brands for our Cats so I was using grain free cat foods, but Iams is kinda crap so no more of that. thanks for the doctor thread I am not sure what I want to say yet. Gonna think on that. Thank you again. You are a the biggest blessing to me, thank you. Ditto on the messy tooth brushing...we use a tongue cleaner too...I could not imagine doing that in bed lol.

[squirmingitch]

Ohhhhhhhhhhh, tongue cleaners!!!!!! They are FABULOUS aren't they? I mean they're kinda gross but a wonderful tool! No more waking up with morning breath when you use one of those. You can wake up, roll over & kiss w/o even having to hold your breath.

No thanks needed dear girl but certainly appreciated. Others did for me what I'm trying to do for you. Maybe someday you'll pay it forward.

You can use the search box for the forum in the doc thread to see if there are already postings in your area. Go ahead & think about what you want to say on it --- no problems with that.

[Darkfire Ann]

The best thing is NO plaque on my tongue bar. See before we did that no amount of brushing kept my tongue bar clean. I had to remove the piercing and soak it. Now when I clean the steel it doesn't look like it has a tarter problem. Also no more fuzzy teeth. Who knew just cleaning your tongue would do all that.

I still am not sure what to say I am having this weird no scratch but my hands are weeping thing kinda distracted. I think they are healing for real. Lots of things seem to be changing just by stopping dairy so much not even totally dairy free yet....I also don't want to break another doctor in...I have to steel my nerves to start down this road ...again.

I will pay it forward.....in any way I can....

[squirmingitch]

Sounds like some progress is happening. Let's hope it continues.

HATE the breaking in a new doc!!!!!!

[Darkfire Ann]

I am also one that lost much of her enamel. The Dentist told me my GI doc was a nut case he could tell I had Celiac just by my enamel. I had no cavities ever until I got two. Still good teeth but my enamel is shot and to him that was the big clue. I have icky stains but they are harmless just ugly. The baking soda works good and contrary to belief it isn't going to destroy your enamel it is actually helping me. As the toothpaste kept my mouth contaminated constantly. I also do not have DH in or around my mouth.