Strongly Suspecting Dh And Hoping For Improvement

[Kalokairi]

I found this forum a couple of days ago and it has been a huge help in my struggle to find out that it's really DH that I have. 

 

I have some questions but I will tell you my story first:

 

Two years ago I got a very itchy rash with lesions on my lower back, and I was told by a dermatologist that it was a reaction to hot weather since I was abroad. After a while it left and I didn't think about it anymore. One year later I got the same thing on my upper back. It stayed for a while and was extremely itchy, it looked like something was eating on me. Then it disappeared. Six months ago I started having eczema and also the rash came back. Now it was everywhere, on my legs, on my whole back, on my arms, etc. It was so extremely itchy that I could not sleep more than one hour at night, and I had to sleep during the day whenever it was possible. The sheets were covered with bloodstains. The doctors prescribed me cortizone creams, light therapy, cortizone pills, creams with tacrolimus, other creams, pills for the itching, etc. Nothing helped. Some times I went to the health center in tears and waited there just to get help in some way, the cortizone pills helped with the eczema but not with the DH-lesions, but as soon as I stopped they came back. Accidentally I was searching online in November this year about rashes, and I came across information about DH, I thought that the pictures looked exactly like what I have, and also that no rash could itch more than this, so it has to be DH. I demanded a blood test for gluten at the hospital, but it was negative. I also told my dermatologist that I can feel that this rash is caused by something I eat or something I'm exposed to, but she just said that it was eczema. I then decided to stop eating gluten and has been more or less gluten free since the beginning of December. 

 

In the beginning my wounds on the legs started to heal and disappeared, then I accidentally ate something that contained gluten and got the worst rash ever with blisters all over my back that after inevitable scratching turned to big wounds. Now my back is almost healed but instead it has come back at my legs, the arms (the bend of my arm is so dry that I have to hold the arm straight out, even though I moisturize with shea butter like 20 times a day, my whole neck is the same, extremely dry and painful to turn my head) and even in the hairline and the jawline. Yesterday it even started to itch at my eyelid. 

 

After six months of pure misery I am about to break down. My sheets are always stained with blood and I haven't slept one whole night during these months. Tonight I didn't sleep at all and then had to go to work, I hoped I would be able to sleep at 7pm when I got home, but no luck....

 

The itch is impossible to ignore. I will try to describe it: 

 

If it's bad, then i feel a burning and itching sensation, when I touch the place on the skin it is raised, but its not really a blister. If I don't scratch it simply does not go away, it's IMPOSSIBLE to not scratch, even though I have tried so many times. When I scratch a clear liquid comes out, and eventually also some kind of white "ball/thing", and when this thing comes out it almost stops itching completely. What is this? Parts of gluten? (I read somewhere on the forum that another member experienced the same thing, but I don't know if this is common?) Then the area is very very sensitive, it's like a crater in the skin, it starts healing slowly, but at night usually I accidentally scratch it and it starts to bleed, and it's like a crater in the skin again. These wounds heal very slowly. 

 

In the better cases, then I just feel a bump on the skin that I have to scratch, there is no liquid but still the white "ball/thing" comes out, but its more dry. Those heals a bit faster, but sometimes I have to scratch it again and more white things comes out which relieves the itching temporarily. 

 

After reading on this forum I decided to try the low iodine diet, and have been following it since yesterday. I'm still learning but I really really hope this will improve things a bit, because I'm desperate. I have an appointment with a dermatologist in two weeks but I don't have any hope at all about that appointment. I was thinking about asking about Dapsone, but after reading here I don't know if I want to risk it. And probably the dermatologist would want me to eat gluten again to take the test for DH, and this is something I would NEVER risk. I can't risk getting even worse, I understand why they call it the suicide itch! Something that I didnt't connect with this earlier is that I've had itching and very dry scalp in periods since 10 years back. Now I suspect that this is also caused by DH. I hope I haven't had it for 10 years because then maybe it has done more damage to my intestines. 

 

Sorry for the long post...I just feel so relieved to finally having somewhere to go to read about DH, and since coming here I'm 99,9% sure that this is what I have. What do you think?

 

I know it's impossible for you to say, but I wonder about the iodine diet, if I don't see any improvements within some weeks, should I keep on for months and even years like some people here seem to have done? Or if it doesn't help in some months, does it simply mean that I'm not reacting to iodine? Because I haven't seen much improvement since I went gluten free, I'm suspecting that maybe the iodine is the problem, so i REALLY wish I will see improvement with this, otherwise I don't know what to do...

 

Thanks for reading, it means a lot to me! And I wish both you and me will get a relief soon from this terrible illness. 

 

 

 

 

[cyclinglady]

Welcome!

My heart goes out to you. Hang in there! I do not have DH, but I do know that those who do on this forum, will be able to offer you great advice. In the meantime, search the forum for ideas to help you feel better.

Hugs!

[GF Lover]

I found this forum a couple of days ago and it has been a huge help in my struggle to find out that it's really DH that I have. 

 

I have some questions but I will tell you my story first:

 

Two years ago I got a very itchy rash with lesions on my lower back, and I was told by a dermatologist that it was a reaction to hot weather since I was abroad. After a while it left and I didn't think about it anymore. One year later I got the same thing on my upper back. It stayed for a while and was extremely itchy, it looked like something was eating on me. Then it disappeared. Six months ago I started having eczema and also the rash came back. Now it was everywhere, on my legs, on my whole back, on my arms, etc. It was so extremely itchy that I could not sleep more than one hour at night, and I had to sleep during the day whenever it was possible. The sheets were covered with bloodstains. The doctors prescribed me cortizone creams, light therapy, cortizone pills, creams with tacrolimus, other creams, pills for the itching, etc. Nothing helped. Some times I went to the health center in tears and waited there just to get help in some way, the cortizone pills helped with the eczema but not with the DH-lesions, but as soon as I stopped they came back. Accidentally I was searching online in November this year about rashes, and I came across information about DH, I thought that the pictures looked exactly like what I have, and also that no rash could itch more than this, so it has to be DH. I demanded a blood test for gluten at the hospital, but it was negative. I also told my dermatologist that I can feel that this rash is caused by something I eat or something I'm exposed to, but she just said that it was eczema. I then decided to stop eating gluten and has been more or less gluten free since the beginning of December. 

 

In the beginning my wounds on the legs started to heal and disappeared, then I accidentally ate something that contained gluten and got the worst rash ever with blisters all over my back that after inevitable scratching turned to big wounds. Now my back is almost healed but instead it has come back at my legs, the arms (the bend of my arm is so dry that I have to hold the arm straight out, even though I moisturize with shea butter like 20 times a day, my whole neck is the same, extremely dry and painful to turn my head) and even in the hairline and the jawline. Yesterday it even started to itch at my eyelid. 

 

After six months of pure misery I am about to break down. My sheets are always stained with blood and I haven't slept one whole night during these months. Tonight I didn't sleep at all and then had to go to work, I hoped I would be able to sleep at 7pm when I got home, but no luck....

 

The itch is impossible to ignore. I will try to describe it: 

 

If it's bad, then i feel a burning and itching sensation, when I touch the place on the skin it is raised, but its not really a blister. If I don't scratch it simply does not go away, it's IMPOSSIBLE to not scratch, even though I have tried so many times. When I scratch a clear liquid comes out, and eventually also some kind of white "ball/thing", and when this thing comes out it almost stops itching completely. What is this? Parts of gluten? (I read somewhere on the forum that another member experienced the same thing, but I don't know if this is common?) Then the area is very very sensitive, it's like a crater in the skin, it starts healing slowly, but at night usually I accidentally scratch it and it starts to bleed, and it's like a crater in the skin again. These wounds heal very slowly. 

 

In the better cases, then I just feel a bump on the skin that I have to scratch, there is no liquid but still the white "ball/thing" comes out, but its more dry. Those heals a bit faster, but sometimes I have to scratch it again and more white things comes out which relieves the itching temporarily. 

 

After reading on this forum I decided to try the low iodine diet, and have been following it since yesterday. I'm still learning but I really really hope this will improve things a bit, because I'm desperate. I have an appointment with a dermatologist in two weeks but I don't have any hope at all about that appointment. I was thinking about asking about Dapsone, but after reading here I don't know if I want to risk it. And probably the dermatologist would want me to eat gluten again to take the test for DH, and this is something I would NEVER risk. I can't risk getting even worse, I understand why they call it the suicide itch! Something that I didnt't connect with this earlier is that I've had itching and very dry scalp in periods since 10 years back. Now I suspect that this is also caused by DH. I hope I haven't had it for 10 years because then maybe it has done more damage to my intestines. 

 

Sorry for the long post...I just feel so relieved to finally having somewhere to go to read about DH, and since coming here I'm 99,9% sure that this is what I have. What do you think?

 

I know it's impossible for you to say, but I wonder about the iodine diet, if I don't see any improvements within some weeks, should I keep on for months and even years like some people here seem to have done? Or if it doesn't help in some months, does it simply mean that I'm not reacting to iodine? Because I haven't seen much improvement since I went gluten free, I'm suspecting that maybe the iodine is the problem, so i REALLY wish I will see improvement with this, otherwise I don't know what to do...

 

Thanks for reading, it means a lot to me! And I wish both you and me will get a relief soon from this terrible illness. 

 

Hi Kalokairi, and Welcome to the Forum.

 

If you have searched the DH form you have probably come across posts by Squirmingitch.  I know from Squirmy that if the Dermatologist does a biopsy you must be eating gluten and the biopsy in Next to an active lesion, not the lesion itself.  It sounds like you are having a horrible time with this and Im so sorry.  Also, If you were on any steroid creams or pills your blood test would also test negative.  I don't have anything else to offer you except support so here's a big hug and hang in.

 

Colleen

[squirmingitch]

Kalokairi, Welcome to the board & the dh forum, something we wish no one ever had to be a part of if you catch my drift. Honey, it sure sounds like you've got it. I have never had the white balls things but a couple of people have mentioned it. Everything else you say fits to a T. Been there, done that with no sleep, bloody sheets every single morning for a year or so. And as the places ooze & that stuff dries & then comes off on the sheets as well as your dried skin sloughing off -- it feels like you're sleeping (or trying to) in sand.

 

I'm so sorry you have this crap! ((((HUGS))))

 

I would say to stay on the low iodine for a couple more weeks & see what happens. Read, read, read, on this forum & follow links in posts. That's the best way for you to learn.  Colleen has the right of it as far as the tests go. And if you've been reading then you know why the blood test came up negative --- that is IF they even did the full, current celiac panel on you.

 

I can't stress this enough:

 

DH is sensitive to the slightest amount of gluten!!!!!!!!!!!!!!!!!!!! So make SURE you aren't getting cross contaminated. Read the Newbie 101 & clean out your kitchen. 

 

I have to go make some gluten-free scones now. Ask us any questions, any time. You just have to hang in there --- it's a crazy ride but I can absolutely promise you that you WILL get better, you WILL. You just have to stay the course no matter what. This stuff will eff with your mind like nobody's business. Just stay the course. DH can & will flare even when you've been strict gluten-free for a long, long time --- those are the times you need to not doubt yourself & stay the course. Be rock solid hon.

[Kalokairi]

Thank you all for your kind words! It means so much for me to have someone to talk to about this! 

 

Actually I don't remember if I used steroid creams during the blood test, but maybe I did, but at least I was eating gluten by then. I read that the test for DH won't work if I'm not eating gluten, but then I rather not get the diagnosis, I'm so afraid of eating gluten again. I'll hope at least maybe the dermatologist can help me to investigate if I have any damage in my intestines because of this, but otherwise I have no nope for medical help as I have realized that the doctors don't know much about this condition, and even less in the European country I live in, I even told my other dermatologist that I was suspecting DH and she just said: "noooo, it's just your atopic eczema" I believe that all the problems on the body must be caused by something, but here they prefer to just give steroid creams and that's it. 

 

Yes I recognize the feeling of sleeping on sand...I often feel weak lately when it feels like the world is spinning around for a second, but I'm not surprised since I can imagine what kind of damage it is to the body when it has to heal my skin over and over again and a lot of skin is falling off. And on top of that I don't get enough sleep. 

 

I forgot to mention that I have been avoiding milk products for 2-3 weeks already, because I read that it could prevent the healing of the stomach. Since then I have had to pee very often, I don't know if this is the body trying to get rid of toxins or something...have any of you experienced something like this when changing your diet? 

 

I also forgot to say that I have one of the "flesh eating" wounds (as I think someone here called them). It's been from good to worse for several weeks now and it seems like I can't get rid of it, and it's also the part that it itching the most. I hate when the wounds are itching and to have to scratch them even when they bleed, it's so disgusting!! I have never been someone who scratch on wounds but now I just can't help it. 

 

It's at least encouraging to read your experiences and see that many of you have gotten at least a bit better. Since I found this forum I realized that this was more serious than I thought, and that maybe I will never be able to go to a restaurant again, or to stay in the sun...How is it for you? Is it even possible to go to a restaurant to have a salad or meat and potatoes, or will it cause a reaction if the restaurant use flour in the kitchen? (I understand that this is individual, but I wish I could have a hope of getting to this point one day in the future). And can you stay in the sun when you're healed/almost healed without getting a rash?

 

Gluten free scones sounds amazing! I have recently been into a very healthy diet (paleo/raw), but now when I can't even eat gluten free oats, drink almond milk and eat eggs I feel like my options are very limited. I guess it will have to be plain chicken with sweet potatoes from now on, which I love, but it's a bit repetitive. 

 

I will have a look right now at the posts that you recommended! Thanks a lot for all the help!

[squirmingitch]

YVW!  I felt just the way you did about no way I was going to eat gluten for some doc. I knew what I had & didn't need to prove it to anyone! At least, not enough to put myself through more torture for heaven knows how long. 

May I ask what country you're in?

I rather doubt the derm can or will help you get an endoscopy. We with dh tend to have patchier damage & when you consider the fact that if you opened up our intestines & laid them out flat, they would cover a tennis court!!!!!, then it can be hard for a doc to happen to hit on a damaged spot. That's also why 5 - 6 biopsy samples are recommended at the very least. We do get the damage to our intestines just as celiacs w/o dh but ours is in more of a patchy pattern. The way I feel about it is this.... we know the treatment for celiac disease - a gluten-free diet. On the gluten-free diet we will heal. That's the good news. No meds, no treatments, just a gluten-free diet. Not so bad when you consider other diseases out there is it? Being gluten-free, a biopsy of your intestines would come up false negative anyway & rarely can the doc see any damage through the scope so there really may not be much point.

As to the dairy products, first they are high iodine but secondly, the tips of the villi are what deals with lactose & if the villi tips are damaged then you're not going to be absorbing the nutrients or breaking down the lactose in dairy with the exception of yogurt as it contains the bacteria to deal with it; however, yogurt is still high iodine. Further, some have so much damage they can't even do yogurt for a time.

Yes, I called them flesh eaters. Go to page 5, post #68 & running through page 6. All that you see later turned black -- it was horrifying! It felt like I had shards of glass imbedded in my skin. I could not wear clothing of any kind & just the vibrations of walking caused the lesions to be unbelievably painful. None of these (or any of my dh) has ever gotten infected. Something we all remark on & evidence of the antibodies at work. Sort of funny when you think about it --- the antibodies are causing all this & at the same time are our saving grace keeping everything from getting infected. Weird phenomenon. 

I have gotten a million % better since then!!!!! I rarely get any blisters anymore. I go hours & hours & hours w/o itching. There is no heat to it anymore. I recently went through a 10 day period where I had not the tiniest hint of an itch anywhere on my entire body. It felt like a vacation! I sleep through the night now. Only once in a blue moon do I have a spot of blood on the sheets. 

I actually sit in the sun now & pull up my pants legs & let the sun shine on them. It does not make the rash flare now & it does not make it itch. I think at this point, it's actually helping but that was not always the case. I do not sit for more than about 10 min., 2 pr 3 times a day. 

I tried eating out once very early on in the game, before my hubs went gluten-free. We went & I sat down & spoke with the owner at length. She asked many questions which I answered. She told me what she felt comfortable that I could safely have. She spoke with both the server as well as the chef & I saw/heard her explain in depth what they needed to do. I was in tears when the meal arrived b/c I was so relieved & it felt so good to be eating out w/o being terrified. It was delicious! I could not eat all of it so took the other half home for later. The later was lunch the next day & I dumped it out to heat it up & there at the very bottom was a sprout. My meal did not contain sprouts so how did a sprout get in there? Simple. They did not cut & prep my meat & veggies on a clean surface. I did not get glutened but this taught me a lesson I will not soon forget. ALL OF THAT CARE, ALL OF THAT DISCUSSION, ALL THOSE QUESTIONS & INSTRUCTIONS BY THE OWNER & still it wasn't done right. 

I will not eat out again unless it's at a totally gluten free restaurant. It's just not worth it. Not worth taking the chance. I may one day do so but I can tell you it will be years before that happens. It will have to be after I have had no rash for several years. Just my 2 cents worth.

I have a wonderful site for you. Paleo you say? Welcome to Elena's Pantry --- and the scone recipe I made today. The are yummy!!!! BTW, my hubs does not care for nuts or seeds in his baked goods so I make it only with the dried fruits & just up the measurements on them. It works great! A tip for you. When working with gluten-free doughs --- get yourself a box of those nitrile gloves that docs & dentists wear --- the unpowdered kind --- when it comes time to handle the dough, put those on & pour oil in your palm & rub it all over the gloves. Keeps it from sticking like glue to you.

Open Original Shared Link

 

You can have egg whites ( no iodine in the whites) --- 2 egg whites = 1 whole egg. Enjoy!

[mendylou]

I found this forum a couple of days ago and it has been a huge help in my struggle to find out that it's really DH that I have. 

 

I have some questions but I will tell you my story first:

 

Two years ago I got a very itchy rash with lesions on my lower back, and I was told by a dermatologist that it was a reaction to hot weather since I was abroad. After a while it left and I didn't think about it anymore. One year later I got the same thing on my upper back. It stayed for a while and was extremely itchy, it looked like something was eating on me. Then it disappeared. Six months ago I started having eczema and also the rash came back. Now it was everywhere, on my legs, on my whole back, on my arms, etc. It was so extremely itchy that I could not sleep more than one hour at night, and I had to sleep during the day whenever it was possible. The sheets were covered with bloodstains. The doctors prescribed me cortizone creams, light therapy, cortizone pills, creams with tacrolimus, other creams, pills for the itching, etc. Nothing helped. Some times I went to the health center in tears and waited there just to get help in some way, the cortizone pills helped with the eczema but not with the DH-lesions, but as soon as I stopped they came back. Accidentally I was searching online in November this year about rashes, and I came across information about DH, I thought that the pictures looked exactly like what I have, and also that no rash could itch more than this, so it has to be DH. I demanded a blood test for gluten at the hospital, but it was negative. I also told my dermatologist that I can feel that this rash is caused by something I eat or something I'm exposed to, but she just said that it was eczema. I then decided to stop eating gluten and has been more or less gluten free since the beginning of December. 

 

In the beginning my wounds on the legs started to heal and disappeared, then I accidentally ate something that contained gluten and got the worst rash ever with blisters all over my back that after inevitable scratching turned to big wounds. Now my back is almost healed but instead it has come back at my legs, the arms (the bend of my arm is so dry that I have to hold the arm straight out, even though I moisturize with shea butter like 20 times a day, my whole neck is the same, extremely dry and painful to turn my head) and even in the hairline and the jawline. Yesterday it even started to itch at my eyelid. 

 

After six months of pure misery I am about to break down. My sheets are always stained with blood and I haven't slept one whole night during these months. Tonight I didn't sleep at all and then had to go to work, I hoped I would be able to sleep at 7pm when I got home, but no luck....

 

The itch is impossible to ignore. I will try to describe it: 

 

If it's bad, then i feel a burning and itching sensation, when I touch the place on the skin it is raised, but its not really a blister. If I don't scratch it simply does not go away, it's IMPOSSIBLE to not scratch, even though I have tried so many times. When I scratch a clear liquid comes out, and eventually also some kind of white "ball/thing", and when this thing comes out it almost stops itching completely. What is this? Parts of gluten? (I read somewhere on the forum that another member experienced the same thing, but I don't know if this is common?) Then the area is very very sensitive, it's like a crater in the skin, it starts healing slowly, but at night usually I accidentally scratch it and it starts to bleed, and it's like a crater in the skin again. These wounds heal very slowly. 

 

In the better cases, then I just feel a bump on the skin that I have to scratch, there is no liquid but still the white "ball/thing" comes out, but its more dry. Those heals a bit faster, but sometimes I have to scratch it again and more white things comes out which relieves the itching temporarily. 

 

After reading on this forum I decided to try the low iodine diet, and have been following it since yesterday. I'm still learning but I really really hope this will improve things a bit, because I'm desperate. I have an appointment with a dermatologist in two weeks but I don't have any hope at all about that appointment. I was thinking about asking about Dapsone, but after reading here I don't know if I want to risk it. And probably the dermatologist would want me to eat gluten again to take the test for DH, and this is something I would NEVER risk. I can't risk getting even worse, I understand why they call it the suicide itch! Something that I didnt't connect with this earlier is that I've had itching and very dry scalp in periods since 10 years back. Now I suspect that this is also caused by DH. I hope I haven't had it for 10 years because then maybe it has done more damage to my intestines. 

 

Sorry for the long post...I just feel so relieved to finally having somewhere to go to read about DH, and since coming here I'm 99,9% sure that this is what I have. What do you think?

 

I know it's impossible for you to say, but I wonder about the iodine diet, if I don't see any improvements within some weeks, should I keep on for months and even years like some people here seem to have done? Or if it doesn't help in some months, does it simply mean that I'm not reacting to iodine? Because I haven't seen much improvement since I went gluten free, I'm suspecting that maybe the iodine is the problem, so i REALLY wish I will see improvement with this, otherwise I don't know what to do...

 

Thanks for reading, it means a lot to me! And I wish both you and me will get a relief soon from this terrible illness. 

I'm glad to hear someone else describe the kind of reactions I notice.  Most of my breakouts start with a raised welt which as you said you have to scratch. At first there seems to only be clear fluid but after a couple days I too get the hard ball contained inside.  I have referred to that AS GETTING THE CORE OUT.  I too would agree that until that core is removed it is much more itchy and actually hurts.  I don't know how long it takes for yours to heal but mine take a long time.  I am also very sensitive to iodine and avoid as much as I can, but sometimes when eating out of your own house it is almost impossible.  I have been gluten free for over 3 years and have been careful to watch iodine intake for at least 2 1/2 yrs.  I always have active outbreaks but the "craters" as I refer to them are not as large in size as they used to be.  I never realized it would take this long or that I would seem to get more sensitive thru time.  I didn't really help any with my info but a person thinks they are the only one that this happens to unless they hear that somebody else has the same issues.

[Kalokairi]

Squirmingitch: Thanks a lot for the information about the endoscopy! I had no idea that the damage would be more patchy and that an endoscopy would be more or less useless. Then I no longer see any point with going to the dermatologist....but I've waited for this appointment since early December so at least it will be interesting to see what kind of knowledge he has about DH. I had some hope of getting a diagnosis anyway to be able to work maybe part-time and get financial aid from the state, because if it should continue like this for years I won't be able to work full time...

 

I've seen your pictures and it looks terrible! I can't even imagine how bad you would have felt! Clearly it was more severe than in my case, even though I think I am quite bad off. Strangely enough, today my "flesh eating" wound has started to turn black...but as you say, no infections so far, at least that's a relief! Actually since yesterday many of the wounds on the bend of my arms have disappeared!!!!! Even though the skin is still very red and dry, and I have some wounds left, its clearly an improvement. I haven't had any improvement since this started, it's only been moving around different places on my body....so I think this is thanks to the low iodine diet!! But of course...then today I got some itchy blisters on one of my fingers where I haven't had any before...seems like this disease is never letting you relax. 

 

It's great to hear that you are so much better now! And also it gives me hope that I can sit for a while in the sun in the future. I live in Sweden and because of the dark depressing winters here I love the sun and often go for vacations in south of Europe. It would be the worst thing for me, to have to avoid the sun completely. Also it's a bit strange that we have so little information here about DH, I read that Finland is the country with most DH-sufferers, and I know celiac disease is very common in the Nordic countries. 

 

I will be very careful with eating out then. I went to a gluten free restaurant in Rome for new years eve. They had many awards and great reviews for their gluten free food, but they also had a menu with food with gluten, so maybe I had some gluten accidentally there anyway, I don't know. 

 

Thank you so much for the link to the blog!!! It's exactly this kind of blogs that I use to read, and the scones looked amazing. I didn't have any dried fruit at home though (and I read somewhere that it is high in iodeine?), but I made some nice crackers with almond flour, egg whites and herbs, and they were great!  

 

Mendylou: That's very interesting that you have the same kind of reaction like me! Mine also takes a very long time to heal, and it seems like the white ball comes back after some days so I have to scratch the wound again...which of course makes it very hard to heal. I really wonder what it could be, if it's actually parts of the gluten that comes out from the skin somehow....It's good to hear that avoiding iodine has helped you, because it seems like I have the same sensitivity, and I will definitely continue to avoid it for some more months, and then slowly introduce eggs, etc. So still after 3 years you have outbreaks constantly? That's very sad to hear...In which ways have you gotten more sensitive? To gluten or to iodine also? Can you eat whole eggs for example? How is it for you with the sun? Can you stay out in the sun even though you have outbreaks? 

[mendylou]

In answer to some of your questions, I do eat whole eggs, but not on a regular basis.  I also have always been sensitive to dairy.  I eat some cheese, never milk , some salad dressings that list milk, egg but again not on a regular basis. One food I used to really enjoy was shrimp.  Before this gluten issue became apparent I would notice my lips would get fat & puffy eating certain foods.  I now think the iodine caused the fat lips.  I have not been brave enuf in the past 3 yrs to sit & feast on shrimp but I plan to some day to see what happens.  I hesitate to do that until I am free of a skin breakout.  I enjoy being outside but I have to be careful of sun especially when it is hot and humid or when my skin has active eruptions.  It makes it much worse.  I actually think short exposures to sun when temps are cooler is helpful.  One of the worst things for my skin is when I get hot, my skin gets inflamed and itches terrible.  For that reason it  is hard to go to other people's houses since their room temps are usually higher than what I keep mine at.  I also have my bedroom temp very cool.  The more researching I do I find that gluten has had so many years to build up under my skin, it may take many years to be free of DH.  I & doctors did not know anything about gluten when I had my first breakout.  It was my scalp & I was a teenager.  That was back in the 1960's which was a long time ago.  Sorry this got to be so long. I find it very helpful to share info with people who go thru the same things.

[Kalokairi]

So I went to the dermatologist a few days ago, and as I thought he could not help me much. He suggested that the lesions, dark marks and blisters appeared because I scratch myself because I have atopic eczema....The problem is then that I DON'T scratch before the blisters and lesions appear!! Why would I? Before they appeared on my back for example I've never had any skin related problems there. I also told him this but he didn't say much about it. I don't remember what this condition was called, but I am really sure that this is not the reason why I am suffering so much. 

 

I told the dermatologist that I suspected DH, which he had actually heard about, but he said that he could see that my blood test I had done earlier was negative. I told him that I needed a biopsy to be sure if it was DH and he agreed to do it. Then I was too tired to tell him that it would probably show up negative because I don't eat gluten, so I let him do it and I will have the results in 6-8 weeks. He said they were going to check it in two different ways. 

 

He then printed information for me about atopic eczema (like I didn't know everything already) and prescribed the strongest cortisone creams and light therapy...I just feel that if cortisone creams and light therapy has not helped me the last 8 months, why would it help now??? He also told me to not itch....I will not use the cortisone cream, or do you think I should? I has never helped for the DH lesions, only for eczema but it comes back as soon as I stop. 

 

Now I have been on low iodine diet for a few weeks and I can see some improvements, but I'm still suffering a lot. All the lesions at the bend of my arms have healed and instead it looks like eczema and the area is very red and VERY dry. My legs and back are healing slowly, even though I get a few "bumps" that don't develop into blisters every day. My biggest problem now is that even though the lesions on my neck has healed, my whole neck is SO DRY and red. I put shea butter or coconut oil literally every hour, and after an hour it's so dry that it hurts to turn my neck to the side. I also have gotten some "bumps" on the forehead and the jawline that hurt and itch at the same time (it looks a bit like acne but I've never had acne in my life), and the area around my eyes is extremely red and dry (which I cover up with Protopic). It's terrible for me to have this on my neck and my face because I work part time in a supermarket and it looks like I'm very sick somehow. It looks like I have a white mask or face cream because my neck is red exactly up until the jawline on both sides, and then comes my winter-white face  . 

 

I want to ask you all, if you have experienced the same thing, with very very dry parts that looks like eczema, on your way to heal from DH lesions? Am I on the right path, or is this something else or a bad sign? 

 

I can go several hours without itching now, but then it starts itching terribly for 30-60 min and then leaves again. At least I can sleep well mostly at night which is a relief!! 

 

For two weeks now I've only been eating chicken breast or minced meat with himalaya salt and curry plus sweet potatoes. And also crackers with almond flour, salt and pepper. I drink mostly water and sometimes Pepsi Max which I have read should be completely gluten free. The past days I've also made a smoothie with kiwi, avocado, orange and chia-seeds. Sometimes I also eat an apple. 

 

Is there anything I should change in my diet? Do you have any other advice for me? 

[Kalokairi]

Ok, now I got an appointment for light therapy on Wednesday. I have been doing this three days per week for two months earlier for my "eczema" and it didn't help. I read somewhere that some people's DH have gotten worse from light therapy? I'm really doubting if I should go or not...if I don't cooperate with the dermatologist maybe he will get upset. I have already decided to not get the steroid creams he prescribed to me, but if I also say no to the light therapy I guess the dermatologist would not like to help me again, and I'm still waiting for the results of the biopsy...

 

The itching is worse and I change the skin of my neck several times per day because it's so itchy and flaky. I have also gotten new blisters and lesions and I suspect it may have to do with sals because I've been eating coconut oil and sweet potatoes a lot. I'll go low on sals now also and really hope it will help because I feel I can't stand this much longer. 

[squirmingitch]

There's no problem with sweet potatoes being high sal unless I remember totally wrong.

 

I can't say about the light therapy b/c I've never done it. I read good & bad & certainly didn't want to risk bad so forgot that notion. Remember, the rash can flare any old time it darn well pleases even long after going gluten free so just make sure you're not getting any gluten & then you won't have to keep questioning yourself.

 

Hang in there.

[ItchyAbby]

Hi there,

I'm sorry you are having such a hard time, but I know exactly what you are going through. The doctors and derms I dealt with were all equally clueless. I actually had the last derm I saw say "Welp, I'm sorry but there is nothing more I can do for you." Okay, then!

 

- Ditch the cortisone creams. They may help in the short term but make the rash even worse when you stop.

- Your diet could stand a few tweaks: add more leafy greens (daily), raw and cooked; sip bone broth, either chicken or beef, for minerals and collagen (also daily); replace the Pepsi (too much sugar and bad for you chemicals!) with high quality mineral water; If you have access to high quality, pastured, grass fed meats add those in for variety and to access other nutrients.

- Sweet potatoes are fine as far as sals go, I believe. What made you think to go low sal? It may not be necessary, and it would be a shame for you to cut out even more foods when your body needs nutrients to heal. I know some people felt that it worked for them, but I found it did diddly (I believe squirmy came to the same conclusion)

 

A good tutorial to get you started in broth making: Open Original Shared Link Since you eat chicken regularly, you can use the whole bird!

 

You are in the worst of it and for that I am so sorry. You will get through this. It's hard, I know...the hardest thing I have ever gone through. Try to be patient. It can take a while to see improvement and I know that can be disheartening. It's a two steps forward, one step back kind of process. Take extra good care of yourself: sleep whenever you can, find ways to relax (meditation and hot epsom baths worked for me), just know that some days will be better than others. But with time the good days should become more frequent. I am 9 months gluten free and things are dramatically improved: the rash is not gone but it is so much less itchy and the flares clear up faster. You will get there.

[squirmingitch]

 

- Ditch the cortisone creams. They may help in the short term but make the rash even worse when you stop.

- Your diet could stand a few tweaks: add more leafy greens (daily), raw and cooked; sip bone broth, either chicken or beef, for minerals and collagen (also daily); replace the Pepsi (too much sugar and bad for you chemicals!) with high quality mineral water; If you have access to high quality, pastured, grass fed meats add those in for variety and to access other nutrients.

- Sweet potatoes are fine as far as sals go, I believe. What made you think to go low sal? It may not be necessary, and it would be a shame for you to cut out even more foods when your body needs nutrients to heal. I know some people felt that it worked for them, but I found it did diddly (I believe squirmy came to the same conclusion)

 

That I did Abby! Low sals did nothing for me except limit my diet all to heck & back. 

 

And I will expound on what Abby said about the hardest thing one has ever done in their life. I've been through some unbelievably hard times in my life & this beat everything hands down. This will test your mettle like it's never been tested before. But I made it, Abby made it, Pricklypear made it & dozens of others I could name. You will too. Hang in there & EAT! Abby's food suggestions are great.

[Kalokairi]

Thank you so much for your answers! I didn't go do the light therapy because I felt so weak from not sleeping and itching all the time, I will see if I'll go later. So far it's not better at all, but I decided to try to reduce the sals because I started reading about it and I had been eating some things that was very high in sals like coconut oil, curry spice for the chicken, etc. I think sweet potatoes was on the medium level but I decided to be careful with them also. So far I haven't seen any improvements and I don't know what to do. What is worst is my neck because it's so dry and it's very very uncomfortable to not be able to turn my head to the side because it hurts.

 

Thanks for all the tips about the diet! I will try to make some broth and also eat more greens (even though I read that dark green vegetables are high in iodine I think....I feel like I can't eat anything anymore without worrying...). I also bought a juicer so I'm going to make some healthy juices every day with the fruits and vegetables that I can eat.

 

I just wonder about this very dry skin and eczema. All this started with milder eczema last spring, then the wounds and lesions in early autumn, then I also got this kind of eczema in November/December that I have now, and then it somehow went away. Then I went gluten free in December and it got better first and then worse again with big blisters, lesions and wounds, and now the eczema again, worse than ever, plus some lesions and wounds here and there. I just can't see any pattern in this...I mean I understand that the blisters is the most severe reaction, but then does this eczema mean that I'm improving or not?? Is it better than the itchy lesions, or maybe worse? 

 

How did you get better? I understand that everyone is different, I guess I just need some hope right now that I'm on the right track. 

 

It's great to hear that so many of you have gotten much better! I really look forward for that day to come for me also. This disease really breaks you down completely and there is no energy left for anything else.

[squirmingitch]

Your question, "How did you get better?"

 

You ride it out. It will take you for a ride you have never experienced in your life & you just hang on. There is no predicting this. There is no pattern to this. You can not know what it will do next nor where it will go next nor what form it will take next. You just hang on tight & stick to the diet & don't EXPECT any rhyme or reason because you WILL be disappointed if you do. Try not to take a little improvement today or tomorrow as anything other than a temporary improvement. I know this is tough to conceive & it's tough to go through but like your last line in the above post ~~~ to try to guess what it's doing now or ten minutes from now or 2 days from now is going to sap your energy. What you do is just hang on and one day, one day, it will begin improving & you will not backslide & you will s-l-o-w-l-y get better & then better & then better.

((((( HUGS ))))))