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jcolding

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Alright. I have suspected for over a year now, that I have gluten intolerance or maybe coeliac.

I am of welsh/irish/scottish/danish descent (already a strike against me),

I had hives often as a child,

and in the past few years:

chronic dark circles

horrific sinus and ear infections all my life

gastro symptoms that a doc attributed to dairy in my childood (I am NOT lactose intolerant)

dry chicken skin patches on my arms and sides

I have had serious hair loss episodes

sharp debilitating stomach pains that will curl me into a ball

Serious GERD that would burn into my throat at night, and leave the feeling that there was something stuck in my throat

Numbing in my lips and toes

major fatigue

phases where I would just itch like crazy for no reason (possibly eczema, as well)

Itch scalp- I would itch it, and sometimes be left with sores on my head. No signs of dandruff or otherwise.

depression

brain fog

concentration issues

serious anxiety (not due to environmental stressors)

and THIS rash... that just won't go away.. (sorry... the pictures are wonky cos I took them myself)

http://www.flickr.com/photos/65057049@N07/5924221772/in/photostream

http://www.flickr.com/photos/65057049@N07/5924220002/in/photostream

http://www.flickr.com/photos/65057049@N07/5924218234/in/photostream

I had no explanation for any of these symptoms, that seemed to appear at random throughout the length of my life. I had no idea or inkling or dream in my life that it could be Coeliac until I met a girl in a Wholefoods aisle and she was describing these symptoms that I knew I had too. My mother has had serious issues with her stomach/acid reflux for ages. She just had a cancerous polyp removed from her colon. She thrived on Atkins and went back to not feeling so good after she got off of it. I feel maybe there's a connection.

A little about the rash... It pops up out of nowhere, and it doesn't seem like acne, because while it forms a blister, it's kind of solid, almost... doesn't look like a typical skin eruption. It's not extremely itchy... but itchy enough that I am compelled to scratch pretty regularly. Once I do, it's often painful. My back has turned into a nightmare. It is also happening on my neck and next to my ears. They're so weird. For the most part, I've always had pretty clear skin. Nobody in my family has ever had a lot of acne, so I couldn't sort out why I would. I stopped eating gluten for almost two months, and my back started clearing. You're looking at the results of reintroducing it into my diet, two weeks ago. I am also not careful about cross contamination. I thought I was merely gluten intolerant, but this makes me wonder if it's not coeliac.

I am almost sort of hoping this is DH, because I have no insurance and have no other solid way of being tested for coeliac. The past two years have been really brutal on my health, and as soon as I stopped eating gluten... my whole life turned around.

Thank you for the help!

Cheers

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You're a walking poster child for celiac and dermatitis herpetiformis. You should definitely get blood tests and have a dermatologist biopsy several of the lesions on your back (he/she should perform the biopsy on clear skin right NEXT to a lesion--if the biopsy is of the lesion itself, it will come back negative). If the bloodwork and/or biopsy is positive, you have your answer. If the biopsy for DH is positive, you won't need an endoscopy to prove you have celiac.

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You're a walking poster child for celiac and dermatitis herpetiformis. You should definitely get blood tests and have a dermatologist biopsy several of the lesions on your back (he/she should perform the biopsy on clear skin right NEXT to a lesion--if the biopsy is of the lesion itself, it will come back negative). If the bloodwork and/or biopsy is positive, you have your answer. If the biopsy for DH is positive, you won't need an endoscopy to prove you have celiac.

So... the lesions do look like DH, then? I'm a bit confused about them, because when I see up close photos on google (from what I presume to be a rather serious case)... they look a bit like what you would see if you got a blister on your foot from an ill fitting shoe. Mine are more solid than that, and not very watery.. though they can be. They tend to pop up in clusters, but also individually. They are itchy... but not as itchy as the way I feel many people are describing. I just want to have a really solid idea before I go see a doctor, because I am an uninsured college student, and I quite literally cannot afford to throw money down the drain on testing that comes up inconclusive. :/

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To be honest, they resemble the DH that I used to get on my face and neck. Initially, they present as blisters, and that's when they're particularly itchy. Once they break, they tend to hurt (the way a cold sore can feel--the underlying tissue actually hurts). Then they simply don't want to heal. They scab over...and over...and then form thick mounds of scar tissue (usually a purple color). To me, they felt like round, hard lesions after the blisters broke.

It sounds as though you don't have a lot of money to spend on the medical runaround. If you really want the "answer" and not spend any money, simply go on a strict gluten-free diet. Also eliminate iodine from your diet (drink organic rather than regular milk, use non-iodized salt, avoid chips and french fries because they might contain iodized salt, and avoid asparagus), since iodine is generally needed, along with gluten, to aggravate DH. You should have your answer fairly quickly.

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To be honest, they resemble the DH that I used to get on my face and neck. Initially, they present as blisters, and that's when they're particularly itchy. Once they break, they tend to hurt (the way a cold sore can feel--the underlying tissue actually hurts). Then they simply don't want to heal. They scab over...and over...and then form thick mounds of scar tissue (usually a purple color). To me, they felt like round, hard lesions after the blisters broke.

It sounds as though you don't have a lot of money to spend on the medical runaround. If you really want the "answer" and not spend any money, simply go on a strict gluten-free diet. Also eliminate iodine from your diet (drink organic rather than regular milk, use non-iodized salt, avoid chips and french fries because they might contain iodized salt, and avoid asparagus), since iodine is generally needed, along with gluten, to aggravate DH. You should have your answer fairly quickly.

Mine I don't think are ever watery enough to "break". That could be because I have gotten into the bad habit of itching at them. It's weird... I can understand the round, hard, flat lesion that goes dark/purple and never wants to heal. That happens a lot. But they never balloon up into wet, blistery things. They're drier than that. This is the closest picture I can find of DH that kind of shows the texture: http://www.doctortipster.com/wp-content/uploads/2011/05/DermatitisHerpetiformis1.jpg

They also tend to be somewhat small.... but not always. Gah. I'm at a loss. :/

I've pretty much been on a gluten-free diet for most of the time. I follow a traditional diet (a la Nourishing Traditions), so no unnatural/fried foods or bad salt... all dairy is organic, if not raw. I read that seafood has iodine in it though, as does fish oil. Does that mean I need to get rid of seafood for a while?

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Hi jcolding:

Yes, it certainly seems like it could be DH. Lot of people have symptoms that don't resemble typical DH. And sometimes the non-typical symptoms simply presage a DH condition that is getting worse. Or something that isn't DH but still results from eating gluten.

Re: iodine.

Rosetrapper and I have a somewhat different take on it. Avoiding iodine doesn't have a big effect for me. And in my opinion it is risky to mess with iodine in the diet, because it is so important to our health. You can read the pros and cons by checking out some earlier discussions.

Re tests.

Personally, once I became convinced that I had DH, nothing could have induced me to eat enough gluten to generate an antibody response.

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Regarding iodine, I do believe it is dangerous to eliminate it from your diet for a long time. However, in order for the lesions to go away sooner rather than later, eliminating iodine is a must. And, yes, seafood must go for the time being.

When I was 34, I made the connection to iodine, but not gluten. I realized that the milk in our area was high in iodine, and when I eliminated it, the DH went away for the first time in years. I had read an article that said that an itchy rash can occur from eating iodine and that iodine could be found in dairy. I knew that iodine caused a rash in me....but I had never known about dairy (this was before the internet). Anyway, once I gave up dairy and was careful to avoid iodine, the rash went away--and stayed away. As long as I avoided iodine, I could eat gluten with no problem. Years later when I found out I had celiac disease, I read about the connection to DH and how gluten and iodine together can cause it. After going iodine-free for nearly 20 years, I developed Hashimoto's Thyroiditis, and my meds contain iodine. As a result, if I ingest even the small amount of gluten, I break out in DH blisters because iodine is always in my system. It's like being between a rock and a hard place. You're going to have to choose. If you decide to eliminate iodine for now, you'll need to add it back in slowly someday...or you may end up with a thyroid problem the way I did.

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Regarding watery blisters: mine rarely are big enough to see with the naked eye. What happens is that a patch of skin starts itching and if I catch it soon enough I can see the little water-filled blisters with a magnifying glass. They are fragile and they break right away from my clothes rubbing or even very light scratching. Many of the images you'll see of DH show the blisters, but I think they are magnified. Occasionally you'll see one where someone has huge water-filled things. My bumps are quite tiny. Sometimes in groups and sometimes alone. The ones in groups tend to be worse and last longer.

For me iodine is a factor. If I get a large "hit" of iodine I blister soon after. I have not eliminated it entirely due to concerns about thyroid. I just avoid things that are high in iodine like asparagus, eggs, dairy that is not organic, seafood. Also, some medications are high in iodine (sometimes as povidone). Actonel for bones is one that is really bad. When I took it I looked like a pizza all over.

My understanting of the iodine connection is that it takes gluten to create the antibodies and then iodine can cause them to blister your skin. Once you have been strictly gluten free for long enough and no longer have antibodies in your skin, iodine should be no problem. Keep in mind that it can take quite awhile for the antibodies to clear from your skin so relief from your symptoms can be somewhat gradual after you go gluten free. It can take up to two years, but some people get relief much sooner. I think it depends on how long you have gone undiagnosed and how severe your rash is. What keeps me honest is that I read somewhere that some of the antibodies can stay in your skin for up to 10 years, so when I want to slack or cheat I think about creating new antibodies and starting the clock all over again. So far no food has been worth the chance.

I did look at your pictures and I think you probably are on the right track. It looks at lot like mine looks.

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Regarding watery blisters: mine rarely are big enough to see with the naked eye. What happens is that a patch of skin starts itching and if I catch it soon enough I can see the little water-filled blisters with a magnifying glass. They are fragile and they break right away from my clothes rubbing or even very light scratching. Many of the images you'll see of DH show the blisters, but I think they are magnified. Occasionally you'll see one where someone has huge water-filled things. My bumps are quite tiny. Sometimes in groups and sometimes alone. The ones in groups tend to be worse and last longer.

For me iodine is a factor. If I get a large "hit" of iodine I blister soon after. I have not eliminated it entirely due to concerns about thyroid. I just avoid things that are high in iodine like asparagus, eggs, dairy that is not organic, seafood. Also, some medications are high in iodine (sometimes as povidone). Actonel for bones is one that is really bad. When I took it I looked like a pizza all over.

My understanting of the iodine connection is that it takes gluten to create the antibodies and then iodine can cause them to blister your skin. Once you have been strictly gluten free for long enough and no longer have antibodies in your skin, iodine should be no problem. Keep in mind that it can take quite awhile for the antibodies to clear from your skin so relief from your symptoms can be somewhat gradual after you go gluten free. It can take up to two years, but some people get relief much sooner. I think it depends on how long you have gone undiagnosed and how severe your rash is. What keeps me honest is that I read somewhere that some of the antibodies can stay in your skin for up to 10 years, so when I want to slack or cheat I think about creating new antibodies and starting the clock all over again. So far no food has been worth the chance.

I did look at your pictures and I think you probably are on the right track. It looks at lot like mine looks.

Thank you so much for the answers, guys. I've been so stinkin confused. I have all of these tiny red bumps all over my back a lot of the time. it's really sounding similar. My boyfriend insists it's probably acne, cos they don't look like the giant bulbous blisters on the internet, but I know it's not acne... it's nothing like acne. It's the weirdest stuff. I reckon maybe mine presents a lot like yours. I'm currently testing out a strict gluten-free diet, and the bastards seem to be disappearing from my skin by the day. I still plan on getting tested formally when time permits. I want to know if this is really what I think it is.

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Iodine is NOT good for people with Hashimoto's. There is information about it at thyroidmanager.org in Chapter 8, the Hashi's chapter. For those not familiar with it, thyroidmanager is an online textbook written by endocrinologists FOR endocrinologists.

There is thinking that it is too much iodine, not too little, that can help precipitate Hashimoto's, although there is also a genetic component. I've known several people on another forum who reported that iodine was extremely irritating to the thyroid area of their neck.

It would seem logical, then, (though I have not researched this at all) that iodine is not good for DH either, given the connections between autoimmune thyroid and celiac. Just thinking out loud...

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Is there other ways to speed up the healing process? other than avoid gluten and Iodine? anyone try taking Zinc to help with healing process? I'm a newbie to DH and had bumps all over my back and legs. I hope I get to enjoy the summer before it ends.

Megan

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So... the lesions do look like DH, then? I'm a bit confused about them, because when I see up close photos on google (from what I presume to be a rather serious case)... they look a bit like what you would see if you got a blister on your foot from an ill fitting shoe. Mine are more solid than that, and not very watery.. though they can be. They tend to pop up in clusters, but also individually. They are itchy... but not as itchy as the way I feel many people are describing. I just want to have a really solid idea before I go see a doctor, because I am an uninsured college student, and I quite literally cannot afford to throw money down the drain on testing that comes up inconclusive. :/

My DH doesn't look like the pictures of it that I have googled.

Do they weep when you scratch them and then hurt and still itch while they hurt and you want to scratch but you know it's gonna hurt but you can't control yourself?

Do you get up in the middle of the night and grab a brush or anything similar and just scratch the living hell out of yourself? If so, then yeah, it's probably DH if it cleared when you went gluten free.

I self diagnosed a few days ago. Went to health foods, bought a flush and doing my best to avoid gluten at all costs.

BTW my Mother had colon cancer and awful gas all her life. I now think she was intolerant to G.

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