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Am I Doing Something Wrong? Can't Take This Anymore.
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Ok so the bleeding DH on my back is pretty much scabbed over but now it is ALL over my chest and shoulders and some on my face cheeks and rear cheeks. I am not eating gluten..unless I am being CC somehow. It burns so badly, I can't wear a bra and my shirt actually hurts that it makes me cry.

If I am not eating gluten, why the DH, I don't get it.

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Have you tried iodine elimination? A lot of DH'ers find it makes it a zillion times worse. And DH hangs around for a long time, unfortunately. :( - longer than GI antibodies, that's for sure.

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I haven't tried low iodine yet....It sounds next to impossible. Isn't there salt in everything? I will if I have to though.

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I am working on this myself. It is almost impossible but it can be done. Apparently most salt is NO iodine in stuff you buy. But sea salt isn't. I bleed so bad it scares me. I thought I was dying the first time my leg bled it was running into the toilet I was scared to death. The Derm was like....Oh it happens..>WHAT?

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I feel your pain Gluten-Free. I'm going through one of those myself which began in early Sept. & stillllllll going. I think ....... but won't finish the sentence for fear of jinxing myself. :lol: :lol: I did that once before & actually said it & BAM! the dh went nuts. So shhhhhhhhhhhhh......

Okay. DH can present at any time for up to 2 years ( & some references say :ph34r: 10 years :ph34r: :ph34r: :ph34r: ) after going gluten-free. The antibodies have to get out of the skin. So this can happen & no, you're not doing anything wrong. If my hubs & I didn't have a gluten-free household & we did not prepare ALL our own food, 99% of which is whole foods; then I would be totally freaking (okay, I am totally freaking but not b/c I think I've been cc'd) thinking that I was getting glutened from somewhere. But since I am 110% positive I'm not getting gluten from anywhere then I know this is just what it does.

NOW. What I would really like to know is how the freaking antibodies get out of our skin? I have never found any reference for that. But if I had any clue & could help it along....... Boy & HOWDY ---- I would do whatever it was! WHATEVER!!!!!!!

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NOW. What I would really like to know is how the freaking antibodies get out of our skin? I have never found any reference for that. But if I had any clue & could help it along....... Boy & HOWDY ---- I would do whatever it was! WHATEVER!!!!!!!

Leeches come to mind :rolleyes:

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Leeches it IS! I'll run right out tomorrow & get a couple thousand. :lol: :lol: :lol:

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Ok so the bleeding DH on my back is pretty much scabbed over but now it is ALL over my chest and shoulders and some on my face cheeks and rear cheeks. I am not eating gluten..unless I am being CC somehow. It burns so badly, I can't wear a bra and my shirt actually hurts that it makes me cry.

If I am not eating gluten, why the DH, I don't get it.

I found I was eating what I thought was corn chips and found out later the restaurant had changed to flour/corn chips. Maybe you can review your food intake? I was a salt freak and stopped using any salt unless it was sea salt w/o iodine. I am on Dapsone and I really feel it has been a life saver for me. I suffered for 7 months the intense itch, sting, burn and yes the blood. It seems these lesions bleed more than anything I've ever experienced. Must have something to do with the properties of DH.

I'm having a bit of a new breakout (in the place of healed lesions) on my lower back. I've been applying Tolnaftate 1% to dry these places. It has petroleum to smooth it on. . . seems to dry but not flake.

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I think that I am eating totally gluten free. I only eat a few processed things that are gluten free. I guess it just takes tine for the dh to go away.

I appreciate all of the help.

Do any of you not feel well when the DH is really going? I'm just really tired and achy and have no energy.

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I think that I am eating totally gluten free. I only eat a few processed things that are gluten free. I guess it just takes tine for the dh to go away.

I appreciate all of the help.

Do any of you not feel well when the DH is really going? I'm just really tired and achy and have no energy.

Yes, I find that happens to me too. Also I have noticed that when a dh flare is really getting going I actually have a little bit of a temperature. The temp. goes back to normal in a day or two.

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Same here with the low temp. Blows that we have to deal with this but it really is comforting to know that we are not alone in it all.

Do you ever get DH on your scalp? MIne is now coming down my forehead. I look and feel awful.

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Oh Gawd! The scalp!!!!!!!!!!!!!!! It's horrid just horrid! There are crusts & where there aren't crusts there is oozing. The hair gets stuck to your head. I will wake at night & the pillowcase is so wet with oozing I can't find a dry place for my face. In the morning the pillowcase is stuck to the pillow. It's disgusting & makes me feel disgusting. I've taken to washing my hair each & every night b/c the more dried ooze & crusts that build up seems to be the more it itches. I get ones just out of the hairline & they look awful. I have also had tiny, quick ones on my face & so far....... I live in fear of the day I get big old honkers on my face.

And my ears....it gets in my ears, on the edges of my ears, on my earlobes, INSIDE my pierce hole of the earlobe.

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I've actually been doing pretty good, thankfully! Even itching behind the knees is a rare thing for the last couple of weeks. I think I may be absorbing iodine better. For salt, I've been using the Morton canning & pickling salt. It has NO additives, not even for anti-caking. I quit sea salt for a while, went back to it for a bit and think I had some issues with it. Otherwise I do eat salted butter and eggs with yolks just fine. But I did have some issues with 1 brand of butter I tried, so there was something in there that bothered my system.

I did want to add that I'm still avoiding the sulfites, as well as MSG type ingredients. That helped a ton, also.

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Just one more thing to look at...some laundry soaps may contain gluten. I know Whisk is one of them.

Stress can also bring out DH. Maybe the stress of the holidays brought yours out? I hope it goes away for you. It's miserable!

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I too have rashes--have for awhile. It definitely got better when I went gluten-free, peanut free, and although I don't do the "low iodine diet"--I do not add *any* salt (or spices) to food...I only use pepper. At first, I thought things tasted bland--now I like it. When I do eat something that hubby fixed with salt--my rash gets more inflammed.

Another thought--this may or may not apply to anyone but--we can have other allergies that give us crusty, itchy, scaley, bleeding and oozy rashes. I found out my cell phone cover (rubber) was affecting my ears/neck/. I changed shampoo, conditioner, hair dye, and laundry soap a long time ago--but still had the rash on my neck, ears, forehead. It appears that contact allergies "spread" and go "further" than just where the contact of it is.

Now, I am working on getting rid of the rubber in my house (easier said than done)--cell phone case is gone--and in almost two days my ears are better since getting rid of it :D Shhhhh ;)

But, I still have a rash on my forehead--Guess where I found rubber elastic??? Last night--on my shower cap that is right where the rash on my forehead and scalp is (I also lost hair there too) :rolleyes: Sooooooooooooo, I am skipping on the leeches :lol: and buying a new hairbrush (new one with no rubber on it) and looking for something to cover my hair at pm for when I wash my face... Today!!! :D

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Well, if iodine is in salted processed foods, and if your only possible source of CC is processed foods, you can kill 2 birds with one stone right there.

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Are you eating anything with vanilla in it? While I don't get sick like a real glutening, I itch! It is the kind of vanilla that is supposed to be safe for us. Dairy and soy also give me gluten like symptoms, itching, dry skin, hair loss, sleep problems, etc. So, no gluten, including vanilla and white vinegar, no soy and no dairy... skin and hair does great and no itching.

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    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
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    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
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