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Hopeful1950

Member Since 14 Mar 2010
Offline Last Active May 14 2013 11:12 AM
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#829118 Night Time The Worst

Posted by Hopeful1950 on 11 October 2012 - 07:43 PM

My rash is always the worst early evening and at night.

The psychiatrist I consulted after 3 dermatologists told me I was crazy explained why (and it's not because little bugs are coming out at night). Although scabies will be more active at night, most rashes will also itch more during the evening hours.

Here's why: When we wake up in the morning our body's natural steroid levels are at their highest and they decrease as the day progresses. This is why fevers are higher at night, flu symptoms are worse, DH ITCHES MORE, etc. etc.

Why does a psych know this when regular docs don't?
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#784287 Dh & Tattoos

Posted by Hopeful1950 on 30 March 2012 - 08:24 PM

I have one tatoo that I had for many many years before my DH blossomed. One and only one that I loved very much and never regretted getting.

Well, when I broke out on my upper back I got a couple of DH spots on the tattoo so I had my husband carefully cover it and I never scratched them even once no matter how bad they itched. It made no difference. They stayed there for at least three months and when they finally healed they had taken the ink out of my tatoo! So here are my thoughts:

1.) Yes, the mere act of getting a tattoo could cause a lovely patch of itching oozing blisters that could possibly result in a strange looking tattoo when all is said and done.

2.) Good tattoo art is expensive and eventually the DH will go there (it seems to go everywhere else)and ruin your investment.

Then there is the autoimmune connection. Scary. Because of that, I won't even get mine repaired as much as I love it.
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#783711 Upset, Confused, Venting, Scared & Frustrated

Posted by Hopeful1950 on 28 March 2012 - 04:05 PM

Oh man I so feel your pain. With this crap it is normal to be abnormal if that makes any sense...

I am coming up on gluten-free about 17 months. I still have itchy scabby places. I still get isolated blisters/itchies here and there.

Some thoughts:
1) Yes, sometimes it just goes crazy for no apparent reason. For me these episodes are getting fewer and fewer. It is hard to make the cause/effect connection because the reaction is often delayed for days. Making my dog gluten free was my final epiphany. Took me awhile to figure that out.

2) Mine seems to move around to different areas of my body. Right now it is coming up all over my back, but is getting better on my behind and arms.

3) Have you started any new medications? I took Actonel (for bones). It kicked my DH into high gear. I looked like I had acid burns all over my body before I figured it out. Many medications have some form of iodine and/or gluten in them

4) I have noticed problems with chocolate. Not sure why. Maybe even though gluten free, there is something going on in the processing maybe? When it comes to food I am finding that packaged/prepared foods can be a problem unless they come from a facility that tests each batch or a facility that is certified.

5) Irritation. If I get a burn, cut or bruise sometimes I'll get a crop of itchies.

6) Ointments and potions to get relief: It took me awhile but I figured out that I am sensitive to neomycin and bacitracin (antibiotics). I really have a problem with pramoxine (itch stopper). When I used Neosporin + Pain it was a nightmare. I recently read an article in a Dermatology E-Newsletter talking about how common it is for people to react to these things. Well gee...wish I had known. I probably prolonged my misery.

I really feel like DH has a life cycle that is not really clear to anyone. I am always amazed when a lesion that has blistered over and over for months just up and heals almost over night.

Yes...grrrrrrr :angry: and MAJOR whining from me also. Coming up on my 8th summer in long pants and long sleeves.
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#764300 Unresponsive Dh To Gluten Free Diet?

Posted by Hopeful1950 on 12 January 2012 - 08:18 AM

This discussion is definitely thought provoking and while I was lying awake itching last night I started thinking about the fact that some of the information I have seen about this frustrating condition indicates that it may not be completely due to celiac/gluten sensitivity. So, no surprise that some of us are having a tough time getting rid of it. I went out to the web and gathered some examples that seem to indicate that, although it can (frequently) be associated with celiac, the cause is unknown.

From WebMD
“Dermatitis herpetiformis, also known as Duhring disease, is a rare, chronic, skin disorder characterized by the presence of groups of severely itchy (pruritic) blisters and raised skin lesions (papules). These are more common on the knees, elbows, buttocks and shoulder blades. The exact cause of this disease is not known although it is frequently associated with the inability to digest gluten (gluten sensitive enteropathy [GSE] or celiac sprue)”.

From MedLine Plus
"The cause is unknown. However, dermatitis herpetiformis is frequently linked to gluten sensitivity (celiac sprue disease) in the small bowel”.

From TrueStarHealth
"Not all people with DH improve on a GFD and/or medication. Preliminary studies indicate sensitivity to other dietary proteins may be involved. Some practitioners would recommend an elimination diet and/or allergy testing to check for other food sensitivities.

From SkinCareNet
“Dermatitis herpetiformis is frequently associated with sensitivity of the intestine to gluten”

Frequently doesn’t mean always, right? So it is reasonable to conclude that casein, salicylates, other grains, MSG, etc. could also be culprits.
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#748019 The Obligatory "is This Dh?" Post.

Posted by Hopeful1950 on 16 November 2011 - 07:14 AM

It's hard to tell because DH can present very differently on different people and depending where on the body it is.

I can only tell you how mine behaves...I feel a sensation of kind of prickly and itchy, then small itchy red bumps appear. If I have managed not to scratch them they will have little fluid filled blisters on them. Most of the time I can't see the blisters with the naked eye. I need a magnifying glass. When you get a new patch do you have someone who could take a look with magnification? The blisters are very fragile and break easily, even from clothing rubbing, so it might take a few tries.

Here is a link to some of the best pix of DH I have ever seen: DH photos

The "hairy eyeball"...I cracked up :lol: . I've been getting that for 8 years. It's hard to get a correct diagnosis if you have DH, and I'm beginning to think it is not only DH, it is any "non-specific" rash.
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#726135 Pictures Of My Rash

Posted by Hopeful1950 on 28 August 2011 - 02:29 PM

Massively itchy, specially the one on buttocks... I end up in a bad way with that one... Dou you mind me asking if you've been diagnosed?


Dermatologists (3) were stumped. Called it "stress eczema". One biopsied, but was not looking for DH. Finally ended up at an allergist (after 8 years of suffering) and he tested me to see if I had food or contact allergies. All tests negative. He thought it looked like DH, so he ordered a blood test for celiac. It was negative which is not unusual for people with DH. I then went on-line and did a test with EnteroLab where you send off a stool sample. It came back positive that I was reacting to gluten. They also ran a test for celiac genes and I have two. Took these results back to the allergist and he said it was conclusive enough for him. I went gluten-free. I have never had the skin biopsy repeated because I just can't deal with the dermatologists. They just don't seem to want to listen.

My behind rash was the worst! So uncomfortable to be sitting on your itchy bits! Going gluten free really helped with the itching. It is taking longer to stop blistering and for the older lesions to completely heal. I can really tell when I have been glutened or have consumed iodine because that awful itching starts. It will keep me awake all night long.

Good luck with your testing.
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#720554 Took Chlorophyll

Posted by Hopeful1950 on 03 August 2011 - 12:31 PM

I have problems with Neosporin. Regular and also the one with Pramoxin (topical pain reliever) in it. I have heard that many people are sensitive to the neomycin. It makes my lesions more itchy.

I use Polysporin instead and avoid all products with Pramoxine. The Polysporin is an ointment so it works to keep the lesion moist.
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#720424 How Many Have Dh, Really?

Posted by Hopeful1950 on 02 August 2011 - 09:34 PM

Eatmeat4good:

AMEN!!! None of us would recommend not trying to find a doc who can help, but you finally have to take the bull by the horns and take care of yourself. If a person has suffered for years and is not getting answers what harm can a gluten free diet do? It certainly can't hurt! If I had just been more proactive I would have saved myself 8 years of itching, oozing, stinging, scarring, suffering in long sleeves and long pants in 100% heat, isolation, depression, shame, exhaustion from not sleeping due to the itching. If I had gone gluten free 6 years ago, I would be in Hawaii right now rocking my bikini instead of locked up inside hiding my ruined skin. Instead of asking how many really have DH, maybe the question should be how many of us are lucky enough to get a diagnosis early in the course of the disease? I always wonder how many people are suffering in silence the way I have.

Thank God for this forum. I think we could give seminars to the doctors! :lol:
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#717593 What Do I Have?

Posted by Hopeful1950 on 20 July 2011 - 06:41 AM

I gave up on dermatologists after going to three of them who just told me "don't scratch" and "apply this cream". One of them biopsied right in the middle of a lesion (wrong!). I knew that it was something I was eating, so I went to an allergist. He ordered the celiac panel (blood test) and did extensive allergy testing. He suspected celiac due to the appearance of the rash. All of the allergy tests came back negative. By process of elimination he still felt it was celiac. The blood test then came back negative. Further research indicated that a negative blood test is possible with DH in a certain percentage of patients. There was no way I was going back to a dermatologist so I ordered a test from EnteroLab on-line. They tested for the gluten sensitivity and also did a gene test. The EnteroLab test indicated I was having active dietary gluten sensitivity and also had two genes predisposing me to gluten sensitivity/celiac. My allergist felt that the test results from EnteroLab were conclusive enough so I immediately went gluten-free.

In answer to your question, I think any doctor can order the blood test, but a dermatologist would need to do the skin biopsy unless you stumble across a family doc who knows how to do it correctly.

I had to pay for the EnteroLab test myself because my insurance wouldn't cover it, but it was worth it.

My advice to you would be to get copies of your test results and find out if they were looking for celiac. Find out if the dermatologist biopsied correctly. If you feel that you have exhausted all avenues with the docs you can always go strictly gluten/iodine-free and see if it helps you. If you research these forums you will find all kinds of information about how to do it. There are also many resources available both on the web and in books.
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#716356 How Many Have Dh, Really?

Posted by Hopeful1950 on 14 July 2011 - 10:03 AM

I think it is the luck of the draw finding a dermatologist that is experienced with DH. I saw three of the top derms in my city and none of them snapped. In desperation I ended up at a psychiatrist who sent me to a buddy of his, who is an allergist, for help. The allergy doc figured it out.

I also think it has to do with the fact that they spend maybe 10 minutes with each patient in order to squeeze as many into the day as possible and sometimes they make a snap diagnosis. How do I know this? I work for docs, and I know the inner workings of a busy practice.

In many cases the rash can mimic acne, eczema and other things and therefore is misdiagnosed initially. In other cases (especially if you are a woman of a certain age) the initial diagnosis is that you are "neurotic" and the fact that you look like a pizza is somehow your fault. Believe me I have heard it all.

So, in conclusion, I'd have to say that it is likely that there are many cases of DH that go undiagnosed for many years and in many cases are never diagnosed correctly. For me it was 8 years of intense suffering before I got my answer.

I think this forum continuously encourages people to seek proper testing and a definitive diagnosis before embarking upon a life of gluten-free living. But...there are times where folks just can't seem to hook up with the right doc due to location, lack of insurance, etc. In those cases the forum is very helpful with tips and suggestions. I wish I had found it sooner. If I had, I might have been able to nudge the derms in the right direction. It would have saved me years of misery.
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#676326 Dapsone Reaction

Posted by Hopeful1950 on 18 February 2011 - 07:30 AM

I am so sorry to hear about your reaction. I was really hoping that you would be successful with the Dapsone.

Ditto to what Richard said. If you feel like you need to be seen immediately, head for the ER, urgent care or call 911.

Regarding your question about Prednisone. My DH flared up alot when I went off Dapsone and I took a round of Prednisone to get relief. If your doc feels like Prednisone would help the drug reaction, you might kill two birds with one stone by taking a round.

Good luck keep us posted about your progress.
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#669226 Dh - Timeframe Between Ingesting Gluten And Dh Lesions Appear

Posted by Hopeful1950 on 20 January 2011 - 08:46 AM

It is my understanding that the iodine causes existing antibodies (that have been previously caused by gluten)to flare into sores so it shouldn't cause further damage to the gut. The bodie's reaction to gluten in the gut is what causes the damage. I think I recall reading that sores in the mouth are not as common, but some people do get them.
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#599573 Can Dh Be Mistaken For Hives?

Posted by Hopeful1950 on 19 March 2010 - 04:41 AM

I'd like to respond to the question about whether a dermatologist can "not get it right". You bet. In my experience of what appears to be a DH rash I have been told it was "stress eczema", that I was a "picker", and most recently I have given a medicine for bi-polar disorder! I consulted a psychiatrist at that point and he sent me to an allergist who is really looking at everything. The first doctor to do so in 6 years.

Encourage your friend's mom to get to a physician (maybe an experienced allergist) who will not give up until they have actually tested for the all the things that could be causing the child the problem. The allergist I am working ran tests for celiac, thyroid, allergies and a host of other things that might not be related to allergies at all so he can steer me in the right direction if he is unable to help. Skin testing is next.

Oh...and just a note, I work for 22 physicians and trust me their skill and patient care varies widely. Search and search until you find one who will take the time.
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