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Finally! A Great Doc
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5 posts in this topic

My history:

10 years with blistering insanely itchy rash.

8 years of being told I was "stressed" "neurotic"

A little over 2 years strictly gluten free after being evaluated by a really caring allergist who by process of elimination and many years of seeing folks with DH made a diagnosis and agreed to help me try to manage it because I could not bring myself be shamed by yet another dermatologist.

2 celiac genes, Enterolab testing showed positive reaction to gluten.

Two years of gluten-free has resulted in a reduction in itching, oozing lesions from about 150 to 24.

Recently consulted a new derm to see if there was any help for the ravages DH has wrought on my skin.

I'll try to be brief, but thought this was important information to share:

This doctor actually asked me how certain I was that it is DH and when I told her 95% and my reasons,she agreed with me. Can you believe it !? She listened and heard me! She also called one of her partners and a nurse practiioner to have a look and we all discussed my history and experience with the rash. They were awesome.

Based on the appearance of my skin (after 2 years gluten-free) she said that I could have something else going on in addition to DH. After many years of trying different things to control the itching, and the damage from scratching in my sleep, the mantle of the skin can become damaged which can leave one open to a secondary eczema. So she biopsied my most recent itchy spot and a place adjacent to it (yeah!). BUT only after she made me go three weeks without any steroid cream anywhere on my body. I was so jazzed because I knew instantly she was looking specifically for DH on one of the biopsies.

I blistered everywhere on and around the biopsy site and sent her an e-mail with pix attached. She called me in right away so whe could have a look because it had the classic DH appearance. As luck would have it my test results were back by the time I got to the office, but they were negative for DH! This after a big ole itchy blister rose up right between the biopsy sites! She said that doesn't mean I don't have DH. The results were positive for eczema.

Now here is the part that is interesting to me: We have read over and over that DH is a diagnosis of celiac disease. Recently on this forum I have seen a few posts where doctors have said that DH is strongly "associated with" celiac. This doctor, who is very experienced with DH, who actually "likes the challenge of rashes", said that about 10% of people with DH do not test positive for celiac (either in the gut or in the skin), but it is still considered DH and the treatment program is essentially the same. They are not sure why this is. Does this mean a variant of DH that is not celiac...again they're not sure. These are observations of derms who are seeing patients with DH. This doctor is not B.S.ing me, I'm sure of it.

She supports my decision to remain gluten free and is now helping me to try to achieve final healing on the spots that remain on my skin by implementing a program of skin care that is used with eczema patients.

If only all those who have suffered years with this miserable curse could have found someone like her early on. Even at this late stage I feel so lucky to have someone partnering with me going forward.

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Hi Hopeful (I sense that this post means you are even more hopeful!) Does this mean you would consider yourself a non-celiac sufferer of DH? So DH attributed to something completely different? '10% of people with DH' is quite a significant percentage, and it sounds like they don't know more than that...interesting.

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I think "non-celiac" means that all testing is negative and there are no GI symptoms. She did say that they are not sure whether it is due to the fact that DH patients often have patchy (or no) damage in the small intestine and a positive skin biopsy requires hitting the right "target" so biopsy could be negative much of the time. They haven't figured it out definitively. She supports me remaining strictly gluten free since I have improved so much over the last two years.

Yes I am MORE Hopeful :lol:

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Very interesting! I am so glad you have found a supportive doc. Yay for persistence! smile.gif

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It seems that those of us with DH often get negative test results for Celiac's. To me it seems the standards are not set correctly. My blood work and biopsies continually come back negative, but my rash pictures certainly show DH in viewing. I have suffered for three years. I have been on a steroid cream or ointment since my first year. Most prescription strength steroids don't seem to help much. However I am seeing a team of Dermatologists through one of the local University School of Medicines in our city. Two of the derms keep saying (under their breath) Dermatitis Herpetiformis. They agree it is an autoimmune disease, and are treating it as such. They are supportive and they are puzzled as to why the tests come back negative too. They are trying. They have encouraged me to go on the Gluten Free diet as they know this is the best way to treat this condition regardless of the test results. I feel like I am getting the right kind of attention from them.

However, I have taken it upon myself to go Gluten Free no matter what. I am still learning about it! I think I am getting some cross contamination as I still have up and downs with the stomach issues, and just recently a few spots on my skin have increased in the itching intensity and have red bumps in some new places. However some of my older spots are trying to clear up. I see an improvement.

I also made an appointment to see a Gastroenterologist I saw almost ten years ago for stomach issues I had back then. He's familiar with Celiac's. I certainly want to see what he has to say once I hand him my medical history since I last saw him.

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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
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