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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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    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
    • I have been on a gluten-free diet for exactly one-year. During that time, I have had no stomach issues or problems when I inadvertently ingested gluten. The other day, I had GI discomfort (no vomiting or diarrhea) and my blood pressure spiked t0 200/98 (normally 119/75). As my GI discomfort subsided, my pressure crept back to normal. This took about 16-hours. I know that I ingested something with gluten, which I had thought was gluten-free.  It never bothered me before. Should I expect that the longer I'm gluten-free, the more susceptible I will be to having a pronounced reaction to inadvertent gluten exposure? Has anyone else had similar experiences with blood pressure spikes?
    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
    • AdrienJ, thank you so much! I dream of traveling more one day. I have spondylitis too. I'm so glad that a gluten free and casein free diet is helping you feel your best!
    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
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