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Going To Dermatologist
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6 posts in this topic

Im going to the derm doc Monday cause i have DH and have had this since i was diganosed with Celiac last March and no one has been able to help me, I have sores in Mouth and get them on my back also, what can i expect when i go there and what do i need to tell him? thanks

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Beware of costs. If your doctor wants to send a biopsy to a lab, be sure to inquire about the cost. My doc sent my biopsy to the Utah and I got a bill for about $600.

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I have an HMO so costs weren't an issue. The dermatologist had me come in when I had actual blisters and he took biopsies of each of my elbows. I guess he took the samples from skin right around the lesions. I was using an ointment for the rash already but it didn't always work. When the DH biopsy came back positive he told me I had celiac disease and he could put me on Dapsone, but it has serious side effects. He told me the best cure was to be gluten-free and he wanted me to research the gluten-free diet on the internet. He set me up with a dietician and a GI dr also. I have learned that the rash comes and goes. There are times when I'm totally clear, and other times when I break out for several days and then it disappears again. I have been tempted to ask for the Dapsone, but I'm alread on thyroid medicine and I don't want to have my life revolve around medication for my various ailments! I rely on aveeno oatmeal baths (I know there's controversy about oatmeal- but it works!) and topical steroid ointments to calm down a flare up. Good luck at your appointment!

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I had to go to 2 different docs this week cause the first one didnt even take a biopsy of the sores on my back and i didnt feel like he knew enough about DH, the 2nd doc did the bopsy of my back and i am waiting on the results, he is also drawing blood checking my thyroid and other things, i just want to get dapsone or some med that will actually help this out, i cant live with this condition forever.

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try having the new doctor is town telling me that he knows very little about Celiac or DH. I know I have it..I have the clear fluid-ed pimple like things all over my chest and neck..I have it on my face and head...the mid to upper back is just little bumps..behind my knees it looks like I have mosquito bites..my elbow tips look like they are raw and cracked..I have the same bumps of my butt as I do on my back..

If that aint DH, I dont know what is ;)

~lisa~

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I got a rash last October.I thought it was something caused from the chiggers i got earlier in the summer.Eight months later I was diagnosed celiac.That is when I learned what the rash was.I suffered 8 months.He gave me a prescription for lotrosone cream.It was a God send.It stopped the itching and helped heal.I won't be without it.Maybe it can help you too.

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    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • 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. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • 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.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
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