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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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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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