Another Dr Visit

[jeannine]

I went back to my derm today with regards to the rashes (now on my lower legs, lower back, rear end, lower stomach and neck). I feel like I'm going to rip my skin off- or at least I wish I could. At my last visit we talked about dh and why it seemed to fit, but he had to call in a more senior doctor that prescribed anti-biotics (which I did not finish).

Anyway, go in today and show him my legs, told him that they were completely cleared a few days ago, but started burning yesterday and today the rash was back. I had started eating gluten-free about2 weeks ago, but had a gluten-y weekend.

So off he goes to get another senior doctor. In she comes, looks at me and tells me that I have eczema due to dry skin. I tell her about my last year, and the last couple of weeks. She prescribes oil to use topically and leaves.

My derm says he is ordering patch testing for allergies- I tell him again that I am only using caress soap (which he told me to) and the lotion he prescribed to me and hypoallergenic everything else in the house. He tells me he is still arranging the tests- and that he would try another round of antibiotics if there was no improvment by that time.

I have been living with the rashes since Nov 06. Every doctor I have seen has told me something different (except I hear eczema all of the time), I have been faithful to all of the treatments- with the exception of the latest round of antibiotics because they gave me a yeast infection, which was the last thing I needed.

I guess my question is- how long to I keep doing this? Do I continue with the 1-2 visits with the derm every month, coming out with a new lotion or potion every time? Do I say hang it and just go gluten-free and see where that takes me (knowing that I was getting some improvement)?

I'm sorry this is so long, but I am at my wit's end!

Jeannine

[kbtoyssni]

I wouldn't keep going to the doctor if what they're doing for you isn't helping. It's a waste of your time, money, and health. I might go in one more time, insist they test for DH, and walk out if they won't. You're obviously pretty convinced it's DH, so why keeping postponing your health?

[jeannine]

Yes, I have convinced myself it is dh. I have been looking for an answer for a long time and doctors kept pointing at different auto-immune thingys. I have read a lot about dh and celiac over the last few weeks- and it has been like a light going on inside my head. Which I know doesn't mean that I have dh, but it sure would answer a lot of questions for me. The number one being, "What is wrong with me?!"

It would certainly make more sense to just go gluten-free again- longer this time and see what happens.

Jeannine

[woolwhippet]

Go gluten free for a good amount of time. I am about 8 weeks gluten free and the mystery rash on my buttocks and scalp has really cleared up--just purple marks and a few spots with the surface area of insanely itchy spots being greatly reduced. For years I thought I had an odd ingrown hair problem or psorisis or something but was too embarassed top talk to my dr. I'd never have connected the rash with what I was eating. I gave up gluten for digestive reasons and, go figure, the rash starts to clear. I am very happy to be gluten free and not have to itch in the wrong places all the time!

[Franceen]

Jeannine,

My story is very very similar to yours. You can search for my posts under my name and read the story several times. Short version is: 3 YEARS of horrible rash and ungodly itch and 3 YEARS of clueless dermatologists and primary care doctors. I heard everything from flea bits to eczema to lupus, to heat rash, to hormones, to fabric with lycra, to black dye, to stress, to mold in my workplace, to carpet beetles, to gnats in the backyard, to the water in my house, to my cats, to craziness. I did my own research and decided it was DH/Celiac. Went to my ALLERGIST who is an open-minded patient-focused doctor who listened to me and read the articles I brought her and did her own research and asked some specialists after taking photos of my legs (my worst rash area). She suggested I go completely Gluten Free (I was gluten "lite" at that point).

I did that and it completely cleared up - but it took about 3 - 6 months and also had to avoid excess iodine for the first 3 months. Other than the inevitable accidental and unintentional glutenings that happen in restaurants and at weddings, etc. (like my recent "gluten-free plate" at my job's Xmas party) I have been DH-free for more than a year!!!! YAY!!!!

Even my allergist who I still go to see twice per year for followups says that the gluten free diet success is enough for her to diagnose DH/Celiac (the various tests that were done were after I was gluten free for several months, but not yet rash-free, were negative, but that was expected).

BEST BET: Go totally Gluten Free (really study what you eat), for at least 3 - 6 months and see if it clears up. If it does, you have your answer!!!

It really isn't that bad a diet - except for restaurants and parties! AND truthfully, "IT'S ONLY FOOD!!!! not chemotherapy, not medicine, not shock treatments, not surgery, not anything invasive!!" That's looking at the bright side which we all should do.

Merry Christmas.