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myrottndog

By myrottndog
in Dermatitis Herpetiformis

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myrottndog Newbie
myrottndog
Posted

Hi

Until a few days ago, I'd never heard the word Celiac and definitley not herpetiformis. I'm 49 years old and have never had any food allergies. About a month ago I got a rash on my torso and elbows that wouldn't go away....it just kept getting more intense. My dermatologist did a biopsy a week ago, but we've not gotten the results back as it was sent on to another lab for a 2nd opinion. I hope to have the results today. If it comes back positive for dh then they will start me on dapsone. How long does it take for the dapsone to 'kick-in'? Right now I am surviving on Vicodin, anti itch cream from the doctor and ice packs. I feel like my skin is on fire!

I realize that 95% of the food in my house is now off limits.......depressing. I live in a big city and did go to Whole Foods Market and buy up a bunch of gluten-free frozen meals and munchies to tide me over until we have a definite diagnosis. If I have to I'll eat plain rice for the the rest of my life if it will take this rash away!!

Thank you for reading this. It's all very scary right now.

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simplicity66 Explorer
simplicity66
Posted

I am a "newborn" in the Celiac disease living.....i was diagnosed on the 16th of Feb of this year.....i know everything sounds so over-whelming and a bit of a panic as well...."What can i eat that wont effect me?"...glutenized is what i call it...you will have many ups and downs changing the way you eat and live...make everyday a new discovery ...do alot of reading and look for a Celiac Disease Association in your area....it wouldnt hurt to be prepared and have some knowledge of what you could be in for.....i myself for 9 months lived on nothing but fruits and vegtables chicken and fish.....going from 115pds to my present weight of 95 ( which in a month i have gained 3 pds )...the other night i had a gluten-free pizza with lactouse-free cheese on it....after a year not eatting it...it was fabulose!!!!!! and i enjoyed every bite....there are many options out there.... all of us here just have to find them....fourtunatley for you....you have joined one of the most helpful tools right at your fingertips....everyone here helps each other....even if your having a bad day some articles you read on here will lift your spirits....remember you are not along...there is many people with this and some dont even know they have it.....i do expericence the itchies....get a rash that burns when your itch it....more you scratch the more it burns the more it burns the more you scratch.....there is defiently better days ahead...keep positive and look for new things to try...dont dwell on what u have or may have....find a good health food store that carries gluten-free products....fornatly for me the health food store i go to three of the women work there 2 of them have Celica disease...we exchange notes alot which is helpful in dealing with my diagnosies.....best of luck and put this site in your favorites list i have ....we can all help each other!!!!

jesse Newbie
jesse
Posted

i'll say this much,

being a celiac is tough, but sometimes what happens to you in life has to be, it only makes you stronger. i read a great quote on this site "life is 10% what happens to me and 90% how i react to that" by a good e. liverpooler named Lou Holtz.

the perks are:

1- you probably wont be overweight

2- you wont have to eat foods that you might otherwise be coerced to

3- i cant think of a third now, but i know there is one thats rational.....

anyways, on your note about eating, you arent w/out choices. instead of wheat flour use rice flour, you can still make roux and make soups and sauces. dredge the chix in rice flour and pan sear like that or cover oyster w/ rice flour and deep fry... thats actually preferred for taste cause its a little crispier.

basically never think your limited. for myself i have a goal and that is to go to the beach, swim, and possibly play volleyball if i can get in a game. im doing my best not to worry about going shirtless this year and hope this is what happens.

only the best and remember what i said,

jdog

myrottndog Newbie
myrottndog
Posted
  • Author

Thank you for the replies. It helps to know that I am not the only one out there having to deal with this.

I was frustrated today (okay, pissed!) that my dermo office did not return my call regarding biopsy results......probably still waiting........but a return call would have been nice since I'm hurting so bad right now. If this is dh.......I want my dapsone and I want it NOW!

That's got my husband up in arms and he is doing the calling tomorrow.......YIKES! I am very fortunate to have such an understanding husband. I really need to count my blessings every 5 minutes or go crazy!

I have been taking warm oatmeal baths.......just being in water feels better. I just may sleep in the tub tonight.<g>

Any favorite books on Celiac related topics?

Is there a central newsletter or anything like that?

Does anyone use relaxation tapes?

Where can I get a giant ice pack?<s>

Many thanks!

simplicity66 Explorer
simplicity66
Posted

Relaxtion tapes i have never thought of.....i used them for my father in the last stages of cancer they seemed to work for him....anything to get your mind off the the present situation.....Cookbooks well i have come across a few.....recent on my bf bought me is ..Living Well Without Wheat "The Gluten-Free Gourmet" by Bette Hagman she has 3 more that i have inquired about.....anothers" 125 Best Gluten-Free Recipes"...."The Best Gluten-Free Family Cookbook" both are by Donna Washburn and Heather Butt....on March 1st these two women released another one called "Complete Gluten-Free Cookbook" i am waiting for the book store to call when it gets in.....i have used some recipes from a site called glutenfreeda.com alot of recipes and great information guide as well....penny.ca is another great site...bestglutenfreerecipes.com is good as well....you are very fourtnate to have a understanding hubby.....and yes my bf has got to the point of calling the MD when results are in when i was told....i waited month and ahalf for a blood test to get back....frustrating yes and makes your blood boil but sometimes no news is good news.....hang on for the ride it will get bumpy at times....all the best!!!

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