casnco

Tracy, Bob

Nice to meet you. I grew up near Cleveland. Kind of. That is where we all say we are from if someone asks. A small town called Homeworth. Really it is closer to Canton/Akron, but most people out of state really don't know where Canton/Akron are anyway.

Tracy, not real familiar with WV. Why did you move there?

Are you both Celiac primarily? I ask because I am blessed with Dermititis Herpiformosis also. Some people talk about cheating on the gluten-free diet. I am sensitive enough that one accidental glutening and I break out and sometimes even spend a day or two in bed. Oh to cheat. I had a dream about pizza last night. And I have been gluten-free for 18 months! You think I would be over that.

I have found some great products though. I have learned to cook like a chef but still like to go out to eat. Columbus is great for resturants that understand my need for gluten-free food. Wish I felt comfortable traveling. Sometimes I let my husband do the talking at a resturant because I get so frustrated.

Sorry for the rant. Basically I think we are pretty lucky. There are worse allergies.

If either of you have stories to share, feel free.

Debbie

I don't know what to say when people say they or someone they know "outgrew" celiac disease! There was a lady that I used to work with who told me that she had it as a child, but then the Dr. gave her some meds to put under her tounge after she ate and it cured her. I just smile and nod

I would like to have that Pill!!!!

I was totally shocked today when My son's Enterolab results were higher than last year. His diarrhea has been gone for many months.

Talked to a nurse at his Dr.s office who said another gluten-free patient told her paper towels and plates are loaded with gluten. This person's baby only improved when those products were also eliminated. All my son's foods are gluten -free and I pack his pre-school food.He has seperate pots/pans. I dry his dishes sometimes with paper towels and drain fat from burgers on them. Sometimes he grabs a paper towel for his gluten-free muffins... So this makes sense. Has anyone else heard of this? Going to call manufacturers tommorrow.

Are you kidding me? Just another thing to worry about. I have been breaking out recently for no apparent reason. Took a new job 3 months ago. Maybe the paper towels they use are the culprit. UGH!!!

Hi, Im Debbie and live in central Ohio. I just noticed my typo and tried to edit it. It should say, "Anyone in Ohio?" My bad.

I have been tested positive for DH and intestinal biopsey was negative. I had been gluten-free for 3 months before the biopsy. I told the doc. I wouldn't go back on gluten and we decided it would be good to see if there was any perminant damage because I was still having symptoms.

I have lived as gluten free as possible for a year and a half. I keep getting gluten in cross contamination. It sucks. I would really like to cheat once but if I continue to have symptoms I can't even do that. Bummer.

I would really like to meet other people in Ohio who are "blessed" with this lifestyle.

Look forward to hearing from you.

Looking for a good doc in Columbus, Ohio. Was having problems, had the bloodtest (on my suggestion) but it came up negative. I had been off gluten for a month then and (correct me if I'm wrong), I now realize I should have been eating gluten to get the test to show a positive? I have started eating gluten again and having nasty issues so I'd really like to know for sure.

Thanks in advance.

Hello, I know you have been waiting a long time for a responce. Just came across your post. Sorry to hear there are no good Doctors in Columbus, Ohio. I had my biopsey done by Micheal Stiff. He is in a privet practice in Westerville. Great guy. I was initially diagnosed by my dermitologist Dr. Kevin Kericomi. I know I misspelled his last name. Sorry. He is also in westerville on Schrock Rd. I believe the name of the practice is "Westerville Dermitology".

If you have found a family care doctor let me know. Maybe if we could get a large number of people with Celiac/DH to go to the same doctor, we could help that person become a specialist.? Food for thought?

Debbie

Has anyone been to a GREAT dermitologist/Celiac Specialist? My PCP is marginal. She told me she did here thesis paper on Celiac disease but she doesn't seem to think about the medications she is perscribing as gluten contaminated.

I would just like to see someone who understands my disease. I am tired of coming home and researching every medication she prescribes. I would also like to see someone that is currently doing research in the field of Celiac/DH.

Any information you can share would be helpful.

debbie

I was diagnosed almost two years ago, but never went on dapsone. I am on a strict gluten free diet, but I still get rashes sometimes. My dermatologist says it is something other than DH. Like you, I get welts, especially around my waist. I use free and clear detergents for my clothes, mild cleansers for my skin and topical steroid creams when I have these break outs. I have always had very sensitive skin, and this winter has been really hard on me. I have read a little about yeast overgrowth and I try to eat lots of yogurt when I'm really itchy. It may be all in my mind, but it seems to help me! There is nothing worse than feeling itchy. I take Benadryl at night when I'm bad and that helps. I can't take it during the day, because it knocks me out.

What brand of yogurt do you use? I wrote Dannon and they told me they use wheat gluten as a thickener/binding agent in their yogurt.

Bernese:

I was just given a script for Welbutrin XL. I try to research any meds I take so I started here. I decided I needed to call the company. They said they use tree starch!(what is that?! ) and potato starch. However she said she could not guarentee the medication was gluten-free. I would rather have a little depression than Celiac/DH symptoms. So I am not taking it. Have you found any other meds that are gluten-free that help with depression? I haven't at this point but I have just started to look. I know exercise helps a little but I need to do it every day and I just haven't gotten that committed yet. Three times a week is helping a little though. Let me know if you have found anything else that works.

Just wanted to share a positive experience. I was feeling down because I couldn't have any of my favorite deserts for my Birthday. Well, I decided to make my own.

Yea! I found a great recipe for lady fingers and substituted gluten-free all purpose flour. They turned out wonderful and then I found a great recipe for Tiramisu and made it gluten-free.

I am coping and pasting for anyone else that might want to try the recipe.

SAVOIARDI - (lady fingers)

• 3 eggs, separated

• 1/2 teaspoon almond extract

• 1/4 teaspoon salt

• 1/3 cup sugar

• 1/2 cup sifted gluten-free cake flour

• 1 teaspoon baking powder

Beat egg yolk until thick and lemon colored. Beat in almond extract.

Beat egg whites until stiff, but not dry, and gradually beat in sugar until whites are glossy and

very stiff.

Fold egg yolks gently into whites.

Fold in sifted dry ingredients.

Drop batter by tablespoons on ungreased cookie sheet forming fingers in 3 inch long and 1 inch wide. Bake in moderate 350F oven 10 minutes, until light brown.

Remove immediately from cookie sheet and cool on rack. Makes 3 dozen.

Tiramisu Mascarpone custard layered with whipped cream and rum and

coffee soaked ladyfingers. Prep Time: approx. 35 Minutes.

Cook Time: approx. 10 Minutes. Ready in: approx. 5 Hours .

Makes 1 - 7x11 inch dish (12 servings).

Printed from Allrecipes, Submitted by Christine

6 egg yolks

3/4 cup white sugar

2/3 cup milk

1 1/4 cups heavy cream

1/2 teaspoon vanilla extract

1 pound mascarpone cheese

1/4 cup strong brewed coffee, room temperature

2 tablespoons rum

2 (3 ounce) packages

ladyfinger cookies

1 tablespoon unsweetened

cocoa powder

Directions

1 In a medium saucepan, whisk together egg yolks and

sugar until well blended. Whisk in milk and cook over

medium heat, stirring constantly, until mixture boils. Boil

gently for 1 minute, remove from heat and allow to cool

slightly. Cover tightly and chill in refrigerator 1 hour.

2 In a medium bowl, beat cream with vanilla until stiff

peaks form. Whisk mascarpone into yolk mixture until smooth.

3 In a small bowl, combine coffee and rum. Split

ladyfingers in half lengthwise and drizzle with coffee mixture.

4 Arrange half of soaked ladyfingers in bottom of a 7x11

inch dish. Spread half of mascarpone mixture over

ladyfingers, then half of whipped cream over that. Repeat layers

and sprinkle with cocoa. Cover and refrigerate 4 to 6

hours, until set.

This was wonderful. If you follow the directions you will barely taste the rum. If you like yours with a little more rum flavor, increase to 4 tablespoons. I also used a little more coffee because I like my lady fingers completely saturated.

Good luck if you try this recipe.

Debbie

Jen:

I have found some wonderful places at Easton that are quite accomodating. They know when I say wheat allergy and bring me a gluten-free menue.

Try the Ocean Club. It is a Cameron Mitchell Resturant. It is a local chain. They have been accomodating at all of the restaurants in the chain. Mitchells, Martini's, Ocean Club, Cap City. I avoid places like the Cheesecake Factory. They are always to busy to accomodate me safely. If you leave the Easton area and venture through Columbus the Bonefish Grill also has a gluten-free menue. Hyde Park has some great menue items that are gluten-free. All of the places are a little pricey but aren't we worth it. If you go to any of the Cameron Mitchell restaurants and you enjoy "adult beverages" I highly recommend the PinFin Martini. Very yummy!

Good luck. Hope your visit is fun and gluten-free!!

Debbie

Never have found a shredded cheese that has flour to keep it from sticking. Maybe it was true in the past, but now they use cellulose and maybe cornstarch.

Most likely you're the victim of cross contamination. Unfortunately, it can happen anywhere.

richard

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Richard, I hear what you are saying about digestion and it does take a while for food to totally digest. But I can tell you, when I have made stupid mistakes, like not reading the label and assuming the product is good, I have an immediate reaction. I thought the problem with the gluten occured in the small intestines. The small intestines would be the first point of contact after the stomach.

The last time I made a stupid mistake it was with a vegtable salad. Vegtables digest most directly in the small intestine. Not the stomach. And that is why I believe I do have an immediate reaction.

Anyone out there like to comment? It would be good to understand the whole digestion process better.

Deb

Well, I procrastinated quite a while before seeking the help of an accupuncturist to help with my DH symptomes. Boy that was dumb!

One session and my symptoms are already improving. The rash is starting to subside. Not completely after just one session but enough that I am going back. Chinese medicine is so bizzare to me. I certainly do not understand it but I am so glad I have this option.

I will keep the board posted on this thread.

Deb

I use gold bond anti itch cream. It keeps my skin moisturized and helps sooth the itch. It does have oatmeal in it but I have never had a bad reaction. Good Luck! Oh, and I have used benedryl at night with good results.

Katie, Jnmnky,ruddabega and Susan:

Thank all of you for your support and thoughts. I will keep everyone posted on my progress. Susan, you are right. I am not banking on a cure for Celiac, just reliefe of the symptoms. Although some doubt the effectiveness of eastern medicine it has worked for me in the past. It was very expencive the first time I used it. I was checking again and the cost has actually decreased! Imagine in this world of inflation something decreasing in cost!

I really appreciate the support of ruddabega and Susan. I needed to hear from those who believe in alternative medicine. However, I thank Katie and Jnmnky for their opinion. I do not want to go into this blindly.

I haven't looked at my soap. Jeeze, how could I miss that? My shampoo is fine. Katie, have you had any experience with laundry detergent? Maybe I need to look at that also. If you have any suggestions for gluten free soap I am listening.

ruddabega, good luck. I hope you find reliefe. Let me know how it goes. I have faith it will be helpful!

Again. Thanks to everyone on the board for their input.

Jnkmnky:

I was thinking that because the central nervous system controls the activity of all of our organs it would help promote the function of the small intestine. I am definatly more apt to use natural medicine than go on the Dapson also. I know I am pulling at straws but I have been Gluten Free for a year and still have symptoms. I do all of my own cooking and feel confident I am not posioning myself. I don't even feed the dog anymore. That is now my families responcibility. My family hasn't seen bread in our house in 6 months.

I will post again once I have a consultation with an accupuncturist. If anyone else out there has tried this your input would be helpful. Thanks

Jnkmnky, thanks for you thoughts. You could be right, but I still think I need to try this.

Has anyone tried alternative medicine to deal with DH/Celiac? I am thinking about starting accupuncture. I have used it before for a rash that was probably DH years ago and it worked. Just wondering what anyone elses experience has been?

Has anyone tried alternative medicine to deal with DH/Celiac? I am thinking about starting accupuncture. I have used it before for a rash that was probably DH years ago and it worked. Just wondering what anyone elses experience has been?

cdford:

Thanks I forgot about that possibility. Yuck! Isn't this so much fun?

Matilda:

Thanks for the link!!! Man, I thought I was going nuts. Not that I am glad anyone else has this problem, however, since people do I am really thankful they are wiling to talk about it!

I just finished looking at the link and reading the postings. Not that I have an answer for the cause, but I know I am in "good company".

For those of you who break out immediately, you are so lucky! I took 6 weeks to break out the last time I was accidentally glutened. I was at a reception and was missinformed concerning the "rice" in a desert. I ate some and thought to myself, this doesn't taste like rice and the consistancy is questionalble. When I questioned the cook she said, rice or pasta, something like that, why are you getting sick?

!!!!!What!!!! Nice reply.

Anyway, I told you that to say, 6 weeks later, rash. 6 weeks after that. The rash is still here. Very mild on both accounts. Thank God. But those little gluten buggers must be able to float in my blood for a long time wondering where they want to land.

I have found through trial and error that I cannot eat anything that contains citric acid and chocolate.  I have the same problem.  Even eating very cheap chocolate will do it.  I use a cortizone based cream that my husband got from the doctor for his DH.  Give it a try and go off these things for a while and see what happens.  You may have sensitivites to other things.

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OMG! Give up chocolate and citric acid. This is the pits. I guess I will lose a little weight. I know I shouldn's complain at least their might be a non invasive way to get rid of this awful problem! Thanks for the pointer. I will give it a try.

I do have DH on elbows and stomach right now. Accidental gluten at wedding shower in May and have had small break out ever since. Thats why I was wondering about the other. I have thought about the surgury. I just dont want to jump the gun and then find out it is DH. Thanks for the input. It is invaluable to be able to ask questions here before I get to the doctor.

Actually it was a situation much like the one I am in that led to the diagnosis of DH. I went to my GP for severe itching in that area. She did not know what was wrong, sent me to a specialist. He didn't know what was wrong. After quite a bit of suffering my elbows broke out and a Dermitologist diagnosed DH. With a gluten-free diet none of these symptoms have beeen a problem. It is the accidental glutening that has brought this question to the front of my mind.

This is a very "sensitive" topic. Has anyone confused DH with hemmeroids? I know this is weird and that hemmeroids come with constipation and diareha ( sorry my spelling stinks) that follows celiac disease/DH. But this is just lingering longer than expected and NOTHING is helping. Some days I feel like I will loose my mind for all of the itching. And it is not like itching makes it any better. And you sure cant do that in public!

I am really embarrased to ask this but I really need to know if what I am experienceing is normal. Anyones kind reply will be helpful.

While in Salt Lake on Vacation I was blessed to find a resturant w/gluten free Menu and I wanted to share the name of it with everyone. They have locations in other city's but I don't remember where.

The resturant is calld "THAIFOON",Taste of Asia. They were very understanding and helpful. So good luck out there and try THAIFOON if you ever get a chance. It was really good.

Now I am probably sidetracking a little but since you mentioned Applebys. I must have just had a wonderful waiter. I live in Columbus, Ohio, and on a recent visit to a suberbian Appleby's (which I just usually avoid because I don't really like chain resturants like that) I explained to the waiter about my allergies. He went and got the manager and the two of them went to the back and researched all of the ingredients in their marinade for chicken. The manager came out and told me they could grill a plain chicken breast for me in a clean pan! and they went to the grocery store and bought safe salad dressing for me! They were absolutley the best. I know that it was the people not the resturant but those guys were wonderful.