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Dh Please Help

RCV

By RCV
in Dermatitis Herpetiformis

Recommended Posts

jgrave02 Newbie
jgrave02
Posted

I have celiac and DH and try to eat gluten free but I am really sensitive to cross contamination and spend more nights than I care to count up itching.  I think I have finally found a dermatologist who understands DH and Celiac but I can't get into his office for more than another month.  My hope is to get on dapsone either by pill form or cream.  Meanwhile I have been told organic cider is good to wipe on my skin as well as drink it with a glass of water daily.  THoughts?

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squirmingitch Veteran
squirmingitch
Posted

You can try the cider & see what happens. I tried cider vinegar (not organic) & it did nothing. I tired distilled white vinegar & it did nothing. But that's just me; you may have a different effect. 

Have you seen this thread?

https://www.celiac.com/forums/topic/96552-help-for-the-itching-stinging-burning-pain-of-dh/

 

At this point in time, for the small flares I get, I have found the best thing is for me to get in a tub of hot Epsom Salts & soak. 

 

Please check out Dapsone before you jump for it. The topical would not be such a concern & btw, the topical is called Aczone.

 

How long have you been gluten-free? Do you have a shared household or a gluten-free household? do you eat out? 

  • 1 month later...
Nolev Newbie
Nolev
Posted

Jim

What was the result of your biopsy? Mine was positive for celiac. I am on day 40GF and I'm not better at all yet. Super frustrating. I think I'm in denial..... Hard to be so strict gluten-free (which I am being) when there is absolutely no relief so far. And when you red it could take 1-2 years!! I had a bad reaction to dapsone and no other meds seem to help. So so hard :-(

Well, this weekend marked the end of my gluten-gluttony :)

 

My DH has come back, though still not at the levels it was at when I was first diagnosed.  Last night, sitting in the couch watching television, some place on my body would start itching about every 30 seconds.  My cheek, my scalp, my elbow, my back...just like old times ;)

 

It's still somewhat mild, but it's definitely back, so I'm glad I don't have to keep going.  Hopefully it will start to diminish soon.

 

Now I'm waiting on the results from the endo to see how significant the reaction in my small intestine is.

 

Jim

squirmingitch Veteran
squirmingitch
Posted

Hang in there Nolev. It can take a while & the rash can wax & wane. This is why it's so very critical to be absolutely sure you aren't getting cross contamination & why I tell everyone with dh - especially in the beginning - NOT to eat anything you haven't prepared yourself. This is a mental battle just as much as a physical battle & you don't need to be second guessing whether you got cc'd. I was 3 yrs. gluten-free STRICT on December 1st & still I get some rash. A billion, jillion times better but I do get spots. But for a long time I have been able to sleep all night long & have hours & hours & hours when there is no itching of any kind -- sometimes days. Some people find themselves clear in a few months. Try ice packs.

Lobstah Rookie
Lobstah
Posted

Results were GI Doc saying "Well...you were right, definitely Celiac" 

I told him there was no doubt in my mind, because went I went gluten-free, my rash almost disappeared.

It took awhile after the endo...and I actually got bombed, maybe twice...stupid stuff.

I travel alot, sometimes aLOT...for work, and that can be difficult.  Last Friday I didn't get home until 1am.  I had only had 3 bananas during the day because of meetings/travel/etc.  On the way home, I passed a Taco Bell...corn tortillas, those are gluten free, right? :)...I was famished, so went through drive-through, got 3 tacos, came home and devoured them.  As I was cleaning up, hmmmmm...let me just read the indredients of the "Fire Sauce"...they wouldn't put gluten in.....DAMMIT, of course they did.  Bastids.

So...back of my head, forehead, cheekbone...all itchy.  NOT because of the tacos, because of the little packages of hot sauce, cuz I was too damned tired and lazy to just grab my fresh salsa out of the fridge.

 

So...here we go again...

 

Stay on it, become EXTRA EXTRA EXTRA vigilant.  We were at a fav mexican restaurant on Sat.  We have been there before, and had asked the waiter if the marg mix they used was gluten free.  He had checked and said yes.  This trip, my wife asked again, and asked the bartender to BRING HER THE PACKAGE :)  I was safe...gluten free, no question now.

 

Hang in there, it'll get better, but it DOES take time.

 

Jim

kareng Grand Master
kareng
Posted

Results were GI Doc saying "Well...you were right, definitely Celiac" 

I told him there was no doubt in my mind, because went I went gluten-free, my rash almost disappeared.

It took awhile after the endo...and I actually got bombed, maybe twice...stupid stuff.

I travel alot, sometimes aLOT...for work, and that can be difficult.  Last Friday I didn't get home until 1am.  I had only had 3 bananas during the day because of meetings/travel/etc.  On the way home, I passed a Taco Bell...corn tortillas, those are gluten free, right? :)...I was famished, so went through drive-through, got 3 tacos, came home and devoured them.  As I was cleaning up, hmmmmm...let me just read the indredients of the "Fire Sauce"...they wouldn't put gluten in.....DAMMIT, of course they did.  Bastids.

So...back of my head, forehead, cheekbone...all itchy.  NOT because of the tacos, because of the little packages of hot sauce, cuz I was too damned tired and lazy to just grab my fresh salsa out of the fridge.

 

So...here we go again...

 

Stay on it, become EXTRA EXTRA EXTRA vigilant.  We were at a fav mexican restaurant on Sat.  We have been there before, and had asked the waiter if the marg mix they used was gluten free.  He had checked and said yes.  This trip, my wife asked again, and asked the bartender to BRING HER THE PACKAGE :)  I was safe...gluten free, no question now.

 

Hang in there, it'll get better, but it DOES take time.

 

Jim

 

 

Check the Taco Bell website - almost every food there, including the taco meat, have gluten in it.  If you are "starving" , stop at a Quick Trip/ convenience type store. You can get nuts, sunflower seeds, many types of chips, yogurt, cheese, etc.

Lobstah Rookie
Lobstah
Posted

Yeah...def a dumba$$ move by me.  You can make 100 smart decisions...and follow it up with just one moment of weakness, and bam!

 

Jim

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squirmingitch Veteran
squirmingitch
Posted

Always, always, ALWAYS have take along food with you. In your glove compartment, in an insulated bag - ALWAYS. Kind bars, Lara bars, gluten-free granola you make yourself, raisins, apples, nuts, chips, cookies. You can carry chicken you made yourself, hard boiled eggs, carrots, celery etc... b/c you never know when you're going to get "stuck". Soups in a thermos, crackers to go with it.

I might have told you this before but I recall you & the wife are foodies. Get the "The How Can It Be Gluten Free Cookbook" by America's Test Kitchen. WalMart has it for under $16 & so does Amazon. The baked goods are AY-MAY-ZING!!!!!! Use their flour blend recipe. You simply will not believe what you're eating is gluten-free! Then you can take sammiches that taste, smell, feel & look like the real thing. Dinner rolls, coffee cake, pancakes, waffles, pies, too much to name. For the bread get USA or King Arthur Flour 9x4x4 loaf pans. 

Lobstah Rookie
Lobstah
Posted

Squirm,

Unfortunately, my travel is primarily flying, and that rules out a lot of options.  Try taking a thermos on a plane with you these days :)

 

And yes, we make wonderful meals, still, at home and have adjusted quite nicely.  I haven't found a really good pizza crust yet, but that's ok, part of the fun is in the search.

 

But every now and then...lol

 

Jim

squirmingitch Veteran
squirmingitch
Posted

Look in the travel forum as many have stated what is & isn't allowed on planes & have great suggestions for edibles you can take with you. Also, if you haven't already done so, then get a statement from your doctor that you can carry with you all the time stating you have celiac disease & this requires you to carry your own food so you can eat gluten free. 

There is a pizza crust recipe in that cookbook but I haven't personally made that one yet. Based on everything else I've made from it I expect the pizza crust will be just as stellar. 

 

It is so wonderful that your wife is so supportive of you in this. I hope you showed her how much you appreciate her on Valentine's Day. :) It sounds like she's got your back.

  • 1 month later...
Lobstah Rookie
Lobstah
Posted

Well...got glutened last Friday.  Funny how two people who are BOTH rabid regarding my food intake can still get fooled.

We went out to eat at a very nice restaurant...I would rate a solid 8.5-9, and that's rare for us to go that high.

We informed the waiter of my Celiac condition when we were seated, and had him ask the chef about several different things on the menu.  Some did, some didn't.  Ok...things are going great!

 

Had some Bermuda Fish Stew...first time...EXCELLENT.  Served with a shot of dark rum, and a shot of chili pepper sherry.  YUM.

 

I had Paella for my main course.  Paella in restaurants is not as good as I make it at home.  REAL paella has a thin crust of toasted rice on the bottom known as socrat.  Pretty much impossible for a restaurant to do, but nonetheless, it's nice, fresh, seafood in a spicy broth.  

What's not to like?  Gluten free all day long, right?

 

Nope.

 

This wonderful chef, who produced some spectacular dishes, decided that the really hot setup for HIS paella, would be to use orzo instead of rice.

What's orzo, you ask?

 

PASTA.

Not just any pasta, but pasta that really looks like rice!!

 

Pasta?...seriously?...in PAELLA?

 

Bang.  Itchies.

squirmingitch Veteran
squirmingitch
Posted

I'm so sorry. I hope they don't last long.

Lobstah Rookie
Lobstah
Posted

It's not too bad.  Almost worth the tradeoff for such a wonderful meal.  Can't wait to go back :)

 

But WON'T be having paella...lol

 

This is probably the least/slightest breakout I've had for awhile.  Peaked on Sat night, started dropping off a bit by last night, and not bad today at all.

 

We went out for sushi awhile back, forgot to bring the bottle of gluten-free soy sauce we had bought for just such an occasion.

Got there...realized we'd forgotten in (also suffering from CRS syndrone :) ), and the waitress told us that another couple had left their bottle behind by mistake, and if we wouldn't mind using theirs, we were welcome to it :)  We graciously accepted.

 

BUT...why is there always a 'but'?

 

I did notice that the gluten free soy sauce is much more harsh than the regular soy.  WIll try a few other brands, but it was really salty, and not smooth like I'm used to.

 

Once again...First World problem.

Lobstah Rookie
Lobstah
Posted

Oh BTW, I'm a southerner born & raised. Can you say fried chicken? Can you say fry it, fry it. fry it? LOL! Deep fried YUM! I tried many fried recipes & concoctions. It was all so simple but everything I read made it complicated. Sometimes it's better to go back to basics. The best thing I have found is corn starch. Good frying! It requires a little practice with the temperature setting but it's as near as gluten flour fried food as it gets. I have found it gets crispier if you whisk egg whites & dip whatever it is in the egg whites only then dredge in corn starch & fry. Do NOT drain on paper towels --- the food will get soggy. I drain on a paper plate tilting each piece against the rim so air gets underneath the pieces.

 

The restaurant we went to had Fried Calamari...with RICE FLOUR...as in freakin GLUTEN FREE Fried Calamari!!!  

As a Mainah, I do miss fried seafood...so that was a BIG hit.

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