Nickie

Udi's white sandwhich bread and the whole grain are awesome. I can eat the whole grain right out of the bag with nothing on it. It is so far the best Gluten Free Bread I have ever tasted, I only purchased it because the loaf was the lightest. Also there frozen pizza crust is great too.

You should go gluten free now instead of causing you more pain and suffering later. I started getting DH at age 12, 40 now, No one coule ever diagnose it they had no clue. I asked to be tested for in in 2006, finally figured it out then did the blood test and was positivly diagnosed with celiac disease, I started dapsone at 100 mg a day and spent about 3 months gluten free then reverted back to the old ways of eating while contiuing with the dapsone, May 2009 10 days in the hospital in ICU with an allergic reaction to dapsone, basically my blood was not allowing oxygen to bind, I was dying. No more dapsone for me then to tetracycaline and niacin, could not tolerate the niacin, still eating gluten, then to sulfasalazine, now my blood test come back thinking I am an ederly person whose kidney's are failing so they may be who knows. Now gluten free again for a week, small break up started yesterday made toast (udi's bread) in the house toaster. I just went out and bought a new one. So now there is absolutely no other medication I can take other than not letting 1 little mg of gluten enter my body unless I want to break out.

So start Gluten Free now and from experience save the pain and hardship. It is hard to eat glutenfree but the products that are now available so much outweigh what was available even 3 years ago. Your choice just offering my experience.

GOOD LUCK!!!

Hello

I have been diagnosed with DH since March of 2006 and have been on Dapsone 100mg since then, recently I spent 10 days in the hospital 7 of the days in ICU, I thought it was just an asthma attack however 4 days after I was admitted I found out that it was something that is called metahemoglobinanemia, which means my blood was not allowing oxygen to bind to it. So now I can no longer take the dapsone for the fear of this occuring again and I really do not want another experience like that. My question is this my dermatology DR is wanting me to go on tetracycaline and NICOTINAMIDE, which is basically niacin, B3. My insurance company covers it but the copay is $75, too expensive. Do any of you know something that is the same thing over the counter or any other treatments other than the tetracycalin, dapsone or Sulfapyridine. Thanks!!

  Judyin Philly said:

NICKI

DO YOU THINK I COULD USE THE HELLANNS CANOLA MAYO INSTEAD OF REGULAR. I LOVED THIS CAKE.

WONDER IF I COULD USE THE CHOC gluten-free CAKE MIX AND USE THE MAYO INSTEAD OF THE EGGS AND OIL???

JUDY IN PHILLY

I know what you mean, this is my favorite Chocolate cake!!! You could always try, I think that is part of cooking gluten free, experimentation. Like I said I had to add a little more sugar than normal, but in the end it turned out great. Never know till you try.

I found a bread that is the closest texture to real bread yet. It is kind of spendy but it is good. I got it online at noworriesbread.com. It is $9.00 per package and that makes 2 loaves, I got about 34 slices out of it and froze it in packages of 4 slices a piece it is great.

Just thought I would share this with everyone. My husband made a chocolate cake the other day, non gluten free from a mix. So what happens I want some. I have always made a cake called Chocolate Mayo cake so I said what the heck I will try making it gluten free and see how it does. Worked great here is the recipie for gluten free.

2 cups flour (I used Bob's Red Mill Gluten Free Flour mix, from Target)

1 cup Sugar (added a little more about 1/4 cup to taste)

1 1/2 tsp baking soda

4 tbsp cocoa (hershey's baking cocoa)

1 cup water

1 cup mayo (replaces the normal eggs and oil)

2 tsp vanilla

Mix first four ingredients well, then add remainder and mix well.

Preheat oven to 350 degrees, grease and flour cake pan (just use some of the Bob's Red Mill above and gluten free cooking spray.

This will give you the smaller square baking pan if you want to make it a larger one for the normal 13x9 cake pan, you just 1 and 1/2 the ingredients.

Bake for 25 minutes, may take a little longer it did for me I am thinking it is the difference in flour.

Turned out very good I am glad I tried it. Enjoy!!!!

Thanks

I think I truly do know more than my doctor about celiac disease/dh, because of reading others ecperience and researching on my own. My doctor does listen to me, in fact I said I want the test she had no problems running the blood tests, they came back weakly positive, so I am a little confused on what that means. I put a call into her to have her explain the results to me, no call back yet. I definitely knew more than the nutritionist that I was referred too. I think I taught her a few things. As far as getting a different doctor it is hard for me. My husband is Air Force therefore we have to go to the base clinic in order to get any care. If we lived away from a base I would then get to choose my own doctor. Plus I have to go through getting a referral to any other doctor I want to go to. One question about the cholesterol though, I just had mine done and came back high actually so a little confused on that one. Of course prior to being diagnosed I ate out about 3 to 4 days a week, so got a lot of junk and fattening food. Not sure if that will change since I have gone gluten free and am not eating out at all. My HDL is higher though so that is good. My plan is to definitely stay gluten free as I do not want to stay on dapsone, I take enough other medication for my asthma, that is quite enough. I have been gluten free since March 10th so I am on my way. Thank you all for your information and time.

Well that would be good. I hate fruity pebbles and cocoa pebbles, trix are not even my favorite but they are better then those two.

Trix have Wheat Starch in them. Just went out to the Generral Mills website to look at ingredients has wheat starch at the end of the ingredients.

Connie

What is the texture of this bread. I am new and tried a bread that I bought from the health food store and gagged, could not get past the texture. Is it somewhat close to wheat flour bread? And maybe you can answer this I made banana bread using the Arrowhead Mills Baking mix and there is a sour aftertaste, what ingredient or lack of ingredient causes this?

I love my rice Krispie treats

6 cups rice krispies gluten-free or Cocoa Pebbles might work haven't tried it yet

1 cup light karo syrup

1 cup sugar

1 cup creamy peanut butter

Cook sugar and karo syrup till warm and smooth then add peanut butter and stir in well. Turn off heat and add Rice Krispies I add 2 cups at a time, fills a 13 x 9 inch baking pan.

YUMMY!

Not so sure about that one. I hardly ever get a mosquito bite even when camping. My family gets upset with me. For some reason they hate me.

I have asthma have had it since I was 17, 2 years after I started getting my rash which 20 years later, finally last month was diagnosed as DH. I just did a PFT, and I have to go to a specialist in pulmology now too, cause I have severely bad lungs. So who knows if it was related. Makes me wonder though.

I started getting acne after I was 30 and can relate to the large ones you are talking about, Dermatologist about 4 months called it cystic acne, I take 100mg of Dorxy a day and I can't remember the name but it is a medicine with derma....and mised with a lotion it has benzoyl peroxide and is less drying for me then Retna A. I also take 100mg of Dapsone for my dermatitis herpetiformis. I started a total gluten free diet on March 10th and my face is so clear it makes me want to cry. Talk to your derm about it. Might help you. Not sure if it is the lack of gluten or the meds that cleared it up, but it is good.

The dapsone has worked great for me. Cleared up and healed except for legs which were really bad. RICHARD....after research I have found that if you have DH you will have celiac disease, hence the positive blood results. Still working on gluten free, living on a lot of veggies and fruit and boiled eggs, cheese haven't had bad reaction to those yet, I hope I don't.. But so far so good. For the initiator of this thread I have been on 100mg of Dapsone since Feb 27th. Works well.

You should have a fresh unscratched blister for the biopsy, and the area around it, when they did my first set of biopsies came back and said it was traumatic dermatitis. So my derm told me to come up anytime I got a new blister to restest again, I did and suggested eliminting DH, he agreed sent it down, sent it down for second opinion and came back positive for DH. The dapsone is working great for me, and have been on gluten free since March 10th, still have sores but in healing stage, the bottom parts of my legs were pretty bad, but the other places, face elbows hands, wonderful. I have had it for 20 years and nobody knew what it was. I finally did the research and found out about DH. Hmmm....maybe I should get paid for that visit!! LOL!!

  lovegrov said:

I'm just telling you what the top celiac experts in the country say. If you do have positive blood tests, the NIH says a biopsy is not necessary, since you've already been diagnosed with DH. In case you haven't read the actual consensus statement: Open Original Shared Link.

Anyway, my dermatologist diagnosed my DH 25 years just by looking at it. He knew immediately what it was. If yours didn't even think of DH, then she apparently might not know much about DH. Mine, however, didn't know the celiac connection 25 years ago, and so although he wisely urged me time and time again to go gluten-free, I refused, thinking it would be too hard.

I started out at 100 mg a day but blood tests showed that was negatively affecting my white blood cells. Eventually I ended up at 25 mg, and I almost never needed it daily. In the winter, I took it maybe once every three days. That's a very low dosage.

After 20 years on dapsone the internal celiac part finally caught up with me. I was hospitalized basically dying of malnutrition. Even then nobody made the DH-celiac connection, but my GI saw some celiac symptoms and decided to run the blood tests. I was in the hospital for 11 days and missed 10 weeks of work. It took 6-7 months to return to normal. Basically, I felt like I had the flu for months. It was awful. I was unusual in that my DH disappeared as soon as I went gluten-free; no dapsone needed. Most people need it for months after they go gluten-free.

My opinion? Go gluten-free. Don't take the chance.

richard

Well, I am glad that I never experienced that although I do have a hard time gaining weight. Everyone gives me a hard time and I tell them I eat I eat LOL. I just got my blood test result, had to go in for a pulmonary test for my Asthma, she told me it was positive. Just makes me wonder for 20 years my body must have been doing battle with intself inside and out, with no one being the wiser. Now comes the fun part going gluten free. I will though for the benefits it does create, just going to be an adjustment. We will see how my blood test go on a 100mg a day. I am just happy because for the first time in 20 years I am not afraid to shake someones hand. Take Care!!!

  lovegrov said:

If you definitely have DH then you definitely have or will have celiac. Even the National Institutes of Health agrees with this. In fact, they say that if you have DH, you don't need any more tests for celiac, you just need to go gluten-free. There's an NIH consensus statement about this. But you need to keep taking the dapsone for several months to keep from breaking out.

richard

See I have read all that, but even my doctor said that DH does not necessarily cause cleiac disease, but I told her that I want to get the tests done to be sure. I have learned through years of going to doctors you have to do your own research and go in there with your gloves on and prepared. HOw much Dapsone did you start out taking. Right now I am on 100mg a day for 3 months and then my dermatologist said we can lower it down to a lower dose to keep it under control. How long did it take you to get diagnosed, my doctors thought it was everything from ezcema, traumatic dermatitis, pustular psorasis you name it, tried everything till I read about DH in a magazine a month ago. I should get paid the big bucks. LOL

I found this to be true as well. I could also tell how mild or not mild my cycle would be by the intensity of breakout. I am thinking now that maybe it was because of the foods i craved during this time. Who knows.

I have had my rash since I was about 15 years old. (20 years) I went to numerous doctors none of them had any clue what my rash was. I would get the blood and clear blisters on my hands, very painful, could not even reach into my purse without pain. It was awful. And to repeatedly go to a doctor and a dermatologist and to have them have no idea what it was. I also started breaking out on my face as well, with acne and the little clear blisters that were DH. Finally I read an article in a magazine and on the third skin biopsy asked my dematologist to eliminate the possibility of it being DH. He did and even sent it back for a second opinion. Finally I knew what it was. It was a great feeling. I have already been on antibiotics for acne and he added the dapsone about a week ago, It is working great for me, I am not waking up istching myself and any of the break out I had before starting it is in the final stage of healing. THe only problem I have had with it is it has made me no hungry have to force myself to eat something everyday. I am hoping that, that will go away, definitely do not need to loose any weight. I have just had my bloodtest to check for celiac a week ago as well. The monday after my diagnoses of DH, just waiting for the results, but signed up here and am going to try the gluten-free diet no matter what the bloodtests reveal. I have had other symptoms as well so I do believe it is the gluten allergy. I am 35 and have already shown to be borderline osterpososis, that is enough for me. I appreciate all the information I have found out at this site and I am continually doing research. Thanks!!!

  TestyTommy said:

I've had 'chronic idiopathic urticaria' and 'chronic idiopathic pruritis' for 8 years. I know exactly what you're going through --- try to imagine living with it for all those years!

A few months ago, a new doctor suggested this (and my other problems) may be celiac. I've been gluten-free for about 6 weeks, and I've felt significant improvement with my stomach problems and some with my sleep difficulties. No change in the skin condition, so I'm still not sure it's celiac related. But I'm hoping it will go away in time.

Stay away from prednisone. I know it helps, but that is nasty stuff!

I agree prednisone is very nasty stuff. I use to take it when I had bad asthma attacks, but now I tell my doctor go ahead and prescribe it, I won't take it.

  kim07 said:

Rachel- Thanks for your help, in help me navigating, this new forum. I'm slowly learning , !

My name is Kim, brand new as I you can see, and about 2 1/2 years a diagnosed Celiac (after a stomach surgery, to repair severe gerd). I never had problems with my body tolerating gluten before, until after the surgery. I'm 34, and right now dealing with a brand new symptom that 2 dermotologists think is related to my celiac disease which is uticera hives, (I'm currently on a lot of meds to help me just not be so misserable, and help get some sleep). I'm not a 100% sure on the correctness of the diagnosis because of the severity of the itch, but am pretty am hoping and pretty sure that it probably is that.

Anyway, I just wanted to tell you a little about myself, since you we're kind enough to write to help me with the board,

nice to meet you, Kim.

Ask about DH or Dermatitis herptiformis, related to gluten intolerence

  jenvan said:

You should write the magazine a note--and tell them about Celiac too Even articles on allergies not relating to Celiac mean awareness of all these things is growing...

Can't remember what magazine it was, but it was the article that got me to ask my dermatoligist about my rash, which just got diagnosed as Dermatitis Herptiformis, realted to gluten intolerence.

  laurelfla said:

ok, i'm hoping someone can help me out here. i went to the dermatologist for some bumps on my calves. it started maybe back in feb. with one bump on my left calf, just raised and reddish and slightly wart-looking. it itched in the beginning but not for long, and none of them itch now.

so a couple months later i started to feel like crap (celiac disease) and i tried to figure all that out instead, since it seemed so much more important. went gluten-free along about july. fast forward to oct. or so, i noticed the bumps had spread on that same leg and had also spread to the right one. not itchy, and more pink than red, and getting larger. the dermatologist biopsied one a couple of weeks ago and called me Wed and said that they don't know what it is, but are calling it eczema. i now have a very expensive steroid cream to apply 2x daily and have to follow a hypoallergenic skin care routine (which i was pretty much doing anyway). i'm so upset. it's to the point where i can't even wear shorts anymore and i can't shave either (read: gross!!). if i get one more thing to deal with this semester i don't know what i'll do. the dermatologist threw around some really big scientific words i didn't understand, but one of the possible conditions she mentioned could take months or YEARS to go away.

i'm completely gluten-free, all my skin care products are too and have been for months, and it hasn't gotten better, but worse.

does anyone have any experience with this kind of thing?

thanks!!

Have them test for dermititis hereptiformis, my dermo just diagnosed me with this after 20 years witht he rash and if you are gluten intolerant may be DH.

My dermotologist tested me for DH, little blisterlike spots,clear or blood filled on hands, legs, elbows, buttocks, face, which is related to gluten intolorence, on Dapsone, and antibiotic from the 30's or 40's used also to treat leporsy. Seems to be working, not itching like crazy anymore. Had blood test done on 2/27, no results yet. Have had the rash for 20 years, first thought to be eczema and then pustular psoriasis, since it runs in my family. Got asthma when I was 17 after I started getting the rash. Trying to go gluten free even if my blood test come back negative. Just finally glad to find out what the rash is, very uncomfortable and unsightly and painful. Hope this helps.