Skin eruptions & celiac disease

karen · Guest

Hi I am recently a self-diagnosed celiac and came to my conclusion after 4 years of chronic skin eruptions and weight loss that I finally recognized when reading about dermatitis herpetiformis at the Mayo Clinic's website.
I have put myself on a gluten-free diet. I have no health insurance and have already spent the equivalent of the National Budget seeking a correct diagnosis to no avail. I am sad and glad I finally found this.
My question is: Does anyone here understand what I am talking about? I don't see a lot of comments about this skin problem associated with celiacs disease.
(It is called "silent" celiac disease with active d.h.)
Thanks for any feedback.
Karen

aklap · Joined: 02 Oct 2004 Posts: 8602 Location: WI, USA

Hi Karen,

Sorry to hear that you have not gotten the answers you've been needing. All to many of us are self diagnosed (yes me too!!). However I do not have DH.

Have you seen the DH forum here? I have posted a few links about DH in it. You can click here: http://www.celiacforums.com/forums/viewforum.php?f=22 A few sites have pictures.

How long have you been on a GF diet and have you noticed any improvements? Have you had any blood tests for Celiac? If you haven't, and are considering doing it in the future - you must be consuming gluten in order for the blood tests to be accurate. I can understand the need to feel better NOW (that's what I did - went GF 1st w/o the blood tests).

Stay with your knowledge quest...you will get the answers you are looking for!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

AustinDH · Guest

Hi Karen,

I have been diagnosed with DH for 14 years. I have taken Dapsone for all of those 14 years and it has been extremely effective, up until about 3 or 4 months ago. I have been on a low dosage, 25milligrams a day, and have never had any problems or side effects, and it kept the itching gross rash completely under control. Dapsone is not very expensive as compared to other drugs in general, even without health insurance. I have started a strict gluten free diet recently because Dapsone was not being effective anymore and I didn't want to dramatically increase the dosage, but the diet is not helping at all so far. Also I am trying to get pregnant and you can't take the Dapsone when you are pregnant or trying to conceive.

I never cared to be gluten free before because the medicine worked so well, but now I know it is generally better to just go gluten free even though I don't really have any intestinal symptons in general. Anyway, if you search the disease name on Google you will get a lot of information.

I hope this helps you.

From Austin, TX

Bob/Lake Tahoe, Ca. · Guest

Karen;
My mother is a diagnosed Celiac and has been GF for the past 25 years. About 10 years ago I started getting rashes in my buttocks area and around my elbows. (classic DH symptoms) For several years I ignored the problem ( classic guy thing), but the severity grew to the point I could no longer do that. I never had a formal diagnosis, but common sense told me to try a GF diet.(actually my mother told me) so I did. I've been GF for about 4 years now. I experienced probably an 80% improvement within a couple months of a GF diet, though I am still not totally rash free, it does stays at a very tolerable level unless I slip up and eat some gluten containing food. Within a couple days the rash will intensify 10 fold and stay very angry for the next couple of weeks. It is very difficult to maintain a totally GF diet, but I am getting better at it. My wife has been very supportive as well and I have become a much better cook.
With DH I have never experienced the weight loss you mentioned, I have always been thin and remain so. I am also very active in sports and workout very regularly. My mother is not especially active nor has she ever worked out regularly and has always struggled to maintain her weight. She is 84 years old and in remarkably good health. GF may not be all bad?

Cuervokid22 · Guest

My husbands mother has had celiac disease her entire life and since her late 20's has been on a strict gluten free diet. My husbands entire life he has has severe skin eruptions which would get worse if he went in the sun or was under stress.since he was very small he has undergone many painfull test with no results.His condition is a "mystery". Thats because most drs in the us are taught that the chance of a patient having celiac is unlikely.Finally after years of proding from his mother and my prodding now that he has married me,we have gone on a gluten free diet. We went on the diet just to see if maybe he had dh and/or celiac.Well,his breakouts have stopped and he hasn't had any stomach or bowel problems. One day last week he slipped and without thinking had a taco bell taco which we now know has food starch in the meat. He was in excruciating pain the entire night and the next morning his entire body had erupted in a bad breakout.Now we are convinced!Years of pain and embarassment from these breakouts and the drs could never tell him what it was. I feel so strongly that its worth it to educate ourselves and others about this disease. I believe it is more common than anyone thinks.

aklap · Joined: 02 Oct 2004 Posts: 8602 Location: WI, USA

harpo · Guest

Karen---I feel for you and the rest of the people that suffer from DH. Mine started 9 years ago. I lost track of the many Dr's i went too in that time. My daughter is a nurse practioner in the Minneaplois area and she was the one that gave me the verdict. That was several months ago and i'am gatting results with a DF diet. My body was so peppered with sores and itched like hell. I cannot describe how bad the itching was and at time still is. Just stick with the GF diet and things will brighton for you. Time is the answer

Harpo

Deb · Posted: Fri Dec 24, 2004 9:41 am Post subject: rash

well--i have been gluten free for over 3 1/2 years now and this week i have developed a rash on both elbows Sad

--has anyone else encountered this--i never have had DH, i always have had dry skin and i do use lots of lotion and yes--i checked the ingredients Wink

--this started on my right elbow, just a small rash, maybe a little bigger than 1" in diameter--very red with raised white spots--gets to itching Rolling Eyes

--i put benedryl on it and then the next day--the other elbow did the same thing--it doesnt seem to get worse or spread, but isnt getting better either--i have tried to remember everything i have eaten and the only thing different is cornbread i made for stuffing last saturday--it did upset my tummy a little, but i do know it is gluten free unless it's the corn bothering me--i dont use corn flour anymore, i used cornmeal for the bread---any ideas Idea

thanks, deb

luvscowznh · Joined: 23 Dec 2004 Posts: 320 Location: Groton, MA

Deb:

I had blood work done by Great Smokies Diagnostics (http://www.gsdl.com/home/) for my food allergies. One thing that really stood out to me is that I have allergies to wheat and CORN gluten. A lot of items say they're gluten free but they have corn in them. I stay AWAY from anything with corn. That may be the cause of your discomfort.

Anyone else have problems with corn gluten??

Guest · Posted: Wed Jan 05, 2005 12:24 am Post subject:

My friend and I decided to try GF because he experienced multiple symptons that pointed toward Celiac Sprue including: muscle tears, sleepless nights, extreme lethargy, D.H. on sides and lower back area, GI distress, and intolerance for milk products.

He can recall the on-going symptoms for about 20 years. We began educating ourselves and through the process of elimination continue to have more good days than bad. The rash completely goes away until he is tainted with something in his diet. As "pure" as we cook and eat we continue to run into items that cause the outbreaks. The reactions can be within minutes or hours. It usually lasts a lot longer.

Some things we have learned that may help you: our kitchen foods are all GF to the best of our knowledge; we cook and invite others to our home and make the adjustments for company instead of the other way around; we take coolers and food with us on all trips and don't leave anything to chance; we no longer try to eat in restaurants; most creams and solutions for rashes contain alcohol and other ingredience that he reacts to and simply complicate the problem; cross the counter deodorant causes him the rash hence we make our own with baking soda (GF) and corn starch (if corn does not bother you) and it works "all day"; most hair products, shampoo, and conditioners contain alcohol...he uses ivory soap and for some reason he does ok with it.

I will add that most of our successes have been made by reading and trial & error. About the time we feel we have conquered this he will experience symptons of being extremely tired, GI distress, and experience brain fog. We have had four years of experience and try to retract our steps. We have also learned that he does not tolerate sulfites and it tends to produce the rash along with other symptoms. Please note that some fishermen keep their catch fresh by sprinkling sulfite on the shrimp, scallops, fish. We have found a stand that sells sulfite free seafood.

As if I haven't said enough, I will add that I have asthma and have been off all of my asthma medicine for nearly a year now. I attribute this to becoming GF in support of my friend and giving up milk products. I went from having a cold almost every month and being antibiotic dependent to one cold this past year and antibiotics only once. Also milk products produce a rash on my arms as well. No milk...no rash.

I hope this is of some help.

SKS

aklap · Joined: 02 Oct 2004 Posts: 8602 Location: WI, USA

luvscowznh · Joined: 23 Dec 2004 Posts: 320 Location: Groton, MA

Thanks for the clarification, aklap. I haven't had a lot of time to research the corn gluten aspect of my allergies - I've just been avoiding corn. Makes life that much more fun! Wink

I am always amazed at how much knowledge you have on this subject!! Thanks for being a great resource for all of us! Very Happy

Manda

aklap · Joined: 02 Oct 2004 Posts: 8602 Location: WI, USA

Hi Manda,

Thanks Smile

It's not that I have a lot of knowledge. I just know where to look for it. Although one would hope after researching this for about 3 years I'd retain a little (hehehe and yet my wife still has to remind me to take out the garbage Smile

) Google is a wonderful thing.

In the corn thing...I remembered seeing something somewhere about corn gluten. I just got luckly and found it again. www.celiac.com is a great site!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa