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Moderated discussion and help for gluten free, coeliac, celiac, wheat allergies or intoleranceactioning query
| DH as a celiac symptom
| Posted by
|
br />
For a number of years now I have had terrible skin rashes acompanied with a great deal of blistering which appeared mostly on my legs. Even though I have seen many different dermatologists, no one really could say for certain what was causing this disorder.
It wasn't until I had spoken to my sister, who is now on a gluten free diet for the intestinal part of celiac, that I remembered being diagnosed as a celiac when I was a toddler. At the time in the 50's the general thought was that you would grow out of the condition. As all may well know this is not true. On this information my GP suggested that I see a dietitian to see what they could suggest about the skin problem and overall health in general. The dietitian knew right away what I had based on my background and the type of skin problems that I had been going through.
She explained to me that I have Dermatitis herpetiformis, a condition caused when the intake of gluten is turned into IgA (immunoglobulin A) and is depostied in skin layers. Because of the severe reaction by the bodies immune system to the gluten, antibody cells are produced by the immune system, and these cells inturn attack your skin containing the gluten. She also told me that I might or might not have the celiac intestinal problem related to gluten in my diet.
It was not until 1967 that the medical community linked the DH condition with the Celaic condition. In my case the medical commnunity still does not have a full understanding of this condition due to the long time it took actually determine what was causing my skin problems!
I have been on a gluten free diet for almost a month now, and even though I was told it might take 2 years for the skin reactions to stop, they appear to have stopped altogether. After more than 7 years, this is the first time I have not woken up with burning, itching legs. In addition to this I generally feel much better and more rested after each night's sleep.
If you have friends or family that may have this condition on their skin, I would strongly suggest to them to start a gluten free diet and speak with their GP about testing for the signs of the celiac condition. I have not had the celiac tests yet but I have started the diet and my condition has improved a great deal.
Best regards,
Peter St. Amour
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| Re: DH as a celiac symptom
| Posted by Peter
|
Please let me know what the results of the blood tests show.
I think that there are a large group of people who come out negative on the blood test for the coeliac condition, but should still be on a gluten free diet.
Peter
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| Re: DH as a celiac symptom
| Posted by Lyn
|
In case you do not know there is a website especially for DH;
http://www.dhcondition.plus.com
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| Re: DH as a celiac symptom
| Posted by
|
I have had many tests for ecxema including blood tests which showed negative for gluten. However, I saw a Kinesiologist who tested me positive for gluten intolerance. For 8 months I have been on a gluten free diet and have not felt so good for a long time, both bodily and my skin. I have also lost 3kg in weight which is a bonus. My skin is nearly always free from rashes (I am also allergic to formaldehyde which is difficult to remove from the house). I have been introduced to 'Dermatique' which is a natural skin care (creamss/lotions) which I have found to be very good (a bit expensive though). Have a look at the website:
www.dermatique.co.uk
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| Re: DH as a celiac symptom
| Posted by
|
my husband has this and I just started research on this. I have always thought he just had a skin disorder and he told me that certain foods cause this and he shouldnt be eating them but he does, my question is how do you change your diet over night. I want to start preparing his meals so he doesnt have to suffer the skin breakouts which he takes Dapsone for and would rather continue taking it rather then change his eating habits. How do you know for sure what foods have wheat and which ones dont. Its all very confusing to me. Any help would be greatly appreciated.
Thanks for your help
Michelle Kaarto
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| Re: DH as a celiac symptom
| Posted by Peter
|
Look at the thread on what you can and cannot eat on a gluten-free diet.
Peter
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| Re: DH as a celiac symptom
| Posted by
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I was told that I have psorises about 8 years ago and have tryed every cream going and nothing has worked. my aunt has celiac and she thinks that my psorises could be to do with celiac. could this be my problem
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| Re: DH as a celiac symptom
| Posted by
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i was told that I have psorises 8 years ago and have tryed every cream going and none have worked. My aunt has celiac and she thinks that my psorises could be linked to celiac, is psorises linked to celiac
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| Re DH as a celiac symptom
| Posted by Peter
|
Persistant skin rashes are often misdiagnosed as psoriasis.
If the rash persists, a gluten allergy / dermatitis herpetiformis should always be considered.
Peter
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| Re DH as a celiac symptom
| Posted by JANET
|
Just discovered your great site... I self-diagnosed myself with DH having had the most awful breakouts -esp. on my lower legs and hands. At first I assumed this was excema as this was something my son had as a child and I had successfully removed him from steroid cream treatment onto a diet cure... But my condition did not respond and, besides, I have a very good diet.
I cut out gluten and within 2 weeks my skin had almost completely cleared up.
I find I have to avoid the following gluten, citrus fruits except lemons, acidy fruits such as strawberries (such a shame), yeast/fermented products, chlorinated water (difficult) for washing etc, most off-the-shelf cleansing products.
I eat almost without exception organic foods, cook with filtered water & drink only good mineral water, organic wine, gluten-free beer in moderation, no fruit juices except apple, use organic cosmetics & cleansing products, take GLA supplements and use tons of organic oils in salads and warm (not hot) cooking - olive, hemp, flaxseed, sunflower, sesame etc.
Village Bakery do some good organic gluten-free products but not enough ready-made gluten-free products are organic and the two need to go together, I find.
Hope this is useful to other DH 'sufferers'.
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| Re DH as a celiac symptom
| Posted by selina
|
I am a bit stumped . My son was having symptoms indicative of celiac or crohns. I have put off getting him tested because these tests are invasive. I did however got his blood tested and his iga was low but his igg was high. he also had a sed rate of 43 and was iron deficient. I have him on mostly gluten free foods and he also is taking enzymes and proboitics. he has gained a few pounds in a week and has energy.
I remember about a year ago my husband broke out i a rash that didint go away for a few months or more. it has since been gone but what I would like to know is can the dh rash disappear wtithout changing your diet? any info would be greatly apreciated thanks
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| Re: DH as a celiac symptom
| Posted by ARLENE MEYERS
|
I WAS BREAKING OUT IN RASH.....EYELIDS, BACK OF EARS AND NECK.....DERMATOLOGIST DIAGNOSED AS EXCEMA/CONTACT DERMITITIS.AND PERSCRIBED STEROID CREAMS. I HAVE READ THAT THESE CREAMS ARE HARMFUL TO SKIN ETC FOR PROLONGED USE.
I TRIED CUTTING OUT ALLERGY FOODS THAT MIGHT BE TRIGGERS AND CONTINUED TO GET THE RASHES MORE THAN NOT.
RECENTLY I CUT OUT WHEAT AND IT HAS BEEN TWO WEEKS AND I HAVE NOT GOTTEN A RASH. I WONDER IF I HAVE CELIAC DISEASE OR JUST AN ALLERGY TO WHEAT?
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| Re: DH as a celiac symptom
| Posted by Peter
|
Arlene. I would suggest that you continue to follow a completely gluten-free diet. The longer that you stay rash free, the more likely it is that you have the Dermatitis herpetiformis variant of the celiac condition. Discussion with your dermatologist might confirm this.
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| Re: DH as a celiac symptom
| Posted by Mona
|
My Daughter who is 14 was just diagnosed with DH. Her symptoms are the rash on the knees, shoulders, elbows, bottom and back. Sometimes worse then others. We have been doing tests since July and finally got the Diagnosis.
They recommended the gluten-free diet and we have begun but I am such a worry wart. Will she be OK with this? I worry about her friends and going out to eat. I don't want her to feel left out but as of right now , she is handling this better then I am. ANy suggestions or web sites. I just need others to talk to with a postive attitidue and this blog site really seemed to have this.
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| Re: DH as a celiac symptom
| Posted by Peter
|
Once someone has got themselves organised on a gluten-free diet the worries tend to disappear. There is a steep learning curve to start with, but there are many of us who have lived with this diet for a great many years, and don't give it a second thought.
Although the rash is the obvious symptom of DH, there are many other ways that the gluten can affect your daughter, so you may notice a general improvement in her overall health - fewer colds and minor illnesses for example.
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| Re: DH as a celiac symptom
| Posted by Marie
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I was diagnosed with gluten intolerance about 18 months ago (IgA test though, was negative), based on abdominal pains, and susequent elimination diet. Now, in the past three months, I have developed angioedema around my mouth. It waxes and wanes, is VERY painful - burning sensation, does not seem to be associated with anything I eat, and each symptoms worsen with each episode. This rash is also refractive to antihistamines, as well as both topical and oral steroids. I am very careful to avoid gluten, however, as you know, this is sometimes difficult to avoid, knowingly, completely. The rash is striclty angioedemitis, and does not blister. My question, then, is, could this be DH? I have been to an allergist, which had no resolve, and virtually negative allergy testing. The angioedema is so painful it is almost intolerable so I am seeking all the information that I can to find a resolve. I would appreciate any input you could offer.
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| Re: DH as a celiac symptom
| Posted by gordon
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GOOD NEWS !!!! .....there is a new DAPSON GEL available now that works well. I have just started on it and it seems to be working well for DH. It gets dapsone right to the problem area will little systemic damage. It's safe and effective. It's worth a try if you have DH and don't want to keep taking dapsone internally,
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| Re: DH as a celiac symptom
| Posted by Caz
|
Arlene I've had the exact same symptoms as you for a long time now but, about a year ago, they got much much worse red, itchy, swollen eyelids, bad rash round my hairline, on my neck, below my ears (one in particular). I suspected a wheat allergy and went to my GP. He tested me for coeliac (negative) and referred me to the hospital where I was tested for allergies (again negative). Also referred to a dermatologist; he was very unsympathetic, told me my idea of a wheat allergy was rubbish and that I had contact dermatitis and prescribed steriod creams of varying strengths. He also did patch tests on me and I tested positive to cocomidolproply betaine. Finally I was told to resume eating wheat and eliminate c.betaine from my cosmetics. I did both and the rashes returned. I wrote to dermatologist and he told me, again, to stay away from c.betaine but also to eliminate wheat from my diet. If I do that, I am fine. I did a York test a couple of years ago because of bloating (not rashes etc) and it came back positive to wheat, yeast and nuts. After that I restricted my intake of wheat (don't eat a lot of nuts) and yeast but didn't eliminate it fully as there were no rashes. However, I am trying hard to follow a wheat-free diet and, if I do, then I stay rash-free. Every time I have a problem I can trace it back - eventually - to something with wheat in it; even minimal amounts of wheat can cause a problem. I think I am okay with gluten but suspect I have a problem with malt extracts.
It was good to read your post as all the professionals insist that DH occurs on legs, bum etc and because it's on your face, then it's not DH and you can't possibly have a wheat allergy. How stupid can you be ! is their overwhelming reaction. Hope it helps to know you're not alone.
Peter, what are your thoughts ?
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| Re: DH as a celiac symptom
| Posted by Peter
|
Author(s): Kawakami Y ; Oyama N ; Nakamura K ; Kaneko F
Title: A case of localized dermatitis herpetiformis of the face.
Source: Journal of the American Academy of Dermatology (J Am Acad Dermatol) 2008 Feb; 58(2) Suppl: S59-60
Additional Info: United States
"Dermatitis herpetiformis (DH) is an autoimmune blistering disorder first described by Duhring in 1884.1 It may occur at any anatomical site; the typical distribution includes the elbows, forearms, buttocks, knees, and scalp.2 S.I. Katz, Dermatitis herpetiformis. In: I.M. Freedberg, A.Z. Eisen, K. Wolff, K.F. Austen, L.A. Goldsmith and S.I. Katz, Editors, Fitzpatrick's dermatology in general medicine (6th ed.), McGraw Hill, New York (2004), pp. 616–621.2 Although involvement of the face is not uncommon, localization only to the face, shown in our case, is rare."
Author(s): Helander I ; Jansen CT
Title: Localized dermatitis herpetiformis.
Source: Journal of the American Academy of Dermatology (J Am Acad Dermatol) 1987 May; 16(5) Pt 1: 1052-3
Additional Info: UNITED STATES
These papers confirm that rash on the face is not uncommon in cases of Dermatitis herpetiformis.
You mention Cocamidopropyl betaine (CAPB)
To quote from wikipedia:
It is a zwitterionic surfactant with a quaternary ammonium cation in its molecule. It is a viscous pale yellow transparent liquid and is used as a surfactant in bath products like shampoos and hand soaps, and in cosmetics as an emulsifying agent and thickener, and to reduce irritation purely ionic surfactants would cause. It also serves as an antistatic agent in hair conditioners.
Cocamidopropyl betaine is a derivate of cocamide and glycine betaine (a form of betaine). See cocamide for the discussion of the length of carbon chain in the molecule.
Cocamidopropyl betaine is a medium strength surfactant which most often does not irritate skin or mucous membranes. That said, some studies indicate it is an allergen.[1][2][3]
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| Re: DH as a celiac symptom
| Posted by Barbara Buntrock
|
Hi, Where can you get the DAPSON GEL? Is it in the USA and FDA approved?
Is it a script from the doc? My drugstore has never heard of it. Sounds great!
Thanks.
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| Re: DH as a celiac symptom
| Posted by sharon stoker
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I have dianosed myself as dh some years ago without the support of my doctor. The rash has cleared just days after following a gluten free diet and manage to lose some wieght, but what i would like to know is why do i sometimes have a relapse when i eat some of the glutenfree products on sale
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| Re: DH as a celiac symptom
| Posted by Peter
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In the UK it is legal to sell products as gluten-free which use wheat flour processed to remove the gluten. Very small traces remain and some people react to this, or to other proteins from the wheat.
Try and avoid any products which contain this starch
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| Re DH as a celiac symptom
| Posted by
|
yes it can be, i had my DH only 3-5 times in the last 20 years, every break out was about 3-5 month. numerous doctor visit, said it was psoriasis, eczema, washing powder allergy...etc steroids, anti-biotics and anti-histamins after my skin cleared up.
last out break about two month ago dermatologist offered hystology, now they know it was DH. no more itchy night for me, the blisters disappered in 2 days iam on gluten free diet, feeling 60 percent better still recovering after such long time i guess. it took them 20 years to find what was the problem....
I dont belive there is any skin problem without problems inside, but doctors know eczema and psoriasis, steroid cream good for most of it, and they dont want look behind the scene....
good luck with your husband, hope you can figuer this problem out sooner than i did
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| Re: DH as a celiac symptom
| Posted by anita
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i confermed dh with hystology test, and i had it on eyelid, face and neck, it took them about 20 years to figure it out blood test was negative.
try the full gluten free diet my dh disapered in two days
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