Hi currently awaiting test results for DH. Life’s been unbearable at times with itching despite now having steroid creams from dermatologist. Any advice? Should I also cut out all dairy.
My scalp is now the worst issue it’s not healing very quickly! I’m talking weeks here???
I don't have DH, but I do have dermatitis whenever I eat gluten. B12 ointment is the best thing I've ever used. It stops the nitric oxide reaction in the skin, so it works on most eczemas. It doesn't solve the cause, that's the only thing. If I stop using the ointment, my dermatitis/eczema comes back. Might be worth a try for yours DH, as it'll give you relief while you need to keep eating gluten, and you can stop down the line if they put you on a GF diet.
i don’t have a solution or answers but I’m in the same position, trying to get a diagnosis for the same thing since August last year. The itching is off the scale keeping me awake at night. I’ve cut gluten and that really helps but as I am awaiting a biopsy I need to still eat gluten unfortunately. Good luck with it, hopefully something will improve soon!
oh wow it’s so good to chat to someone else who understands! Yes I woke up this morning & my 1st thought was itchy arm & that’s how my day goes on trying not to think about it & keeping busy so my hands are busy so knitting, jigsaw, sewing etc. I have seen a dermatologist & have strong steroid cream & another lotion- it did work to start but the rash is returning☹️☹️
It is comforting to know someone else who knows what I’m going through, even though I wouldn’t wish this on anyone else!! I hope you managed to distract yourself from the itchiness today, I was moving house so unfortunately my skin has flared. I do think a strict gluten free diet with help more than the steroid creams, mine are also doing nothing now. I have it on my face also which is not nice to live with at least I can hide it elsewhere. I try to lather in rich creams to soothe it , I’m also trying to drink celery juice every day
We’ll yes & no. Couple of dog walks so got some exercise but very wet again so indoors most of the day☹️. Wanted to go in garden but too wet!!
I haven’t been officially diagnosed as gluten free but was told about 15 years ago I’m intolerant to wheat, rye n barley. So I stick to a gluten free diet to stop myself
being really I’ll with bad stomach etc. Also can’t have oats even g/f ones affect me terrible.
Last year I was really poorly & had fungal pnuemonia amongst other things- officially due to my low immune system due to RA-rheumatoid arthritis.
Wondering now if my rash is connected to the fungal pnuemonia - could it be connected?? When I was in hospital amongst the Drs & nurses daily - no one would listen when I then only had a mild itch on my right arm. It was always worse at night & I had to put cold paper towels on my arm to get any sleep🫣🫣
Now as an out patient it’s worse than ever- the GP doesn’t want to know- I have to wait 2 weeks just for a phone call from Dr to discuss my rash!!
I am trying soya milk this week but it doesn’t seem any better infact I’m wondering if I should stop the soya milk altogether?
It’s an awful situation that medical professionals don’t have any care or interest in the discomfort and obvious issues. Mentally it is soul destroying and it feels like no one cares. It’s a constant fight for help. I have seen 2 doctors and waited 4 months for a dermatologist appt. They’ve taken bloods but I can never get an answer if anything has been picked up. I considered private dermatologists but the wait was still at least 6 weeks. Next step is biopsy but already 6 weeks since I was referred. I hope you get more productive help this year, itchiness is horribly uncomfortable. I did a sensitivity test which picked up a lot of things I’m sensitive to so cutting them out is helping but not cured it yet.
Think I’ll try oilatum in a bath after my dog walk today!!
Today I started to Volunteer at a local Charity shop - so kept me busy & my mind occupied so didn’t think about my scalp all afternoon - just once I got home. Have bought a nice beanie hat to wear at home!!
that sounds like a very good idea - sensible to have a distraction from itchiness!
I don’t have DH. I have been on a GF diet for about seven years but only now - for about one year - I have had Annular erythema. I think it’s because I don’t sleep enough, work too many hours and spend too many hours indoors. Luckily the itching is not there all the time, but when it is it is unbearable. I used to drink milk every day and completely cut it out about one year ago and I rarely eat cheese, so I’m not sure whether cutting out dairy will help with your DH. In any case I hope you get a diagnosis and feel better soon.
yes I keep reading that lots of people who are g/f also have to avoid dairy too. I am giving this a go at home with soya milk but if I go to someone’s house ie:Mum, daughter friends - can’t expect them to have soya milk in the fridge so just have normal milk!!!! So far I’m not convinced although I do quite like the soya milk😀
My scalp is the worst affected area still for me & the liquid steroid solutions I’ve been given is not helping?? I can’t understand why the medical professionals think it’s acceptable to leave people in agony - as minor it might sound but day in day out 24/7 it’s very serious & life changing trying to live with it☹️☹️
The soy milk may be what is the problem. As far as the medical establishment is concerned they are completely ignorant of how to help us. I have had a homeopathic doctor for years and she has been invaluable, but 5 years ago she told me to start taking selenium and then iodine supplements to support my Thyroid. I also suffer from Hashimotos. Because, we did not know that I suffered with DH, at the time, my upper body, neck, face and scalp exploded with DH blisters that took 6 months to heal. That is when I did some research and managed to diagnose myself with DH and that high iodine intake could cause problems with the DH as badly or worse than being glutened.
Hi I have a diagnosis of DH, I was diagnosed with CD in my late 40's and had the rash for a very long time beforehand. When it first appeared I used to get it mainly on my knees and elbows, and it itched like mad, later it appeared on my back.
My GP prescribed Betnovate and steroid creams before they knew what it was which I didn't find helped. I ended up with scarred knees that didn't tan.
When I get it I can feel it starting as though its coming from inside my body under the skin.
It took me around 5 years to completely get rid of it after eating gluten free ( for some reason I thought it would stop very quickly after I stopped eating gluten but I was wrong) and I was prescribed Dapsone medication which helped me a lot.
I took the Dapsone for a month but there are side effects, I think it takes the oxygen from your blood and I found my legs felt heavy and swollen so what I did was only take it when I needed respite from the rash. I found just one tablet used to do the trick when I was laid in bed and I was finding it difficult to get to sleep due to the itching, within an hour it helps me.
If you search for Dapsone, this information appears on Google
Treatment of Dermatitis Herpetiformis
Dapsone generally results in remarkable improvement. Initial dosages of dapsone are 25 to 50 mg orally once a day in adults and 0.5 mg/kg in children. Usually, this dose dramatically relieves dermatitis herpetiformis symptoms, including itching and burning, within 1 to 3 days.
Hope this helps anyone who is suffering as its horrible
Dermatitis herpetiformis is a celiac sprue, you will notice a massive difference if you eat gluten free, I know if I have accidentally ate gluten as my elbows itch then the big blisters form, it should have been picked up in a blood test.
I have had DH for10 YEARS and started having treatment 2 weeks ago again most frustrating. Hope you're treatment works.
What is the treatment if the cause is gluten/coeliac? Is there medication?
Omg how have you coped with DH for 10 years without going crazy??
The worst case of DH I have ever had was following taking an Iodine supplement to support my Thyroid, since I have Hashimotos. Big mistake!! I broke out in hundreds of hives and blisters from the waist up, inside my nose and ears, too. It took 6 months to clear up. With DH, many if not most of us, should never eat grains of any kind and stick to meat, veges, and fruit. No soy, or anything with yeast or molds or foods high in Iodine (shellfish, kelp, etc). Some of us can handle dairy, I drink raw goats milk, but stay away from most cheeses.
You mentioned that your scalp is your problem area. That has always been mine, too, for the past 50 years. I have found that topicals can be a problem because wheat and wheat germ are commonly used in shampoos and conditioners. Here is some info that I gathered from an article a few years ago. Hope it helps .
WHEAT NAMES IN HAIR PRODUCTS
Buying only gluten-free shampoo and other hair care products could save you from several "mystery glutenings" a year ... or more, depending on how sensitive you are to trace gluten.
Unfortunately, hair product manufacturers regard gluten grain ingredients as healthy for your hair, and therefore use them frequently and liberally in shampoo and conditioner. Gluten also appears in hair spray, mousse, and other styling products, since its "glue" properties help hold your hair in place.
There are literally thousands of hair care products on the market today. To help you determine which ones might be safe (and which ones to avoid), I've provided a list of manufacturers that make reliably gluten-free products, plus a list of common ingredients that indicate gluten in shampoo and other products.
Brands That Offer Gluten-Free Hair Products
Fortunately, there's a nice mix of brands that now make gluten-free hair care products, including some budget brands and some more expensive lines.
The following brands of hair care products offer gluten-free shampoo and conditioner:
• Acure. Acure's entire hair care line is gluten-free, including five shampoos and even a dry shampoo (plus the accompanying conditioners). Acure is also sulfate-free, paraben-free, cruelty-free and vegan. If you can't find it locally, it's available online at Amazon.
• Avalon Organics. This all-natural line of hair care products offers one shampoo that's certified gluten-free: its Gluten-Free Cucumber Shampoo. Avalon Organics also offers Gluten-Free Cucumber Conditioner to pair with the shampoo. The hair care line is vegan and cruelty-free. It's readily available online if your stores don't carry it.
• Desert Essence. The company makes six shampoos that are labeled gluten-free: Green Apple and Ginger, Fragrance-Free, Red Raspberry, Lemon Tea Tree, Italian Red Grape, and Coconut. It also makes conditioners to pair with each of those. The products are vegetarian, and Desert Essence doesn't test on animals.
• Dove, which makes tons of personal care products, is a Unilever brand, which means it will clearly disclose any gluten-containing ingredients. Many of Dove's shampoos and conditioners are gluten-free. They're also reasonably priced and available everywhere.
• Jason. Not everything Jason sells is gluten-free, but the brand's Gluten-Free Daily Shampoo and Gluten-Free Daily Conditioner meet the standard (as do the other seven products in the brand's certified gluten-free line). Look for the bright green labels — the gluten-free line is available on Amazon if your local store doesn't carry it. Jason's products aren't tested on animals.
• Kirkland Signature. This Costco brand includes a Professional Salon Formula Moisture Shampoo, and it's labeled gluten-free and vegan.
• Paul Mitchell. Several of this brand's shampoo and conditioner products are considered gluten-free, including Forever Blonde shampoo (but not conditioner), Spring-Loaded Frizz-Fighting Shampoo and conditioner, and Baby Don't Cry Shampoo. To check a specific Paul Mitchell product, you need to visit the brand's website and look in the "details" section for that product. Paul Mitchell is also cruelty-free.
• Pravana. All of Pravana's Nevo hair care products are labeled gluten-free (the line uses hydrolyzed quinoa and soy protein). They're also vegan. Look for Pravana at hair care salons (including Ulta stores).
• Suave. Like Dove, Suave is a Unilever brand, so any gluten-containing ingredients would be disclosed in the ingredients list ... but most or all are gluten-free. Suave is available everywhere and offers some kid-friendly shampoo/conditioner/body wash combinations.
Ingredients That Mean Gluten In Shampoo and Other Products
If you see one or more of the following terms in the ingredients list, it means the shampoo or other hair care product contains ingredients made from wheat, barley or rye. I've also included ingredients that indicate oats, since many of us need to avoid them, as well.
Avena sativa (oats)
Beta glucan (frequently derived from wheat)
Colloidal oatmeal
Dextrin palmitate (starch, possibly gluten-based)
Vitamin E (frequently derived from wheat)
Hordeum vulgare (barley)
Hydrolyzed vegetable protein (may contain wheat)
Hydrolyzed wheat protein
Laurdimonium hydroxypropyl (hydrolyzed wheat protein)
Malt extract (usually barley)
Secale cereale (rye)
Stearyl dimonium hydroxypropyl (hydrolyzed wheat protein)
Triticum vulgare (wheat)
Vegetable protein (may contain wheat, barley, rye and/or oats)
Wheat germ oil
The absence of any of these ingredient names doesn't necessarily mean the product is gluten-free — there are numerous other chemicals (some with very difficult-to-pronounce names) that can be derived from wheat, barley, rye or oats. Gluten-based ingredients can also hide behind catch-all ingredient names such as "fragrance," and the components of these may be a closely-guarded trade secret.
Choosing A Gluten-Free Shampoo and Conditioner
What if your favorite brand isn't listed above, and you're not sure you can trust the ingredients list? Try calling the manufacturer to ask if it's gluten-free or not. People seem to have mixed luck getting information from personal product manufacturers about gluten ingredients, although this problem is beginning to resolve as awareness of continues to rise.
Thank you - yes I have recently changed my shampoo & conditioner to organic gluten free ones.
As I’m not eating gluten I couldn’t think what else could cause the itching- then it dawned on me about washing my hair & I started to look up the ones I had & they were not good☹️
I do think it’s helping but I try not to wash my hair too much if I can stand it. Time will tell eh but unfortunately I have another new rash higher up my arm - so can’t think what else can be an issue.,Regarding grains - I do still eat rice so maybe I’ll have to cut it out too for a while at least.
I diagnosed myself 5 years with DH and since then it has been confirmed by my Homeopathic doctor. I have found that going completely grain free, soy free, no shellfish or foods high in iodine like nori, kelp, iodized salt, etc. I stick to meat, veges, fruit, macadamia nuts, and raw goat milk. My husband is not Celiac, but in deference to me no grains enter our house other than organic oats, for himself. He uses the oats to make oat waffles, but when he eats these, he always washes his hands and face and brushes his teeth before touching me, because I will break out if he doesn't. I also found that topicals can be a problem and had to change out all of my shampoos, conditioners, and lotions. Hope this article helps.
WHEAT NAMES IN HAIR PRODUCTS
Buying only gluten-free shampoo and other hair care products could save you from several "mystery glutenings" a year ... or more, depending on how sensitive you are to trace gluten.
Unfortunately, hair product manufacturers regard gluten grain ingredients as healthy for your hair, and therefore use them frequently and liberally in shampoo and conditioner. Gluten also appears in hair spray, mousse, and other styling products, since its "glue" properties help hold your hair in place.
There are literally thousands of hair care products on the market today. To help you determine which ones might be safe (and which ones to avoid), I've provided a list of manufacturers that make reliably gluten-free products, plus a list of common ingredients that indicate gluten in shampoo and other products.
Brands That Offer Gluten-Free Hair Products
Fortunately, there's a nice mix of brands that now make gluten-free hair care products, including some budget brands and some more expensive lines.
• Acure. Acure's entire hair care line is gluten-free, including five shampoos and even a dry shampoo (plus the accompanying conditioners). Acure is also sulfate-free, paraben-free, cruelty-free and vegan. If you can't find it locally, it's available online at Amazon.
• Avalon Organics. This all-natural line of hair care products offers one shampoo that's certified gluten-free: its Gluten-Free Cucumber Shampoo. Avalon Organics also offers Gluten-Free Cucumber Conditioner to pair with the shampoo. The hair care line is vegan and cruelty-free. It's readily available online if your stores don't carry it.
• Desert Essence. The company makes six shampoos that are labeled gluten-free: Green Apple and Ginger, Fragrance-Free, Red Raspberry, Lemon Tea Tree, Italian Red Grape, and Coconut. It also makes conditioners to pair with each of those. The products are vegetarian, and Desert Essence doesn't test on animals.
• Dove, which makes tons of personal care products, is a Unilever brand, which means it will clearly disclose any gluten-containing ingredients. Many of Dove's shampoos and conditioners are gluten-free. They're also reasonably priced and available everywhere.
• Jason. Not everything Jason sells is gluten-free, but the brand's Gluten-Free Daily Shampoo and Gluten-Free Daily Conditioner meet the standard (as do the other seven products in the brand's certified gluten-free line). Look for the bright green labels — the gluten-free line is available on Amazon if your local store doesn't carry it. Jason's products aren't tested on animals.
• Kirkland Signature. This Costco brand includes a Professional Salon Formula Moisture Shampoo, and it's labeled gluten-free and vegan.
• Paul Mitchell. Several of this brand's shampoo and conditioner products are considered gluten-free, including Forever Blonde shampoo (but not conditioner), Spring-Loaded Frizz-Fighting Shampoo and conditioner, and Baby Don't Cry Shampoo. To check a specific Paul Mitchell product, you need to visit the brand's website and look in the "details" section for that product. Paul Mitchell is also cruelty-free.
• Pravana. All of Pravana's Nevo hair care products are labeled gluten-free (the line uses hydrolyzed quinoa and soy protein). They're also vegan. Look for Pravana at hair care salons (including Ulta stores).
• Suave. Like Dove, Suave is a Unilever brand, so any gluten-containing ingredients would be disclosed in the ingredients list ... but most or all are gluten-free. Suave is available everywhere and offers some kid-friendly shampoo/conditioner/body wash combinations.
Ingredients That Mean Gluten In Shampoo and Other Products
If you see one or more of the following terms in the ingredients list, it means the shampoo or other hair care product contains ingredients made from wheat, barley or rye. I've also included ingredients that indicate oats, since many of us need to avoid them, as well.
Avena sativa (oats)
Beta glucan (frequently derived from wheat)
Colloidal oatmeal
Dextrin palmitate (starch, possibly gluten-based)
Vitamin E (frequently derived from wheat)
Hordeum vulgare (barley)
Hydrolyzed vegetable protein (may contain wheat)
Hydrolyzed wheat protein
Laurdimonium hydroxypropyl (hydrolyzed wheat protein)
Malt extract (usually barley)
Secale cereale (rye)
Stearyl dimonium hydroxypropyl (hydrolyzed wheat protein)
Triticum vulgare (wheat)
Vegetable protein (may contain wheat, barley, rye and/or oats)
Wheat germ oil
The absence of any of these ingredient names doesn't necessarily mean the product is gluten-free — there are numerous other chemicals (some with very difficult-to-pronounce names) that can be derived from wheat, barley, rye or oats. Gluten-based ingredients can also hide behind catch-all ingredient names such as "fragrance," and the components of these may be a closely-guarded trade secret.
Choosing A Gluten-Free Shampoo and Conditioner
What if your favorite brand isn't listed above, and you're not sure you can trust the ingredients list? Try calling the manufacturer to ask if it's gluten-free or not. People seem to have mixed luck getting information from personal product manufacturers about gluten ingredients, although this problem is beginning to resolve as awareness of continues to rise.
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