There is nothing visible on my scalp, but I can feel little bumps that the doctor thinks are dermatitis herpetiformis (I also get them on my hands, wrists and legs, although these areas have already cleared up on the gluten-free diet).
I know I probably need to be more patient, but the itching is so extreme that it's hard to ignore. I may need to get some adult-sized baby mitts!
Has anyone else experienced this? And, if so, how long did it take to resolve after going totally (ie food and shampoo) gluten-free? And did anything help in the interim?
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coeliacvegan
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Hi Coeliacvegan, And poor you as this sounds uncomfortable. I don't suffer from DH but know that people who do often react to shampoo's so have you tried Johnsons baby shampoo?
This may cheer you up it's a post on the Celiac.com forum about the same subject and I love how they use Johnsons baby shampoo on their dogs then tried it on them selves and their itchy skin cleared up! It's puts a different slant on ''your dinners in the dog'' LOL
You might need antihistamines but I'd rather treat the cause than the symptom something worth considering and talking to your local chemist about though, who will also happily confirm the wheat free gluten free status of a product. It's always worth confirming that a product available in the US is the same as in the EU.
I hope that this helps and please let us know how you get on as this could help other coeliac with DH. And I hope that the itching stops soon.
Hi, You have my sympathy as I had the same problem, If I have even a tiny trace of wheat I react like this and despite some sites saying you can't react to hair products, I do! I had to stop using Pantene as I react badly to it.....I swapped to Head and shoulders and don't have a problem with it at all. I also find that the two in one head and shoulders makes my hair look lovely and shiny and healthy...a big bonus when my thyroid condition affects my hair. I also check out shower gels and hair sprays as they often have a wheat derivative in them .
I am just running into these problems and have had hair loss that are becoming very visible. I'm trying to unlock the problem. Was taken off of hormones and went back on them. My scalp is so itchy but there is no flaking or dandruff. I'm suspecting wheat and thyroid, and am going thru the anxiety of losing my beautiful hair. Any ideas for helping?
Sodium laurel sulphate can also cause itchy scalp in some people.
The zinc in Head and Shoulders seems to help control itchiness, especially if you have something like sebbhoriac dermatitis (not too sure on that spelling!). My itchy scalp has improved a lot since I went low carb and tried to eliminate as much sugar as possible - although it might just be a coincidence, of course.
I used t-gel for years, but since head and shoulders has changed the ingredients I have found that it seems to be the best I've found......and no itchy scalp....been using it since last summer and my scalp has improved loads....
I had the same problem and ended up losing much of my hair. The itchyness went to one of my ears too. I tried all the different shampoos and nothing worked long term until I finally saw a dermatologist and got a diagnosis and then treatment. Best of luck.
Hi Coeliac vegan - I too have dermatitis herpetiformis and was prescribed Dapsone tablets intitially to deal with the itching (although as soon as I went gluten free the itching really subsided and only re-occurred with every accidental/ignorant ingestion of gluten. I have used Head and Shoulders for much of my adult life and certainly feel no reaction to it and do feel it helps with controlling itchy head. I didn't stay on the dapsone very long (as I'd already been gf for 6 months by the time it was prescribed, the glories of the 'speed' which the NHS moves at!) but I did use it for a full month before coming off it. I have once used it since, when I got severely glutened in Borneo (very HARD to eat gf there) but don't need it when I'm in full control of what goes into my mouth. I don't know if any of this helps you but just thought I'd let you know my experiences.
just thought I would confirm that the website I mentioned 'Hand made naturals' does not use SLS in their products, it is in Johnsons baby shampoo though, which is why I buy my grandchildrens' shampoo from this website too.
Thank you everyone for all your help, kindness and advice. It makes such a difference.
I wouldn't normally buy products like Head & Shoulders or Johnson's Baby Shampoo, as the makers don't have good ethical track records. That said, I am desperate! So I have decided to compromise my principles and have bought a bottle of Head & Shoulders.
I used it for the first time this morning, so I will try to be patient and give it time to work... If it doesn't help, I think I may go back to the doctor. I do prefer not to take medication, but, in this instance, I will if there are no other options. I'll also try the herbal nasal spray that I use to treat my hayfever in the summer. I imagine it must act as a natural antihistamine, so it's probably worth a try...
By the way, Jerry, I did like the story about the people using the shampoo they used on their dog. Maybe I should consider using my greyhound's shampoo - I could be bounding over the fields, leaping stiles, in no time!
Thanks again to everyone. Had been feeling really fed up (as well as itchy!), and it really helped to hear from you all.
Johnson's baby shampoo is made from petrochemical waste products. Yum - not great for babies. As such, there's no reason why it should contain any gluten, but if you've already got scalp problems I'd recommend a company like Faith in Nature or Green People. And, if it won't affect your appearance too badly, I'd recommend experimenting with washing your hair less often, or using just water every other day. I have psoriasis on my scalp (although now I wonder if it's DH) and have found the best thing for itching is regular water washes and less shampoos. Good luck.
Hello again, everyone, just thought I'd give you an update, as you've all been so kind.
A few days into using Head & Shoulders, the itching seems very slightly better (don't think it's wishful thinking on my part!). I'll certainly persevere with it for a while anyway, although in the long term, I would prefer to return to using something a little more natural (I do know what you mean, LHine).
More excitingly, I went to have my hair trimmed yesterday (taking my own shampoo with me!), and my hairdresser said she could see lots of new hair growth coming through. Am so happy about that, as prior to my coeliac diagnosis, my hair had been clogging up the plughole every time I washed it. So it seems the gluten-free diet is making a difference on that front too. What a relief!
Thanks again for all the support on this. Am pleased I found this site!
So glad go you. I am going through this and very upset. Trying to find solutions with and without my doctor. I'm concerned about regrow TJ. Any ideas to help? Very itchy scalp, no flaking.
Don't forget to condition you hair every wash, this stops it from gettin brittle and snapping....b12 is good for hair..
My hair went very thin last year, and fell out, I use to dread washing cos the amount that came out, plus my pillow would be covered every morning, I started a routine of using conditioner every wash and I used moisturises for brittle hair, African pride made a great one......you just leave it in your hair over night or whenever you not goin out....
My hair is in great condition now and no longer is breaking or fallin out..
Had the same problem. Tried all the above then was bought Aveda Rosemary & Mint shampoo and that helped cool everything down. Also was bought Philip Kingsley Itchy Flaky Scalp Shampoo and Philip Kingsley Scalp Tonic - the one for, you guessed, Itchy Flaky Scalps. I just use the latter when it is distracting. They aren't cheap but if it works .... And at the moment my scalp is good. I'm told Aveda might send/give you a sample and QVC, Waitrose and John Lewis sometimes do travel size sets of Philip Kingsley's Itchy Flaky range - they also have a website.
After a few days on the Head & Shoulders (so to speak - sounds like I've been doing acrobatics!), unfortunately my scalp seems worse. The itchiness is about the same, but the skin on my scalp, which looked clear before, is now flaky.
So... to plan B. Have switched to Simple shampoo and conditioner (thanks for the tip, Vince!), as their products were readily available in my local chemist and not too expensive. Have only used them twice so far, and have not noticed any change in the itching yet, but, on a positive note, the flakiness has already gone.
I think I'll look into the Aveda and Philip Kingsley products too (thanks, Jacks), as back up. Looks like this could be more complicated than I'd thought!
Due to a hernia i was unable to digest bread so i have now stopped eating wheat .I had an endoscopy before hernia op and no damage to the Villi was found although i wasnt eating wheat at the time .I have had an itchy scalp for years get some redness around foreline too and never thought it could be diet .Since stopping wheat i dont get so many headaches ,joint pain or bloating but i still have an itchy scalp not quite as bad i must say so now i will try some of the suggestions here as it is so aggravating .
Have you thought about cutting out other sources of gluten besides wheat, if you don't already? Hopefully that, and using gluten-free shampoo and conditioner, will make a difference to both our itchy scalps! It really is the most irritating problem, in both senses of the word!
Hi Coeliacvegan - did you have this problem before going GF? I ask as as a child I have bad itching and Psoriasis bumps on my head for years as a child and the Dr said I'd 'just grow out of it'. Also had similar on knees and elbows. I was prescribed Benovate (netdoctor.co.uk/skin-and-ha... and Polytar shampoo (pharmacy2u.co.uk/polytar.html which smells of tar but in a nice way). As I got older this settled down and I just used Head and Shoulders. Then when I was diagnosed with CD & went GF it all improved but I began to get flare ups of old symptoms i.e. eczema, psoriasis. So I'd say based on my own experience it seems like these flare up as the body is adjusting to the new diet. Being older and wiser I didn't want to use Benovate as it's quick harsh on the skin. So I searched out more natural shampoos. I found this one by Green People v good. You can buy it in most health shops, Planet Organic or online. It is around £9.99 but is actually well worth it (and I wash my hair every day unfortunately). I asked them if it was GF at the Allergy Show last year and they confirmed it was so that's a bonus. It's kind of like a honey texture and also seems to plump up fine hair. Give it a whirl. greenpeople.co.uk/rosemary-... Most hairdressers always say that Head & Shoulders is very harsh. The Kingsley range is meant to be good - check out QVC.co.uk as they always have good offers and deals on his stuff. Hope that helps.
PS I also went DF for 3mths recently and noticed all my skin & scalp improved you may want to try this and see if you notice any difference.
Thanks for your suggestions. Am still on my quest to find a (gluten-free) shampoo which will ease my scalp, so your advice is very welcome, and I will look into Green People.
This is a problem that pre-dates going gluten-free by a long long way, as I have been struggling with this and other skin problems (now thought by my GP to be DH) since childhood, so you could well be right about the adjustment period. My own research into gluten-related skin complaints (primarily DH) suggests that they are often one of the last things to improve on a gluten-free diet, typically taking at least six months, so maybe I just need to be patient (and sit on my hands!).
Incidentally, I already avoid all dairy, meat and fish, so am hoping there's nothing else I need to remove from my diet...
Thanks again to you and everyone else for the fantastic response to this.
As a postscript to the above, I wondered if anybody had tried using a showerhead filter? A friend recommended I get one, as she says chlorine and general water impurities (I live in a hard water area) can cause scalp and skin itchiness and dryness.
In my continuing state of desperation (now on shampoo number five!), I think it's probably worth a go, but I'd be interested to hear if anybody else has any experience of one.
Sorry it is still ongoing. Although your water supply may be part of the problem, are you still ingesting something that is setting you off.
Shortly after my diagnosis I read that Dermatitis Herpetiformis was said to be exacerbated by Halogens in foods. Fortunately my water supply does not (yet) have added fluoride, but my water supply smells incredibly chlorinated. Bromine is apparently still in the food chain.
My DH does show improvement on a reduction of iodine but the dermatologist insisted I didn't remove it completely - I suppose there's the thyroid worry and who needs another problem!
Will a showerhead filter be efficient enough at removing chlorine? At the end of it all it may be worth asking to see a dermatologist.
Think you may be right about the showerhead filter. Have been giving it a go (in my desperation!) but have not noticed any real difference yet. In fact the only obvious change is the reduced water flow which is making it more difficult to rinse my hair properly - not quite the result I was hoping for!
Aside from gluten (and dairy, as I am vegan), I have not attempted to cut out anything else from my diet so will look into halogens and iodine, if they might be exacerbating my DH. Incidentally, although the doctor is convinced the problem is DH (as it fits with my CD and matches all the medical criteria), it hasn't been formally diagnosed, as apparently I would need to be consuming gluten again before I could have a skin biopsy, and I am not prepared to compromise my health (again) by reintroducing gluten. This does mean I haven't seen a dermatologist, so I've been pretty much working this out for myself - or trying to!
I really appreciate your help and advice. It makes such a difference to hear from someone with the same problem.
I have found that my itching on my scalp is from gluten but also found that if I eat anything with distilled vinegar ie. ketchup, mustard, bbq sauce, salad dressings the itching occurs as well. Try eliminating as well. It was the answer for me. I can not believe how bad the itching was and now it's gone!!
In addition to eliminating distilled vinegar products. (Don't forget distilled vinegar is also in some baked beans, relish etc.)Also try using Desert Essence Organic fragrance free shampoo if you still have issues.
I suffer from an itchy scalp whenever I ingest wheat. What I've found that helps massively is massaging raw (it has to be raw) coconut oil into my scalp and leaving for around half an hour before washing. Try to use it sparingly though as if you put a lot in it can be difficult to remove. If you do happen to use too much then conditioner removes it. Hope it works for you
I had itchy head for 6 years so bad I limited my interaction with people.. always scratching. On advice my daughter got from a patient of hers, she's a physiotherapists, I went totally Glueten free and about 11 months in being COMPLETELY glueten free I woke one day and mid morning my wife declared she hadn't had to brush my shirt once= my itch had completely gone away. My daughters patient who had my issue said it took her about 17 months before her itch went away. I've been glueten free for close to 3 years now and I can now eat gluetin on special occasions with no effect ie: Eat cake on my birthday. Glueten free works.
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