Can you get DH as a new symptom later on?

[cristiana]

Hello friends

I was DX'd with celiac disease back in 2013 and have been following a gluten-free diet as religiously as I can since then, with a few mistakes along the way.  I was v. badly glutened before Christmas and I now have a very itchy rash come up, just on the nape of my neck and just under the hairline.   I think it's dermatitis and to do with scratching my neck (nervous habit) but made worse because I have to use a lot of hand sanitizer.  I've had a few rashes since using hand sanitizer a lot because of COVID.  I'm just trying to figure out what sort of rash I have and then thought - wait a minute - can you get DH as a new symptom years after being DX'd with celiac disease, and having been compliant with the diet? If anyone knows the answer to this question I'd love to hear from them.

This rash is very itchy and wakes me at night but of course lots of rashes are.   Have showed the rash to two pharmacists - one said psoriasis, just because of the rash's location, but they weren't really looking, and the other thought dermatitis.  The later has put me on a very mild OTC steroid cream for five days to see if it helps.   So far I have only mild irritation since putting on the skin and am resisting scratching it as I don't want to make things worse.  It is a red, bumpy rash but no broken skin or dry skin.  It feels worse when I go from hot to cold rooms and vice versa.  I had a similar rash when my skin touches nickel - that's why I reckon it's dermatitis.

Cristiana

[Scott Adams]

Technically speaking, if you've been 100% gluten-free for two years it is very doubtful that you would suddenly get DH. If, however, you were getting small amounts of cross-contamination, perhaps when eating outside your home, then this is definitely possible. 

Also, having one autoimmune immune disease leaves you more likely to getting others, so psoriasis is also a possibility, and if it is psoriasis of course being gluten-free might not affect this one way or another, although some people with psoriasis do find relief via a gluten-free diet. I agree that the area described is more typical for psoriasis than DH.

If possible, it's best to go to a dermatologist who is aware of how to biopsy your skin for DH to get a diagnosis.

Welcome to the forum!

[JaneWhoLovesRain]

I developed DH almost 2 years after going gluten-free.  Turns out the puffed rice was eating (and it was in the gluten-free aisle) was processed in a non-dedicated facility and there was nothing on the package that said "gluten free."  Good chance that there was cross contamination and that's where I got my dh from.  I learned a lesson from that.

Interesting in that your rash is on the nape of your neck.  That's where mine started.  First one side, then the other.  It sat there itching terribly for about a month before jumping to my elbows, knees and hips. 

[cristiana]

On 1/31/2021 at 2:21 AM, JaneWhoLovesRain said:

I developed DH almost 2 years after going gluten-free.  Turns out the puffed rice was eating (and it was in the gluten-free aisle) was processed in a non-dedicated facility and there was nothing on the package that said "gluten free."  Good chance that there was cross contamination and that's where I got my dh from.  I learned a lesson from that.

Interesting in that your rash is on the nape of your neck.  That's where mine started.  First one side, then the other.  It sat there itching terribly for about a month before jumping to my elbows, knees and hips. 

JaneWhoLovesRain - great name!  (Do you really love rain?   I do, most of the time, but here in England we could do with a bit more sun at the moment!)

Thank you so much for taking the time to send this in.  Until I started this thread, I assumed that people with DH always had it, and it was the rash that finally led to their diagnosis.  And as I had never had DH-like symptoms I had nothing to fear!

That said, I have always had very dry skin and I go through stages of having generalised itchy skin.   I have put it down to iron deficiency, extremes of temperature, harsh soaps, and perhaps cross-contamination in food.  Sometimes I feel as if my skin has tiny little pin-prick itching, almost like mosquito bites, and that is exacerbated by extremes of temperature. I've also had a painful rash where my skin actually ached which I have told was probably shingles.  At the moment it is very much my head and neck, but I have an area near my shoulders, and also on my ankles.  Both sides.  So at least it can't be shingles!  Neutrogena T-Gel is beginning to work, I think, but I believe the H45 cream made it worse (it contains a steroid).  Getting it properly diagnosed at the moment is going to be difficult, but at least I can try to improve my diet. 

I am very careful with my gluten-free diet but had the most horrendous glutening before Christmas where I actually vomited, something I've never done before.  I could hardly walk, I had chills, I felt faint, and sea-sick for days afterwards, with gastritis-like symptoms following.  I do wonder if just that could have set it off?

Anyway, thank you so much again, I will keep what you said in mind.

C.

 

[icelandgirl]

Hi Cristiana,

Such an interesting topic...I don't have an answer, but I have the same type of thing.  On the nape of my neck and into the hairline is a rash that I decided was psoriasis a while ago.  It can be extremely itchy...drives me mad.  And then other times not as much, but it doesn't seem to go away completely.  I've had it for a while and have never had it looked at.  I'm not sure why.  I just assumed it was another autoimmune issue since I already have 2.  I'm extremely careful and don't even eat out, so I don't think it's gluten related at all.  I'm due for a physical this summer so I'll have my Dr. look at it then.

I did find a Cerave cream for psoriasis that is very soothing on it...I don't know if you can find it where you live, but it would be worth a look!

I do hope that yours feels better soon!

[cristiana]

Icey... you too?!  We really must be twins!

One pharmacist seemed to think it was psoriasis and told me it was a typical site for it to occur.  She told me to try Neutrogena T Gel Coal Tar and actually it seems to be working now but it has taken a week of using it every other day.  I read somewhere it is good to wash your hair in the evening and I think that helped too, I just let it dry naturally. I actually didn't have any itching last night!  Yay!  I will look for Cerave Cream here in the UK.  Also, today I'm picking up some raw organic coconut oil to use on my skin which also comes with rave reviews, although I might actually end up putting it in a curry as I love coconut in my curries!

Strangely, years ago my hairdresser saw a rash there and said it looked as if it was a few shingles spots, which may be a bit more like DH to look at?  

[JaneWhoLovesRain]

Yes! I do love rain, and snow, which we are getting a ton of today.

When I first developed the rash on my neck I went to the doctor and he said psoriasis.  The must be standard answer doctors give for rashes that they have no answer for.  I told him I never had posriasis before and he asked me if my parents had allergies.  I told him my mother had hay fever.  Well, he said, that's why I have psoriasis, I inherited her allergies. 😒 When I went back to him after the rash jumped to my elbows, hips and knees he said it was scabies (though there was no rash in the normal scabies areas). 😒  I asked about the possibility of DH and he said no way, that doesn't itch!  I went to another dermatologist and the NP took a biopsy for dh, but she unfortunately took it directly from the lesion, not the area next to a lesion as she should have so that came out negative.  My GI doctor finally diagnosed me.

[cristiana]

Hi Jane... so interesting.... So, out of interest, apart from being super gluten free are there any topical creams that would help?

[icelandgirl]

Yes, we are twins!  Sometimes mine itches more than other times and sometimes not at all...but it does look like pictures of psoriasis plaques that I've seen.  Last night it was very itchy and I just want to keep scratching, instead I put on the Cerave psoriasis treatment and it helped to relieve it.  It does seem to flare up?  But I have no idea what causes that.  And as I said, I've yet to show my Dr.  My last appointment was a thyroid check up and it was a virtual appointment.  Based on how unclear my Dr. looked on the screen I don't think he could have gotten a good look at the nape of my neck...but I will let you know what I find out when I go.  

[knitty kitty]

I've found a tallow balm from Vintage Tradition that is exceptional at helping my skin whether it's eczema, psoriasis or a DH flare.  It really helped when I was deficient in niacin (vitamin B2) and developed an itchy scaly dermatitis.  It got worse when exposed to sunlight.  It looked like flat blisters that dried and flattened into scales and itched awfully.  The more I went outside, the worse it got.  I had this rash around my neck, on arms and legs, and even in my hair!

Tallow balm is made from rendered beef fat and is gluten free.  It is absorbed more quickly and easily into the skin than plant fats.  Tallow balm has used for centuries.  I like it much better than anything else.

https://www.vintagetradition.com/search.php?search_query=Gluten+free

[Kate333]

Hi cristiana!

See a dermatologist for a skin biopsy.  That's the only way you will know for sure.   

A red flag in your OP is your comment that scratching your neck (and any other body areas?) is a "nervous habit"...Scratching the skin leads to more inflamed skin..which leads to more scratching, etc. 

You also mentioned temperature.  I can't speak for others, but I notice my skin feels MUCH drier in the winter in general and in very dry climate. (I lived in Las Vegas for several years, then moved to California 6 years ago.  Unfortunately, California in the last several years has become a literal desert due to extensive, massive, annual extreme heat waves, droughts, raging forest fires.  My body DEFINITELY notices the difference (dry skin, rashes, eczema, nose bleeds, sneezing/congestion, burning eyes).  Since you live in the UK, weather and lack of humidity are probably not much of an issue for you.  But something to consider if climate change has affected the UK over the years as it dramatically has here in the western USA.  Also, "hard" water and hot showers tend to dry me out.  Sanitizers?  My hands have definitely become drier with CV obsession/constant hand washing etc.  but that's probably not your issue unless you sanitize your neck...LOL

Try switching shampoos and get a humidifier and see if that helps.

One other thought:  extreme anxiety may be a big factor in this.  Anxiety often triggers or worsens skin inflammation (everything from acne to eczema to shingles to simply idiopathic itching). Might be worth your while to request a counseling referral or low-dose antidepressant.  God knows we could ALL use "a little extra help" in this stressful pandemic time in our lives.😉

[cristiana]

Thanks Kate, so much of what you write is true of me.  Definitely a nervous habit, and where we live it's hard water.  The hand sanitizer bit is also true as although I don't pour it on my neck, I think having it on my hands when I do scratch has caused issues.  I am a bit on edge at the moment with everything that is going on.  Getting counselling will be challenging at the moment but I think it's time I brushed off Steve Llardi's book again.

And what you say about the weather is true.  Funnily enough, my niece who has itchy skin has just asked for a humidifier for her birthday.  It seems crazy that in such a damp country such a thing is necessary, but I guess all this central heating is doing the damage - we've had it on so much more than normal because of a very cold spell.  And we have had two hot summers in the past couple of years and that actually gave me another rash - heat rash!  

 

 

[cristiana]

5 hours ago, icelandgirl said:

Yes, we are twins!  Sometimes mine itches more than other times and sometimes not at all...but it does look like pictures of psoriasis plaques that I've seen.  Last night it was very itchy and I just want to keep scratching, instead I put on the Cerave psoriasis treatment and it helped to relieve it.  It does seem to flare up?  But I have no idea what causes that.  And as I said, I've yet to show my Dr.  My last appointment was a thyroid check up and it was a virtual appointment.  Based on how unclear my Dr. looked on the screen I don't think he could have gotten a good look at the nape of my neck...but I will let you know what I find out when I go.  

Hi Icey - I've just passed yet another Thyroid panel (I seem to have so many symptoms, but it's always normal - weird) so I think it must be something else with me.  Do you find yours is worse in the winter?  Although my skin is dry it is just really very pink, or red when I itch it a lot.   

[cristiana]

4 hours ago, knitty kitty said:

I've found a tallow balm from Vintage Tradition that is exceptional at helping my skin whether it's eczema, psoriasis or a DH flare.  It really helped when I was deficient in niacin (vitamin B2) and developed an itchy scaly dermatitis.  It got worse when exposed to sunlight.  It looked like flat blisters that dried and flattened into scales and itched awfully.  The more I went outside, the worse it got.  I had this rash around my neck, on arms and legs, and even in my hair!

Tallow balm is made from rendered beef fat and is gluten free.  It is absorbed more quickly and easily into the skin than plant fats.  Tallow balm has used for centuries.  I like it much better than anything else.

https://www.vintagetradition.com/search.php?search_query=Gluten+free

That's fascinating, I think I've heard of Tallow and will see if I can find it here, too.  I think in the olden days they used to make candles out of it?!I've never been screened for B2 deficiency - I think I might ask for it.

Poor you - the rash sounds awful, I'm so glad that you have found such a helpful treatment.

 

[knitty kitty]

Oooh, sorry about the typo.  

That should be Niacin, B3.  It's always good to go by the names.  

Once the niacin deficiency was corrected, the rash has gone away, but it was awful, yes.  

Usually, if you're low in one B vitamin, you'll be low in other ones, too.  Best to take a B Complex to cover all the B's.

And make sure you consume plenty of omega 3 and 6's to nourish your skin from the inside out.  Vitamins A and D are important to skin health, too.

Yes, candles were made out of tallow.  

Edited February 3, 2021 by knitty kitty
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[JaneWhoLovesRain]

11 hours ago, cristiana said:

Hi Jane... so interesting.... So, out of interest, apart from being super gluten free are there any topical creams that would help?

Honestly, when my rash was at it's worst (or even it's best) there was nothing that helped.  It hurt, itched, stung, burn; even taking a shower was extremely uncomfortable.  I used a benadryl topical spray to help with the itching and my doctor told me to use cetaphil soap which I did.  The benadryl helped somewhat.  Not sure if the soap helped but it didn't make things any worse as it's a very gently soap.  .  

[icelandgirl]

17 hours ago, cristiana said:

Hi Icey - I've just passed yet another Thyroid panel (I seem to have so many symptoms, but it's always normal - weird) so I think it must be something else with me.  Do you find yours is worse in the winter?  Although my skin is dry it is just really very pink, or red when I itch it a lot.   

Hi Cristiana,

I don't think it's worse in winter.  I live in Colorado and it's extremely dry here all the time.  Change of season does not seem to affect it.  I'm not sure what makes it flare up...there must be something.  So far, I can manage it with the cream I mentioned, but I do think I should probably have it looked at.

Is yours any better?

[cristiana]

5 minutes ago, icelandgirl said:

Hi Cristiana,

I don't think it's worse in winter.  I live in Colorado and it's extremely dry here all the time.  Change of season does not seem to affect it.  I'm not sure what makes it flare up...there must be something.  So far, I can manage it with the cream I mentioned, but I do think I should probably have it looked at.

Is yours any better?

It is good for about 24 hours after the coal tar shampoo.  I read on a psoriasis site it was good to wash hair in the evening and I think that works best for me.  Yesterday the itching started up again as I went 48 hours without a hair wash, so I would say that the coal tar wash is really helping.  I'm also quite surprised at well it suits my hair type.  It's good stuff.  I still haven't found the cream you recommended but I'd ordered the coconut oil and it is very calming and smells amazing!

BTW - do you have a lot of snow at the moment?  Sorry to go off topic!  

[icelandgirl]

4 minutes ago, cristiana said:

It is good for about 24 hours after the coal tar shampoo.  I read on a psoriasis site it was good to wash hair in the evening and I think that works best for me.  Yesterday the itching started up again as I went 48 hours without a hair wash, so I would say that the coal tar wash is really helping.  I'm also quite surprised at well it suits my hair type.  It's good stuff.  I still haven't found the cream you recommended but I'd ordered the coconut oil and it is very calming and smells amazing!

BTW - do you have a lot of snow at the moment?  Sorry to go off topic!  

I'm glad it's helping!!

No snow here...the Northeast got quite a bit...we are expecting temps in the 60s today and it's sunny...it doesn't seem like winter at all!

[cristiana]

I wanted to update this as my problems with itchy skin has progressed. 😓

I treated the itchy scalp problem pretty successfully with coal tar shampoo, and a product called Skin Salvation made with natural products that you can buy here in the UK.

Things improved.  A few weeks later what looked like a kind of nettle rash on my shoulders. Itchy but the kind of itchiness you can ignore.  Then, within days I got itching on both shoulder blades, lower down in the hollow of on my back at hip level (on the spine) and then a sort of rash across my stomach, like contact dermatitis.  

This woke me at night and I had scratched myself to the point of breaking my skin, so I decided to contact my doctor.  He told me the presentation was most likely eczema and recommended a steroid and a moisturising cream.   The worst of the rash has gone but the itching still persists.  

I have suggested it is DH but it isn't strictly symmetrical.

I've just had my annual blood test.  My TTG is 16 - not ideal, but it is good for me,  as I have never managed to get my level below 14, but it has come down from 20 something in the last year.   Longstanding anemia seems to have corrected itself, as well as a high hemacrit, but what is now showing is a vitamin D deficiency (40) , and for the first time since I can ever remember my eosinophil readings are at 0.6 - normal limit being 0.4.   My other Liver Function Tests and other blood tests are normal. 

I feel quite miserable with the itching and I am just wondering, does DH always have to be strictly symmetrical?  

I'm perimenopausal and wondering if that has anything to do with the sudden appearance of this itching, rather than it being a coeliac thing?  The only  other symptom I currently have is mild gastritis.

[Scott Adams]

Interestingly there is a recent study that shows that Anti-tissue Transglutaminase levels, at least in some people, my also be elevated by dairy. Have you ever gone dairy-free? It's a small study so I'm a little skeptical, as those in the study may have been getting small amount of gluten contamination in their diets.

 

[knitty kitty]

@cristiana,

Does your rash get worse when you're exposed to the sun?

[cristiana]

22 minutes ago, Scott Adams said:

Interestingly there is a recent study that shows that Anti-tissue Transglutaminase levels, at least in some people, my also be elevated by dairy. Have you ever gone dairy-free? It's a small study so I'm a little skeptical, as those in the study may have been getting small amount of gluten contamination in their diets.

 

Yes... I'm beginning to wonder if that's an issue for me.  I can't find it now but  a story was posted on this site recently about a very sick child whose numbers were stubbornly high until they actually gave up dairy. When I read that I did wonder if dairy had been contributing factor as to why my numbers have taken sooo long to drop. 

This study is really interesting, thank you Scott for posting.  I've decided I'm going to give up dairy to see if it helps.  Fortunately I have another full coeliac panel in six months time so it will be interesting to see if finally my numbers go into single figures. 

I really can't figure out why I should suddenly have all these new symptoms.  Something is clearly going on with my raised eosinophil numbers - they've gone up three-fold from my regular readings, so something has triggered this but I can't think what.   

 

[cristiana]

27 minutes ago, knitty kitty said:

@cristiana,

Does your rash get worse when you're exposed to the sun?

Hi Knitty Kitty

No... there's not much sun in England at the moment!

But I do find changes in temperature really aggravates things, as does exercising outdoors.  It's worse under a hot shower.  I also notice that my skin really itches when I lie down but it's the places that are actually in contact with the bed or pillow, when my skin warms up.  I've got allergy covers so I can't think its dustmites.  All very odd.

[knitty kitty]

@cristiana,

Have you heard about autoimmune hives?  

"Chronic urticaria and autoimmunity"

https://pubmed.ncbi.nlm.nih.gov/24305753/

 

Vitamin D helps regulate your immune system.  Getting your level higher (in the 70's or 80's) might help, too.  

If it is DH, cutting dairy can help.  Dairy contains iodine which aggravates DH outbreaks.  Avoiding other foods high in iodine like seaweed, crustaceans,  and even iodized salt, can help with DH outbreaks.

Hope this helps.