Is it just me or do other people with celiac disease have these symptoms or something similar?

[Aaron2018]

I have celiac disease and when I eat gluten I have stomach cramps  discomfort and washrooms stuff, but I also sometimes get itchy but it’s not dermatitis herpetiformis and when I get itchy you can’t see anything on my skin , but I can feel it. Is it just me or do others get itchy as one of your celiac disease symptoms?

[Scott Adams]

I used to have DH one small areas of my hand, and before the blisters appeared it would get very itchy. I'm not sure if there is pre-DH condition, but it's possible. Is your diet 100% gluten-free? Also, some people with DH have issues with iodine, which is in dairy, seafoods, etc., so perhaps try cutting back on iodine to see if it helps?

[Aaron2018]

 I eat 100% gluten free I never intentionally eat gluten foods. I work at a grocery store as a grocery clerk and on days I have handled/ put out bags of gluten flour I noticed a few hours later sometimes when I get home or am on brake being itchy , but no normal gluten problems similar to what I would normally experience if I ate a gluten food. Itching happens sometimes and lasts weeks or I can go months without being itchy then all the sudden be itchy again, itching never 100% goes away, I just have had the itching so long that I can put up with it if itching is mild. It’s really common for me to get itchy after touching gluten flour so I think it’s related to me being celiac. I think the itching might be related to gluten because I don’t have a wheat allergy, I don’t have seasonal allergies and I have done an allergy test for wheat, seasonal allergies and other stuff they thought I could be allergic to and tested negative. I have a kitchen shared with other people that eat gluten but I never have a problem at home unless someone was using gluten flour in the kitchen and I was present. being present when gluten flour is in use only makes me itchy like I mentioned , no symptoms like stomach pain , discomfort or washroom problems, that only happens if I eat a gluten food or eat a cross contaminated food that should have been gluten free. When the people that eat gluten are done eating they clean up well , if they use gluten flour they try to plan to use it when I am at work and then clean up really well before I get home. The people that live with me that eat gluten have there own gluten stuff they use that is separate from my gluten free stuff and know not to use my gluten free stuff with gluten foods or ingredients, they don’t use gluten flour that often and if they do like I said they try to do it when I am not home. This itching problem has been going on since 2021 coming and going but not permanently gone.

[Sallymarie]

My celiac is the dermatitis herpetiformis type. I rarely stop itching totally.  I even itch if I stay too long in the bread or baking aisles at the grocery store. I have 13 years of strict gluten free diet and total household,  however you can never totally escape it! I take walmart equate citrazine. 5 mil. Nightly. If I get blisters then I take more for a couple days and if it's really bad I use cortisol cream RX.

[knitty kitty]

Hi, @Sallymarie,

Have you tried lowering the amount of Iodine in your diet?  Iodine makes the antibodies in the skin lots more active.

I have cut out foods high in Iodine, like eggs, dairy, and seafood (crustaceans and kelp) and my DH has subsided.  

Niacin Vitamin B 3 also helps reduce the inflammation and promote healing in the skin.  Other nutrients that help DH are Vitamin D, Vitamin A, and Vitamin C.  

Have you been checked for nutritional deficiencies?

[trents]

1 hour ago, Sallymarie said:

My celiac is the dermatitis herpetiformis type. I rarely stop itching totally.  I even itch if I stay too long in the bread or baking aisles at the grocery store. I have 13 years of strict gluten free diet and total household,  however you can never totally escape it! I take walmart equate citrazine. 5 mil. Nightly. If I get blisters then I take more for a couple days and if it's really bad I use cortisol cream RX.

Have you tried a prescription med known as dapsone? Many with DH say dapsone is the only thing that enables them to completely conquer DH outbreaks.

[Aaron2018]

I don’t have DH from what I have been told by doctors.  I don’t get a rash, just itchy problem that have no visible marks on my body . I do have celiac disease, but I only have symptoms when I eat a gluten food or get cross contamination. When I get itchy it’s not a normal itchy because it can sometimes  happen randomly even when I never ate a gluten food and then all the sudden my stomach, chest and back get really itchy. sometimes I can feel obnoxiously hot and itchy at the same time. When I scratch the itchy spots on my skin it can  feel like the itching is slowly fading away in that spot, then immediately becoming itchy in a different spot. it’s not a normal itchy because normal itchy goes away instantly after scratching the spot that was itchy. The itching will make me have to stop what I am doing sometimes to scratch because it is really hard to ignore most of the time. In the past the itching was mild so I could ignore it most of the time, but now I normally can’t ignore it because it has gotten so bad, the only problem is I can feel it but others can’t see what I am feeling.

[knitty kitty]

@Aaron2018,

Are you taking any nutritional supplements?  Have you been checked for nutritional deficiencies?  

Deficiencies in many of the eight essential B vitamins can cause neuropathy which can feel like an itchy place.  Thiamine, Niacin, Pyridoxine and Cobalamine can all contribute to neuropathy.  

I have had vitamin deficiencies that resulted in random itchiness.  It's the nerve cells not being able to function properly.  Itchiness gets worse as the deficiency worsens and the more nerves become involved.

[Aaron2018]

I take B12 and vitamin D 

[knitty kitty]

There are eight B vitamins.  They all work together.  Our bodies cannot make them so it is essential we get them from our diet.  

Taking just one of the B vitamins can throw the others off.  For example, if you take just B12, you can be using up all your Folate B 9.    Without Folate, Pyridoxine can't work.  Without Pyridoxine and Folate, Riboflavin can't work.  It's a domino effect.... 

Think about getting a B Complex supplement that contains all eight of the B vitamins.  Make sure the Thiamine B1 is NOT in the form thiamine mononitrate (not bioavailable).  Thiamine in the form Benfotiamine has been shown to improve peripheral neuropathy.  Taking a B Complex with a separate Benfotiamine supplement will be fine. 

Edited November 22, 2023 by knitty kitty
Typo correction

[Sallymarie]

4 hours ago, knitty kitty said:

Hi, @Sallymarie,

Have you tried lowering the amount of Iodine in your diet?  Iodine makes the antibodies in the skin lots more active.

I have cut out foods high in Iodine, like eggs, dairy, and seafood (crustaceans and kelp) and my DH has subsided.  

Niacin Vitamin B 3 also helps reduce the inflammation and promote healing in the skin.  Other nutrients that help DH are Vitamin D, Vitamin A, and Vitamin C.  

Have you been checked for nutritional deficiencies?

Thanks, yes I avoid iodine, I make sure salt isn't ionized either  and I take all my MARY RUTHS supplements.  Overall I do good at 72 years old, just get frustrated it is a social nightmare because old people go out to eat for entertainment and socialization!

[cristiana]

On 11/19/2023 at 9:00 AM, Aaron2018 said:

I have celiac disease and when I eat gluten I have stomach cramps  discomfort and washrooms stuff, but I also sometimes get itchy but it’s not dermatitis herpetiformis and when I get itchy you can’t see anything on my skin , but I can feel it. Is it just me or do others get itchy as one of your celiac disease symptoms?

Hi Aaron

I sometimes have extreme itchiness, where I can't see anything on my skin.

At times it has felt like I've been bitten by mosquitoes bodywide, or sometimes it has been just patches of skin, like the nape of my neck, round my waistline, chest, back etc.  When I have a flare changes of temperature makes the itching worse, and the itching does seem to move from one place to the other as you describe.

Anyway, it got bad during one of the lockdowns and I sent a photo to my doctor who suggested it was eczema.   I was skeptical at first but he advised me to use Adex Gel (an emollient with an anti-inflammatory and then, 20 minutes later, apply Betnovate (a prescription strength steroid cream) - and this brought relief.   

During one bad bout I happened to have a blood test and it showed up in my blood - the IgE reading was really elevated. 

I looked at my diet and realised I'd been eating a lot of almonds.  I'd given up eating chocolate and replaced it with Bakewell Tarts (a British cake/tart, full of almonds).  I think almonds were the trigger.  But on another occasion we were on holiday in France and I think the chemicals in the pool might have set it off.

If it turns out to be your problem, one important tip I have learned: it is important to start using the cream as soon as possible to stop the flare in its tracks.

Cristiana

[Aaron2018]

I have been using this cream and it helps but doesn’t permanently prevent itching from coming back. I used the cream for a year in 2022 with out a permanent fix , I don’t use the cream  as often anymore in 2023 because It doesn’t permanently solve my problem, the cream helps itching go away, but some how the itching will randomly  come back when I least expect it. Happens most often when I am at work putting out baking flour. So now I only use the cream when I really need the itching to disappear, but like I said it never permanently goes away. FYI I work at a grocery store as a grocery clerk.

[cristiana]

Hi Aaron

Yes, worth reading some articles about the permanency of this condition it but having done so myself, I came away concluding adult eczema is something that I will need to learn to live with. 

Oddly enough, I when I wrote my post to you I was thinking "I haven't had a flare in ages" - only to be awoken last night with unbelievable itching at the back of my scalp, a hallmark of a flare that could last days or weeks, without treatment.   This time I can't say I've knowingly eating almonds, but I have been using a new shampoo and conditioner.   So tonight I'll be resorting to my usual Neutrogena T/Gel coal tar shampoo or my Philip Kingsley Flakey Itchy Scalp shampoo and toner.  All being well, quick treatment normally works best.

I am sure that Eucerin is very good but you may find it helpful to ask your GP for some prescription strength steroid cream, rather than an over the counter steroid cream which at least in the UK tend to be weaker, to use as well as the moisturiser.   If you do have eczema, it should be very effective at reducing the itching.  It is very important to read the instructions but perhaps best after a bath or shower (not too hot, it dries the skin and makes itching worse), then an application of the moisturiser, then wait 20 minutes to put the steroid cream in the areas that are an issue, very sparingly. 

It really should help nip any flares in the bud.

Edited November 25, 2023 by cristiana

[HayleighNoWhey]

I’ve had eczema since I’ve been a little girl, not sure if gluten has ever made me itchy just extreme stomach cramps. I used to get canker sores all the time when I was eating gluten though 

[knitty kitty]

Could the itching be due to Histamine Intolerance? 

Histamine Intolerance—A Kind of Pseudoallergic Reaction

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8945898/

Evidence for histamine release in chronic inducible urticaria – A systematic review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9365951/

A Histamine-Free Diet Is Helpful for Treatment of Adult Patients with Chronic Spontaneous Urticaria

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5839887/

 

[Aaron2018]

Maybe, my itching is only temporary relieved by antihistamines, I will have to look into that. After avoiding handling, gluten flour, it seems to have decreased itching, so I’m suspicious that it could potentially have something to do with me handling and putting out gluten flour on shelves at work. 

[cristiana]

See link, and extract from it, below.  If this is anything to go by, it would appear that exposure to wheat could cause issues.

https://www.ncbi.nlm.nih.gov/books/NBK538209/

"Deterrence and Patient Education

It is essential to determine the triggers for a patient with atopic dermatitis. Reduction or elimination of these triggers is an important step in the treatment of atopic dermatitis. Patients may see an improvement in their skin and reduced flare-ups if they avoid allergens (commonly dust mites, egg, peanuts, milk, fish, soy, rice, and wheat) and irritants (particularly chemicals, heat, soaps, humidity, acrylic, and wool)."

[knitty kitty]

Hives can also be a symptom of low B12 Cobalamine.

The prevalence of gastrointestinal symptoms and cobalamin deficiency in patients with chronic urticaria

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9960171/

[cristiana]

I remember my gastroenterologist saying to me once, when I was complaining of generalised itching, "Coeliacs get itchy skin".  Our appointments aren't long so I never asked him why.  However, at the time I got the impression that he wasn't talking about Dermatitis Herpetiformis, but generally itchy skin.  He will have seen many hundreds, if not thousands, of coeliacs during his career, so I just thought to myself, itching must be 'one of those things' that we coeliacs can be prone to.  

If I have time to ask at my next appointment, not for a couple of months, I'll see if I can find out what he thinks in most cases is causing this.  But it does look as if @Aaron2018 you have perhaps found your cause.  Reducing your exposure to the wheat flour as much as you can (perhaps opening windows when you need to move it, wearing gloves to wipe down a surface, etc) might help? Also of importance is to find what treatment helps you best.  In my case, it's my trusty Betnovate steroid cream and emollient cream.  And make sure you are on top of any new flares, it seems to me that itching begets itching.

And on that last point, I read somewhere that it can help if you try to apply gentle pressure to an itchy area rather than itch it - it help calm things down.  

I can't recall if I mentioned this but it might be worth having your ferritin levels checked - when I was anemic I remember I had quite itchy skin.

[Aaron2018]

Has any one noticed that when gluten flour has been sitting on your clothes for a while you get itchy afterwards? I have lately noticed that having gluten flour on my clothes sometimes makes me itchy. And when I say on clothes I mean like whiteish gray to the point you can see the flour almost like dust on clothes. I am thankful for everyone’s current helpful information and on going helpful information still to come.