SkinSafe

[Itsabit]

Hi. I’m 70 years old, and a 22 year survivor of head and neck cancer treated with chemo-radiation, which resulted in non-existent submandibular salivary glands and extreme dry mouth and altered oral mucosa. I have been using dry mouth toothpaste, Rx oral dentrifices and moisturizers for years. 

I’ve recently been diagnosed with severe celiac dermatitis herpetiformis. I was being treated with oral Dapsone, but it was not effective and I developed some serious side effects. So, the medication was stopped and I was started on Doxycycline (another antibiotic) for inflammation. I’ve been using Rx Betamethasone steroid ointment with little to no effect. I have tried every oral and topical antihistamine treatment available OTC. None have touched this horrible relentless itching. That is my history. 

Now to my question. Does anybody know about gluten free toothpastes and mouth moisturizers? I ask because a very common dry mouth brand stated to me that they were indeed gluten free. But as I am not getting any better with my dermatitis herpetiformis, I was wondering if I was getting glutenized some way other than diet as  I have been following a strict clean gluten free diet, but I am not seeing any improvement at all. So, I started looking up the toothpastes and moisturizer ingredients individually and nine (9) of the eleven (11) or so listed showed up as   containing gluten or that may have gluten! Am I getting glutenized orally by these products?  As an aside, I checked on my favorite lavender scented baby lotion which is supposed to be gluten free, but many of those ingredients when investigated separately, show they  do contain or may contain gluten as well. I stopped using the lotion. But I cannot forgo my dental care. I was unable to get any information from the manufacturer of my current brand of chewable multivitamins either. They told me to check with my doctor. If THEY don’t know what’s in their product, how do they think a PCP will? 

In light of all this, I am confused and angry that I might keep getting contaminated with gluten through products I am using that are supposedly gluten safe. *I should also state that I have a nickel allergy since I was about 12-13 years old. And I developed a contact allergy to latex (gloves) when I was a student nurse at 19 years old. 

I know and I’m sorry that this is so lengthy. I’m trying to do everything I can to combat this condition, and I’m feeling very confused, anxious and angry about not getting adequate information as I try to educate and advocate for myself. I’m hoping someone here is more knowledgeable than me of how to navigate through all of this. Can anyone offer any advice? 

Thank you for your time. 

Respectfully, 

Linda

[trents]

Welcome to the forum, Linda!

Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas.

I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks.

By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.

Edited March 9 by trents

[Russ H]

It can take between 6 months and 2 years for the dermatitis herpetiformis rash to resolve. The symptoms of dermatitis herpetiformis arise from deposits of certain antibodies building up in the skin. These deposits attract immune cells leading to inflammation and blistering. It can take 10 years for the deposits to be reabsorbed although symptoms resolve long before this.

[Jacki Espo]

For me I gave up oat products and it finally cleared. I had a whole body reaction for months. Two additional culprits for me: shared grill at a restaurant or a shared toaster. 

Hope you have relief soon. 

[Itsabit]

Reply to Trent’s,

Hi. Thanks for the welcome but I would truly rather to not have to be here. I’ve been researching everything I can about this dermatitis herpetiformis. I did read about Iodine, but to be honest I didn’t think it could be me. Maybe wishful thinking would be more likely. I already have so many eating issues from long term effects of radiation, that going gluten free is hard enough. Add to that low iodine and I may just as well not eat at all.  I’ve never been a big meat eater. I eat it, as well as poultry, pork, etc., but small portions. I have not been able to eat most fruits due to the burning and stinging of my mouth, tongue and throat, and the sour taste. Same with condiments containing vinegar. Mayonnaise I can handle. Mustard, ketchup, salad dressings, pickles all burn like the dickens, as does fruit, esp citrus. I dip the tines of my fork into a mild dressing when eating salads. I am able to eat a banana as long as I drink water right away, with it still in my mouth. Strawberries taste like I poured salt on them.  Fruit juices are a no go as well. And I use gravies and non-spicy sauces to moisten everything I eat. That leaves me with vegs, dairy and carbs. I’ve recently gone gluten free. But dairy! I love. It’s cooling and soothing to my burning mouth. Milk, cheese, ice cream, eggs…all big in iodine.  I am unable to swallow any pills whole any longer, so I have to crush or chew them and I have been mixing them in yogurt of late. I like most vegs, but I use butter on them. I don’t add table salt on anything, iodized or not. Carbs are pretty much self explanatory; soft, easy chew, easy to swallow. I’ve purchased gluten free versions, but have not even tried them yet. No desserts because of gluten. I like and would use peanut butter, though not frequently.  I only am able to drink water. No coffee or tea because caffeine now keeps me awake. Tea leaves a squeaky dryness in my mouth, (as do apples). I can’t drink any carbonated drinks because the bubbles burn and sting my mouth and throat. Same thing goes with alcohol. No beer, wine or hard liquor of any kind.

I have requested a serum iodine level to be ordered. I have a vitamin B12 level already ordered, and I am awaiting results of my skin biopsy. If this turns out to be iodine related, I don’t know what I’m going to do. Gluten free is bad enough - but it’s managable. Low iodine is another story altogether. I’m terrified. But I thank you for mentioning it and bringing it to the forefront of my mind from the back of it. 

[Itsabit]

Reply to Jackie,

Thank you. I have not been eating any oats at all, but I am aware of a possible correlation. And I already rarely eat out, and not recently. So, whatever this is, I’m doing it to myself, somehow. 🤷‍♀️

[Jacki Espo]

I should add that I had a flare up I think was from cross contamination and during that time I ate gluten free chips and immediately had severe itching at the breakout site. I suspected it was the iodine in the salt from the chips that did it. It seems like iodine may impact a flare up but does not impact me if I’m otherwise not experiencing the rash.  Good luck. Wishing you the best. 

[Itsabit]

Reply to Russ H,

Thank you for your input. As a nurse for 46 years I was aware of much of this. However, as a new member to dermatitis herpetiformis, I have been reading and researching everything I can about it in order to educate and help myself. I was hoping that the oral Dapsone would help to alleviate the itching. I knew the rash would take longer to abate. Instead of relief from the Dapsone, I had adverse reactions so had to stop it. After 2 months on it, if hadn’t helped with the itching at all, and I understand it usually helps in the first few days if it’s going to. My itch and rash actually got worse on the Dapsone and with going gluten free - which lead me to question whether I was getting glutined from other products I am using. It’s like a huge puzzle trying to put all these pieces together to somehow make it fit and make sense. Right now, myself and my doctor are perplexed. 

[Itsabit]

11 minutes ago, Jacki Espo said:

I should add that I had a flare up I think was from cross contamination and during that time I ate gluten free chips and immediately had severe itching at the breakout site. I suspected it was the iodine in the salt from the chips that did it. It seems like iodine may impact a flare up but does not impact me if I’m otherwise not experiencing the rash.  Good luck. Wishing you the best. 

Thank you for your reply. I’m beginning to think of iodine as another culprit in this, as much as I fear it. I will say my rash is extreme and diffuse - it’s everywhere! I first had it on both sides of my neck in the summer of 2023. My PCP and dermatologist at the time, thought it was a reaction to jewelry I was wearing, even though I had been wearing the same necklaces for literally years with no reaction. The dermatologist at the time repeated over and over again that “allergies are acquired.” Which I knew. But I was not reacting to any other jewelry I was wearing. So it didn’t make any sense to me that it would only be from my necklaces. Anyway, it abated on it’s own. Only to come back with a vengeance months later - and I had not worn any necklaces at all. And the rash involved more area. I was put on Prednisone (oral steroid) taper and it worked well, and the itch and eventually the rash went away. Another trip to a different dermatologist at that time, prior to starting the Prednisone, told me to change all of my hygiene products like soap and shampoo, and to slather on Vaseline. None of which worked, hence the Prednisone. Needless to say, the itch and subsequent rash returned - and now spread everywhere, not just the hollows on both sides of my neck. It’s there, on my upper chest and left breast, both upper arms front and back, and elbows, my entire back, down both of my hips and buttocks and the front of my right thigh. Now the back of that right thigh is starting to itch as well. Also my lower right forearm and middle knuckle on my left hand since going gluten free. I’m just itching everywhere all the time. It keeps me awake, or wakes me up when I do fall asleep. I’m trying my best not to scratch, but it’s nearly impossible! I’ve been using a dry washcloth to rub instead of scratching. And I have used cool wet washcloths which help, but only lasts for a few minutes before starting up again. I’m pretty much at my wit’s end. Just waiting for something to indicate what’s really going on so I can do SOMETHING to stop it! 

[Itsabit]

2 hours ago, Itsabit said:

Reply to Trent’s,

Hi. Thanks for the welcome but I would truly rather to not have to be here. I’ve been researching everything I can about this dermatitis herpetiformis. I did read about Iodine, but to be honest I didn’t think it could be me. Maybe wishful thinking would be more likely. I already have so many eating issues from long term effects of radiation, that going gluten free is hard enough. Add to that low iodine and I may just as well not eat at all.  I’ve never been a big meat eater. I eat it, as well as poultry, pork, etc., but small portions. I have not been able to eat most fruits due to the burning and stinging of my mouth, tongue and throat, and the sour taste. Same with condiments containing vinegar. Mayonnaise I can handle. Mustard, ketchup, salad dressings, pickles all burn like the dickens, as does fruit, esp citrus. I dip the tines of my fork into a mild dressing when eating salads. I am able to eat a banana as long as I drink water right away, with it still in my mouth. Strawberries taste like I poured salt on them.  Fruit juices are a no go as well. And I use gravies and non-spicy sauces to moisten everything I eat. That leaves me with vegs, dairy and carbs. I’ve recently gone gluten free. But dairy! I love. It’s cooling and soothing to my burning mouth. Milk, cheese, ice cream, eggs…all big in iodine.  I am unable to swallow any pills whole any longer, so I have to crush or chew them and I have been mixing them in yogurt of late. I like most vegs, but I use butter on them. I don’t add table salt on anything, iodized or not. Carbs are pretty much self explanatory; soft, easy chew, easy to swallow. I’ve purchased gluten free versions, but have not even tried them yet. No desserts because of gluten. I like and would use peanut butter, though not frequently.  I only am able to drink water. No coffee or tea because caffeine now keeps me awake. Tea leaves a squeaky dryness in my mouth, (as do apples). I can’t drink any carbonated drinks because the bubbles burn and sting my mouth and throat. Same thing goes with alcohol. No beer, wine or hard liquor of any kind.

I have requested a serum iodine level to be ordered. I have a vitamin B12 level already ordered, and I am awaiting results of my skin biopsy. If this turns out to be iodine related, I don’t know what I’m going to do. Gluten free is bad enough - but it’s managable. Low iodine is another story altogether. I’m terrified. But I thank you for mentioning it and bringing it to the forefront of my mind from the back of it. 

 

[Itsabit]

16 hours ago, trents said:

Welcome to the forum, Linda!

Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas.

I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks.

By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.

 

[knitty kitty]

Hello, @Itsabit,

Your journey sounds very similar to mine.  

I'm very concerned about your diet since you say you don't eat a lot of meat, which is the main source of B vitamins.  Nutritional deficiencies go along with Celiac Disease.  Blood tests are not accurate measurements of deficiency states.  The body robs stored vitamins from organs to circulate in the bloodstream to supply the brain and heart.  You can have deficiency symptoms before blood levels change.

I have a hypersensitivity to sulfites, so much so that I had to switch my toothpaste to one that doesn't contain Sodium Lauryl Sulfate.  SLS can cause oral irritation as a side effect, too.   My mouth would burn and I avoided certain foods.  Dapsone contains sulfites, as do antibiotics.  Treatment with sulfites can precipitate a Thiamine deficiency disorder because sulfites cut thiamine in two making it useless.

https://pubmed.ncbi.nlm.nih.gov/35506963/

https://pmc.ncbi.nlm.nih.gov/articles/PMC10506142/

I have an allergy to nickel, also.  Zinc helps keep other metals in balance in the body.  Zinc is also terribly important to skin health and oral health.

https://pubmed.ncbi.nlm.nih.gov/8445075/

https://pmc.ncbi.nlm.nih.gov/articles/PMC11274920/

https://pubmed.ncbi.nlm.nih.gov/1977254/

Thiamine (Vitamin B 1) deficiency disorder symptoms and altered thiamine metabolism can occur after radiation or chemo.   Thiamine and Niacin B 3 are important in nerve conduction.  When I was very malnourished, I had paresthesia that made me feel itchy all over, and made my dermatitis herpetiformis extremely unbearable.  The form of Niacin that causes flushing, Nicotinic Acid (not the same as nicotine in cigarettes) is beneficial because the flushing helps open the small capillaries in the skin which allows the antibodies to be cleared and disposed.  Pellagra can occur in Celiac Disease.   I had it, and my doctor didn't properly diagnose it, either.   I had a rash around my neck, Casal's Necklace, along with a blistering rash on my arms and any skin exposed to the sun.  

https://pubmed.ncbi.nlm.nih.gov/8445075/

https://cgp.iiarjournals.org/content/10/4/169

https://pmc.ncbi.nlm.nih.gov/articles/PMC11722086/

https://pmc.ncbi.nlm.nih.gov/articles/PMC6780714/

https://pmc.ncbi.nlm.nih.gov/articles/PMC10229844/

https://pubmed.ncbi.nlm.nih.gov/1977254/

You should be checked for more than just B12 deficiency.  The eight B vitamins work together, and we need more of them when we're trying to heal.  They are water soluble, so the body can easily excrete them if not needed.

Have you had your Vitamin D level checked?  Vitamin D regulates the immune system and lowers inflammation.  

I hope you can find some benefit from my experiences.  Keep us posted on your progress.  

P.S.  When trying not to itch the dermatitis herpetiformis, if you press gently on a large area (press with your whole hand) above the itchy spot, the itchiness goes away.  The bigger area of stimulation drowns out that one jangling dermatitis herpetiformis itchy nerve in the brain.

For skin care products, I use tallow balm which is absorbed better into the skin than petroleum products or plant products.  Tallow balm (Vintage Traditions is my favorite) helps my Dermatitis Herpetiformis spots look and feel better quickly.  Tallow soap and olive oil soap is beneficial as well.

Edited March 10 by knitty kitty
Typo correction, added post script

[Itsabit]

9 hours ago, knitty kitty said:

Hello, @Itsabit,

Your journey sounds very similar to mine.  

I'm very concerned about your diet since you say you don't eat a lot of meat, which is the main source of B vitamins.  Nutritional deficiencies go along with Celiac Disease.  Blood tests are not accurate measurements of deficiency states.  The body robs stored vitamins from organs to circulate in the bloodstream to supply the brain and heart.  You can have deficiency symptoms before blood levels change.

I have a hypersensitivity to sulfites, so much so that I had to switch my toothpaste to one that doesn't contain Sodium Lauryl Sulfate.  SLS can cause oral irritation as a side effect, too.   My mouth would burn and I avoided certain foods.  Dapsone contains sulfites, as do antibiotics.  Treatment with sulfites can precipitate a Thiamine deficiency disorder because sulfites cut thiamine in two making it useless.

https://pubmed.ncbi.nlm.nih.gov/35506963/

https://pmc.ncbi.nlm.nih.gov/articles/PMC10506142/

I have an allergy to nickel, also.  Zinc helps keep other metals in balance in the body.  Zinc is also terribly important to skin health and oral health.

https://pubmed.ncbi.nlm.nih.gov/8445075/

https://pmc.ncbi.nlm.nih.gov/articles/PMC11274920/

https://pubmed.ncbi.nlm.nih.gov/1977254/

Thiamine (Vitamin B 1) deficiency disorder symptoms and altered thiamine metabolism can occur after radiation or chemo.   Thiamine and Niacin B 3 are important in nerve conduction.  When I was very malnourished, I had paresthesia that made me feel itchy all over, and made my dermatitis herpetiformis extremely unbearable.  The form of Niacin that causes flushing, Nicotinic Acid (not the same as nicotine in cigarettes) is beneficial because the flushing helps open the small capillaries in the skin which allows the antibodies to be cleared and disposed.  Pellagra can occur in Celiac Disease.   I had it, and my doctor didn't properly diagnose it, either.   I had a rash around my neck, Casal's Necklace, along with a blistering rash on my arms and any skin exposed to the sun.  

https://pubmed.ncbi.nlm.nih.gov/8445075/

https://cgp.iiarjournals.org/content/10/4/169

https://pmc.ncbi.nlm.nih.gov/articles/PMC11722086/

https://pmc.ncbi.nlm.nih.gov/articles/PMC6780714/

https://pmc.ncbi.nlm.nih.gov/articles/PMC10229844/

https://pubmed.ncbi.nlm.nih.gov/1977254/

You should be checked for more than just B12 deficiency.  The eight B vitamins work together, and we need more of them when we're trying to heal.  They are water soluble, so the body can easily excrete them if not needed.

Have you had your Vitamin D level checked?  Vitamin D regulates the immune system and lowers inflammation.  

I hope you can find some benefit from my experiences.  Keep us posted on your progress.  

P.S.  When trying not to itch the dermatitis herpetiformis, if you press gently on a large area (press with your whole hand) above the itchy spot, the itchiness goes away.  The bigger area of stimulation drowns out that one jangling dermatitis herpetiformis itchy nerve in the brain.

For skin care products, I use tallow balm which is absorbed better into the skin than petroleum products or plant products.  Tallow balm (Vintage Traditions is my favorite) helps my Dermatitis Herpetiformis spots look and feel better quickly.  Tallow soap and olive oil soap is beneficial as well.

Thank you for your response. It has some good information for me to investigate further. In answer to your question about Vit D, yes, and it was normal. I am having the B12 level done today. Additionally, I am going to have a urine to test for iodine, after a correlation with it to dermatitis herpetiformis was mentioned in another post. I had read that in my research as well. I am praying that I don’t have that! The dietary restrictions, esp when combined with eating gluten free are horrendous! Talk about malnutrition! Anyway, one step, one day at a time. I’m trying not to get ahead of myself. Not easy. 

[Scott Adams]

Most toothpastes are naturally gluten-free, but this article may be helpful:

 

[knitty kitty]

@Itsabit,

Ask your doctor for an erythrocyte transkelatose test to measure thiamine.  It's a better measure of thiamine deficiency than a serum test.

[Itsabit]

I will. Thanks. I did just have mg B12 drawn. I should also state that I am already taking a Vit D supplement, as I live in the US in New England sand just about everyone who lives here is deficient, esp during our winters with less exposure to natural sunlight. I was also taking a chewable bariatric vitamin as well because of my food issues related to my cancer treatment (which was many years ago, but there are long term effects.) I just stopped it because I was unable to get any gluten information about it. And it did contain iodine. Is there even a vitamin that doesn’t? I don’t know, but I will check. I also take Calcium and Magnesium in the form of “Rolaids” for leg cramps/spasms, with good effects. Thanks. 

[Wheatwacked]

I use Listerine.  Rinse first to soften the tarter, then brush with Oral B electric toothbrush super sonic.  The $15 ones at the supermarket.  At 73 I still have all my teeth. 

While a blood test can measure iodine levels, it's not the most accurate method for assessing iodine status, and urinary iodine excretion is considered a better indicator. 

Have any of your dermatologists ever done a biopsy for dermatitis herpetiformis?  I may have missed it.  Note the similarity of Casal's necklace to one of your symptoms.

Pellagra rash is a characteristic skin manifestation of niacin (vitamin B3) deficiency. It typically presents as: 

• Erythema: Red, sunburned-like areas of skin, often on the face, neck, arms, and legs. 
• Scaliness: Dry, flaky skin that may become thickened and crusty. 
• Hyperpigmentation: Darkened patches of skin, particularly in sun-exposed areas. 
• Casal's necklace: A dark, pigmented band around the neck. 

I am currently taking these}

Vitamin D 10,000 IU (250 mcg)
DHEA 100 mg
500 mcg Iodine  10 drops of Liquid Iodine
B1 Thiamin 250 mg 
B2 Riboflavin 100 mg
B3 Nicotinic Acid 500 mg 4 times a day for hyperlipidemia.
B5 Pantothenice Acid 500 mg
Vitamin C 500 mg    
Selenium 200 mcg  Several times a week

[Itsabit]

Hi. Yes. I’m awaiting my Biopsy results. I had B12 and other labs drawn on Mon, including Thyroid levels, as I am on Levothyroxine for radiation-induced hypothyroidism. Those levels should indicate any iodine issues. We had discussed the urine iodine, but he went with the thyroid instead. We’ll see. 

I never had any of those Pellagra skin changes, or Casal’s necklace. Just itchiness in the supraclavicular hollows on both sides of my neck, and the anterior aspect as my neck radiation site.  The hollows had no changes until I scratched them, then I got the rash on those areas like the ones I have now scattered in different areas, usually on both sides with the exception of my anterior thighs. My right is affected, my left isn’t.

I am 70 and have all my teeth as well - amazingly after having had max dose radiation in 2002. 😂 Unfortunately, because of long term changes in my oral mucosa because of it I can’t use mouthwashes - even non-alcohol ones, as they all burn my mouth like fire. Toothpastes burn as well, but not nearly as bad. I have an electric toothbrush but it is getting more difficult to use due to increasing trismus. Some days I cannot open my mouth wide enough to get the electric brush between my back teeth, so on those days I use a regular one. Gotta do what you gotta do. 

Thank you for your input. Any insight I can get into this is appreciated. So, for now it’s the waiting game for test results, then we can form a treatment plan going forward.