Help I’m cross contaminating myself,

[klmgarland]

It took three years and several doctors and many tests, and lots of steroids and other bad medicine that didn’t do anything to finally find a competent doctor to get diagnosed with dermatitis herpetiformis.  I am meticulous about a completely gluten free diet now for more than a year and things were finally getting better until they weren’t.  Who knew that if I fed my dear invalid cousin a hamburger and used the same hand to eat a couple of her gluten free fries that I was cross contaminating myself.  Who knew that if my husband makes a sandwich and leaves crumbs on the counter which I sweep away with a dish towel then wash my hands and dry them on this same dish towel and then touch my lips that I potentially cross contaminated myself.  Who knew that just wiping off the table crumbs could still leave gluten on the table that has to be washed off with soap and water.  Who knew when my husband heats a tortilla by draping it over the toaster that gluten residue is possibly left behind.   Who knew that if my husband eats a gluten product and I kiss him on the lips that I was cross contaminating myself.  Who knew that if I should walk into the bakery to get my gluten free cupcake if they have been mixing up a batch of flour batter and there could be flour particles in the air I could inhale and contaminate myself.  Who knew I needed to be careful that my grand baby shouldn’t put there fingers in my mouth because they just ate a biscuit and I was cross contaminating myself.   Eating gluten free is the easy part.  But know one tells me how to live in the real world filled with gluten contamination just waiting to happen!
 

There I feel better getting all that off my chest but I feel isolated and alone in this journey.

I sleep with a back scratcher, stand in my freezing cold pool, glob on tons of triamcinolone for the rash on my knees, back, bottom, elbows and ankles.  I use bottles of Scalpicine for the extensive rash on my scalp.  All my make up, medications, soaps, shampoos, cleaners, detergents are all gluten free.  But I still have a rash and I fear I will gouge and claw holes in my head and body before I can’t figure out how I am exposing myself to gluten.  I don’t even want to leave the house anymore.  I never eat any food or drink offered me at anyone’s home ever.  I can drink wine and eat potato chips!  Hurray for me,

I finally agreed to try Dapsone even though I read it’s hard on your body but if I don’t get some relief am going to have a nervous breakdown from lack of sleep and high anxiety.

Can anyone point me in the right direction?

Thank you, 

Helpless but Hopeful

[Scott Adams]

It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance.

The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest.

If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:

 

[klmgarland]

Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!

[Rogol72]

@klmgarland,

My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference.

I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope.

I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it.

Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.

 

[knitty kitty]

I suffer from Dermatitis Herpetiformis, too. 

Like @Rogol72, I had to cut out all gluten-free processed foods, dairy, oats, and eggs before my skin cleared up.  I followed the Autoimmune Protocol Diet.

I also supplement with the eight essential B vitamins.  (Meat and liver are great sources of B vitamins.)  Low levels of certain B vitamins ( B12, Thiamine, Pyridoxine, and Niacin) can affect the nerves, resulting in itching and tingling.  Niacin especially helps with the itching and healing the blisters.  Tallow Balm helps with the healing, too.  Zinc and Vitamin A also help with skin health.  

I've gotten such good results with Niacin and the other vitamins mentioned that I've never had to go on Dapsone.

[klmgarland]

So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure!

[knitty kitty]

I followed the Autoimmune Protocol Diet which is really strict for a while, but later other foods can be added back into your diet.  Following the AIP diet strictly allows you digestive system to heal and the inflammation to calm down.  Sort of like feeding a sick baby easy to digest food instead of spicy pizza.  

It's important to get the inflammation down because chronic inflammation leads to other health problems.  Histamine is released as part of the autoimmune response to gluten.  High histamine levels make you feel bad and can cause breathing problems (worsening asthma), cardiovascular problems (tachycardia), and other autoimmune diseases (Hashimoto's thyroiditis, diabetes) and even mental health problems.

Following the low histamine version of the AIP diet allows the body to clear the histamine from our bodies.  Some foods are high in histamine.  Avoiding these makes it easier for our bodies to clear the histamine released after a gluten exposure.  

Vitamin D helps regulate the immune system and calm it down.  Vitamin D is frequently low in Celiacs.  The B Complex vitamins and Vitamin C are needed to clear histamine.   Supplementing with essential vitamins and minerals boosts your intestines' ability to absorb them while healing.  

Keep in mind that gluten-free facsimile foods, like gluten-free bread, are not enriched with added vitamins like their gluten containing counterparts are.   They are empty calories, no nutritional value, which use up your B vitamins in order to turn the calories into fuel for the body to function.  

Talk to your doctor or nutritionist about supplementing while healing.  Take a good B Complex and extra Thiamine in the form Benfotiamine (shown to promote gut health).  Most B Complex vitamins contain thiamine mononitrate which the body cannot utilize.  Meats and liver are good sources of B vitamins.  

Dr. Sarah Ballantyne wrote the book, the Paleo Approach.  She's a Celiac herself.  Her book explains a lot.  

I'm so glad you're feeling better and finding your balance!

[klmgarland]

So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure!

Thank you kitty kitty

  I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  

[knitty kitty]

On the AIP diet, all processed foods are eliminated.  This includes gluten-free bread.  You'll be eating meats and vegetables, mostly.  Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well.  Veggies should be fresh, or frozen without other ingredients like sauces or seasonings.  Nightshade vegetables (eggplant, potatoes, tomatoes, peppers) are excluded.  They contain alkaloids that promote a leaky gut and inflammation.  Dairy and eggs are also eliminated.  

I know it sounds really stark, but eating this way really improved my health.  The AIP diet can be low in nutrients, and, with malabsorption, it's important to supplement vitamins and minerals.  

[Serena Rodriguez]

You've already identified the issue. You cannot have ANY gluten in your home EVER. It's not optional for everyone who lives with you to have a dedicated gluten free diet! And anyone who comes to visit you cannot bring anything gluten-containing into your home. All gluten containing items need to be thrown away, beauty/bath products included. All pots/pans, dishes, utensils need to go through the dishwasher. Anything too porous or delicate for the dishwasher needs to be thrown away and replaced. Your toaster needs to be thrown away and replaced. Your oven, stovetop, and all surfaces throughout your home (bedrooms and bookshelves too) need to be thoroughly washed. All of this needs to happen in the same day because you risk contaminating other parts of your home if you do only part of the job. There's no such thing as a "safe" amount of gluten in your home. Not putting your foot down means greater risks into the future for vitamin deficiencies, diabetes, damage to your thyroid, cancer, rheumatoid arthritis, and more.

[klmgarland]

I have a lot to learn!  Thank you

[Wheatwacked]

 

The discovery of the vitamin D receptor in multiple immune cell lineages, such as monocytes, dendritic cells, and activated T cells credits vitamin D with a novel role in modulating immunological functions and its subsequent role in the development or prevention of autoimmune diseases.  The Implication of Vitamin D and Autoimmunity: a Comprehensive Review

[Scott Adams]

On 10/25/2025 at 1:30 AM, Rogol72 said:

@klmgarland,

My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference.

I am only wondering why you would need to cut out rice? I've never heard of rice being any issue in those with DH.

[Rogol72]

I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.