DH persists despite meticulous efforts! Please share insights so I can stop being miserable!

[TheDHhurts]

Hi folks,

I can’t seem to shake DH. I was diagnosed a few years ago, but first noticed it approximately a decade ago. Since diagnosis I’ve doubled-down on the gluten free lifestyle. I prepare my own food and rarely buy anything processed, and when I do I do my background research to make sure it is gluten-free. My dermatologist put me on dapsone a couple years ago. I’m weaning myself off of it so only tend to use it when I have a DH breakout. I do notice that my breakouts are milder now. They still hurt and are gross looking, but they are smaller in size and go away and heal much quicker. I typically don’t notice any other celiac symptoms (digestive etc) when the DH breaks out.

My DH is most noticeable on my face. I’ll get a red bump on one temple, and when it heals I’ll get one on the other temple. Mirror imaging. It hurts, and it looks like I’m going through puberty again (I’m in my late 30s) It’ll last a couple weeks, but the peak of it only lasts a couple days usually. As I mentioned above, before diagnosis and the use of dapsone, the DH bumps would grow much larger, would last for much longer, and were even more painful. (So, there has been some progress!)

I don’t know why I keep breaking out. I am very strict about what I consume. I live alone and don’t share my cooking space, utensils, kitchen, etc. I don’t get as much sleep as I should, and occassionally get stressed at work, but I don’t know if these should be factors if I actually am eating gluten free. I’ve wondered if the recurring rash could be something other than DH, but have no idea what else it could be.

In terms of medication, I take dapsone as needed. I am using the following supplements, as advised in order to cover nutritional gaps caused by my limited diet (in addition to being gluten-free, I follow FODMAPS due to IBS). Pure Encapsulations: Magnesium (glycinate) Vitamin D drops Thorne: Meriva-HP MegaFood: Men’s One Daily multivitamin Sisu: Calcium & Magnesium 2:1 NutraSea HP Omega 3 fish oil Recently, I’ve used the following over the counter medication: Life Brand Diphenhydramine Hydrochloride capsules 25 mg

I eat simply. Unprocessed chicken, beef, and sometimes pork from the local grocery store. Lots of potatoes, carrots, oranges, ginger, some greens that I grow myself. Some other fruit or veggies on occasion. I eat Only Oats cerfitifed gluten free oatmeal, and I’ll sprinkle it with nutritional yeast from Bob’s Red Mill. This BRM product is marked gluten free, and is produced in a gluten free facility. Other BRM products I use on occasion (with the same gluten-free protocols) are their millet, sorghum, and the Mighty Tasty Hot Cereal.

I primarily drink water. I drink a cup or two each day of tea from Traditional Medicinals. (I emailed them and they say all of their products are now gluten free. I mostly stick with their green tea or peppermint.) Sometimes I’ll have a locally-produced kombucha (they self-label it gluten free).

I wash my face with Adasept, and apply product from The Ordinary (only items they self identify as gluten-free) and CeraVe (from the tub). I use Colgate toothpaste. All of these are supposed to be gluten-free. I use Blistex Lip Medex, and Blistex Ultra Protection or Metholatum if I’m going to be in the sun and need SPF. According to the emails I sent/received these products are all gluten-free.

I use olive oil, and Himalayan pink salt (the salt doesn’t have any additional ingredients).

I’m struggling to find the “hidden” gluten in here. I need to figure out why I’m still breaking out with DH because its persistence is very demoralizing, unsightly, and painful. I would appreciate any of your insight or help here. Are there any other resources I should access re: this?

[Scott Adams]

Although DH hasn't been linked to uncontaminated, pure oats, I wonder if eliminating oats for a time might help your DH improve? Some celiacs are also sensitive to certain types of oats, and also need to eliminate them to recover.

Regarding the Bob's Red Mill grains, I do wonder if there could be some cross contamination. Have you tried any other gluten-free brands?

[TheDHhurts]

30 minutes ago, Scott Adams said:

Although DH hasn't been linked to uncontaminated, pure oats, I wonder if eliminating oats for a time might help your DH improve? Some celiacs are also sensitive to certain types of oats, and also need to eliminate them to recover.

Regarding the Bob's Red Mill grains, I do wonder if there could be some cross contamination. Have you tried any other gluten-free brands?

I may give eliminating the oats for a stretch a try. How long would I need to stop eating them to detect changes? (I only started eating these in the past year, and had DH prior, but given the problem I will try something like this. Also, Only Oats are certified gluten free by GFCO, for what that's worth.)

I haven't tried other brands of grains beyond BRM. I only tried these products within the past few months, as I struggled to find things I could eat. I'll try a period without eating them as well.

Thanks for your insight. I think part of the problem is I'm also quite sensitive to low levels of gluten, which makes everything more complicated.

[RMJ]

I was going to suggest the same two things as Scott.

Some people react to a protein in oats, even though the oats are gluten free.

I don’t have symptoms but my antibodies have recently gone back up a bit, and the biggest change in my diet was adding BRM flours.  I’m going to try certified gluten free flours instead. I thought BRM would be ok since they are made in a gluten free facility, but I found before that I do better on certified gluten free than gluten free.  

[Scott Adams]

From what I’ve heard about DH outbreaks, which can last weeks and be triggered by tiny amounts of gluten, I’m thinking give 2-3 months of this change a try.

[knitty kitty]

TheDHhurts,

I have DH.  I found avoiding iodine and taking extra niacin helps.

I had to stop fish oil for omega-3's.  Fish oil may contain various levels of iodine.  Cod liver oil contains high levels of iodine.  

You can Google "low iodine diet" for more information, but....

Potatoes have high levels of iodine.

Some teas have iodine.

Himalayan salt is a good choice.  It does have iodine.  Sea salt and iodized table salt contain iodine.

Check your multivitamin.  Some have iodine included.

Niacin (Nicotine acid) can help. I got dramatic improvement with niacin supplementation....

"effect of niacin on dermatitis herpetiformis. In a series of 12 patients with dermatitis herpetiformis of various degrees of severity, the oral administration of niacin in doses of 50 to 200 mgm. four times daily relieved the pruritus and improved the cutaneous manifestations."

ScienceDirect › pdf

Nicotinic Acid Therapy of Dermatitis Herpetiformis - ScienceDirect.com

Hope this helps!

 

[TheDHhurts]

5 hours ago, knitty kitty said:

TheDHhurts,

I have DH.  I found avoiding iodine and taking extra niacin helps.

I had to stop fish oil for omega-3's.  Fish oil may contain various levels of iodine.  Cod liver oil contains high levels of iodine.  

You can Google "low iodine diet" for more information, but....

Potatoes have high levels of iodine.

Some teas have iodine.

Himalayan salt is a good choice.  It does have iodine.  Sea salt and iodized table salt contain iodine.

Check your multivitamin.  Some have iodine included.

Niacin (Nicotine acid) can help. I got dramatic improvement with niacin supplementation....

"effect of niacin on dermatitis herpetiformis. In a series of 12 patients with dermatitis herpetiformis of various degrees of severity, the oral administration of niacin in doses of 50 to 200 mgm. four times daily relieved the pruritus and improved the cutaneous manifestations."

ScienceDirect › pdf

Nicotinic Acid Therapy of Dermatitis Herpetiformis - ScienceDirect.com

Hope this helps!

 

Thanks for sharing. A question -- is iodine only an issue if gluten is already present and triggers a response?

I'll look into lowering the amount of iodine that I consume. At present I'm consuming a lot of potatoes -- between celiac and IBS I have trouble finding foods that I can safely consume -- so this could be an adjustment.

Do you have any info on what levels of iodine are "safe" for people with DH/supersensitive celiacs?

[TheDHhurts]

10 hours ago, Scott Adams said:

From what I’ve heard about DH outbreaks, which can last weeks and be triggered by tiny amounts of gluten, I’m thinking give 2-3 months of this change a try.

Got it. I'll give it a try, starting today. (As in, cutting out the gluten-free oats and Bob's Red Mill products.)

knitty kitty suggested I observe and lower my iodine intake. Do you have any insight into the relationship between iodine and DH? My understanding is that iodine aggravates already existing DH outbreaks and that gluten is still required to trigger the DH response. Is this your understanding? (If I could get rid of the trace amounts of gluten and not worry about iodine I'd be happy ... potatoes have become a key comfort for me in these difficult times!)

[Scoop]

I have been struggling too - our restaurants are still closed so no chance of eating food that I didn't personally cook. My Nutritionist recommended i take a fish oil supplement for the Omegas and I truly feel that even though I love the result of improving my omegas (hair, skin, energy) my DH is worsened by the iodine in it. When I stopped taking them for 4 weeks, I improved immensely.  When she said to go back on them, everything flared up.  I am now trying a non-iodine Complete omega that is called Complete Omega by Nattura and have taken out iodised salt from my diet.  Healing is starting again!  I'd consider the iodine in your fish oil tabs if I were you.  Worth a shot! Oh, that includes removing as many eggs and also potato skins (I love potato skins...).  

[trents]

If you eliminate supplemental iodine, make sure you are still getting enough from natural sources. There's a reason they started putting iodine in salt. It's important for thyroid health.

[cyclinglady]

3 hours ago, TheDHhurts said:

Got it. I'll give it a try, starting today. (As in, cutting out the gluten-free oats and Bob's Red Mill products.)

knitty kitty suggested I observe and lower my iodine intake. Do you have any insight into the relationship between iodine and DH? My understanding is that iodine aggravates already existing DH outbreaks and that gluten is still required to trigger the DH response. Is this your understanding? (If I could get rid of the trace amounts of gluten and not worry about iodine I'd be happy ... potatoes have become a key comfort for me in these difficult times!)

Consider reading through the DH section of the forum.  Look to members Ravenwoodglass, SquirmingItch or Theapprehensiveengineer.  These ladies have DH and are wise!  Why reinvent the wheel.  Iodine does seem to contribute to DH.  Remember DH has a mind of its own.  Those antibodies are in the skin.  It takes a lot more time for them to resolve vs antibodies in the gut.   Those who have mastered DH report that avoiding non-processed foods is their best bet for success.  Consider trialing the Dr. Fasano diet or AIP to give you a jumpstart.  It is basically very strict, no grains (rice allowed on Fasano diet) and mostly real food.  

Go low iodine, but you need iodine to live.  

I use Bob Red Mill products (no oats though).  I have not had a problem and I am pretty sensitive.  They are not certified gluten free anymore, but if I recall, they just did not want to pay for the certification and they thought their brand was strong enough to go without it.  I have used their products for over 20 years.  I would worry more about the newbie companies on the market.  
 

 

[trents]

Bob's Red Mill has their own in house testing lab.

[TheDHhurts]

2 hours ago, Scoop said:

I have been struggling too - our restaurants are still closed so no chance of eating food that I didn't personally cook. My Nutritionist recommended i take a fish oil supplement for the Omegas and I truly feel that even though I love the result of improving my omegas (hair, skin, energy) my DH is worsened by the iodine in it. When I stopped taking them for 4 weeks, I improved immensely.  When she said to go back on them, everything flared up.  I am now trying a non-iodine Complete omega that is called Complete Omega by Nattura and have taken out iodised salt from my diet.  Healing is starting again!  I'd consider the iodine in your fish oil tabs if I were you.  Worth a shot! Oh, that includes removing as many eggs and also potato skins (I love potato skins...).  

Do you have any resources you recommend I read re: iodine levels in fish oil? I've emailed the manufacturer of the fish oil I use asking for info about iodine in their products but could use all the useful info I can get.

Re: potatoes -- is the iodine concentrated in the skins?

[TheDHhurts]

9 hours ago, knitty kitty said:

TheDHhurts,

I have DH.  I found avoiding iodine and taking extra niacin helps.

I had to stop fish oil for omega-3's.  Fish oil may contain various levels of iodine.  Cod liver oil contains high levels of iodine.  

You can Google "low iodine diet" for more information, but....

Potatoes have high levels of iodine.

Some teas have iodine.

Himalayan salt is a good choice.  It does have iodine.  Sea salt and iodized table salt contain iodine.

Check your multivitamin.  Some have iodine included.

Niacin (Nicotine acid) can help. I got dramatic improvement with niacin supplementation....

"effect of niacin on dermatitis herpetiformis. In a series of 12 patients with dermatitis herpetiformis of various degrees of severity, the oral administration of niacin in doses of 50 to 200 mgm. four times daily relieved the pruritus and improved the cutaneous manifestations."

ScienceDirect › pdf

Nicotinic Acid Therapy of Dermatitis Herpetiformis - ScienceDirect.com

Hope this helps!

 

I see my multivitamin contains 60 mcg of iodine per capsule. I was taking one a day. Guess I won't be taking that anymore.

Thanks for all the info.

[knitty kitty]

TheDHhurts, 

Made a typo.  Sorry.

Himalayan salt does NOT have iodine.  

I've found iodine to be problematic even when not glutened.  For example, I loved sushi, but found the iodine in the nori (seaweed) to be a problem even if I made fish free, gluten free veggie sushi at home while being gluten free. 

Oh, and watch out for medications with iodine.  I had a super horrible reaction to iodide-based contrast IV dye used in a check up CAT scan. Had been gluten free at that time.

I don't have a level of iodine that's safe for Celiacs with DH, but like Scoop, trents, and Cycling Lady pointed out, you do need some iodine for proper thyroid function.  I do know Cod Liver oil has an extremely high level of iodine that is intolerable for me.  

Cycling Lady's suggestion to avoid processed gluten free foods is spot on.  Iodine is sometimes used as a dough conditioning agent in bakery products like breads, cakes and cookies, gluten free or not.

I get my Omega threes from flaxseed oil and oil of evening primrose which do contain some iodine, but in a level I can tolerate.

Yes, I had gone the potato route when first going gluten free and just wasn't healing.  I got on the Autoimmune Paleo Protocol diet and experienced improvement rapidly once I discontinued all nightshades (potatoes, tomatoes, eggplants, and peppers).

Here's a study.....

"Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease"

https://pubmed.ncbi.nlm.nih.gov/12479649/

Taking extra niacin when I did get DH outbreaks really helped me.  Niacin in the form of nicotinic acid (the kind that causes flushing) really helps intestinal healing, too.  It's one of the eight B vitamins which are water soluble and are easily lost with diarrhea or constipation.  There's no toxicity level.  You may want to discuss taking a B Complex vitamin supplement in addition to your multivitamin to compensate for poor absorption due to Celiac and IBS.  

Hope this helps!

Edited September 23, 2020 by knitty kitty
Typo

[Cheryl Webb]

18 hours ago, Scott Adams said:

From what I’ve heard about DH outbreaks, which can last weeks and be triggered by tiny amounts of gluten, I’m thinking give 2-3 months of this change a try.

I have been DH for nearly 5 years and have found that once totally free of gluten-free oats, corn, wheat, and stick to with lactaid, I am doing much better.

 

[Fasteddy]

Hi..

Cant offer you dietary help with DH (I have it too) but it seems you have some very good ideas and thoughts above for that, but have just been writing on my own post about making your own soap and how much it helps with my DH and the skin conditions of several friends. I know that is not the answer to getting to the cause of it, but its hard to exagerate just how much relief I get from avoiding the harsh chemicals that is found in modern day 'soap', nasty stuff when your skin is already suffering.. Happy to supply my recipe if you want to try something else..

[knitty kitty]

Fasteddy, 

I'd like to try your soap recipe!  Please attach a link in this thread when you post it.

I read your post here about your struggle to get a Celiac diagnosis by blood tests.....

People with Dermatitis Herpetiformis don't test on Celiac blood test panels the same as Celiacs without DH. 

Celiacs with DH don't have positive blood tests for celiac disease.  It's got to do with the antibodies going into the skin and making the DH blisters.

A doctor (preferably one familiar with DH) can do a biopsy on the area of the skin near a DH blister outbreak.  A diagnosis of Dermatitis Herpetiformis is a confirmed diagnosis of Celiac Disease.  

Perhaps a short binge on gluten and a biopsy of the resulting DH blisters would get you a Celiac Disease diagnosis faster and easier than the on again - off again gluten trials you're doing now.  

I have Dermatitis Herpetiformis and I don't get "positive for Celiac" blood test results.  I have DH and two genes for Celiac.  

I follow the Autoimmune Paleo diet.  It eliminates nightshades, legumes, grains and dairy.  Perhaps you'll get more relief if you try the AIP diet.  

I found Dr. Sarah Ballantyne's book helpful.....

https://books.google.com/books/about/The_Paleo_Approach.html?id=xM0cuwEACAAJ&source=kp_book_description

Hope this helps!

[Scott Adams]

Actually all, or nearly all those with DH have celiac disease, and will test positive for antibodies. Some with DH don't , but many do. I did, and did have DH on one are on the top of my hand. After a severe sunburn from fishing on a lake at 7,000 ft. I never had DH there again--I don't recommend this method of treatment!

[knitty kitty]

I stand corrected.  Thank you. 

Here's more information......

"The diagnosis and treatment of dermatitis herpetiformis"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4435051/

 

[Posterboy]

On 9/22/2020 at 9:17 AM, TheDHhurts said:

I can’t seem to shake DH. I was diagnosed a few years ago, but first noticed it approximately a decade ago. Since diagnosis I’ve doubled-down on the gluten free lifestyle. I prepare my own food and rarely buy anything processed, and when I do I do my background research to make sure it is gluten-free. My dermatologist put me on dapsone a couple years ago. I’m weaning myself off of it so only tend to use it when I have a DH breakout. I do notice that my breakouts are milder now. They still hurt and are gross looking, but they are smaller in size and go away and heal much quicker. I typically don’t notice any other celiac symptoms (digestive etc) when the DH breaks out.

TheDHhurts,

You might try and taking some Zinc.

Zinc deficiency is common in Celiac's and other Skin diseases....including DH but the doctor's don't think to look for Vitamin deficiencies often until we are severely sick.

Here is some research about it entitled "Patients with dermatitis herpetiformis, acne, psoriasis and Darier's disease have low epidermal zinc concentrations"

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

Oral Zinc supplementation has been show to work in other Skin diseases like Rosacea.

See this research entitled "Oral zinc sulfate in the treatment of rosacea: a double-blind, placebo-controlled study"

https://pubmed.ncbi.nlm.nih.gov/16863527/

I wrote a Posterboy blog posts about how many Celiacs are low in Micronutrients and doctor's don't know to look/test for them today.

Maybe it will help you too read it.

https://www.celiac.com/blogs/entry/2714-mayo-clinic-study-shows-micronutrient-deficiencies-are-still-common-in-contemporary-celiac-disease-despite-lack-of-overt-malabsorption-symptoms/

And in their defense,.....tests are not always as accurate as we would like to believe.

See this medical news today article about it...

https://www.medicalnewstoday.com/articles/320393#diagnosis

quoting from their paragraph on diagnosing a Zinc deficiency.

"While a doctor can order a blood test or urine test to check zinc levels, these may not give a definitive result. This is because zinc is only present in small amounts in the body’s cells."

And lucky for you/us Zinc supplements are easy to take and have a definitive sign you (taste) when you have enough of it.

Zinc sublingual lozenges become metallic/bitter when you have enough Zinc.

Here are some nice threads about  DH as well when you have time to read them.

Here is the short thread...

Here is the longer thread...

A common symptom of  Zinc deficiency is white spots in your nail bed....

I had them too and the doctor's didn't know what they meant!

I hope this is helpful but it is not medical advise.

Posterboy,

 

[Beverage]

I reacted STRONGLY to Bob's Red Mill Gluten Free Oats.  Oats are one of the most cross contaminated in the growing process.  Even if they are processed at a gluten-free only facility, even if they are below the 20ppm legal standard to specify them as gluten-free, they can still be at that upper 10ppm limit and be labeled Gluten Free, BUT this is NOT SAFE FOR CELIACS.  You need to search about Purity Protocol oats.  There are a few brands:

https://www.glutenfreewatchdog.org/news/oats-produced-under-a-gluten-free-purity-protocol-listing-of-suppliers-and-manufacturers/

We like steel cut oats, and I found the gluten-free Harvest brand available on Amazon and have had no problems with it:

https://www.amazon.com/gp/product/B01NBSHC7R/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

Go to the manufacturer website and see how this is grown and how they ensure is is lower than the 20ppm allowed by law.  Of course, you could still have an issue with oats triggering a reaction as the protein strand is the next closest thing to wheat rye and barley.

Another whole food that is like this is beans, which are often rotated in growing in the field with gluten grains like barley, so make sure you buy beans (EVEN DRIED) labeled as gluten free.  I get mine from Nuts.com and have had no issues.  

 

[TheDHhurts]

Its been a little over 2 weeks since I posted. I've lowered my iodine intake (I stopped the fish oil and been generally conscientious), and temporarily halted eating my gluten-free oatmeal and the gluten-free Bob's Red Mill products I have. While it is too early to make any declarations, I'm happy to say I haven't broken out in DH bumps in the last couple weeks.

Now the big question. I need to eat a more varied diet, but am restricted by my gluten-free, low FODMAPS, low iodine diet. Tips/suggestions? So far, lots of potatoes (skins removed), unprocessed meats, and salads.

[Posterboy]

TheDHhurts,

You can try taking some Niacin.....it should flush out the histamine causing the itching...

Niacin is know for it's ability to "flush" someone....

See this research where Niacinamide has been been used in the treatment of DH.

https://pubmed.ncbi.nlm.nih.gov/30390734/

After the Niacin flushing is gone your itchy DH should subside....if it is related to the build up of histamines in  the skin...

You might also try reading my latest Posterboy blog post....it is kind of long...but I think it will help you...

https://www.celiac.com/blogs/entry/2736-if-your-celiac-disease-was-in-part-triggered-by-a-vitamin-deficiency-would-you-take-b-complex-for-it/

Be sure to read to the end....it talks about DH towards the end of it...

I hope this is helpful but it is not medical advise.

Posterboy,

[knitty kitty]

TheDHhurts,

I suggest following the Autoimmune Paleo Protocol diet.  I found the book by Dr. Sarah Ballantyne very helpful...

Her website....

https://www.thepaleomom.com/about/about-sarah/

Her book...

https://www.amazon.com/gp/product/1936608391?ie=UTF8&camp=1789&creativeASIN=1936608391&linkCode=xm2&tag=wwwthePaleomo-20

 

The AutoImmune Paleo Diet eliminates most of the Fodmaps foods that are restricted.  The AIP diet is a bit more restrictive than the Fodmaps diet.  Start with the AIP diet and then expand to include more of the foods allowed on the Fodmaps diet as your healing progresses.  I added in sunflower seeds and sunflower seed oil to get my Omega threes and sixes.  

Stay away from dairy as long as you can.  Dairy is high in iodine as well as problematic for Celiacs.  Some Celiacs develop lactose intolerance.  The tips of the villi produce lactase, an enzyme that breaks down dairy.  These villi get damaged by Celiac Disease and can not produce the lactase again until they are healed or grow back which can take eighteen months to two years.  Some people naturally (it's genetic) become lactose intolerant as they age.  They lose the ability to make lactase as they get older.  Some people develop a casein allergy.  Casein is the protein in milk that kind of resembles gluten proteins and the body reacts to casein as it does gluten.  So, yeah, avoid dairy.

Yes, niacin will help resolve the DH, too, as Posterboy said.  I take niacin (the kind that causes flushing -- nictotinic acid (not related to nicotine in tobacco)).  The flushing kind of niacin really helps the DH.  Niacinamide does not cause flushing, but it helps as well.  Don't take the extended release niacin because they cause inflammation in the lower intestines, which Celiacs don't need.  

Hope this helps!  

 

 

 

 

On 10/7/2020 at 8:02 PM, TheDHhurts said:

Its been a little over 2 weeks since I posted. I've lowered my iodine intake (I stopped the fish oil and been generally conscientious), and temporarily halted eating my gluten-free oatmeal and the gluten-free Bob's Red Mill products I have. While it is too early to make any declarations, I'm happy to say I haven't broken out in DH bumps in the last couple weeks.

Now the big question. I need to eat a more varied diet, but am restricted by my gluten-free, low FODMAPS, low iodine diet. Tips/suggestions? So far, lots of potatoes (skins removed), unprocessed meats, and salads.