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

[Ann--Marie]

On 9/22/2020 at 12:17 PM, TheDHhurts said:

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?

get rid of the nutritional yeast , and kale if that in the greens list. look for other hidden iodine. Iodine has been known to make breakouts much more severe. and... i cannot have oats, they have a different form of gluten that you could be sensitive to. you could also try a food sensitivity test, usually DO, or chiropractors, sometime nutritionists, sometime nurse practitioners, and usually any place advertising " functional medicine" good luck

[Posterboy]

On 10/15/2020 at 10:53 AM, Ann_Marie said:

I eat simply. Unprocessed chicken, beef, and sometimes pork from the local grocery store

The DHHurts,

I have been busy with other things so I will be brief...

I am not sure this is what it is.....I have found an elimination diet is helpful when you are searching for a needle in a haystack...

But you might try leaving off the chicken.....for a while....though it is considered rare.....(we don't really know how often it happens).....

But Chicken has been shown to be potentially toxic  to some Celiac's...

Here is the research on it....entitled "Computational Characterisation and Identification of Peptides for in silico Detection of Potentially Celiac-Toxic Proteins" and chicken is on that list...

https://journals.sagepub.com/doi/abs/10.1177/1082013207077954

quoting....

"In addition, amino acid sequences with a high degree of identity to the toxic peptides examined were detected in maize zein, oat avenin, protein of rice, yeast and chicken muscles, as well as β-casein and galanin."

And it backs up what Ann Marie said about some Celiacs reacting to yeast too!

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

Posterboy,

[selectivefocus]

Remove all sources of iodine from your diet. Iodine will keep you flared. You can reintroduce small amounts once you are clear.

[Jenniferxgfx]

I have really severe DH and I’ve finally (after 9 years gluten-free) recently been feeling like I have a handle on things. Here’s a few things I’ve found:

I can’t trust oats. Every single kind of gluten-free oat had triggered a DH reaction. Even if I don’t have GI problems, gluten-free oats are simply not gluten-free Enough for me. 
 

I can’t trust Bob’s Red Mill. Their gluten-free flours are made on the same equipment as the gluten-free oat flour, so I’m getting glutened by gluten-free flour. 
 

I no longer trust nondairy milk companies that sell oat milk. I also have a dairy allergy so that means pretty much no more milk subs for me. I’ve been glutened too many times. 
 

iodine is key: as long as new lesions are forming, dietary iodine will keep the process going. The ThyCa (thyroid cancer association) website had a low-iodine cookbook to help guide food choices. Himalayan salt is a sea salt, and contains natural iodine. For me, that was enough to trigger a reaction. I had to avoid all sea salt. I switched to pure table salt (sodium chloride) without added iodine while flaring up.

I switched to Vanicream soaps and lotions. It’s made by pharmacists who specialize in products for people with skin conditions. I’ve reacted to Eucerin and other supposedly safe products. I also use my kitchen for health and beauty products: I wash my face with the “oil cleansing method” (worth googling if you use a face wash), and often use coconut oil as a moisturizer and hair treatment. 
 

I change my pillow case often, sometimes daily during flare ups. Any non chemical way I can pamper my skin helps. (Softer sheets, softer clothes, wash everything that touches my skin frequently, don’t rewear stuff.) 

speaking of, I use a “free and clear” laundry detergent and make sure it’s gluten free.

look into other food allergies and intolerances. Someone here, years ago, said that their skin flares up after eating peanuts. I was a peanut-based life form my whole life (I LOVE peanut butter!) and never wanted to give it up. But a couple years ago I had a flare up after being so militant about all of the above, so I started digging and experimenting. Sure enough, there are several foods that make me break out in ways that are either identical to or indistinguishable from DH: corn, peanuts, tomatoes, citrus, and strawberries. You may have a food trigger unique to you that’s totally surprising to you.

From what you’ve said, the two things that had a HUGE impact on my DH personally were oats (including oat contamination) and iodine-rich foods. Also patience: a bad flare (either a lot of lesions or one or two really bad ones) can take me months to a year to heal. It’s horrible.

also I just want to put a disclaimer about iodine: only avoid it as much as you need to heal, and then reintroduce it, perhaps while intentionally eating extra iodine rich food or consider supplementing. Iodine is ESSENTIAL for thyroid health! Thyroid problems and celiac go hand in hand. Since my celiac diagnosis, I’ve been diagnosed with Hashimoto’s and since being diligent about eating things like seaweed and asparagus and other iodine-rich foods, I’m finding my thyroid is feeling better and I’m not feeling the physical enlargement of the thyroid quite as severely. I wish that I had healthcare providers who understood what was going on so that I could perhaps have avoided such severe thyroid problems after avoiding iodine for the majority of the last decade. 
 

good luck! I really empathize. This is a hard road.

 

 

[TheDHhurts]

20 hours ago, Jenniferxgfx said:

also I just want to put a disclaimer about iodine: only avoid it as much as you need to heal, and then reintroduce it, perhaps while intentionally eating extra iodine rich food or consider supplementing. Iodine is ESSENTIAL for thyroid health! Thyroid problems and celiac go hand in hand. Since my celiac diagnosis, I’ve been diagnosed with Hashimoto’s and since being diligent about eating things like seaweed and asparagus and other iodine-rich foods, I’m finding my thyroid is feeling better and I’m not feeling the physical enlargement of the thyroid quite as severely. I wish that I had healthcare providers who understood what was going on so that I could perhaps have avoided such severe thyroid problems after avoiding iodine for the majority of the last decade. 

Thank you for your post! What you said about oats and iodine really makes sense. I've been off the oats and carefully monitoring my iodine intake for over a month. No DH breakouts in that period! This is a record for me, and aside from struggling to figure out what I can actually eat, I'm feeling and looking a lot better. (I was eating Only Oats, which is certified gluten free ... they grow their own oats and follow careful protocols because they have family members with celiac. I'll probably try it again down the line, since I have a couple bags of it kicking around, but for now it seems there's something about oats that causes DH for me.)

Regarding what you said about only avoiding iodine as long as it takes to heal, I have a few questions. I'm going to number these, just to keep things straight.

1. What counts as healing/what's the timeframe? As I mentioned, I've been DH free for the past month or so. During this time I have been eating eggs each morning, and taking a multivitamin, to get my minimum iodine requirements. At what point am I healed? (Is it when I have no DH on my body, or is it something grander, like when the antibodies are out of my system?)
2. When I ramp up my iodine intake, do you recommend I do so slowly?
3. I'm curious about your thoughts on dairy. You mentioned being allergic. I know the last few times I've had dairy (most recently several months ago) I've broken out with DH (or something similar). I'm not quite sure if it is due to an allergy, or if I had too much iodine. I've considered trying a little bit of dairy at a time - whether it be a glass or half-glass a day (or every other day) - to see if I can handle it. Any thoughts on this?
4. Any food recommendations? I have celiac/DH, and follow FODMAPS due to IBS. (I'm hoping the latter heals with time...we'll see.) This severely limits my choices.
5. Apropos of nothing, I don't react to Himalayan pink salt. Small blessings!

[Jenniferxgfx]

1 hour ago, TheDHhurts said:

Thank you for your post! What you said about oats and iodine really makes sense. I've been off the oats and carefully monitoring my iodine intake for over a month. No DH breakouts in that period! This is a record for me, and aside from struggling to figure out what I can actually eat, I'm feeling and looking a lot better. (I was eating Only Oats, which is certified gluten free ... they grow their own oats and follow careful protocols because they have family members with celiac. I'll probably try it again down the line, since I have a couple bags of it kicking around, but for now it seems there's something about oats that causes DH for me.)

Regarding what you said about only avoiding iodine as long as it takes to heal, I have a few questions. I'm going to number these, just to keep things straight.

1. What counts as healing/what's the timeframe? As I mentioned, I've been DH free for the past month or so. During this time I have been eating eggs each morning, and taking a multivitamin, to get my minimum iodine requirements. At what point am I healed? (Is it when I have no DH on my body, or is it something grander, like when the antibodies are out of my system?)
2. When I ramp up my iodine intake, do you recommend I do so slowly?
3. I'm curious about your thoughts on dairy. You mentioned being allergic. I know the last few times I've had dairy (most recently several months ago) I've broken out with DH (or something similar). I'm not quite sure if it is due to an allergy, or if I had too much iodine. I've considered trying a little bit of dairy at a time - whether it be a glass or half-glass a day (or every other day) - to see if I can handle it. Any thoughts on this?
4. Any food recommendations? I have celiac/DH, and follow FODMAPS due to IBS. (I'm hoping the latter heals with time...we'll see.) This severely limits my choices.
5. Apropos of nothing, I don't react to Himalayan pink salt. Small blessings!

I’m glad you’ve found some relief! I’ll try to answer your questions:

 

1. IMO it’s personal... for me, if I’m still waking up with new lesions, or the old ones aren’t getting any smaller, then I need to avoid iodine. Once they’re completely gone, I can eat iodine with wild abandon again. I’ve tried iodine-rich foods when everything is smaller/nearly gone, and sometimes things flare back up again. It sounds to me like you’re not having that problem. That’s good! I believe this reaction happens because the antibodies haven’t cleared the system yet  

2. I don’t think it matters how you add iodine back in. In my experience, you know right away if it’s too soon. But if your DH comes back, consider a mild glutening as the source, and whether or not you should cut back on iodine for a bit as you heal. 

3. Dairy for me causes asthma attacks, rashes, and severe gut problems. It could be gluten contaminated simply because of how messy the animal agriculture industry is. And dairy isn’t that important to me. Nutritionally it’s not that useful (it’s a poor source of protein and other nutrients), and I don’t miss it. But the only way you can know if it’s safe for you is to test it. Make note of the brands and your reactions, and know that sometimes it takes weeks or months to ID a culprit. 
 

4. IBS may actually be food sensitivities you haven’t found yet. I haven’t done FODMAPS but I did find more sensitivities when I went gluten free. (Some of my sensitivities that look like IBS: corn, brown rice, onion, tomato, an excessive amount of gums that are used in sauces and dressings like xanthan and guar.) that said, I’m not sure if these are FODMAPS safe but I eat a lot of sweet potatoes, cooked mushrooms, salads, cabbage, I put sauerkraut and kimchi on a lot of foods, and I use a lot of tamari/gluten-free soy sauce, herbs and spices. I’ve never had any problems with Nutritional Yeast and use that a lot too. Peaches are oddly one of my safest foods. 
 

5. That’s good! Himalayan salt has all those extra electrolytes!

[TheDHhurts]

1 hour ago, Jenniferxgfx said:

1. IMO it’s personal... for me, if I’m still waking up with new lesions, or the old ones aren’t getting any smaller, then I need to avoid iodine. Once they’re completely gone, I can eat iodine with wild abandon again. I’ve tried iodine-rich foods when everything is smaller/nearly gone, and sometimes things flare back up again. It sounds to me like you’re not having that problem. That’s good! I believe this reaction happens because the antibodies haven’t cleared the system yet  

2. I don’t think it matters how you add iodine back in. In my experience, you know right away if it’s too soon. But if your DH comes back, consider a mild glutening as the source, and whether or not you should cut back on iodine for a bit as you heal.

How long have you felt you've had DH under control? Since then, have you had any DH breakouts?

What you say about being able to consume iodine when you're not in the midst of a DH breakout (not exactly your words...hopefully what I'm saying is accurate) is very interesting. I'm incredibly scared of breaking out in the rash again, having finally gotten it under control after 13+ years. Encouraging stories such as yours give me some hope about eating iodine rich foods again.

Have you found any resources that discuss how long it takes for a body to clear itself of the DH-causing antibodies? I've looked high and low but have come up short. I'd love to have a better idea of this...I've read in message boards that it could take up to 10 years, but that was just one person saying that and I don't know how accurate it is.

[Jenniferxgfx]

1 hour ago, TheDHhurts said:

How long have you felt you've had DH under control? Since then, have you had any DH breakouts?

What you say about being able to consume iodine when you're not in the midst of a DH breakout (not exactly your words...hopefully what I'm saying is accurate) is very interesting. I'm incredibly scared of breaking out in the rash again, having finally gotten it under control after 13+ years. Encouraging stories such as yours give me some hope about eating iodine rich foods again.

Have you found any resources that discuss how long it takes for a body to clear itself of the DH-causing antibodies? I've looked high and low but have come up short. I'd love to have a better idea of this...I've read in message boards that it could take up to 10 years, but that was just one person saying that and I don't know how accurate it is.

I’ve had it “figured out” for about a year... but I’ve had a couple flare ups (due to bobs red mill trials and other oat contamination) since then. But the reactions aren’t as severe (it seems dose-dependent: since I’m militant about it all, any exposures have been small) and i only try one new food at a time— I test it with one package/serving/meal/whatever, and see how I feel. Then try again. And again, over days or weeks. And if I’m sure DH is under control, then I’ll try something else new. 
 

it’s tedious and frustrating. And then if a company changes their product, I have to go back to square one. (This is why I’ve only felt confident about what’s working for me for the last year— I used to drink and cook with a ton of almond milks and creamers, but I kept reacting. I finally realized my usual brands started making oat milk. Then I found out that all blue diamond almonds (the only brand I know of that’s NOT making oat milk) are processed in gluten contaminated equipment. Blue Diamond almonds and almond products aren’t certified gluten-free either so I shouldn’t realized. Bleh. 

I don’t have any good DH resources...  not a lot of research is being done for people like us.  A lot of what I’ve learned is from this forum when I was first dx’d.

[TheDHhurts]

4 hours ago, Jenniferxgfx said:

I’ve had it “figured out” for about a year... but I’ve had a couple flare ups (due to bobs red mill trials and other oat contamination) since then. But the reactions aren’t as severe (it seems dose-dependent: since I’m militant about it all, any exposures have been small) and i only try one new food at a time— I test it with one package/serving/meal/whatever, and see how I feel. Then try again. And again, over days or weeks. And if I’m sure DH is under control, then I’ll try something else new. 
 

it’s tedious and frustrating. And then if a company changes their product, I have to go back to square one. (This is why I’ve only felt confident about what’s working for me for the last year— I used to drink and cook with a ton of almond milks and creamers, but I kept reacting. I finally realized my usual brands started making oat milk. Then I found out that all blue diamond almonds (the only brand I know of that’s NOT making oat milk) are processed in gluten contaminated equipment. Blue Diamond almonds and almond products aren’t certified gluten-free either so I shouldn’t realized. Bleh. 

I don’t have any good DH resources...  not a lot of research is being done for people like us.  A lot of what I’ve learned is from this forum when I was first dx’d.

I had a similar experience. I decided to try my gluten-free oatmeal, in a small serving, a couple times. I had a small DH reaction, but it came and went very quickly and was hardly noticable. I'm staying away from BRM products as well.

I was thinking of trying almond milk again, but it never seemed to sit well with me. The last time I bought it I didn't finish the container. What you said about it makes sense.