TheDHhurts

I want to order some Azelaic Acid Suspension to add to my daily routine.

However, I notice that azelaic acid is derived from grains.

On The Ordinary's website they say their azelaic acid suspension is gluten free, but I wanted to see if people here have any experience with this. Any thoughts?

I stopped eating mushrooms post-diagnosis because I was told they were grown on hay/barley/some sort of glutenous substance, and that I would end up getting cross-contaminated.

More recently I've seen some people challenge this, saying that modern farming practices do not expose mushrooms to gluten cross-contamination.

I'd like to try mushrooms again, but I'm very cautious about introducing new foods because I'm very sensitive (I have DH, and seem to break out from minute amounts of cross-contamination). Any suggestions on how I should proceed here?

Thanks!

I need to purchase a face scrub, and want to make sure I don't end up with one that has hidden gluten.

I went to some manufacturer's websites and got confused very quickly ... so many ingredients that I can't identify.

Any mainstream (ie easy to find at my local store or Amazon) face scrubs that users can recommend?

Thanks!

14 hours ago, GFinDC said:

Hmm, i have no experience with FODY ketchup myself or DH.  Some people do report getting flareups of DH from high iodine foods though.  So maybe that's it?  You could wait until the DH settles down and try just plain tomatoes and see if they cause a reaction.  That's a slow but fairly reliable way of testing food reactions.

I don't have any problems with tomatoes -- I eat cherry tomatoes from time to time. I have a feeling that my reaction is to the vinegar and/or spices in this product.

I do tend to avoid processed foods altogether but figured a little certified gluten-free ketchup would be okay. Guess I was wrong!

I stopped eating all processed foods a while back, and have been DH-free since September. My food is sooo bland, so I figured I would get some FODY ketchup, which is certified gluten free (and low FODMAPS). Had a small amount with some homefries I made (not processed ... I cut up some potatoes and made them myself).

Next morning I see a couple bumps on my face, consistent with my DH.

I checked the ingredients list and it includes vinegar, sugar, modified corn starch, spices.

All I can figure is that I'm extremely sensitive to small amount of gluten, and that despite being certified gluten free there's inevitably small amounts in processed food.

Question for more experienced members of this board: do you think I'm right in this assumption, or could something else be at play?

I'm so sorry to hear about your issues. It sounds like you're taking the right approach (not a doctor, but suffer from DH).

Do say this new rash appears in the same places as you get DH. Do you think this is also DH, or something completely different? If it is DH, are you aware of its connection to iodine? (Iodine causes DH to flare for a lot of us.)

Sorry I can't be of any particular help. Please do update us as you sort things out. Be well.

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.

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.

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!

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.

It now seems apparent that iodine is closely connected to my DH outbreaks. But how much iodine is considered too much?

The recommended daily intake of iodine for adults is 150 mcg. And deficiencies in iodine are linked to negative health outcomes, which I'd like to avoid.

My daily multivitamin contains 60 mcg. I'm not sure how much it contains, but my fish oil (omega 3) probably has a lot of iodine in it too. I've stopped taking these, momentarily, as I try to figure out how much iodine I should be taking.

Is there research on how much iodine should be consumed to avoid negative health outcomes while also limiting DH outbreaks?

(I don't seem to have much iodine intake beyond the multivitamin and fish oil. I eat potatoes, but never the skins, and the beef and pork I eat contain it as well. But I think their levels would be relatively low.)

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.

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?

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!)

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?

Hi, I was wondering if there are some resources somebody new to the supersensitive lifestyle should read to get acquainted. I've been gluten free for a number of years now, but I still have recurring DH. I came to the realization after trying to ID the source of gluten contamination that I must be triggered by lower amounts. So, I need to learn as much as I can about this particular topic so I can get over this DH. Any help appreciated, so feel free to share resources!

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.

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?