dermatitis herpetiformis getting worse

[gffoodie]

Hi all - I posted here a couple weeks ago about my tag-iga antibodies remaining high despite strict gluten-free diet. My most recent blood work showed they are finally went down a lot and the diet is working! YAY! 

However - I have noticed that the stricter diet has actually made my dermatitis herpetiformis worse - which is so confusing to me. I went to see a naturopath for another opinion because I really feel like there is something else going on here and she mentioned cross -reactivity (which I know is controversial) and leaky gut/ gut permeability issues. Not sure if anyone has experienced anything similar or have had success taking a more functional approach - feeling hopeless and looking for any solution to the itch and never ended hives/blisters that keep popping up. Dapsone works for me, however I have been trying to avoid taking it due to other concerns. 

I am eating only at home in a 100% gluten-free household. I have cut out processed foods, dairy, corn, eggs, and legumes. I recently felt like the rash got worse after having rice and after drinking a glass of wine? I am trying to avoid both for a little to see if that helps at all. I do watch my iodine intake as well. Primarily my diet is comprised of meats, veggies, fruit, dried fruit, almond milk (Malk brand), coffee, avocados, potatoes, almond butter, peanut butter, cashews, some gluten-free spices from Spicely. 

If anyone has any advice that would be greatly appreciated! 

[Hopeful1950]

I am so sorry that you are going through this. To put it bluntly dermatitis herpetiformis is a b%$@#. Do not stop what you are doing. It can take a long time for it to completely clear up if ever :(.  This is because some of the antibodies that are deposited in your skin after gluten ingestion can remain in you skin for a long long time before they blister.  It is my understanding up to ten years…!  Double check everything. I was diagnosed with this over ten years ago and early on I took dapsone for awhile to maintain my sanity.  I now keep it on hand for when I am traveling and don’t have absolute control over what I eat. Unless it makes you very I’ll, maybe use it temporarily until your body has had time to adjust to your new diet.

I had to make my kitchen dedicated and even the dog is gluten free.  It looks like what you are doing with your diet is correct, have you checked any meds?  Personally I can’t do almond milk/butter. I break out like crazy from them.  I can, however eat almonds.  Maybe try eliminating those things.  

Sometimes I find it hard to determine what causes a dermatitis herpetiformis flare because my reactions are delayed for 12-24 hours.  I do know that the sulfites in wine make me feel hot, red and itchy…not dermatitis herpetiformis specifically, but gives it an excuse to itch and burn worse if I am going through a flare.

I know other folks will have a lot of good info and suggestions.  Stay strong. It will get better, I promise.

[Rogol72]

Fellow long term dermatitis herpetiformis'er here. If I take my eye off the ball regarding Vitamin D supplementation and let it slide, then my skin becomes more reactive ... itchy but not blistering ...  even though I'm strictly gluten free. I can't handle any gluten-free grains or rice. Nuts, seeds and dried fruit are a no go for me also, and I don't consume anything containing vinegar (hummus, mayonnaise etc.). I also make sure I'm getting sufficient minerals and vitamins (Calcium, Magnesium, Zinc etc. ... they're cofactors of lots of enzymatic processes in the body). Every action helps. I know it can be hard, but maybe ditching the coffee for a while as it can irritate the gut. Vitamin D helps to regulate the immune system. I've also read somewhere that B3 can help flush the skin, whether that can reduce the skin antibodies I'm not sure. 

Hang in there.

[Teresaburris1963]

12 hours ago, gffoodie said:

Hi all - I posted here a couple weeks ago about my tag-iga antibodies remaining high despite strict gluten-free diet. My most recent blood work showed they are finally went down a lot and the diet is working! YAY! 

However - I have noticed that the stricter diet has actually made my dermatitis herpetiformis worse - which is so confusing to me. I went to see a naturopath for another opinion because I really feel like there is something else going on here and she mentioned cross -reactivity (which I know is controversial) and leaky gut/ gut permeability issues. Not sure if anyone has experienced anything similar or have had success taking a more functional approach - feeling hopeless and looking for any solution to the itch and never ended hives/blisters that keep popping up. Dapsone works for me, however I have been trying to avoid taking it due to other concerns. 

I am eating only at home in a 100% gluten-free household. I have cut out processed foods, dairy, corn, eggs, and legumes. I recently felt like the rash got worse after having rice and after drinking a glass of wine? I am trying to avoid both for a little to see if that helps at all. I do watch my iodine intake as well. Primarily my diet is comprised of meats, veggies, fruit, dried fruit, almond milk (Malk brand), coffee, avocados, potatoes, almond butter, peanut butter, cashews, some gluten-free spices from Spicely. 

If anyone has any advice that would be greatly appreciated! 

Omgosh  i thought i was reading about my life. I am doing the same thing sweetheart, i dont understand this stuff i am totally gluten-free and i am full blown blister, rash, itching, ice pks up all night stage. I keep saying theres something else wrong with me or im allergic to something else if u find the answer please let me know and i pray ot ain rice bc i love rice lol. Praying you feel better.

[gffoodie]

13 hours ago, Hopeful1950 said:

I am so sorry that you are going through this. To put it bluntly dermatitis herpetiformis is a b%$@#. Do not stop what you are doing. It can take a long time for it to completely clear up if ever :(.  This is because some of the antibodies that are deposited in your skin after gluten ingestion can remain in you skin for a long long time before they blister.  It is my understanding up to ten years…!  Double check everything. I was diagnosed with this over ten years ago and early on I took dapsone for awhile to maintain my sanity.  I now keep it on hand for when I am traveling and don’t have absolute control over what I eat. Unless it makes you very I’ll, maybe use it temporarily until your body has had time to adjust to your new diet.

I had to make my kitchen dedicated and even the dog is gluten free.  It looks like what you are doing with your diet is correct, have you checked any meds?  Personally I can’t do almond milk/butter. I break out like crazy from them.  I can, however eat almonds.  Maybe try eliminating those things.  

Sometimes I find it hard to determine what causes a dermatitis herpetiformis flare because my reactions are delayed for 12-24 hours.  I do know that the sulfites in wine make me feel hot, red and itchy…not dermatitis herpetiformis specifically, but gives it an excuse to itch and burn worse if I am going through a flare.

I know other folks will have a lot of good info and suggestions.  Stay strong. It will get better, I promise.

thanks so much for the support! I dont take any meds but I do take a prenatal vitamin from Thorne (hoping to get pregnant in a couple months and hoping to have this more under control by then). I will definitely trial the almond butter and almond milk - I consume a lot of them, which could be making things worse. 

[gffoodie]

10 hours ago, Rogol72 said:

Fellow long term dermatitis herpetiformis'er here. If I take my eye off the ball regarding Vitamin D supplementation and let it slide, then my skin becomes more reactive ... itchy but not blistering ...  even though I'm strictly gluten free. I can't handle any gluten-free grains or rice. Nuts, seeds and dried fruit are a no go for me also, and I don't consume anything containing vinegar (hummus, mayonnaise etc.). I also make sure I'm getting sufficient minerals and vitamins (Calcium, Magnesium, Zinc etc. ... they're cofactors of lots of enzymatic processes in the body). Every action helps. I know it can be hard, but maybe ditching the coffee for a while as it can irritate the gut. Vitamin D helps to regulate the immune system. I've also read somewhere that B3 can help flush the skin, whether that can reduce the skin antibodies I'm not sure. 

Hang in there.

I have always been Vit D deficient so I do supplement - but I honestly have not been the best with consistency there. I do feel like the nuts could be a potential problem as I keep seeing people say similar things - I plan to trial them out and see! I read about B3 and was thinking about supplementing that too.. I take a daily prenatal form Thorne right now.

thanks so much for the support its helpful to hear from people who "get it".  

3 hours ago, Teresaburris1963 said:

Omgosh  i thought i was reading about my life. I am doing the same thing sweetheart, i dont understand this stuff i am totally gluten-free and i am full blown blister, rash, itching, ice pks up all night stage. I keep saying theres something else wrong with me or im allergic to something else if u find the answer please let me know and i pray ot ain rice bc i love rice lol. Praying you feel better.

I feel so similar! It is nice knowing I am not alone in this experience even though I do not wish this on anyone! I am hopeful we figure this out eventually! hoping you feel better as well - If I find success with anything I will share! 

[gossamersails]

On 2/25/2024 at 7:20 PM, gffoodie said:

Hi all - I posted here a couple weeks ago about my tag-iga antibodies remaining high despite strict gluten-free diet. My most recent blood work showed they are finally went down a lot and the diet is working! YAY! 

However - I have noticed that the stricter diet has actually made my dermatitis herpetiformis worse - which is so confusing to me. I went to see a naturopath for another opinion because I really feel like there is something else going on here and she mentioned cross -reactivity (which I know is controversial) and leaky gut/ gut permeability issues. Not sure if anyone has experienced anything similar or have had success taking a more functional approach - feeling hopeless and looking for any solution to the itch and never ended hives/blisters that keep popping up. Dapsone works for me, however I have been trying to avoid taking it due to other concerns. 

I am eating only at home in a 100% gluten-free household. I have cut out processed foods, dairy, corn, eggs, and legumes. I recently felt like the rash got worse after having rice and after drinking a glass of wine? I am trying to avoid both for a little to see if that helps at all. I do watch my iodine intake as well. Primarily my diet is comprised of meats, veggies, fruit, dried fruit, almond milk (Malk brand), coffee, avocados, potatoes, almond butter, peanut butter, cashews, some gluten-free spices from Spicely. 

If anyone has any advice that would be greatly appreciated! 

Read the information on this link about how certain spices can cross-react with the anti-gluten antibodies:  

 

[James47]

On 2/26/2024 at 3:20 AM, gffoodie said:

Hi all - I posted here a couple weeks ago about my tag-iga antibodies remaining high despite strict gluten-free diet. My most recent blood work showed they are finally went down a lot and the diet is working! YAY! 

However - I have noticed that the stricter diet has actually made my dermatitis herpetiformis worse - which is so confusing to me. I went to see a naturopath for another opinion because I really feel like there is something else going on here and she mentioned cross -reactivity (which I know is controversial) and leaky gut/ gut permeability issues. Not sure if anyone has experienced anything similar or have had success taking a more functional approach - feeling hopeless and looking for any solution to the itch and never ended hives/blisters that keep popping up. Dapsone works for me, however I have been trying to avoid taking it due to other concerns. 

I am eating only at home in a 100% gluten-free household. I have cut out processed foods, dairy, corn, eggs, and legumes. I recently felt like the rash got worse after having rice and after drinking a glass of wine? I am trying to avoid both for a little to see if that helps at all. I do watch my iodine intake as well. Primarily my diet is comprised of meats, veggies, fruit, dried fruit, almond milk (Malk brand), coffee, avocados, potatoes, almond butter, peanut butter, cashews, some gluten-free spices from Spicely. 

If anyone has any advice that would be greatly appreciated! 

Hey..so sorry to read about your struggles .I was diagnosed last June at 48..I had a horrible scar/scab whatever you want call it on my neck for years..went gluten-free after diagnosis and now almost gone..sice tho I have couple scabs not to big on my forehead..taking more supplements and sticking to my diet and hoping persistence soon pays off..just keep doing what doing and look into getting supplements like iv been recently advised to do 👍👍

 

James

Glasgow