BoiseNic

Wow! I didn't realize that. I've tried various brands and I seem to get a reaction every time, although sometimes with a delayed onset. Can you recommend any brands??

I agree. It may help to explain some of the reasons people develop intolerances to other foods also. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6906151/

https://www.sciencedirect.com/science/article/abs/pii/S1568997220301889

https://www.jstage.jst.go.jp/article/kurumemedj/68/2/68_MS682018/_pdf#:~:text=This fungus may be associated,develop celiac disease%2C and vice versa.

I'm at work but I'll see what I can dig up when I'm off. Yes I agree that celiac disease is the cause of dermatitis herpetiformis, but there are some insights that suggest yeasts or fungus may be one of the things that initially triggers celiac disease in genetically disposed people. I believe I even read something about it on this site. I had to take repeated courses of antibiotics when I was younger due to a severe strep-throat and ear infection. Looking back, all my problems starting manifesting shortly thereafter. Antibiotic use can lead to yeast and fungus overgrowth, and skin eruptions from both dermatitis herpetiformis and yeasts have strikingly similar characteristics - particularly the extreme itching and burning sensations. I starting wondering about and intuiting this link due to my own experiences and symptoms, and have found a lot of evidence to corroborate it. That's why it would make sense that anti-fungal creams and topicals such as ketoconazole have helped so many people. 

Trents - there is a lot of research and speculation that dermatitis herpetiformis, at least in part, can have fungal overgrowth as one of the causes or underlying factors. Fungal outbreaks are also characterized by extreme itching and burning just like dermatitis herpetiformis. If this theory is any bit true, it would make sense that anti-fungal creams would help with the itch. 

Buckwheat and quinoa are good as mentioned. I would recommend lots of vegetables. Acacia fiber is really good also and helps promote good bacteria growth, as most fiber does.

I know I need them because from everything I've researched, it seems like my dermatitis herpetiformis is exacerbated by fungal overgrowth. I have been taking Dapsone for the past decade or so and multiple other antibiotics before that. However, every time I try to add probiotics to my regimen, I have extreme reactions very quickly. Maybe this is is from fungal resistance or die-off, but it's usually so bad that I can't continue and get through the breakout period. Any suggestions?

I've had this same issue. The conclusion my Dr. and I have come to is that I have become sensitive to other foods also. It is theorized that people with celiac disease and dermatitis herpetiformis have compromised microbiomes from prolonged antibiotic use and other factors. I am 46 and there are lots of other foods now that cause me to have reactions. The thing that seems to help the most is to eat mostly alkaline foods like vegetables. I am also a vegetarian who can't do any kind of dairy because of dermatitis herpetiformis. So you can imagine my diet is pretty limited. Keeps me lean and healthry though. I would look into this, especially since you have been taking the dapsone for so long.

Maybe, but I have been diagnosed with celiac disease and dermatitis herpetiformis. I think the constant use of antibiotics has messed up my microbiome and made intolerant to a lot of foods. Cannot do dairy either. This is not uncommon for people with celiac disease. 

Oh sorry, fasting might me tricky with T1D. I would read up on it. There are some sources that claim fasting help diabetes also. 

I'd stay away from coffee also.

Somebody mentioned oats previously. I have celiac disease and dermatitis herpetiformis. Oats mess me up just as bad as anything else, even the "gluten free" ones. I would stay away from iodized salt also, as someone mentioned. People with celiac disease and dermatitis herpetiformis have tend to have lots of other triggers or intolerances besides gluten. Citric or watery fruits trigger mine. Also, if I drink any fluids within a couple hours before or after I eat, that seems to cause a reaction. This may have something to do with leaky gut or motility issues. I've also noticed candida overgrowth that I am starting to address. The one absolute cure-all for me besides high doses of Dapsone is fasting. I would do a prolonged fast and then slowly introduce vegetables and protein sources. Apples absolutely terrorize me also for some reason. Most fruits are triggers for me actually. I seem to do alright with blueberries though. There are supplements that help also like 3 grams of MSM a day, but you will have a breakout phase. High dose B5 helps, but also has a breakout phase. I've been dealing with this as far as I can remember. I am now 46. If my diet is in check, I only have to take 50mg of Dapsone a day.