Richardo

1 hour ago, Scott Adams said:

Oats can be problematic for some people with celiac disease due to cross-contamination or sensitivity to avenin.

Corn and rice are typically safe but should be checked for cross-contamination if processed in facilities that also handle gluten-containing grains.

I never eat oats, haven't for years because of the possible cross contamination. I know the difference in my.body's reaction to the big 3 vs corn or rice. Vomiting was always  an issue if I wasn't careful.with wheat, rye or barley but rhe only issue I had with corn was the dermatitis herpetiformis.  I'm not a dermatologist but I know how certain foods affect me and I just hope my story can offer others an alternative hope to try that isn't dangerous to their health.

As for me... I'm grain free LOL and loving the freedom from dermatitis herpetiformis.

On 6/21/2024 at 4:36 PM, CDW said:

I was diagnosed with dermatitis herpetiformis over 20 years ago at age 40 and then diagnosed with celiac disease. Both diagnosis were done with biopsies and lab work. Over the years I’ve had a few run ins with gluten when I wasn’t careful and within an hour of ingestion I would start feeling the burning and itching of a couple of dermatitis herpetiformis blisters. I would take 25mg of Dapsone and be fine within an hour or so and have no other issues. I never had enough exposure to cause any gastrointestinal problems. I am on a strict gluten free diet and when I eat anything packaged it’s certified gluten-free. The last several weeks I’ve been having outbreaks of dermatitis herpetiformis blisters without a change in my diet. No changes to medications or personal care products. I haven’t eaten at a restaurants and haven’t eaten anything different than in the past. I haven’t had any gastrointestinal issues only the dermatitis herpetiformis rash on elbows, arms, and knuckles. My prescription is for 25mg-100mg of Dapsone if needed. Since my dermatitis herpetiformis was controlled by a strict diet I have taken very little Dapsone in the last 15 years. With the current outbreaks I am taking up to 100mgs of Dapsone to get relief. I went to my dermatologist and he had no answers to my dermatitis herpetiformis outbreaks. He knows I’m very careful with my diet and just told me if I continued to take the Dapsone regularly I would need to start getting monthly lab work. I don’t have an increased iodine intake and I do take a daily multivitamin, vitamin B12, vitamin B6, and vitamin D daily. I have autoimmune thyroiditis treated with levothyroxine and recent thyroid lab tests were all normal. 
 

Is it possible I’ve become more sensitive to gluten and even certified gluten-free products have too many PPM? Or, is there some other reason the dermatitis herpetiformis rash has decided to pop up as I’ve turned 60?  Oral and topical steroids do not help the rash. I have clobetasol ointment at the highest strength for puritis nodularis (it’s under control) and it doesn’t help the dermatitis herpetiformis. I’ve tried antihistamines and every other anti itch, ant inflammatory OTC product to no avail. Dapsone is the only thing that stops the intense burning and itching but I don’t want to be on such a high dose and take it too often. I know the side effects. Has this happened to anyone else or does anyone have a suggestion? Thank you. 

Hi CDW. Some here may disagree with me on this site but, nothing ventured nothing gained.

As long as my suggestion does no harm and is a possible help for your struggles I'll throw it out there.

I have broached this in another forum.but I know this worked amazingly well for me as I too had return of dermatitis herpetiformis every 3 to 4 months for 4 years. with a month break then it would return.

1.I am 100% gluten free (I thought) 2.There is no problems with cross contamination with my diet. 3.My skin rash was confirmed as dermatitis herpetiformis by skin biopsy. 

What I did last spring was go 100% grain free. No oats, corn or even rice. My rash was gone in 2 weeks and never came back intil I tested it 6 months later and ate rice 1 time and corn flour 1 time over a 3 day period. My rash started to come back. I quit again and it has been gone since. A huge relief for me. No more pain itching or unsightly rash ANYWHERE. A study was done in the UK showing that practically all grains contain some type of gluten but the rice corn and oats possibilities IS ALMOST NEVER mentioned in celiac related sites. Perhaps going grain free will help you, perhaps not, but I swear it did wonders for me and hopefully will help ypu too. Worth a try!

I've never had problems with quinoa but I always rinse it well before cooking in case it's processed with other grains. I think quinoa is classified as a seed. I can't eat grains at all but I can eat all seeds. Ain't the human body a pandora's box of surprises??? 

Ok thanks Trents. I had the lesions biopsied and confirmed dermatitis herpetiformis, so I guess dermatitis herpetiformis can be associated with other grains not typically gluten. I appreciate your comment and I'll give Dr Osborne the benefit of the doubt because without him I would never have known of my grain intolerance and would still be suffering today. I simply never read anyone explain how grains could worsen dermatitis herpetiformis and I feel that information should be made much more readily available. Hey if someone tries going grain free and there's no improvement, no loss, however it drastically changed my life for the better and could at least be offered as a suggestion to sufferers from dermatitis herpetiformis. The other option is Dapsome and I wouldn't want anyone taking that chemical if there was a more natural solution.

thanks again 

I was diagnosed celiac about 15 years ago and followed the usual diet restriction on Wheat, barley and rye and did very well on those restrictions with no problems with dermatitis herpetiformis. 4 years ago I started getting bad rashes on my knees and calves, buttocks, around my waist and my elbows and forearms and hands. It seemed to last about 11/2 to 2 months then clear up for a month and come back  again. I never changed anything in my diet and a dermatologist told me I  must getting  cross contamination, which I knew I wasn't.  Finally after struggling with it all that time, I watched a video by Dr Osborne who sited a study done in England showing that ALL grains (rice, corn etc) contain gluten. I went on a totally grain free diet and have now been 100 percent free of dermatitis herpetiformis for over a year. I tried a test and ate corn flour and it started to come back so I'm off all grains again. Long story I know, but my question is, why is practically EVERY celiac site private or Govt only mentioning the BIG 3 and never mentions other grains as a possible means of contamination? I am free  from a horribly uncomfortable condition now and I know there are others who would be encouraged by this.