Pablohoyasaxa

Your  post is excellent. Thank you!! I have been trying to keep my diet "truly gluten free," but as you know, it's a  sneaky allergy, especially if you have a heightened sensitivity. So ironically, and sadly, no medical person told me to stay away from "gluten free oats.".  To my own fault, my lack of awareness led to years of eating  massive bowls of gluten-free oatmeal, sometimes twice a day. Awful right?  I am sure this added to the recovery time. I think I have been super vigilant for the last 12 months, but I wonder. I  haven't gone to a restaurant in a long time. My wife is frustrated with my social situation but truthfully I need to get this condition over with. Thanks again.

Great  post. The skin issue can be intolerable. I have been taking niacinamide for the past month and have improved with respect to the blistering lesions. 

yes, the above is true.
however; if the doctor does the tests and finds your are a candidate then dapsone is the drug that will stop the blisters immediately.
dapsone started as a drug for malaria and leprosy....I do not know how it became known for dermatitis herpetiformis. I can tell you that my doctor told me she had several patients that have taken it over 20 years.
our dosage was one a day until clear,then we went to every other day for a while, working down to zero a day. I still have an active prescription for dapsone but have not had to take one in several years.
in closing, if anyone reads this and has truly been diagnosed for dermatitis herpetiform is, then ask your doctor for dapsone.....
for those of you reading this that have never had the blisters and infections from the scratching and oozing fluid...than you can't identify.
you can have celiac without dermatitis herpetiform is....but all people with dermatitis herpetaformis have celiac...  a double whammy, so to say.

About 9% of celiacs react to the protein in oats (avenin) like they do gluten. The dairy protein casein is also known to damage small bowel villi like gluten does in some celiacs. In addition to that, many manufactured gluten-free food products contain difficult to digest polysaccharides like xanthan gum that are famous for causing digestive distress.

Thank you so much for your response! It's been a challenging journey with this condition! 

@Pablohoyasaxa, if your diet is truly gluten free you should not still be experiencing stomach cramps and diarrhea. So, maybe gluten is still getting in there somehow or you have developed other food intolerances which, by the way, is very common in the celiac population. Are you still consuming dairy and oats (even gluten free oats)?

Hi @Stephanie Wakeman,
Get your vitamind D blood level checked and supplement to raise to around 80 ng/dl or 200 nmol/L.  This is the natural upper limit and provides the best immune system. Vitamin D plays a role in regulating the immune system, and low levels may impair the immune system's ability to control allergic responses.  Vitamin D deficiency may be linked to an increased risk of developing allergies and experiencing more severe allergic reactions.  Vitamin D is one of many vitamin deficiencies caused by small intestine damage so unless you get enough sunlight or taking large doses of vitamin D, you will be deficient.
 
 
 

Your journey with gluten sensitivity and celiac disease sounds incredibly challenging, especially after decades of managing symptoms that were misunderstood or overlooked. It’s frustrating how long it took for proper awareness and diagnosis to emerge, leaving you to deal with the physical and emotional toll of dermatitis herpetiformis and other severe reactions. Staying gluten-free for two years is a huge accomplishment, and it’s encouraging that your lesions are finally receding—progress, even if slow, is still progress. The social discomfort of visible symptoms is so hard, and it’s unfair to feel isolated because of misconceptions. Hopefully, with continued strict adherence to your diet, your gut will heal further, and the weight loss and cramping will improve. Hang in there!