To Diagnose Or Not Diagnose

[Querelle]

I've been having Dermatitis Herpetiformis-like rashes (extremely itchy, myriad of tiny red pimples, sometimes developing into yellow papules) ever since I can remember, usually around elbows, knees, and buttocks but more recently even on the cheeks, neck, fingers, wrists, calves, scrotum, and eyes, which is the worst area arguably to ever have this kind of itchy rash. When I was 37, around the time, when my symptoms got much worse, and after numerous other failed attempts to find the cause, I finally bought a couple of home blood tests, and I did them over several weeks repeatedly, each giving positive results for tTG antibodies (with 98% reliability stated by the producer).

At that time, I decided not to visit a GP to get an endoscopy and skin biopsy, due to the fact that no treatment exists and no state benefits are available for coeliac disease in my country that would apply to my financial situation, and I just started with a strict gluten free diet. It's been several months, and in general my symptoms didn't improve: skin rash no improvement (still getting regular flareups), constant brain fog no improvement, steatorea no improvement, but diarrhea and cramps disappeared. I understand that the rash may be caused by iodine and occasional unavoidable cross-contamination (despite best efforts), brain fog may be unrelated, and for steatorea and gastro-issues to disappear completely, it might require a lot more time than that. But I still have my doubts. Would you now, after all these months of being gluten free, start to eat gluten for several weeks again (as required for the endoscopy and biopsy) to be 100% sure, or just keep going and hope that you're on the right track and that the rash will disappear one day?

 

[Scott Adams]

I would only go this route if you miss gluten so much that you will need the formal diagnosis to stay gluten-free, or if you need the diagnosis to get further follow up an treatment by doctors, but definitely talk to your doctor about this possibility.

The first thing to find out would be whether or not your diet has been 100% gluten-free. A recent study indicates that among celiacs who eat out a restaurants up to 90% get some amount of gluten contamination in their diets over the study's time period. My suggestion would be to fully re-examine your diet and be sure it is indeed gluten-free for the next 3 months. People with DH are super sensitive, and even tiny amounts of contamination can keep the skin reaction going for weeks.

At the same time you may want to try out an elimination diet to see if you have additional food intolerance issues. Many people have issues with dairy, eggs, corn, soy, shellfish, etc., and allergies can cause skin rashes and other skin issues.

 

[Querelle]

Thank you for your reply. I do not miss gluten at all, and I am super paranoid about cross contamination. I no longer eat at restaurants, and read every label and avoid anything that says "contain traces of gluten and/or lactose" apart from other ingredients. I suspect iodine to be the main culprit of my ongoing flareups, but I could not find much information on the subject (although it would not explain my constant brain fog, which may be getting even worse). Is it possible? Or is iodine-induced DH flareups so rare that I should not worry about it?

[Scott Adams]

Actually in those with DH it is relatively common that iodine can cause flareups, but I don't have an exact number of just how common it is. Here is a search of this site on the subject that includes older posts and articles. It might be worth browsing some of the results here:

https://www.celiac.com/search/?&q=iodine dermatitis&search_and_or=and