I am looking for more information. I have one of the possible gene variants for celiac.
Gene: HLA-DQB1. CT… (normal is TT)
My issue is that i came down with a VERY RARE auto immune disease called pemphigus vulgarius. It can be life threatening and i actually thought i was gonna die. I am better now but one day while googling the gene variant i have for celiac I found out that this same gene can be associated with pemphigus!!! So maybe i found my trigger!? If i avoid gluten perhaps the PV will not return???. However there are deeper numbers that i do not understand that have to do with genes and how bad pemphigus can get. I only have the 23andme and livewello. I asked my doc for deeper genetic testing for celiac and she said no. Ugh. Tried ro give me the blood tests for celiac and there is no point. I stopped gluten last june.
I’m so very sorry for all that you must have been through to date. I used to manage a skin (dermatopathology) laboratory and pemphigus vulgaris was a diagnosis that came back more frequently than you can imagine. So you are not alone! This is one autoimmune disease that doctors will automatically go to steroids to treat - because they do actually work. The thing is, long term use of steriods (which would be required in your case) can cause incredible damage to a number of other parts of your body. Ceasing gluten was a good thing to do !!! But ‘diving deeper’ into your genes isn’t really going to tell you how bad this disease will get. That all depends on you, environment and your lifestyle (Like stopping gluten did). Personally, I would find a functional doctor, rather like a cross between an MD and a Naturopath and work with them to treat you. Yes, it will be expensive I suspect. But so is living your life in misery and pain.
If you search You Tube for “Dr. Mercola and Dr. Cowan Discuss Low-Dose Naltrexone” you’ll hear about a method for treating any autoimmune disease. Doctors that use LDN to treat these problems often get rid of half of them. Diet is also important when trying to jump start your immune system. Dr. Cowan is on the West Coast and has a company that packages dried vegetables that make healthy diets easy to prepare. I use my garden and Amazon to achieve the same result but spend lots of time learning what works best.