Coeliac related auto-immune hepatitis

[Bilirubinboy]

Just been diagnosed with this - last year had sudden severe jaundice ALT > 1200 etc. CT and liver biopsy revealed inflamed liver and pancreas, the liver biopsy showing slight focal necrosis. The blood tests showed the presence of Coeliac related antibodies (TTG/EMA), subsequent biopsy of the duodenum confirmed Coeliac (not sure where I sit on the Marsh scale). Presently prescribed Prednisolone (reducing) and Azathioprine and advised to adopt a low gluten diet. (Blood and liver counts presently normal). Just wondered if anyone has had a similar diagnosis/experience and knows how long a low gluten diet takes to work, also how long the medication is required. Photo attached of focal necrosis of the liver. Curious thing is that I experience very few effects from eating wheat, except for this sudden recent liver reaction.

[Hidden]

Ways above my remit there. However I noted your post from last year re Shampoo. No less than 30 mins ago I opened one for use. Just bin it / scary.

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They advised you just to follow low gluten diet? Celiacs should eat no gluten whats so ever..

Im celiac and have PBC/AIH overlap. On azathioprine, Urso and just reduced of steroids but talk about going back on again not for liver though this time but infĺammation elswhere. I was told no gluten at all much too my dismay as i struggle with it horribly.

[mrossi]

Hi, I’ve been diagnosed with Coeliac 7 yrs ago and AIH 6 yrs ago. I can’t stress enough the importance of NOT eating any gluten at all irrespective of where you sit on the Marsh scale. With regards to the liver and the meds, I started with Prednisolone for about a year than just continued with high dosage of Azathioprine till this day. I have been lucky that both the steroids initially then Aza have worked and keep my inflammation/mild fibrosis under control. It very much depends on your own body. With regards to the Coeliac, if you follow a strict diet as I said before you should see improvements as soon as one month after.

[Bilirubinboy]

Thanks very much for the information, since it took so long to diagnose I was concerned that it was quite a rare effect of Coeliac though I've come across quite a few cases on the web since then. I think the shampoo may have been a red herring (me clutching at straws) since the liver consultant said he uses the shampoo and I would need to drink a bottle for it to impact the liver. I'm not sure why Coeliac wasn't picked up earlier (I've seen 4 liver consultants!) because the antibodies were present in my many, many blood samples. The hospital tend to adopt a process of elimination where all the common issues are tested for first to the extent of using CT scans and liver biopsies though I'm glad they got there in the end and I was treated very well. One other "smoking gun" would have been relations with similar auto-immune conditions. I have one cousin with severe Coeliac, another with Crohn's and 2 aunts with Sjogrens. One further interesting though contentious observation. I submitted my DNA details (taken during genealogy research) to a web site (Promethease) that correlates diseases with certain chromosome combinations around the world, and guess what came out top, Coeliac/Celiac (though the research rating - repute is poor - gs328 Celiac disease risk DQ2.2 + DQ2.5 haplotypes inherited together - make of that what you will). Though again could just be a coincidence/red herring.

[Carol141]

Sorry I have no experience with coeliac AIH.

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I was diagnosed with AIH and same high ast/alt but not the other condition you mentioned. Yes for gluten sensitivity on lab but not celiac. I was on the same meds for a out 2.5 years and have been in complete remisssion and drug free for the last 5 years. I eat zero gluten and that is a big part of my recovery I believe. My bloodwork came down fairly qickly but you must stick with no gluten forever. Also a very healthy diet (organic produce, pastured meat, etc) and minimal packaged/processed food matters. Good luck!