New and really sick

[rosy lens]

Hi I am new here and really sick. I have an autimmune liver disease called Primary Biliary Cholangitis (PBC) hashis hypothyroid myasthenia gravis and other related autoimmune disorders including vitiligo and sjogrens. I have always had GI trouble diverticulitis and adenomas pretty bad pain and gas. I was tested by blood and biopsy for celiac over the years as it runs with my diseases and they kept saying it was negative. Ive been very sick with gi trouble for the last two years hospitalized with acute pancreatitis and pancreatic insufficiency and ileus and finally was so inflamed i could not pass gas even or push out stool. I felt it was an allergy of some kind went off my meds didnt help, i got worse. Prednisone helps. Then so sick ready to die getting no help from all my many docs i quit food, went to broth and rice. Within 24 hours i was finally able to pass gas. Things get better every day that i manage to stay off gluten but my gi tract is sooo damaged. I dont want to eat much. How can i heal this and how long does it take? Will my pancreas get better? Its so hard to even trust food as even some gluten free stuff seems to cause a reaction. Thanks for any help you can give. This is really a hard diet with todays foods. The pain is really bad too. 

[GFinDC]

Welcome to the forum rosy lens!

Recovery from celiac damage can be a slow process, but it depends on the individual.   We are all different and our bodies seem to have a mind of their own sometimes. duh..!    Anyway, recovery is faster the better a job we do of avoiding all gluten.  It can help to avoid processed foods for several months and also dairy and soy.  Try to stick to simple foods you cook yourself from scratch.  Avoiding carbs and sugary foods and eat plenty of protein.  No dairy for at least 2 months.  Celiac can destroy our villi that make an enzyme to digest dairy.  But you may get dairy back after a few months healing.  Or not, it's hard to tell.

Oh, oats are also a bad idea as some of us react to them just like we do to wheat, rye and barley.  There are lots of thing to eat like meats, veggies, eggs, nuts and fruit.  Maybe try some Mission brand corn tortillas instead of gluten-free breads for a while.

It can take 18 months or more to heal from celiac damage.  It's good to learn how to avoid cross contamination also.

[cyclinglady]

While you might not actually have celiac disease, it sounds like gluten is not for you!  Have you looked into the Autoimmune Paleo Diet (which is gluten free too)?  It starts off strict (e.g. fruit, meats, fish, veggies) and adds in possible reactive foods.  

https://autoimmunewellness.com

These two ladies at Autoimmune Wellness crowd-funded a small study conducted at Scripps in San Diego.  They tested Inflammatory Bowel Disease patients who achieved a 78% remission in just weeks.  Definitely worth researching. Here is the study:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

I have celiac disease, Hashimoto’s and autoimmune gastritis.  I am feeling great on a gluten free, non-processed foods diet.  I am basing this not just on symptom resolution but the fact that my thyroid is no longer enlarged or has nodules.  I went 20 years struggling with my thyroid before my celiac disease diagnosis.  If one Autoimmune disorder flares, they all flare.  Diet has been extremely beneficial to me.  

[rosy lens]

Thank you so much for your kind replies gluten-free and cyclinglady. Yes Im having joint inflammation and vision problems. Im developing allergies to things I take by mouth. I am having such a bad reaction to synthroid I cant take it also new reaction to either penicillin or codeine. Im just not metabolizing even meds right. My thyroid also seems much better on gluten free to where I dont seem to need synthroid. I seemed to have trouble on oatmeal too. What im learning about PBC is that it is due to damage to what regulates the immune system so you can just develop reactions. I have had digestive troubles since birth. I think maybe the prednisone tapers and plaquenil I take mess up the tests. Thanks for the links and the advice to heal. Im really going to have to be strict to heal. Thank you so much I know what to do now and that it will take longer than i thought. Thank you.