Celiac And Now Autoimmune Hepatitis

[momma.of.four]

On Aug 13, I was officially diagnosed with Celiac Disease and 12 days later, was diagnosed with Autoimmune Hepatitis with Stage 4 Fibrosis...wondering what is next???

I have only been on my gluten-free diet for 2 weeks and 2 days ago, started taking Prednisone and 6-mp for the AIH and am having issues again with everything that I eat! I have dropped 6lbs in 2weeks and scared to lose anymore weight but eating is making me very sick.

My whole story is on my profile page but I would love to hear if others are/have been in the same boat. I just don't know what to expect with all of this.

TIA,

[ravenwoodglass]

I am so sorry you are going through this. I hope the diet helps or at least slows the progression of the disease. Are you seeing a hepatologist? That would be helpful if you can find one near you. Do make sure any drugs they give you are gluten free, check with the maker to be on the safe side since doctors won't know although a couple of mine have called the makers with me sitting in front of them before they write a script. I know this is a serious diagnosis but there are good options including liver transplants if needed.

Try and stay positive although I know you must be scared right now. Sending good thoughts your way.

[cyberprof]

Sorry to hear about your double-whammy...just dealing with celiac is enough for one person!

I know nothing about autoimmune hepatitis, except to say that auto-immune diseases run in packs, so if you have one - like celiac- you're at a higher risk for another.

What are you eating? Perhaps if you post what you're eating, some folks can help.

I would suggest starting with the most basic diet ever (especially since many celiacs have other intolerances):

Try plain chicken or turkey breast, white rice cooked plain and green beans and pears. Eat that for b'fast, lunch and dinner. If that works, try adding in zucchini, then ground beef, then applesauce one at a time everyfew days add something else. The advantages of this are simplicity, low chance of allergens and low risk of contamination from gluten. (The simple things like eggs, milk, citrus, potatoes can be a problem.)

Did you make sure, as Ravenwood asks, that your prescription is Gluten-free? Are you taking anything else? What about lip balm, lipstick and beverages? Stick to water or plain coffee or Lipton tea if you can't give up everything.

Hang in there and post more if you have questions.

[mslee]

On Aug 13, I was officially diagnosed with Celiac Disease and 12 days later, was diagnosed with Autoimmune Hepatitis with Stage 4 Fibrosis...wondering what is next???

I have only been on my gluten-free diet for 2 weeks and 2 days ago, started taking Prednisone and 6-mp for the AIH and am having issues again with everything that I eat! I have dropped 6lbs in 2weeks and scared to lose anymore weight but eating is making me very sick.

My whole story is on my profile page but I would love to hear if others are/have been in the same boat. I just don't know what to expect with all of this.

TIA,

Hi There!

I wanted to let you know you are not alone, I was dxed with celiac in July of '08 I have been gluten free ever since. A couple months before my celiac dx they thought I had autoimmune hep. my labs had shown it for almost a year. So they ordered a liver biopsy, & they said the results really surprised them....my liver was very healthy with only minor inflammation. My GI thought my liver labs would normalize going gluten free...& they have! It did take almost a year. But they have stayed normal since.

Now healing varies from person to person, I'm one of those who needed to do alot more than just gluten free & two year later still have alot of healing to go. I found out pretty quick my body would not tolerate soy, cow dairy, or most grains. I had a bunch of new food allergies & sensitivities. My Drs now think leaky gut is a problem.

So don't get discouraged it's a major life change & takes some experimenting but over all we feel much better off gluten-free than while consuming gluten.

As for the autoimmune stuff...I also have hashimoto's, colitis, raynaud's, sjogrens & possible lupus. & Yes they say if you have one autoimmune condition you are likely to have more. Most are not too serious (a few are but they should see those in labs/symptoms) most are treated the same way...prednisone & it will reduce inflammation, help the pain & make you gain weight. If you are on it long term it has some side effects so try to stick with it as needed.

I get mixed info about my autoimmune combo, some say I have all some say some, some say the untreated celiac caused them & they may get better with time & being gluten-free.

Just wanted to share, hang in there!

Ask any questions you need...hope you feel better!