Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Autoimmune Hepatitis And Celiac Disease

autoimmunefamily

Recommended Posts

autoimmunefamily Newbie
autoimmunefamily
Posted

My 16 yr old daughter is being evaluated for possible autoimmune hepatitis. Her symptoms are fatigue, joint pain, muscle weakness (waterpolo player-cannot exercise to the intensity of 6 months ago), and elevated LFTs and ANA with specked ANA pattern. She had a liver biopsy 2 days ago, pending results. The family has a history of autoimmune disease - mom with Sjogrens, brother with ulcerative colitis. Wondering if there could be a possible connection to gluten intolerance, and what is the easiest method to test for this?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

It can be related to celiac disease according to one study at least. I googled "celiac autoimmune hepatitis" and found this:

Prevalence of celiac in Autoimmune hepatitis.

Celiac disease (celiac disease) may be found in association with other autoimmune diseases.

...

High prevalence of celiac disease in autoimmune hepatitis detected by anti-tissue tranglutaminase autoantibodies.

Villalta D, Girolami D, Bidoli E, Bizzaro N, Tampoia M, Liguori M, Pradella M, Tonutti E, Tozzoli R.

Immunologia Clinica e Virologia, A.O. S. Maria degli Angeli, Pordenone, Italy.

Celiac disease (celiac disease) may be found in association with other autoimmune diseases.

...

....

The crude prevalence rate of celiac disease in AIH was 63.8 per 1,000 (95% CI, 13.2-186.1), and it was significantly higher than that found in the general population in Italy (4.9 per 1,000; 95% CI, 2.8-7.8). The results of this study showed a high prevalence of celiac disease in patients with AIH. For this reason, early serological screening testing for celiac disease is strongly recommended for all AIH patients. Copyright 2005 Wiley-Liss, Inc.

Brooklyn528 Apprentice
Brooklyn528
Posted

They can most definitly be connected because I have both. I was diagnosed celiac in January and diagnosed with Autoimmune Hepatitis in September, both this year. Autoimmune Hepatitis is very rare though. I pray that you get a diagnosis and can start treatment soon. If you don't mind me asking, what are the highest her enzymes have gone? Mine got up into the 400 ranges before they finally got a diagnosis. Also I would be more than happy to speak with her about the disease and what she can expect. AIH can be treated and put into remission with maintenance drugs. Please do keep me informed of her status.

Brooklyn

Brooklyn528 Apprentice
Brooklyn528
Posted

The easiest test for celiac is a blood test. I would suggest getting the gene mapping or comprehensive panel done. That way if she comes back negative with no gene markers you don't have to test for it again. If negative with gene markers, then you know to do a routine test for celiac once every six months to a year.

Brooklyn

ravenwoodglass Mentor
ravenwoodglass
Posted
The easiest test for celiac is a blood test. I would suggest getting the gene mapping or comprehensive panel done. That way if she comes back negative with no gene markers you don't have to test for it again. If negative with gene markers, then you know to do a routine test for celiac once every six months to a year.

Brooklyn

Unfortunately you can not go off of gene markers. I am very thankful that my genes were tested 5 years AFTER I was diagnosed. Otherwise I most likely would not be here to write this to you. I would have instead been diagnosed with RA and in a wheelchair still unable to use my hands and loaded up on meds or in a coffin. Some doctors in the US only look for two of the 9 genes associated with celiac. 7 more were 'discovered' recently and more doctors are starting to recognize this but not all. Gene testing is a tool in diagnosis but it is not definative.

There is an association between Autoimmune liver disease and celiac. If the doctors had diagnosed my twin and I with celiac when we were children my life would have been very different and my twin might still be here beside me.

Ask them to test your DD for celiac, start with the blood test and then if that is positive she will have a biopsy of the small intestine. However there are high rates of false negatives so after all Celiac testing is done that you choose to do have her do a strict trial of the diet for at least 3 months to see if it helps her issues. Sometimes the body can tell us what the tests cannot.

Brooklyn528 Apprentice
Brooklyn528
Posted

Just to clarify, the comprehensive celiac disease panel test for all of the antibodies and does the gene mapping. I work for a GI doctor and this is the first test that he does on every suspected celiac. So its the best test to do first.

ravenwoodglass Mentor
ravenwoodglass
Posted
Just to clarify, the comprehensive celiac disease panel test for all of the antibodies and does the gene mapping. I work for a GI doctor and this is the first test that he does on every suspected celiac. So its the best test to do first.

I agree. Sounds like you work for a good doctor. Testing does catch a large percentage of us but there are still some that slip through the cracks. Because my blood tests were always a false negative my doctors went off just that and never mentioned even what they were testing for so I could have a chance to try the diet. So many doctors rely on negative or only slightly positive tests as an absolute 'you don't have this' that I lost a lot of years. There is so much still to learn about this genetic difference.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,987
    • Most Online (within 30 mins)
      7,748
    Paula Burlando
    Newest Member
    Paula Burlando
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Scott Adams · Posted

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      New Celiac Mama in My 30s

      By Scott Adams · Posted

      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.