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Autoimmune Hepatitis And Celiac Disease

autoimmunefamily

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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?

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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.

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