celiac disease, Positive Asma Test, Liver Problems?

[Remi]

Hi,

I've been diagnosed with celiac disease since 2003. I have 1 daughter with celiac disease, one with inconclusive (but most likely) celiac disease and vitiligo and one son who has been gluten-free since birth. I have various autoimmune disorders on both sides of the family.

The last 6 months I've been training for a triathlon and have noticed many hypothyroid symptoms (fatigue, weight gain, low temp, low bp, difficulty concentrating, lack of motivation, low sex drive, retaining fluid, etc.). After much blood work I've had a postive ANA and a postive ASMA (which can mean autoimmune hepatitis). My thyroid bloodwork looks okay and my thyroid antibodies came back within the "normal" range. Sadly, I've been hoping it has been my thyroid, since I really don't want to have autoimmune hepatitis.

Does anyone have experience with a positive ASMA? Can it be positive with celiac disease? Does anyone have autoimmune hepatitis, as I've heard that some people with celiac disease also have this disorder? My liver enzymes were normal, which is confusing. Has anyone had a positive ASMA and thyroid problems?

Any advice or help is greatly appreciated! I'm very concerned about this aih thing, as I don't want to have it, nor do I want to be on prednisone for the rest of my life!

Thanks in advance!

[chrissy]

our ped gi tells me that celiac can cause liver changes----but i think that if you are gluten free, celiac should not be the cause of liver changes. i know that a positive ANA doesn't necessarily mean anything---people can have raised ANAs without having an autoimmune disease, but you obviously have one because you have celiac disease. my sister has autoimmune hepatitis and she also has PSC (another liver disease). i could ask her what she knows about the ASMA if you would like me to. my sister also is on thyroid meds.

[Remi]

Thanks for your response. Do you happen to know what kind of thyroid problems your sister has? I would be curious to know what her ASMA test level was and if she also had elevated liver levels and thyroid antibodies. If you could find out any information that would be great and very appreciated! They say that autoimmune hep. isn't uncommon, yet I don't know anyone who has it. I'm so concerned about this, since I don't want to be on pred. forever - I don't know how to cope with the weight gain and other adverse side effects =(

Thanks again for any help you can provide

Rachel

[Joie]

Hi Remi,

I was just recently diagnosed with celiac-sprue although I have been having a whole host of auto-immune related diseases most of life. I never really had intestional problems so nothing to warrant checking me out for celiac. I have auto-immune thyroid disease (Hashimoto's) and lupus and terrible skin rashes. When I was tested for celiac along with some other tests they said I had a positive ASME, but good liver panels. I had both a cat scan and a liver bioposy and now they tell me I have cirrohsis (auto-immune) and auto-immune hepatitis. I am very scared about it as I don't know how bad the cirrohsis is. More tests yet to come.

I have been reading that they are finding out that celiac can cause both conditions but in my case they don't know for sure yet. What my doctor explained to me is that gluten can trigger an immune system response which can cause inflammation in the liver and if gone un-treated long enough it can cause long-term liver problems. I have also read though by following a gluten free diet the damage can be reversed - completely or not I am not sure.

I feel much better being gluten free and the swelling in my liver has gone down. So for me at least I believe there is a connection between the two. It just seems hard to believe that a person's liver could be damaged by consuming something that is considered a staple in the American diet.

I wish you the best.

Joie

[Remi]

Joie,

Thanks for sharing your experience. It sounds like you have alot on your plate! I can understand your concern re. the cirrhosis - since you need your liver to live it is scary when it is unhealthy! Most people say they have a totally normal life with autoimmune hepatitis when it is treated.

When I was diagnosed with celiac disease I was relieved, since it meant all my symptoms were not in my head. It hasn't been difficult for me to deal with being gluten-free and it's not a big deal for me that I have celiac disease. However, for some reason, I'm very upset that I may be dealing with AIH. I know this is vain, but I'm concerned about the physical effects that are caused by taking prednisone for most of your life (weight gain, muscle loss, hair loss, moon face). The thought of having to take meds for life is also not pleasant. I'm also feeling sad for my children (7,5 and 2) that will most likely have to deal with more than one autoimmune disorder in their life. =(

I do realize that I am very fortunate that I could have greater problems in my life - but it can be scary and difficult at times when you are unsure of what to expect.

Thanks again and best wishes for you!

Rachel

[Joie]

Joie,

Thanks for sharing your experience. It sounds like you have alot on your plate! I can understand your concern re. the cirrhosis - since you need your liver to live it is scary when it is unhealthy! Most people say they have a totally normal life with autoimmune hepatitis when it is treated.

When I was diagnosed with celiac disease I was relieved, since it meant all my symptoms were not in my head. It hasn't been difficult for me to deal with being gluten-free and it's not a big deal for me that I have celiac disease. However, for some reason, I'm very upset that I may be dealing with AIH. I know this is vain, but I'm concerned about the physical effects that are caused by taking prednisone for most of your life (weight gain, muscle loss, hair loss, moon face). The thought of having to take meds for life is also not pleasant. I'm also feeling sad for my children (7,5 and 2) that will most likely have to deal with more than one autoimmune disorder in their life. =(

I do realize that I am very fortunate that I could have greater problems in my life - but it can be scary and difficult at times when you are unsure of what to expect.

Thanks again and best wishes for you!

Rachel

[Joie]

Hi Remi,

I can certainly understand how you feel regarding AIH, and I don't think it is vain at all. I will tell you a little bit more of my history if that will help you out. Firstly, I have gone down the path with prednisone to help control my lupus (SLE). I was also taking plaquenil and then I was put on azathiprine as my joint pain, rashes and general health was very compromised from the SLE. Needless to say, I just kept getting worse. Finally, I had developed the most horrible rash that could be imagined. It started on my back, spread to my legs and arms then to my scalp and the edges of my face. I went to a knowledgeable dermatologist (ha) who put me on more medications in the form of steroid ointments. My weight absolutely ballooned. I went to my regular dr. who looked at me and said "My goodness, your face is as round as the moon isn't it?" without any concern about the rash which just kept getting worse and worse. I saw my regular rheumatologist who took one look at me and said I had developed Cushings syndrome from too much prednisone and he weaned me off of the medication. I had this rash for 4 months, going from dr to dr and no satisfaction. I had even made the suggestion that maybe I had celiac and had DH. I was laughed at. I supposed I did not look very convincing, all bloated and red faced and covered with a rash. Anyway, at that point I got fed up and threw away my lupus meds and went on South Beach Diet. Felt absolutely fantastic and the rash cleared up within 2 weeks. In my naive way, I was eating gluten-free as I did not eat any bread or pasta but concentrated on rice. I lost 150 lbs in very short order.

That was 3 years ago. Anyway over the past year I have been consuming gluten and the same old symptoms came back. The rashes and joint pain. I switched drs and got one who tested me for celiac. I thank god that I switched drs as the one I had before was absolutely clueless. As I am finding out more about the AIH and cirrohsis I believe that the rash was a result of a combination of celiac and liver disease. As I have learned that liver disease often gets diagnosed as a result of itching and rashes. The other thing that I have read is that liver disease in conjuction with celiac can be treated with prednisone and azathiprine but it is often not very effective. The azathriprine can also cause adverse effects to liver and can cause some forms of cancer.

I have been referred to a University Hospital here in WI that is supposed to be very knowledgeable in the area of celiac and liver disease. I am supposed to be evaluated for a transplant even though I don't feel that my liver is in that bad of shape. But, it is something that is weighing out in my future. The thing that really angers me is that there are few people that understand how I feel, and even the local health food stores around here look at me like I am from Mars because I would like to purchase gluten-free personal care products, vitamins etc.

Things seem so clear now, it's like all of the puzzle pieces are falling into place. On my mother's side, my grandfather died from cirrohsis - the non-drinking variety as my mother says. I add that into the MS, type-1 diabetes, SLE, thyroid disease that are predominant with my mothers siblings and it is like, yes this is me.

So hopefully you will not have to go with the prednisone and your (possible) AIH can be controlled by diet. There are people in my support group that have said that they had liver problems initially and they are better now. So, there is hope.

I apologize for the long post, but hopefully what I have written can help you out.

Joie