AOKaye

I have recently been reading about a connection of autoimmune hepatitis to gluten intolerance. Has anyone tried changing diet as a result of AIH and was it successful at helping the fatigue?

[allnatural]

AOKaye,

I too found the connection the first time I pulled up AIH on the web.  I found I had many of the symptoms and went on the diet.  I had major health changes for the better.  When I went to the doctor and told him this he shrugged it off.  I know I need to get back on it and go from there, it's just hard with children and a husband.  There are tests they can do to rule out Celiacs disease, one is a blood test and the other is more invasive.  But, there is also a third which is done from your stool, but I have only found a website that does so, the cost isn't that bad.  If your interested I can try and find my notes.  If you look up Celiacs Disease you'll find all kinds of information.

[mandyjane46]

Well ..my son has coeliacs..he refuses to be tested because he has a terror of needles still(he is 14) but he has all the classic symptoms so we just put him on a gluten free diet(its in th family anyway..)
4 yrs later he hits the teenage years and gives up the diet outside the home.I only knew when he bcame unwell again..and he confessed...Only this time he developed jaundice as well and has had hepatitis for 5 months now.he is slowly improving now.I only discovered the link by accident yesterday so I am also interested to hear from others.They neverf could work out the cause of his hepatitis so put it down to a virus. Il be asking to be referred on to a gastroenterologist now for him....
keep me posted on news
MJ
MJ

[Jody515]

Just wondering since I have aih what is gluten intolerance?????

[mandyjane46]

That has quite a long answer.Im learning about this too and theres a brilliant site someone recommended on here(thank you whoever that was)

http:uk.youtube/watch?v=QR2LvQmoF1Y

It explains it all so well...
in a nutshell gluten is a protein fnd in rye,wheat and barley .An intolerance can develop an any time from birth onwards although symptoms can differ in children  compared to adults. In adults 30% of people have the gene for intolerance but only 1 in 100 develop the full blown intolerance (coeliacs disease..its 1 in 10 if its already in the family)
in adults it takes incredibly on average 11 years to get correctly diagnosed.
People often get diagnosed with colitis,IBS,ezxema,aneamia, depression or chronic fatigue.that gives you an idea of the symptoms you can get.. Coeliacs is an auto-immune disease so it can trigger other auto-immune responses.therefore people often get diagnosed with thyroiditis first (its got a special name that I cant remember ..), and sometimes with AIH (I understand this is rare).
Not all people with gluten intolerance get coeliacs...I understand.Its possible to react to it but not so severely.
Any how have a look at the site..its very very good.
MJ

[mandyjane46]

sorry  web site inaccurate(just checked)

http://uk.youtube/watch?v=QR2LvQmoF1Y

[Jody515]

Thank you for the info, I will check it out as quite a few in my family have autoimmune issues, including both of my daughters who have Graves Disease. My youngest daughter has been diagnosed with IBS & when she had a colonectomy I think it is called, she was told by the doctor that an autoimmune isssue was found but she can't remember what it was & is due to go bk next wk so will know then

[Here987]

This requires an awfully long answer.

First, let me say that those of us with one autoimmune disorder (such as AIH) are likely to have another. Celiac disease (CD) is the most common AD. Studies show it affects  about 1% of the population in the U.S. Few of those are diagnosed. I can't remember what proportion of those with AIH also have CD, but it's a significant figure.

Many doctors are ill-informed about CD, perhaps because until recently it was mistakenly considered a rare disease, and a pediatric disorder. Once, it was thought that only people who were extremely thin or who had diarrhea had CD. Now, it's known that this is untrue.

Celiac disease is an autoimmune disease that often is diagnosed because of gastrointestinal problems. However, only about half of those with CD have GI symptoms at the time of diagnosis.

CD can cause osteoporosis, mental confusion, strokes, etc. etc. etc. It can occur at any age. In children, it can cause delayed development.

CD basically is an autoimmune reaction to gluten, which is wheat, rye, barley, or most oats. Spelt and farro, and others I can't think of now, also are other types of wheat.

The only treatment is to avoid any intake, even a crumb, of gluten.

One can be diagnosed through a blood test and/or a biopsy. For these tests to be accurate, one must be eating a significant amount of gluten. There also are a couple of other kinds of tests, but getting into that would make this too lengthy.

Following a gluten-free (GF) diet is a life-time commitment. It does become much easier with time. It's not something to jump into without reason. Self-diagnosing is iffey, as it may take a very long time to see a change in outward symptoms. Some people heal quickly, some take months or years.

Sometimes, one has a false negative blood biopsy but a biopsy/endoscopy shows that you definitely have CD. That was my experience. I had no symptoms at all when I was diagnosed; my GI suspected CD because routine blood tests showed consistent nutritional deficiencies although I ate properly. I was about 60 at the time, having been diagnosed with AIH at 57.

For more information, go to a celiac disease site such as celiac.com.

Best wishes.

[mandyjane46]

wow..thanks for info..really useful and rang true for me.Can you clarify for me...a biopsy will definately show CD even if bloods dont? Is there any other way? We are in the early stages of testing for my 14 year old..so I want to know as much as possible,as it is an ill reckonised problem as you say..
Thanks
MJ

[Here987]

You ask if a biopsy will definitely show CD even if blood tests don't (assuming that one has CD).
A positive CD biopsy requires that the patient eat plenty of gluten for quite a while beforehand. I was an exception; I'd stopped eating gluten, but I still got a positive biopsy, because I hadn't yet healed. Once healing is complete (after quitting gluten), the biopsy doesn't work.
A false negative can occur if the surgeon happens to miss the affected areas. That doesn't happen often, I think. The biopsy usually shows the true situation, as long as one is eating gluten.
Commonly, the doctor does a second biopsy six months after one stops eating gluten, partly to confirm the diagnosis and partly to make sure one is healing properly.
The biopsy also checks for disorders of the GI tract that can be associated with CD.
Best wishes.

[mandyjane46]

Thanks.thats useful.Is it possible to have a negative blood test and go on to have a positive biopsy? My son was tested 3 weeks into a gluten diet and was negative...he was told it mught be as it needed to be 6 weeks weeks minimum...
Mj

[Here987]

Yes, you can have a negative CD blood test and a positive biopsy.  I did. I had a follow-up biopsy six months later that  further confirmed the first positive biopsy. I had no symptoms at the time.

Not all blood tests are equally sensitive. I think that the one most used now, the most accurate, is TGG. I can't remember what it stands for.

Celiac.com has an overview page that you'll find gives a good introduction to CD.

Keep in mind that CD can be causing silent damage without any symptoms. It can limit development in children. It can cause osteoporosis, strokes, memory loss, etc. In past years, people were told that it was a pediatric disease, and that children would "grow out of it". Now it's known that the symptoms may abate in children, but the disorder remains, continuing to cause damage.

CD can develop at any age, not just in childhood. It often turns up for the first time in the elderly. Stress can trigger any AD. And any untreated AD can trigger other ADs.