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What Comes First?


bmzob

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bmzob Apprentice

so i was diagnosed with idiopathic autoimmune chronic hepatitis when i was seven, ulceritive colitis when i was ten, and celiacs just recently at age 21. i don't get the classic symtoms if any for celiacs.

so my question is did i have celiacs first or the autoimmune disorder?


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Nancym Enthusiast

Hard to tell. The order of diagnosis really doesn't have anything to do with the onset, and some of these diseases take a long time to get diagnosed, unfortunately.

trents Grand Master

It's the classic chicken and the egg question. Actually, what led to my celiac dx was elevated liver enzymes. I had them for 13 years. Went to my family doc several times with this concern. He tested me for all the known hepatitis strains, A, B, C and of course, they were all negative. He didn't have a clue. I finally went to a gastroenterologist three yeares ago and he tested me right away for celiac disease and that was the culprit. Since going gluten-free, my liver enzymes have normalized but all those years of inflamation took a toal. My albumin and total serum protein are chronically low now, not dangerously low by any means, though. You are fortunate to have been diagnosed at a young age when your recouperative powers are strong. I am now 55.

Steve

LKelly8 Rookie

I and my family have mutiple autoimmune disorders. It's genetic, you've had the genes for these disorders since conception. :blink:When (and if) these diseases choose to strike is dependent in part on both nature and nuture, your genes and the effect of your environment on you.

2kids4me Contributor

ditto to LKelly8 post

The autoimmune diseases all appeared in different order in all 3 of us...and in different combinations. Genetic susceptibility was there...

In order of appearance:

me [mom] : diabetes, hypothyroidism, pernicious anemia

daughter: hypothyroidism, kawasaki (believed to be autoimmune), celiac

son: diabetes, celiac

bmzob Apprentice
I and my family have mutiple autoimmune disorders. It's genetic, you've had the genes for these disorders since conception. :blink:When (and if) these diseases choose to strike is dependent in part on both nature and nuture, your genes and the effect of your environment on you.

actually my hepatitis is not genetic, it's not contagious, it cannot be inherited. they have no idea where it comes from. But I've read that celiacs can cause autoimmune hepatitis. I was on prednisone for 10years, so it suppressed my immune system, if i had celiacs at that time, prednisone would have masked the symptoms. But I've been off of the prednisone for 5years now and all of my liver functions have been normal all that time, if I had celiacs and it was the cause of my hepatitis wouldn't my liver functions have gone wacky once off the prednisone?

LKelly8 Rookie
actually my hepatitis is not genetic, it's not contagious, it cannot be inherited. they have no idea where it comes from. But I've read that celiacs can cause autoimmune hepatitis. I was on prednisone for 10years, so it suppressed my immune system, if i had celiacs at that time, prednisone would have masked the symptoms. But I've been off of the prednisone for 5years now and all of my liver functions have been normal all that time, if I had celiacs and it was the cause of my hepatitis wouldn't my liver functions have gone wacky once off the prednisone?

Celiac cannot cause autoimmune hepatitis. It may be related genetically, I don't know.

It is my understanding that Idiopathic Autoimmune Chronic Active Hepatitis is - at least in part - genetic.

"The cause of IACAH is unknown, therefore the designation idiopathic. The possibility that a viral agent may trigger the onset of autoimmune chronic active hepatitis has been extensively considered, although at present there are no strongly supported candidate agents. The apparent predisposition of individuals with HLA-B8 and DR3 haplotypes to develop IACAH suggests that genetically conditioned abnormalities may have a role in pathogenesis."

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BRUMI1968 Collaborator
Celiac cannot cause autoimmune hepatitis. It may be related genetically, I don't know.

It is my understanding that Idiopathic Autoimmune Chronic Active Hepatitis is - at least in part - genetic.

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I don't think we can confidently say what Celiac can and cannot do. The word Idiopathic means: we don't know why the heck this is happening. There are many theories: too many vaccinations, a gene we haven't found yet, stress, etc.

Western medicine is very good at dianosis; they are miserable at systemic medicine - how could Celiac not contribute, at least, to your other health problems since it has meant that you're undernourished. It has meant that you have chronic inflammation (whether or not you have symptoms) and that releases chemicals in our bodies. It means that energy, that most precious of things, is being internally spent on trying to right a wrong. All of these things will make you more likely to be defeated by other nastinesses lurking on the pollution, in the gene pool, in your job, whatever.

trents Grand Master

Please keep in mind that hepatitis is really a general term referring to liver inflamation, whatever the cause. It doesn't have to be caused by an infectious agent such as a virus or a bacteria, though it is commonly used that way by most people.

There are plenty of medical experts that would argue against the statement that Celiac disease does not cause hepatitis. Actually, almost 20% of celiacs have elevated liver enzymes before dx and going gluten-free. The nature of the connection is unknown but the best guesses are that it has to do with poor nutrient absorbption or the leaky gut syndrome. The leaky gut syndrome makes sense to me in that the compromised mucosa would constantly allow toxins to get into the blood stream that then must be filtered by the liver.

Steve

Guest ~jules~

Hmm....strange that this came up. I'm having a liver biopsy tuesday. My bloodwork came back showing possible autoimmune hepatitis......You know at this point, I am so tired of being poked, prodded, and thinking thought upon thought, analyzing over and over again, I just want to find out whats wrong with me, treat it and get on with it! ARG <_<

LKelly8 Rookie

I can say, with confidence, that celiac disease does not cause Idiopathic Autoimmune Chronic Active Hepatitis. Ooo, look! I said it again! :D

If you're sick will active celiac disease make you sicker? Yes! Celiac will make you sick even if you were previously healthy.

Is hepatitis a general term referring to multiple diseases and disorders? Yes.

  • 1 month later...
Cranky Newbie

I also have the same combination, ulcerative colitis, Coeliac disease and autoimmune hepatitis. The specialist thought that was unusual, maybe not so. I had Coeliac disease diagnosed around 2 years of age (went off the diet in my late teens as I was diagnosed as not having celiac disease, Ulcerative Colitis in my late 20's and autoimmune hepatitis in my 40's diagnosed when I went back on the diet (I was asymptomatic, only had the test by chance). My theory is this is related to stress. The last 2 diseases hit at times of extreme stress, maybe activating my rogue immune system. Because I was asymptomatic, sticking to the celiac disease diet is hard as I don't feel any different if I eat gluten.

I am now on long term immunosuppressants. 3 autoimmune diseases is plenty.

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    • trents
      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
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