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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
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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