Where Did The Celiac Come From?

[terob254]

I was diagnosed 2 years ago with Celiac after being misdiagnosed for many years. I had gall bladder surgery with complications and was told that triggered the Celiac. My gastro doctor said it was the worst case of Celiac he had seen. All of my villi (sp?) were completely flat, not one left standing. Both of my parents have now had the blood test for Celiac and both were negative. Two of my children have tested negative. My brother and sister have yet to be tested. In my extended family (aunts, uncles, cousins), no one has had any symptoms, so no tests for any of them. If both of my parents have tested negative, where did the gene and disease come from? I would appreciate a response from anyone who could shed some light on this. And thank you in advance for your help.

[psawyer]

Not everyone who carries the genetic predisposition actually develops celiac disease. I don't know the exact numbers, but the majority of people with the gene never develop the disease.

We are born with the genes, but it seems that a trigger of some kind is needed to "activate" the genes and begin the autoimmune response. The trigger is typically something that puts stress on the body. Surgery, childbirth, infectious disease and external stress such as divorce or loss of a job have all been reported.

Were your parents tested for the genes, or just for active autoimmune activity? The standard celiac test panel does not include genetic tests, only antibody testing.

[cruelshoes]

Did your parents have the genetic testing done? Some 30% of people in possess the genetics most common for celiacs. Very few go on to develop the disease. There is not enough information in your post to know where the disease came from in your case. If your family has not had the genetic testing, some or all of them may have the celiac-associated genes, but not be celiac.

[lizard00]

My doctor did the genetic test on me, and we discovered that I carried a double copy of the gene most commonly associated with celiac disease. I, too, wondered why my mom (I'm actually wondering if my dad is just undiagnosed) has never developed it. She had 4 babies, has had 2 surgeries, and more than her fair share of stress. I think that if the gene were to be triggered for her, it would have been by now.

My personal theory, and remember, it is just that, is that perhaps she just carries one copy of the gene and therefore had less risk of it being triggered, thus she never developed celiac disease. Since I carry two copies, if one didn't get flipped on, there was still the other one. Just my thoughts...

[ThatlldoGyp]

I was diagnosed 2 years ago with Celiac after being misdiagnosed for many years. I had gall bladder surgery with complications and was told that triggered the Celiac. My gastro doctor said it was the worst case of Celiac he had seen. All of my villi (sp?) were completely flat, not one left standing. Both of my parents have now had the blood test for Celiac and both were negative. Two of my children have tested negative. My brother and sister have yet to be tested. In my extended family (aunts, uncles, cousins), no one has had any symptoms, so no tests for any of them. If both of my parents have tested negative, where did the gene and disease come from? I would appreciate a response from anyone who could shed some light on this. And thank you in advance for your help.

It is genetic, just like any disease you have to have the right matching set from mom and dad to have the 'right environment' for the disease to develop.

You do realize that even though the majority of your family has tested negative they have to continue being tested for the rest of their lives if they just do the blood screening testing? Just because they are negative NOW doesn't mean that celiac isn't lurking and can trigger at any time...

Personally, since I am a celiac and my husband is of european descent (scotch/ irish) we have decided to get the genetic testing for my son as to rule that in or out as a possibilty once and for all for him.

[terob254]

Not everyone who carries the genetic predisposition actually develops celiac disease. I don't know the exact numbers, but the majority of people with the gene never develop the disease.

We are born with the genes, but it seems that a trigger of some kind is needed to "activate" the genes and begin the autoimmune response. The trigger is typically something that puts stress on the body. Surgery, childbirth, infectious disease and external stress such as divorce or loss of a job have all been reported.

Were your parents tested for the genes, or just for active autoimmune activity? The standard celiac test panel does not include genetic tests, only antibody testing.

[terob254]

Not everyone who carries the genetic predisposition actually develops celiac disease. I don't know the exact numbers, but the majority of people with the gene never develop the disease.

We are born with the genes, but it seems that a trigger of some kind is needed to "activate" the genes and begin the autoimmune response. The trigger is typically something that puts stress on the body. Surgery, childbirth, infectious disease and external stress such as divorce or loss of a job have all been reported.

Were your parents tested for the genes, or just for active autoimmune activity? The standard celiac test panel does not include genetic tests, only antibody testing.

[terob254]

Thank you everyone for your information. I don't think gene testing was done. I will pass on the info to my parents and have my kids tested for the genes as well. I'm still learning so much about this disease. It's been a real learning experience for me and my doctor.

[UnhappyCoeliac]

Hell?

[ThePhilly's]

Not everyone who carries the genetic predisposition actually develops celiac disease. I don't know the exact numbers, but the majority of people with the gene never develop the disease.

We are born with the genes, but it seems that a trigger of some kind is needed to "activate" the genes and begin the autoimmune response. The trigger is typically something that puts stress on the body. Surgery, childbirth, infectious disease and external stress such as divorce or loss of a job have all been reported.

Were your parents tested for the genes, or just for active autoimmune activity? The standard celiac test panel does not include genetic tests, only antibody testing.

I had bloodtests done because my son tested positive for celiac (he had classic celiac symptoms) and I tested positive, but do not have symptoms. If the bloodtests are positive, does that mean that it's "active" or am I a "carrier?" Not sure if that's a dumb question, but I'm still learning and with the fact that I have no symptoms it's harder to accept.

[lizard00]

I had bloodtests done because my son tested positive for celiac (he had classic celiac symptoms) and I tested positive, but do not have symptoms. If the bloodtests are positive, does that mean that it's "active" or am I a "carrier?" Not sure if that's a dumb question, but I'm still learning and with the fact that I have no symptoms it's harder to accept.

If you tested positive through the celiac panel bloodtests, that would indicate that you have active celiac disease. Some people have very high test results, but very little or no symptoms; "silent celiac disease."

Whether you are symptomatic or not, you should be gluten-free as well.

[caek-is-a-lie]

Whether you are symptomatic or not, you should be gluten-free as well.

Yes, I agree, because the disease doesn't just attack your intestines and increase your chance of certain cancers...it can attack other organs like your skin or brain. I'm pretty sure my Narcolepsy and gluten intolerance are inseparably linked...especially since when I eat gluten I get bad neurological symptoms. If you tested positive for the antibodies, I'd suggest not eating gluten ever again! Because some damage from the antibodies is irreversible.

[ThePhilly's]

Thanks for your help! I have gone gluten-free since the tests came back, but thought I'd ask!