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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Can You Be A Celiac With No Family History?
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17 posts in this topic

My parents don't know anyone in our family that has had celiac, that we know of. Is it possible for it to just randomly start with me? It has to start somewhere, right?

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Well yes and no. You had to get the genes from your biologial parents but you could be the first person to manifest the disease.

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To add to what Vincent said, there could be family members in the past who had it, but attributed the symptoms to something else. I believe that's the case in my family. While I am the first diagnosed Celiac, there are stomach problems and autoimmune diseases on my mom's side.

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Since Celiac has mistakenly been believed to be extremely rare, and is just now getting the recognition that it needs, many people went their entire lives undiagnosed... maybe had subtle symptoms or attributed their symptoms to something else entirely... So while you are the first in your family to be diagnosed (as am I) the likelihood that someone else had it is almost a sure bet. In my family they always made comments that "oh you just have the family stomach" they just accept that the symptoms are normal in the family and therefore don't even look for an answer. But I do not believe that it just started with me.

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Just to add to that I believe with better awareness more people will be diagnosed with the disease. I was diagnosed about 3 years ago, my mom and brother just recently

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My parents don't know anyone in our family that has had celiac, that we know of. Is it possible for it to just randomly start with me? It has to start somewhere, right?

Well, my DD (just turned 5) is Celiac and the more I read about it (the first I ever even heard of Celiac Disease was February/March of this year), the more I think I have it (and have most of my life). The more my Mother reads about it, the more SHE think she has it (and had it all her life). And the more she reads about it the more she thinks HER mother (now deceased) had it...

so what's been routinely written off as a bad stomach may actually have more substantial consequences than we thought.

I've booked myself an appt with my GP for next week to get tested, and my Mother's doing the same.

Interestingly, my MIL says that she and her mother were always notorious for their loud stomachs.

So I'd say there probably is/was something in your family history... just never diagnosed.

JMO

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1. 30% of the population has at least one gene, but only 1% of the population has active celiac disease, so it's totally possible for it to be genetically in your family tree, but no one to have actually had it in memory, even if diagnosis was perfect.

2. only 3% or so of celiacs are diagnosed, so there's a good chance that someone else in the family may have it but be undiagnosed.

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My parents don't know anyone in our family that has had celiac, that we know of. Is it possible for it to just randomly start with me? It has to start somewhere, right?

My hubbie was dx with celiac disease nearly 2 years ago.No-one else in his family has it.

Not one of his 5 siblings has any symptoms,and no-one with even an auto-immune disease!! :blink:

Maybe it skipped a couple of generations before it singled out my hubbie :unsure:

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No one in my family has ever been diagnosed as having Celiac or gluten intolerance, but quite a few people have had "stomach problems" their whole lives. My mom gets bloated after eating too much bread and has occational "IBS symptoms". And she said her mom had stomach problems her whole life. So I'm sure people in my family had it, they just never knew.

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Thanks everyone!

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The issue isn't that no one else has celiac in the family, but that you have it and there's a greater possibility for your family now to develop it themselves (believe it's 1 in 22 chance for family members). My husband so far is only one with celiac, but I am sure his father (deceased) had it unknowingly and his younger sister has it (is in denial about symptoms).

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The issue isn't that no one else has celiac in the family, but that you have it and there's a greater possibility for your family now to develop it themselves (believe it's 1 in 22 chance for family members). My husband so far is only one with celiac, but I am sure his father (deceased) had it unknowingly and his younger sister has it (is in denial about symptoms).

I believe the current statistics say that 1 in 10 immediate family members are likely to have celiac too. This is the statistic I keep encountering but I believe it is for all diagnosed celiacs in recent years. I would be interested in the statistical breakdown of the likelihood of immediate relatives by ethnicity. Celiac sprue is much more common in people of Celtic heritage.

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I believe the current statistics say that 1 in 10 immediate family members are likely to have celiac too. This is the statistic I keep encountering but I believe it is for all diagnosed celiacs in recent years. I would be interested in the statistical breakdown of the likelihood of immediate relatives by ethnicity. Celiac sprue is much more common in people of Celtic heritage.

I have not seen the 1 in 10 number in a peer reviewed, published study, but I have seen the 1 in 22 number for first degree relatives in such a study. Do you have a reference for the 1 in 10 number?

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the stats that i have seen said 1 in 10 of first degree relatives and 1 in 30 of second degree relatives----but i can't tell you where i read it.

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I am the only one in my fam. with celiac too! everyone got tested, even my grandparents. aunts, uncles, everyone and I am still the only one! I wonder how I got it. :lol: Kinda random but hey, i thought maybe, just maybe it would help to know that you arent the only one.

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I think way more people have it than even the best Celiac docs think and in ten years it won't be a big deal to eat out and buy gluten-free food because so many people will have it. Then we'll have better gluten-free food available and lower prices. And then we'll all be whining that we are that special anymore because it will seem like everyone has it! LOL!

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On 6/8/2006 at 4:54 PM, floridanative said:

I think way more people have it than even the best Celiac docs think and in ten years it won't be a big deal to eat out and buy gluten-free food because so many people will have it. Then we'll have better gluten-free food available and lower prices. And then we'll all be whining that we are that special anymore because it will seem like everyone has it! LOL!

This is a really old discussion, but his particular post jumped out at me since it was written in 2006.  And, here it is 10 years later, and this man with one post hit the nail on the head. 

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