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Can You Be A Celiac With No Family History?


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15 replies to this topic

#1 emcmaster

 
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Posted 02 June 2006 - 05:01 AM

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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ELIZABETH

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#2 VydorScope

 
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Posted 02 June 2006 - 05:21 AM

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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#3 jerseyangel

 
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Posted 02 June 2006 - 05:25 AM

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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#4 Guest_nini_*

 
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Posted 02 June 2006 - 05:42 AM

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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#5 Rikki Tikki

 
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Posted 02 June 2006 - 06:04 AM

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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Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"
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but it can't be that because it's rare!"
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Not a medical professional just a silly celiac
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#6 mamatide

 
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Posted 02 June 2006 - 06:36 AM

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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#7 tarnalberry

 
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Posted 02 June 2006 - 07:21 AM

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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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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Bellevue, WA

#8 nikki-uk

 
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Posted 02 June 2006 - 08:40 AM

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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Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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#9 prinsessa

 
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Posted 02 June 2006 - 08:40 AM

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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#10 emcmaster

 
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Posted 02 June 2006 - 09:40 AM

Thanks everyone!
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ELIZABETH

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#11 debmidge

 
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Posted 03 June 2006 - 01:27 AM

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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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#12 drannesimmons

 
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Posted 04 June 2006 - 09:56 PM

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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#13 tarnalberry

 
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Posted 04 June 2006 - 10:24 PM

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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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#14 chrissy

 
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Posted 05 June 2006 - 10:22 PM

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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Christine

15 year old twins with celiac, diagnosed dec. 2005
11 year old daughter with celiac diagnosed dec 2005
17 year old son with celiac gene

#15 lightningfoot speakin words

 
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Posted 08 June 2006 - 03:50 PM

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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