Celiac In The Family Tree

[CMCM]

A lot of the literature I've read about celiac disease says a first degree relative of a person with celiac disease has about a 10% chance of it being passed on. I wonder where they get that figure? We started testing in my family, and look what we came up with:

My mother: Diagnosed celiac in about 1966. When I got gene tested 2 years ago and found I have the celiac gene, my mom got gene tested too, and we learned she has TWO celiac genes. So that means all 4 of her children have at least one gene.

My children: Both got my celiac gene, plus a gluten sensitive gene from my husband.

my brother: Both his kids got his celiac gene, PLUS....in testing they learned his son has TWO celiac genes, which means my sister-in-law also had a celiac gene and passed it on...big surprise!!

Since my mother had 2 celiac genes, that means both her parents had one.

So it looks to me like your chance of getting the gene is pretty darn strong, certainly greater than 10%. I don't know about the dominant-recessive theory of things, but it sure looks like the celiac gene is pretty dominant.

I'd be curious to know how many moms who have the celiac gene did NOT pass it down to their kids.

[tarnalberry]

the odds that are quoted aren't that you pass down the gene, but rather that you develop celiac. as there are many more people with the gene than activated celiac disease, at this point, we can't really correlate the two.

[Guest j_mommy]

I agree...I'm sure many have the gene that don't have celiac.

My grandmother has all sypmtoms but no celiac, same with Dad...why they don't do teh diet is beyond me but oh well.

[Gemini]

A lot of the literature I've read about celiac disease says a first degree relative of a person with celiac disease has about a 10% chance of it being passed on. I wonder where they get that figure? We started testing in my family, and look what we came up with:

My mother: Diagnosed celiac in about 1966. When I got gene tested 2 years ago and found I have the celiac gene, my mom got gene tested too, and we learned she has TWO celiac genes. So that means all 4 of her children have at least one gene.

My children: Both got my celiac gene, plus a gluten sensitive gene from my husband.

my brother: Both his kids got his celiac gene, PLUS....in testing they learned his son has TWO celiac genes, which means my sister-in-law also had a celiac gene and passed it on...big surprise!!

Since my mother had 2 celiac genes, that means both her parents had one.

So it looks to me like your chance of getting the gene is pretty darn strong, certainly greater than 10%. I don't know about the dominant-recessive theory of things, but it sure looks like the celiac gene is pretty dominant.

I'd be curious to know how many moms who have the celiac gene did NOT pass it down to their kids.

I did the gene testing after being diagnosed with celiac disease through bloodwork. I presented with classic Celiac. The results were that I have a double DQ2, which means mother and father possess at least one each.....not surprising as they are Irish/ English.

I have 3 other siblings and they all have autoimmune diseases linked to celiac disease and are symptomatic, with varying degrees of symptoms between them. None have the Gi issues to the extent I did, except my brother. Both my mother and father have flaming symptoms and absolutely will not accept they have it also. One sister is semi-gluten-free and really notices now what happens when she cheats as she's becoming more sensitive. Brother and sister #2 are wearing blinders and don't want to hear this is most likely the cause of their health problems.

I truly think that the medical profession has it all wrong and all those folks sitting in the GI's office, downing copious amounts of meds for their acid reflux and gastic problems most likely have some kind of issue with gluten. The trouble is, most would never agree to go gluten-free and give up the donuts so doctors will continue to be busy treating the symptoms and telling them they have IBS or some such nonsense.

I have no children myself but all my siblings do and guess what? At least 50% of these kids have symptoms of celiac disease but have not had these issues addressed. The 10% figure is a joke.

[Generic]

I couldn't agree more. On my dad's side of the family, my great grandma had celiac, and I'm 100% my grandma had it (she developed stomach cancer). My dad also presents with the classic stomach problems and numerous other auto immune diseases. On my mom's side, my grandfather's cousin has celiac and so does my mom. I'm pretty sure my sister has is and so does her kids.

[pixiegirl]

Yes I think a whole lot more research on Celiac is sorely needed. I have celiac (with double DQ2) and so does my mom (who is back to eating gluten as her doctor insists that she has IBS and that at her "age" its not necessary to be totally gluten-free and she chooses to believe him because she can't "live" without bread). My dad died of a stroke 6 years ago but for at least 20+ years suffered from GI issues. My brother has all sorts of GI issues as well. And my daughter tested "slightly positive" for Celiac. I'm the only one who is gluten-free. My daughter is trying to go gluten-free right now but fails about every 3rd day. She is 16 and has life threatening allergy to peanuts and tree nuts and hates that she now has something else to make her different. I do feel for her, its harder as a teen. She goes to the movies at the mall with her bf and girlfriends and they want to get dinner after. There is not one restaurant at our little local crummy mall that she can eat at. Sigh.

Susan

[wowzer]

I agree that the percent should be higher. I remember seeing 20% chance of having celiac disease if a family member has it. I do believe that it could be on both my mother and father's side. I have a diagnosed sister with celiac disease. I believe I have DH. I have been gluten free for a year now.