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The Only One

Jo.R

By Jo.R
in Coping with Celiac Disease

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Jo.R Contributor
Jo.R
Posted

My mom is 1 of 11 kids, my dad 1 of 5, all whom have had kids, grand kids, and for some, great grandkids. I am the only Celiac, the only one with any stomch problems. I thought this stuff ran in families, or is that only sometimes?

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Kaycee Collaborator
Kaycee
Posted

Jo.

Coeliac does run in families. I am one of 8 children, my father one of 11 and my mum one of 3 children and all of those cousins etc of mine, and my four sons, and nobody but me has coeliac. It is probably no-one else except for about 4 people in my immediate family that have been tested and they all came back negative. But it is the others who have not been tested, who should get tested, but they are reluctant. I am so sure that if they were all tested, there will be at least one or two with this disease. But I can't force anybody to get tested as they are all adults. I am only thankful that I have got my answers and that I can take steps to ensure I continue to stay healthy.

Cathy

debmidge Rising Star
debmidge
Posted

You are the only one so far who is aware that they have celiac disease...

My husband's sister appears to have celiac disease but thinks that as long as she doesn't get tested and proven positive for it, she doesn't have celiac disease, yet she has a lot of symptoms of it.

happygirl Collaborator
happygirl
Posted

Jo:

Celiac is said to run in families because there is a genetic link to Celiac. There are two main genes that account for the majority of Celiacs. However, just having the gene doesn't mean that a person will have Celiac. About 30-40% of the American population has one or both of the genes, but only about 1 in 133 have Celiac (of which, 97% don't know it).

So, it may be that you are the only one who has it, or the only one who has it *now* (could be triggered in others later), or the only one who knows they have it.

For this reason, ALL first degree relatives should be tested for Celiac via bloodwork (according to celiac disease researchers and experts). First degree relatives have a higher chance of having Celiac than the average person.

Laura

Queen Serenity Newbie
Queen Serenity
Posted

Hi Jo,

Welcome to my world! ;) I am also the only one in a very large family who has celiac's. My mom is 1 out of 11, and my dad is 1 out of 6. I have a ton of cousins, nieces, nephews, etc... I was diagnosed 11 years ago. Since technology has grown, more and more doctors can make the proper diagnosis. I believe that people could not be diagnosed properly back in the day. So, it's likely that one of your ancestors carried celiac's. That's why we think that we are alone. But, more than likely, we were not!

Vicki

babygirl1234 Rookie
babygirl1234
Posted

i am the only 1 in my family that has celiac disease

Nancym Enthusiast
Nancym
Posted

I bet there are many more that have trouble with gluten but aren't even aware of it.

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TinkerbellSwt Collaborator
TinkerbellSwt
Posted

I am also a loner in the celiac world in my family. I am sure there are others, my father and brother both have stomach issues, they got the blood test and swear that is enough to prove they dont have it.. anyone else, just wont get tested. oh well, its their lives and their bodies that they may be doing damage to. I just cant convince them. So, for now me and my son are alone, and we arent sure if my son has it. He is 21 months so we keep him gluten free.

kbtoyssni Contributor
kbtoyssni
Posted

It could be that your mum's side has one gene, your dad's side another so you've got two making you more suseptible to developing it. It's also possible that other members of your family have it, but they've got some non-traditional symptoms and don't realize it. Anyone have allergies, reoccuring headaches, joint pain, unexplained sore throats, depression? All these could be celiac-related but often not caught.

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