Advice On Getting Family Members To Get Tested

[melikamaui]

I know that it's impossible to make someone do what they don't want to do, but I thought maybe some of you might have advice in regards to getting reluctant family members to test for celiac disease.

I'm pretty certain I can pin point how celiac disease came down through the last 3 generations. Both of my sons have it, and I know that I got it from my mom (though she won't test). I believe that she got it from her dad who died of intestinal cancer at only 52, as did his father at the exact same age. My mom has 12 brothers and sisters and all of them have children, some have grandchildren too. I want to encourage all of them to get tested. If my mom has it then the likelihood that at least a few of her brothers and sisters have it too.

What have you said to help encourage family members to get tested? We have a family website and I am going to post there where everyone can read it. I'm hoping to get through to at least a few of them. Any advice?

Thanks!

Melika

[rosetapper23]

From personal experience, all you can really do is inform people and encourage them to get tested. When I was diagnosed, I called all of my mother's relatives (uncles, aunts, and cousins). Several of them recognized the symptoms and said, "Yep, sounds like that's what I've got!" One of them is even a nurse....but not a single one of them ended up getting tested. Nor did they end of eating a gluten-free diet, even though some of them felt quite ill. Of my siblings, only one brother got tested, and he thinks that's that. He doesn't seem to understand that he should be tested every year, since I have it, our mother has it, and both of my children have it. My sister refused to get tested, but now that one of her daughters is an adult, she voluntarily went gluten free because she believes she has it. It's almost as though she's afraid to divulge to her mother that she's been ill for a long time. Everyone just has their heads stuck in the sand!

So, good luck to you! You can lead a horse to water, but....

[FancyKat]

Yeah I Had to figure it out myself. My mom and most of her family died early. My son is showing symptoms and my brother I think.

Son will not get tested as the doc told him it is something else. For me it is in my head as I figured it out myself.

I do better and I have more than gluten to watch out for. I found I can't do other things too such as tea.

I told him and it will be up to him to get tested. I think that is why he cried all the time as a baby.

Back then no one knew of it.

I avoided some of the issues because I would go low carb. I still get sick a lot as well now not eating gluten. It took me a long time of getting so so I got the damage from it.

Barb

  On 7/18/2011 at 3:15 AM, rosetapper23 said:

From personal experience, all you can really do is inform people and encourage them to get tested. When I was diagnosed, I called all of my mother's relatives (uncles, aunts, and cousins). Several of them recognized the symptoms and said, "Yep, sounds like that's what I've got!" One of them is even a nurse....but not a single one of them ended up getting tested. Nor did they end of eating a gluten-free diet, even though some of them felt quite ill. Of my siblings, only one brother got tested, and he thinks that's that. He doesn't seem to understand that he should be tested every year, since I have it, our mother has it, and both of my children have it. My sister refused to get tested, but now that one of her daughters is an adult, she voluntarily went gluten free because she believes she has it. It's almost as though she's afraid to divulge to her mother that she's been ill for a long time. Everyone just has their heads stuck in the sand!

So, good luck to you! You can lead a horse to water, but....

[melikamaui]

  On 7/18/2011 at 3:15 AM, rosetapper23 said:

From personal experience, all you can really do is inform people and encourage them to get tested. When I was diagnosed, I called all of my mother's relatives (uncles, aunts, and cousins). Several of them recognized the symptoms and said, "Yep, sounds like that's what I've got!" One of them is even a nurse....but not a single one of them ended up getting tested. Nor did they end of eating a gluten-free diet, even though some of them felt quite ill. Of my siblings, only one brother got tested, and he thinks that's that. He doesn't seem to understand that he should be tested every year, since I have it, our mother has it, and both of my children have it. My sister refused to get tested, but now that one of her daughters is an adult, she voluntarily went gluten free because she believes she has it. It's almost as though she's afraid to divulge to her mother that she's been ill for a long time. Everyone just has their heads stuck in the sand!

So, good luck to you! You can lead a horse to water, but....

That's exactly what I'm afraid will happen. And it's basically what my mom already said. "Oh honey, I've been sick all my life. They can never figure it out. It's just who I am." I want to shout at her sometimes. I KNOW this could help her. I even think it could make her live longer. Even if she doesn't want to get tested, just trying going gluten-free for awhile and see if she feels better. But she won't do it. I'm going to have to give up at some point. It's her life, I can't live it for her.

[Bubba's Mom]

I think my husband has it..he has so many of the symptoms. His sister has poor health too, and his mother had a lot of the symptoms and a couple other auto-immune diseases. He has Hashimoto's, early onset osteo A, cardio vascular disease, gerd, restless leg syndrome, mood swings, pain in his legs, and now type 2 Diabetes, along with many others. He got mad when I suggested he be tested!

I noticed over the weekend he tried to avoid gluten, even eating a rice cake with his supper instead of bread and butter. Going gluten-free for two days won't really do him any good..but at least I've "planted the seed" of possibility?

None of my family members will get tested. They don't want to know!

I had colon cancer at the age of 46. If I had waited until age 50, for a colonoscopy I probably wouldn't be here? I was advised to tell my siblings they should be checked and it fell on deaf ears. My 56 year old Sister still hasn't had one and she has digestive "issues".

I think all we can do is tell them? It's up to them to take action. In my case..I'm the first in my family to be diagnosed. I never thought it was a posibilty. With your family members knowing, they will think to ask the docs about it if they get sick? It could save them from years of getting mis-diagnosed?