Getting Relatives Tested

[wozzy]

I was at a wedding this weekend and I hardly ever see my mom's side of my family. When I was there, I found out that my mom's sister has Celiac Disease! This is quite a shock because my dad has it as well, and we thought it just came from him. But it could be from my mom too. My mom's mother died really young (when my mom was 16) of lymphoma, which could have been caused by celiac disease.

Anyway, everyone in my family is stubborn. My dad's sisters won't get tested even though they've always had GI issues. My grandma won't get tested. My mom won't get tested even after finding out her sister has it. My mom's brother won't get tested. No one will!

Do any of you have ways of urging your relatives to get tested? Do you send them information about it? I don't know if I should just let it go or try to make them get tested.

I'm also still in shock about my aunt. It seems like it's much more common than we even think!

Thanks,

Kelly

[Ursa Major]

You know, Kelly, this is an ongoing concern a lot of us have. It is a rare, joyous occasion, when a relative actually listens, and gets tested. I haven't been able to get any of my siblings to get tested, either, even though I am convinced most of them have celiac disease as well.

The same goes for my grownup kids. I wished I could force them, as I'd rather not have my six brothers and my sister die of cancer, like my mother (who died at the age of 66 of liver cancer, and had all the symptoms I have had all her life), or my children, for that matter.

It's very difficult to see the denial our own relatives are in, when we know that they have symptoms indicative of celiac disease. Sometimes I feel like screaming at my brothers and sister, telling them how stupid it is to stick their heads in the sand until it is too late. But it would do no good, and might alienate them. In which case they really wouldn't listen to me any more, as they wouldn't be talking to me!

So, while I completely understand what you're going through, I am afraid that just letting them know gently that you think they may have a problem with celiac disease and ought to get tested, and maybe giving them a brochure (which they may or may not read) is all you can do.

[Guest dreams25]

Its hard sometimes as people think its all in your head ... i'm only new at this and already have found so many think your nuts ..if you follow the diet ridgly.

[par18]

  wozzy said:

I was at a wedding this weekend and I hardly ever see my mom's side of my family. When I was there, I found out that my mom's sister has Celiac Disease! This is quite a shock because my dad has it as well, and we thought it just came from him. But it could be from my mom too. My mom's mother died really young (when my mom was 16) of lymphoma, which could have been caused by celiac disease.

Anyway, everyone in my family is stubborn. My dad's sisters won't get tested even though they've always had GI issues. My grandma won't get tested. My mom won't get tested even after finding out her sister has it. My mom's brother won't get tested. No one will!

Do any of you have ways of urging your relatives to get tested? Do you send them information about it? I don't know if I should just let it go or try to make them get tested.

I'm also still in shock about my aunt. It seems like it's much more common than we even think!

Thanks,

Kelly

I actually got my mother to get a blood test for the gene. She is 82 and is in pretty good health. She has one of the genes. I think she was a little surprised but insists she has had no problems. As far a brothers and sisters go I really don't have an answer. The fact that they know it exists in the family is probably enough because if symptoms ever do arise they could try the diet first. I've kinda been down this road before and most just don't want to hear it. The best thing those of us with the disease can do is set a good example on the diet so they will know that it is not the end of the world if they have to do it one day.

Tom

[wolfie]

  wozzy said:

I was at a wedding this weekend and I hardly ever see my mom's side of my family. When I was there, I found out that my mom's sister has Celiac Disease! This is quite a shock because my dad has it as well, and we thought it just came from him. But it could be from my mom too. My mom's mother died really young (when my mom was 16) of lymphoma, which could have been caused by celiac disease.

Anyway, everyone in my family is stubborn. My dad's sisters won't get tested even though they've always had GI issues. My grandma won't get tested. My mom won't get tested even after finding out her sister has it. My mom's brother won't get tested. No one will!

Do any of you have ways of urging your relatives to get tested? Do you send them information about it? I don't know if I should just let it go or try to make them get tested.

I'm also still in shock about my aunt. It seems like it's much more common than we even think!

Thanks,

Kelly

Hi Kelly!

I have had a hard time convincing relatives to be tested, too, even though they have symptoms. My Mom did get tested, but my Dad & Sister are choosing to bury their heads in the sand. I think that there is only so much you can do. Send the info, suggest testing and leave it at that.

I hope that they come around and get tested.

[floridanative]

I was thrilled when both my sister and Mother got tested at my request. Mother was sick for 18 years so I knew she had it as soon as I was dx'd. Mother has it but sister was negative. Her kids are who I'm worried about but my urging her to test them has put strain on our relationship which is already long distance. So I'm working on convincing my Mother to insist on getting the kids tested, at least the one with symptoms. I know how frustrated you are. I doubt we'll ever understand why people wouldn't want to know if there is a health issue that can be reversed by a diet, instead of waiting until the treatment is possibly chemotherapy.

[steveindenver]

My mom said she didn't need to get tested as, "My doctor said I don't have any of the signs". I told her that yes, indeed, she DOES have many signs. Chronic constipation. Fatigue. Depression. Bloating. And she said, "Oh, I thought the symptom was chronic 'd'". Not so much, mom. So, I think I've finally convinced her to get bloodwork done (I mean, it's a simple blood test, how hard can it be?). My dad's side of the family is mostly gone, and my mom has never been regular in my lifetime, and I know I get this from her. My gastroentorologist asks me at each appt, "Has your immediate family been checked?". I tell him, no, but they're big boys and girls and if they choose not to, that's their life. It's frustrating, as my mom hucks me to get a chest x-ray every year (my dad died from smoking/lung cancer) and she is paranoid of the 2nd hand smoke we breathed in for years, but a simple blood test, she won't do. Not much I can do but take care of myself at this stage then.

[mle-ii]

My guess is that most folks don't think they have it and don't get tested because they don't fit the "classic symptoms" for Celiac.

So what reasons are family memebers giving for not getting tested?

I returned my book to the library, but Dr Greene's book on Celiac disease had a good check list to provide family memembers, it had the classic and non classic symptoms.

[wozzy]

Yeah I know you can't force people to do anything. I think they won't do it because they think it's too hard (and my mom's family would never give up beer). *shrug* Oh well.

[Generic]

I know the frusterations all too well!! I am 200% positive my whole family has it. My mom recently discovered after doing an atkins diet to lose weight and then going back to wheat etc. that her mysterious rash returned (even thou I told her that is what it was).

She at least admits she has a reaction now. But the thing that pisses me off, is she is a nurse! She was the one that fought to get me diagnosed 18 years ago! She says well I don't get sick really so..... I'm like are you freaking kidding me? She of all people knows the kind of damage it can cause, even if it is silent damage.

I finally got so mad at her, that I told her if she continued to eat the gluten, that I wouldn't take care of her when her health goes to heck, because she is purposely damaging herself. After a couple of days of her thinking about that, she decided that she wanted my help in going gluten free and wants to transission my dad also.

My dad on the other hand...is a train wreck in itself. Growing up, he and I were always fighting over the 1 bathroom in the house. Little too coincidental to me that we would both get stomach problems at the same time. He has chronic D, on a daily basis. He eats imodium like tic tacs (he really should own stock in the co. LOL).

He now suffers from polymialgia and myositis (not sure if I spelled that right). Either way they are both auto immune diseases and are eating away his muscles. He refuses to acknowledge he has celiac and would rather kill himself off slowly. (his grandma was diagnosed with celiac at at the age of 80).

Then there is my sister and her kids, they have way too many problems to list! Between the same rash, D, weight loss and behavioral problems, it is just down right frustrating. Of course she is in denial also.

O.K. sorry...that was my venting.

[ElizabethN]

I've been dealing with this too and it is driving me all kinds of crazy. I finally have decided that I think some of the relatives do know they have it, they just don't want to find out "officially" because they aren't willing to change their diets. Italian dishes, bread, pies are all things that are a staple at family get togethers. I think my future strategy is to bring along gluten-free pies and bread, etc. to our dinners to start to show them all that it is possible to follow the diet without giving up all of your favorite foods.

I agree that it won't ever make sense to most of us when we have all learned how to take charge of our own health, and for whatever reason most people just don't seem willing to do that.

[sillyyak]

When I got diagnosed, my father got tested right away and was negative. My mother has refused to get diagnosed and, in fact, told me the other day that she does NOT identify me as someone who has celiac (pretty unsupportive, huh?). I think her refusal to get diagnosed has to do with her own anxieties about food, illness, change, etc. But, in the meantime, I am SOOO curious about her blood work! It feels like I am being tortured.

[FaithInScienceToo]

  Ursula said:

You know, Kelly, this is an ongoing concern a lot of us have. It is a rare, joyous occasion, when a relative actually listens, and gets tested. I haven't been able to get any of my siblings to get tested, either, even though I am convinced most of them have celiac disease as well.

How true!

One of my brothers has been diagnosed with chronic fatigue syndrome, and even went to a support group for it when he got terrible neurological symptoms...he now has a little boy with possible autism...and even HE won't get tested, nor will he get his boy tested...it is SO frustrating...Also, one of my sisters also told me she no longer wants to see or hear anymore info about Celiac Disease! My guess? because she just doesn't want to know if she or my niece might have it...

Oh well...that's life... I tried to tell them to get tested...

...haven't read the rest of this thread...just sharing....

Hope you can focus on yourself...you'll just have to set a good example and simply let them know you'll be available for answers if anyone wants to know anything more about it..

Best wishes, Gina

[FaithInScienceToo]

  sillyyak said:

My mother has refused to get diagnosed and, in fact, told me the other day that she does NOT identify me as someone who has celiac (pretty unsupportive, huh?). I think her refusal to get diagnosed has to do with her own anxieties about food, illness, change, etc. But, in the meantime, I am SOOO curious about her blood work! It feels like I am being tortured.

YEP! Pretty sad!

REALLY MAKES ME WANT TO SCREAM!

Ah - that felt better ;-0

Have a good eve, everyone!

[Guest ~jules~]

I told my mom about it and she also said she doesn't have any symptoms. Its like with all the complaining I've been doing for 2 years why does everyone remember only the D? I am going to pester each and every one of them until they go get tested. I told my brother on the phone the other day that I will become the crazy relative who harrasses you about your health until you do so you may as well go bro...lol I really hope they will come around, use a bit of intelligence, and go get tested.

[Kaycee]

  steveindenver said:

My mom said she didn't need to get tested as, "My doctor said I don't have any of the signs". I told her that yes, indeed, she DOES have many signs.

That sounds so like my mothers answer to me. But did she tell her doctor about her food allergies, excess wind (did I say that), diahroea, particularly after eating out, forever needing an afternoon nap. etc etc. No she did not tell him, so he feels she has no symptoms, and no reason to test. I just don't know how to get through to her. I talk about my symptoms, and she says hers are similar, but won't admit to possibly having it.

Brothers and sisters they are the same, they just won't get checked. I had to drag two of my sons to get tested, but the older two are still going to get around to it.

What can we do, they are all adults.

Cathy

[wozzy]

It also doesn't help that my dad cheats a lot (like...a lot) so he makes it seem like it's ok to eat gluten once in awhile. There's no use arguing with him over it because his crazy GI doc told him that it's ok to challenge it. He says that he gets sick even when he hasn't eaten gluten, so he thinks it's something else (even though I'm sure it's because he isn't healed).

[FaithInScienceToo]

ARGH!!!!!! Just needed to add 'a comic relief' scream....

People can be such nincompoops, pardon the poop pin

[lpellegr]

After seeing what I go through to eliminate or replace items in my diet, I'm pretty sure my family would rather suffer their symptoms than be healthy but have to be so careful about what they eat! They admire me for my fortitude of character and unbreakable resistance to gluten-y goodies, but they don't want to BE me.

[natalunia]

I've been telling my grandmother she should be tested for celiac disease for months now. I kept telling her to tell her doctor. She never would.

She was admitted to the hospital for back and leg pain of no obvious origin last week, so I told her nurse I had been diagnosed back in May and that they should run a celiac panel on her. She wrote down all the different tests in a celiac panel in my grandmother's chart, so maybe the doctor can order the tests, since Grandma won't bring it up. I haven't heard if we have results yet....

Grandma has diarrhea several times a week, but refuses to believe that could be it... She has to be in denial.

[elye]

I've learned that even suceeding in getting family members tested won't always work out. I finally convinced my dad to get the panel run in the spring as he has had symptoms since I was a kid. Their GP (whom my parents adore) ran the blood work, and his tests were, quote, "inconclusive/negative". I gently told my parents that there ARE false negatives, but then I was starting to feel powerless as I could see them rolling their eyes at me. "Why on earth would I take all these foods out of my diet, when the tests say I do not not have the disease?" Why, indeed....

[Ursa Major]

Emily, I am having the same problem. I was chatting with my sister on google chat yesterday, and asked her when she will get tested for celiac disease. She told me she did, and she definitely doesn't have it, since her bloowork came back negative. End of story. She has ALL the same symptoms I've had and more, she is never well. I asked her why she won't at least give the diet a try. She changed the subject. Since when chatting over the Internet or on the phone she can do that, and I'm across the ocean from her, there is nothing I can do.

My youngest daughter also had the panel run and came back negative, same problem. She has many celiac disease symptoms (or gluten intolerant, anyway), but refuses to try the diet, since the bloodwork 'proves' she can't have it. Period, end of story (sigh). It's so very disheartening.

And I can't even say those two didn't give in to my nagging and tried, because they did. They think they proved me wrong, and that is that.

[jerseyangel]

The only one of my first-degree relatives that was tested is my mom. She has a lot of symptoms that point directly to Celiac.

I printed out the Celiac Blood Panel, and the info from the NIH and sent them to her to bring into her doctor. She insisted on going to her GP--evidently didn't feel she wanted to "bother" with a GI. Anyway, turns out they only ran one test--not the whole panel (she read the results to me). Of course, she was negative on this one test, but she says she's negative, and is sticking to that.

I've told her that they didn't do the complete test, etc--she dosen't want to hear it.

She is getting more and more unsteady, due to her unexplained dizziness. She's been tested for everything else imaginable. With her history of miscarriage (3), unexplained anemia, constipation (to the point of needing surgery for hemmeroids), bruising, gas, moodiness, Antiphospholipid Syndrome, and hair loss--I feel she should at least give the gluten-free diet a trial.

I feel like such a darn hypocrite--here I am every day talking to people about this disease and giving advice, and my own family won't even be tested.

As an aside, the last time I talked to my mom, she was talking about her cousin who was diagnosed with MS last year. (The second person on her side to get this Dx) The cousin wanted to keep it quiet, and only told my aunt. My mom thought it was selfish--that if a person has a genetic disease, they should alert the whole family. (Her thoughts only)

After I picked my jaw up off the floor, I said--I HAVE a genetic disease, and I told everyone--but no one listed to me about getting tested anyway. Jeesh!

Da*ned if you do, and da*ned if you don't

[FaithInScienceToo]

"Da*ned if you do, and da*ned if you don't "

Ah - so you got to be born into one of 'those' families, too? What fun, huh?!

About the not telling others about potentially genetic health issues:

One of my younger bros got melanoma and hid it from the rest of the family for 2 years...said he didn't want to worry anyone...as soon as I told my Derm Doc that the answer to her, "Does anyone in your family have melanoma?" question was actually "Yes", she finally took off a suspicious area with 3 dark moles from my left wirst - turned out to be pre-melanoma...

I have since asked my brother to please not keep stuff from us...but, this 'hiding reality' from others for their own good runs in my family... dysfunctional, since family is supposed to be one's safe place to fall ....

Unfortunately, my family is a web...I now try to 'be in the family' without REALLY being 'in it'...

...best to focus on finding supportive friends when you come from my type of family.

"Yeah!" for this forum!

[elye]

Man...Well, at least with melanoma, the tests are very conclusive. The tests for celiac can be inaccurate (at least, a negative can be), so running the panel on someone who is loath to believe they have a chronic illness can do more harm than good. Now my dad REALLY believes that he's free and clear...when we really don't know that at all!