Why Are Families So Stubborn?

[BelleVie]

A major reason that I went through a challenge to get testing done was so that I'd have some leverage backing my requests that my family members get tested for celiac. Lo and behold, a positive test result...and they still don't care a bit. This topic has been kicked around quite a bit on here, I know, but I'm just venting. I just can't, can't, can't understand why my mom and sister would not want to get tested? My sister has a young son. Wouldn't she want to know if he was at risk? 

 

It is SO FRUSTRATING! Especially knowing what I know now, and knowing that it is possible to feel good and healthy and to have energy and to wake up not feeling like death. My mom has spent years dealing with depression, stomach issues, anxiety, and often sleeps for large chunks of the day. But she still refuses to admit that anything could be wrong. It hurts when people that you love won't take the steps necessary to fight for their health. I think that some people just become completely detached from their bodies and stop listening. 

 

 

thank you for the venting platform! 

[BelleVie]

To add to this, I said my piece to my family. I wrote an email explaining everything and sent some links to the Uni of Chicago's info sheet website. I'm not going to be pushy or mention it ever again. But it makes me feel sad and angry to be brushed off, especially by my family. 

[Gemini]

I share your frustration completely because not one of my large family has been tested or, I should say, some have but the doctors only checked tTg...one test and then because that was negative, they proclaimed loudly that they don't have "THAT"!  I firmly believe that any illness which involves a change of food habits completely scares people and they don't want to have to deal with eating healthier and not being able to eat the same crap that the rest of America eats.  Change is very scary for some people.

 

I was really bothered by my family and their total ignoring of the situation when I was first diagnosed.  It felt like a personal attack but as time has gone by, I realize that they are afraid of any testing outcome because they ALL have symptoms and other AI diseases that are closely linked to Celiac.  They might have to admit that they actually have Celiac.  It no longer bothers me and I have come to accept that everyone has the right to do what they want. If they want to spend the rest of their lives with medical problems and running off to doctors all the time, so be it.  It's their life and their choice.  I hope in time you can come to accept this also because it will save you a lot of aggravation.  Yes, it sucks to not be listened to but most newly diagnosed Celiacs run into this and it seems to be the norm.  You can only hope they get sick enough that they seek help. 

[IrishHeart]

I can only echo LOUDLY what my friend Gemini has said. After my DX, I wrote a letter to my large extended family, even xeroxing info for those cousins without email and not one of them has been tested.I told them I have genes from both parents. They know this thing tried to kill me.

 

They are full of AI diseases ( thyroid, rheumatoid arthritis, Crohn's, diabetes, depression, anxiety, cancer, MS, asthma, etc...) but no one seems to think they are gluten intolerant They only think I have it. Just me. No one believes their GERD, "IBS" "fibro" and Gall bladder disease--is relevant. Head in the sand? Oh, you betcha!

 

 

 

 

 

 

My Mom (age 86) is the only one who went gluten-free with her doc's blessing and feels fantastic! she will outlive us all.

 

I cried over it, got mad, tried to write to them again, told my siblings one more time they should be tested and then finally gave up. Why? because it was making me sick. My hubs urged me to stop.

 

I have had the privilege of paying it forward and helping many celiacs and others get tested (I sent 8 people to my  GI doc and 7 of them have celiac disease, one has ulcerative colitis but is going gluten-free with some helpful tips ) and I can get total strangers on the internet to at least hear me out, and I have dozens of email pals from around the world who think I have given them solid advice, but not anyone in my family takes me seriously enough to get tested.

I could keep crying over it or I could just help the ones who are interested in saving their own lives.

Here is what it will take for them to "get it"--they will have to be as sick as I was,   I am afraid.

 

Tell your family, offer to help them when they want it ---and then, let it go, hon. Trust me on this one.

Take care of YOU right now!

[Marilyn R]

I e-mailed my family too.  Gave them the statistics of having 2 first degree relatives with celiac disease, etc. 

 

My brother is soooooo symptomatic.  He's one of the smartest people I know, but he's in complete denial.  I've mentioned it a twice when face to face, but I won't bring it up again.  You just let it go.  They'll find their own way.

[notme]

my brother has been to the doctor twice this month for 'unrelated' things - he watched me go through the whole winter without getting so much as a sniffle <i'm coming up on a year without catching EVERYTHING like i used to)  and he still denies he has the same problem - we have the same mom and dad, he proudly announces that we are like twins born 6 yrs apart.  just not that part.  he can't have 'THAT' - it would be too hard not to eat gluten.  

 

what?  

 

i feel ya, kid.  at least you got a dx and can move forward.  maybe they'll see positive changes in you and it will convince them.  buuuuut.....................  i doubt it    sorry to say  

[BelleVie]

Thanks everyone. Yeah, after my sister told me she was very happy for my changes being made with my "new disease" and glad that I was changing my diet, she said "please don't push it off on others like a religion." Ouch, that hurt. I know there are some people who can get pushy with diets, and I used to be a raw-foodist/vegan, and admit that I was once one of those folks. But I'm not anymore. The things that I said were expressed out of love and concern. 

 

Sigh. 

 

Well, I've said what I'll say on the issue, and now I'm letting it go. MOOOOOVING on. 

[w8in4dave]

I have told my sisters , one of my nieces is having alot of health issues, so I emailed her and she had said her mom told her about it. But then I e mailed my niece and gave her this link. She was actually shocked at how many symptoms she has had. I think some family members are just not about going to go get tested about something that they have no symptoms of. They just do not realize how awful all this can be! I know we just want to help. If family members had alot of horrid symptoms then it would be different!! They'd be happy to hear a way out of it!! As I did!! But if I was walking the earth with no symptoms and didn't understand or have a clue, then well I may turn my head also. I think my kids understand, on daughter gone Gluten free already, (she tested negetive) she was having alot of problems and gluten free is def. halping!! Thank goodness!! 

[BelleVie]

True, 4dave, but I also think that a lot of people actually have a lot of symptoms that aren't recognized AS symptoms because they have always been the norm. Before I began looking into gluten intolerance/celiac disease, my stomach always cramped severely after eating gluten heavy meals like pancakes or pasta. I had NO IDEA that it wasn't normal for your tummy to cramp up after eating until learning about it through celiac forums/informational websites. Life is so much better gluten free. Guess I just want to share the feel-goods.  

[cahill]

 For years my " loved ones"   ( my relatives)  ridiculed and belittled me at every turn .   Saying things like " you cant ALWAYS feel that bad " " its all in your head'',  "you could benefit from psychiatric care"( and  much much worse)   After my official diagnosis they reacted with" well that  is you I dont have that ".Then both my daughters and niece  were diagnosed with celiacs  and my brother was diagnosed with hashimitos .... The rest of the family is much quieter now but most still  refuse to be tested .

[BelleVie]

 For years my " loved ones"   ( my relatives)  ridiculed and belittled me at every turn .   Saying things like " you cant ALWAYS feel that bad " " its all in your head'',  "you could benefit from psychiatric care"( and  much much worse)   After my official diagnosis they reacted with" well that  is you I dont have that ".Then both my daughters and niece  were diagnosed with celiacs  and my brother was diagnosed with hashimitos .... The rest of the family is much quieter now but most still  refuse to be tested .

 

I hear ya. "Slams head against wall." 

[0range]

I believe it's because testing or acknowledging that something is wrong means that you will have to face the music, as they say. I'm not a diagnosed celiac, but Hashimoto's runs in our family - both my dad and I have it. My twin brother is showing signs of thyroid dysfunction (losing hair, sleeping all the time, etc.) yet absolutely brushes off the fact that it could be his thyroid. It's scary to have a diagnosis that is chronic/will affect you life-long, and I think it is comforting avoiding the actual diagnosis. 

[Anonymous]

I know this is not funny for you guys, but I had to laugh about how all of those family members simply ignored your well meant advice. That is definitely head in the sand syndrome.

I have tried for a long time to find the connection between autoimmune diseases and my health. With this celiac diagnosis I have finally found it. All of the puzzle pieces are in place for sure and it is going to be my mission to do the best possible in order to get healthy again.

 

What a sneaky disease this is and to think that none of my family members never were diagnosed, despite the fact that both have been in doctor's care all of their lives. It really goes to show that most medical doctors simply seem to completely disconnect nutrition with health.

 

I am scared to give that advice to people when I see them suffering from specific diseases. But there are people that I would like to help if I can. Scared to make those suggestions, because so many times negative reactions follow and all I meant to do was to help that person.

[Ennis-TX]

 

9 hours ago, Anonymous said:

I know this is not funny for you guys, but I had to laugh about how all of those family members simply ignored your well meant advice. That is definitely head in the sand syndrome.

I have tried for a long time to find the connection between autoimmune diseases and my health. With this celiac diagnosis I have finally found it. All of the puzzle pieces are in place for sure and it is going to be my mission to do the best possible in order to get healthy again.

 

What a sneaky disease this is and to think that none of my family members never were diagnosed, despite the fact that both have been in doctor's care all of their lives. It really goes to show that most medical doctors simply seem to completely disconnect nutrition with health.

 

I am scared to give that advice to people when I see them suffering from specific diseases. But there are people that I would like to help if I can. Scared to make those suggestions, because so many times negative reactions follow and all I meant to do was to help that person.

Could try causally asking your family to get the blood test done next time they are at the doctors. They could have it and only have minor or no symtoms to it. There is a form of it called silent celiacs with no outward symptoms but it is still destroying your villi and causing your body to slowly degrade. Doing so could shed some light on other issues, make family more understanding to your issues, and help them out in the long run.   

I was adopted at only a few weeks old, so my issues run a bit deeper with both leaning about this disease and getting anyone in the family to understand it. Does not help my birth mother still to this day refuses to release updated medical records or accept any kind of contact.   

>.> I give advice all the time, I like to feel useful to others, and can be oblivious to others feelings and reactions due to a form of autism called Aspergers.  Bit of a pain, but the feeling of being of use to others is very rewarding even if sometimes confused with being helpful over being a ass or someone overly intrusive.    I just wish others had helped me out earlier with this disease.

 

PS Anonymous, you keep posting on older threads, recently. Not a bad thing, just something I picked up on and piqued my interest/concern with how out of date some information might be. If you see a topic in a older post that piques your interest on something over a few years old you might get better repsonses by bringing the topic up in a new light on a new thread.

[Chrismark]

I know what you mean.  I can relate.  I have a very large family, and none of them will get tested for Celiac Disease, even though I was tested and found to have Celiac.  The reason was that they did not want to discover anything else wrong with them, and their doctors did not tell them that they had Celiac Disease.  My sister is having her family eat gluten-free, but that is because gluten-free is a "fad diet".