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Why Are Families So Stubborn?


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11 replies to this topic

#1 BelleVie

 
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Posted 07 August 2013 - 01:59 PM

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. 

 

:angry:

 

thank you for the venting platform! 


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#2 BelleVie

 
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Posted 07 August 2013 - 02:01 PM

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. 


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#3 Gemini

 
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Posted 07 August 2013 - 03:00 PM

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.  :)


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#4 IrishHeart

 
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Posted 07 August 2013 - 03:24 PM

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!

 

ostrich-smiley-emoticon.gif

 

 

 

 

 

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!


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#5 Marilyn R

 
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Posted 07 August 2013 - 03:33 PM

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.


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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#6 notme!

 
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Posted 07 August 2013 - 04:57 PM

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?   :o

 

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  :(


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

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#7 BelleVie

 
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Posted 11 August 2013 - 05:17 PM

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. 


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#8 w8in4dave

 
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Posted 11 August 2013 - 07:10 PM

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!! 


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Recovering Gluten Eater 

DX'd June 17th 2013


#9 BelleVie

 
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Posted 11 August 2013 - 09:03 PM

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. :) 


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#10 a1956chill

 
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Posted 11 August 2013 - 11:56 PM

 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 . :blink:


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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#11 BelleVie

 
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Posted 12 August 2013 - 05:14 AM

 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 . :blink:

 

I hear ya. "Slams head against wall." 


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#12 0range

 
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Posted 20 October 2013 - 06:09 PM

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. 


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Canadian undergraduate student in 3rd year, studying Psychology and Speech Communication. Hoping to go into rehabilitation sciences!  B)

  

Dx with: 

Hashimoto's thyroiditis - 22/09/12

benign paroxysmal positional vertigo (bppv) - 18/05/13

irritable bowel syndrome - 21/06/13 

HLA-DQ8 gene ~ heterozygous (moderate risk for celiac) - 29/11/13

 

-> underwent a colonoscopy on 24/08/13, showed mild focal colitis + lymphoid hyperplasia (aka inflammation) in terminal ileum





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