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A Relative Is Diagnosed Celiac- Won't Go Gluten-Free


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28 replies to this topic

#1 LeahBanicki

 
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Posted 07 July 2012 - 06:29 PM

A close relative I will call Peggy, was diagnosed a few years ago with Celiac Disease. Before I was actually. None of my family knew anything about the disease.
Now several members of my are diagnosed and living gluten free but Peggy refuses to go gluten free cause she doesn't thin it will help. Her body is in pain all the time and her Kidneys are failing and growing horrible stones and now she is vomiting undigested food. I am so worried about her.
Just the other day I begged her to try and go gluten free so her body could heal. She said she would and then two days later she was eating a foot-long sub.
I love Peggy and want her to feel better. Not sure how else to tell her that her choices could be killing her. She moved away from the doctor from the original diagnosis so she has no one besides the family members telling her to be careful.
So frustrated and scared.
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- Leah Banicki -

Writer, Wife and Mother.

Gluten free since 10/28/10


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#2 psawyer

 
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Posted 07 July 2012 - 06:39 PM

Sadly, you can lead the horse to water, but you can't make her drink.

She knows, and she knows that you know. So, reminding her will accomplish nothing.

You have told her. There is nothing more that you can do. If she chooses to ignore it, that is her choice. Do not let it become YOUR problem.

It is hard to watch a loved one self-destruct, but there is only just so much you can do.
  • 8
Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#3 SleepyBunny

 
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Posted 07 July 2012 - 06:53 PM

I believe my family could benefit from going gluten free also. Two of them have pretty much told me I'm not giving up my food. Not only are gluten containing foods bad (for obvious reasons) but as I'm sure you know they are highly addictive and that makes it incredibly hard to stop eating them. I've been gluten-free for almost a year and I still find myself wanting to eat that stuff. She's just going to have to figure this one out for herself. You can only drill this into people so much. They have to want to do it for themselves. I hope she figures it out! Peggy is lucky to have you :)
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Gluteny - the 8th deadly sin

#4 ravenwoodglass

 
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Posted 08 July 2012 - 04:27 AM

Can you get her to come here and talk to us? Maybe we can help her realize that no matter how far her disease has progressed the diet can help. Some of us just are so sick we have no hope before diagnosis and it is hard to grasp the idea that so much of our pain can be caused by what we are eating. That combined with the withdrawl can make the first weeks really tough.
That said you can't force her to go gluten free as much as you want to see her healthy. You're in a tough spot as it is hard to see someone we love suffer so much.
(((((((((((((((((((((((HUGS))))))))))))))))))))))))
  • 3
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 ~**caselynn**~

 
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Posted 08 July 2012 - 04:47 AM

I have a family member this way as well, she's willing to listen but not ready to jump in. Although, I'll give her props, she's slowly begun to make the transition with my help. I figure that if she's slowly making the transition then it's a start, I give her recipes and when we have family parties my family always is super conscious of me being gluten-free. So it's easier to sit down and eat with me, maybe it's all about not feeling singled out? Not sure but it's working and I'm glad for her in that aspect!
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~**caselynn**~

#6 srall

 
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Posted 08 July 2012 - 05:08 AM

My younger brother absolutely must go gluten free. Unfortunately his blood test for celiac was negative so the GI told him gluten wasn't the cause of his many many many many health (physical and mental) problems. He kind of knows he needs to go gluten free but is worried about the cost, loss of convenience and giving up his favorite foods. He's a 40 year old grown man, so all I can do is lecture him when I see him (hey, I'm a big sister) and then watch him be miserable. Very painful.

I think just making your family member aware and gently educating her as you go along may help. One of these days she might just get so tired of feeling like crap all the time that she'll go for it. I'm sorry because I know it's hard to watch.
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#7 IrishHeart

 
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Posted 08 July 2012 - 05:21 AM

I have to agree with Peter. It will not help to badger her.
If she is intelligent enough and has read about celiac disease, she knows she is doing the wrong thing.

I have dealt with this myself. My large extended family is full of people with AI diseases, GERD, IBS and other bowel issues, depression, etc. and it pains me to see them all ignoring the one thing that could help them resolve some of these problems. It is so hard to watch them, and I lost many nights of sleep worrying about them all and agonizing over "why don't they listen to me"??


They all saw me dying from it. They know what this can do to someone.

I was the first to be DXed, and they think I am the "only one". I have sent them a letter and literature to read and why it is essential to be tested.

My Dad surely died from complications of celiac, but I became very ill right around the time of his death, so I could not have known back then it was the basis of his many illnesses. His symptoms scream "celiac" and I see it pretty damn clearly now.

Only my 85-year-old Mom went gluten-free --about 5 months after my DX---and she feels great! :)

My doc even told to give it up. For my own sanity.

You are so sweet to care about Peggy, but Peggy has to learn to care about Peggy.
  • 2

"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

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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


#8 icm

 
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Posted 08 July 2012 - 06:11 AM

Peggy needs to be informed, as others have said, about the risks and complications of celiac disease. I've been gluten free for about 12 years and have yet to personally know one other person who takes this condition as seriously as I have done over the years.

I was young at the time, too - only about 8 years old.

Do you have a celiac support network in your area? They may hold gluten free dinners at a gluten-free friendly restaurant every now and then and are a great way for celiacs to meet others who have had personal experience with the issues mentioned above.

However, at the end of the day, the choice is hers.
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#9 squirmingitch

 
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Posted 08 July 2012 - 06:35 AM

Perhaps the only thing you can do now is to print off some of the stories of some of the ppl on this board who were way worse off than Peggy is now when they found out they were celiac & went gluten free. Then next time you visit Peggy, you could quietly leave those print outs at Peggy's house so she will be sure to find them. when she's all alone & finds them hopefully she will read those stories & see how these ppl have healed.

Everyone who has stories like that (like you IH) could leave a link to the post where your story is & Leah could then have easy access to them in order to print them out.


Otherwise Leah, my heart breaks for you & Peggy & for the suffering you go through watching a loved one destroy themselves. But I agree with everyone else here. Bottom line --- Peggy has to want to save Peggy.
  • 2

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#10 bartfull

 
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Posted 08 July 2012 - 08:33 AM

Maybe invite her over for a delicious gluten-free meal? Maybe once she sees that gluten-free can be just as tasty as gluten foods she'll give it a whirl. If you could just get her to go gluten-free for a week or two I bet she'd start feeling so much better she'd be GLAD to go gluten-free.
  • 3

gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#11 LeahBanicki

 
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Posted 08 July 2012 - 01:31 PM

Thanks everyone for the thoughts. It's great to have a place where I can air out my frustrations. Having a safe community to talk too is priceless.

Thanks Everyone. I will try and convince Peggy to join up and get educated.

Praying for her to get informed.

Thanks to my new friends.

~ Leah
  • 1

- Leah Banicki -

Writer, Wife and Mother.

Gluten free since 10/28/10


#12 LeahBanicki

 
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Posted 08 July 2012 - 01:39 PM

Maybe invite her over for a delicious gluten-free meal? Maybe once she sees that gluten-free can be just as tasty as gluten foods she'll give it a whirl. If you could just get her to go gluten-free for a week or two I bet she'd start feeling so much better she'd be GLAD to go gluten-free.


I just shared a piece of gluten-free chocolate cake with her. It was a great recipe. So glad to see that she liked it. Just wanting her to know it can be done.

:D
  • 1

- Leah Banicki -

Writer, Wife and Mother.

Gluten free since 10/28/10


#13 ~**caselynn**~

 
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Posted 08 July 2012 - 03:46 PM

I just shared a piece of gluten-free chocolate cake with her. It was a great recipe. So glad to see that she liked it. Just wanting her to know it can be done.

:D


That's a great start, and keep showing her it can be done! When she's ready you'll be there for her, and that's the best part, having an awesome support system! :) ....chocolate cake always helps too haha!
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~**caselynn**~

#14 cap6

 
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Posted 09 July 2012 - 06:06 AM

Peter is so right. You can give her the info but you can't force her. I have a brother who doesn't care and three friends who I feel certain have celiac or would benefit from the gluten-free life. One friend told me she could never give up her bread and pasta and continues to suffer from chronic D. You can give it out but some people just don't want to hear. Gluten-free is a total and complete lifestyle change and it isn't always easy. Most people don't want the inconvience. Sad but true.
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#15 bartfull

 
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Posted 09 July 2012 - 11:47 AM

I had a good friend years ago who had such terrible D and other celiac symptoms. I didn't have it back then but Mom did, and I KNEW that was her answer. Her doctor didn't have a clue, and just kept telling her it was IBS.

I BEGGED her to try a gluten-free diet for a while, but she said she REFUSED to have celiac because she just loved eating out. (She and her husband hardly ever ate a meal at home, and because they were well off, they ate at really good, expensive restaurants.) She would not even TRY gluten-free, because if it made her feel better that would mean she had it, and she said she would rather be sick and die an early death than to give up her fancy restaurant meals.

I've lost touch with her and have no idea if she has since changed her mind, or if she has now developed the complications we all know are likely...
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 





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