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I Really Need Some Level-Headed Advice...


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#1 badsharkmovie

 
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Posted 29 August 2010 - 05:43 PM

okay. i am 24 years old. back in 2002, my mother was diagnosed with celiac disease, so obviously she has had ample time to adjust... but she hasn't. she'll still eat gluten regularly, especially when she's on vacation (she claims she doesn't have symptoms because she's "relaxed"). her utter lack of regard for her health has me completely bemused. she'll eat cake, bread, whatever, if she wants it. she still goes out to eat regularly, and never checks the ingredient lists or asks for a gluten-free menu. she doesn't do any research, she doesn't check ingredient lists when she shops, all common-sense things (ESPECIALLY considering she is a nurse) and basically her viewpoint is that if she can't see it, it isn't there... and even if she can see it, she'll cheat all the time anyways.

now, while i have never been diagnosed with celiac disease, i started showing symptoms of celiac disease about two years ago; i went on the diet and my symptoms went away, so naturally, i stayed gluten free and know that i have celiac. while i have my very, VERY rare issues, i am extremely careful when i shop and go out to eat and am doing very well for myself.

here's my issue: i'm extremely worried about her. she refuses to do ANYTHING to change and doesn't seem to give a crap about getting sick. it's starting to get very, very frustrating as i am trying to build a better, healthier life for myself so that i can live a full life without constantly being sick, while my mother, i feel, is going to get stomach or intestinal cancer and die sooner than she has to. her ignorance and complete disregard for her health and body has me at my wits end. also, i have to move back in with my parents soon, and i'm afraid of eating anything she makes, because if she doesn't care what she eats, why should i believe she'd take the time to care if i get sick either?

so... what should i do? do i have an intervention? lord knows i've tried getting her to change her habits. i've tried getting her to go to whole foods with me, i've tried shopping with her and pointing out ingredient lists and i've tried directing her to websites and literature. all she does is say i'm "overreacting" and "going overboard" and (using food examples) that she can still just eat the pizza toppings and not the pizza itself even though they've been in contact, or eat the chinese food but just not use soy sauce, even though everything they make uses soy sauce.

i am literally at my wits end, and even though i'd rather just give up and let her keep destroying herself, i really can't, because she IS my mother and i love her and i worry about her and don't want to see her go anywhere soon just because of a diet restriction and the decisions she makes can negatively impact others around her that may have celiac disease.

sorry for the length and rambling so much, but... what do i do? i am literally about to collapse in exhaustion over my frustration with her attitude. please, help me out here.
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#2 ravenwoodglass

 
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Posted 30 August 2010 - 01:39 AM

Well I am in your situtation only it is reversed. I was very ill and was also diagnosed in 2002. 6 months later both my then older teens were diagnosed. Both followed the diet for a few years but then decided they didn't need it. My DD especially is having severe impact neuro wise and she is so thin that I really worry about her. My DS is also having impact but he is gaining wieght rather than losing. I have tried to talk to them but it just makes them angry. I have come to realize that there is nothing I can do. It is their bodies and as much as I love them nagging about it does nothing but drive a wedge between us. We can't force someone to follow the diet. All we can do is try to talk to them and hope they listen. Perhaps when you are in the home again your example will help. Cook for the family as much as you can and when you can't do as much as you can to keep yourself safe. If this means keeping cooking utensils and food supplies seperate do so. If you have been in college and had a small fridge bring it home with you and use it in your bedroom. If you don't have one it might be a good thing to get.
I feel for you. It is hard when we know our loved ones are damaging themselves but when it gets down to it there really is nothing we can do other than try to lead by example and educate.
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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)

#3 StacyA

 
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Posted 30 August 2010 - 05:07 AM

You've already acted as much as you can - by communicating your worries and educating her (although it sounds like she already was educated). You have to let the rest go - it's in her hands and you're not doing yourself or your relationship with her any favors by getting to the point of resentment and nagging.

Remember the 'Serenity Prayer' - seek 'acceptance of the things you cannot change' - because you already had the courage to say what you've said to her - and if you're together and she offers you cake - say something to the effect of: 'Absolutely not, Mom. You know gluten hurts those of us with celiac disease, whether we feel immediate symptoms or not. I wish you wouldn't eat that either, because I love you, but you're a big girl and can make your own decisions.'

Resist the temptation to continue beyond that, and resist the temptation to forward 10 things a day to her about celiac disease. She IS a big girl, and your mother, and hopefully she'll change her ways, but having the both of you being ill (you from stress) is absolutely not productive.
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#4 kareng

 
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Posted 30 August 2010 - 05:41 AM

Is she married? Could you talk to your father or step father without her? Maybe he doesn't realize what she is doing to herself? If you really have to live with her, you will have to be very careful with food. I don't know her age, but if she gets a routine colonoscopy, maybe you could get her to also do the endoscopy with biopsy at the same time. Tell her you challenge her to prove its not harming her. If they don't find anything, you will have to back off.
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#5 badsharkmovie

 
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Posted 30 August 2010 - 08:51 AM

she knows she has it - as i said, she was diagnosed eight years ago through blood test and she gets violently ill when she eats any of it. she also knows exactly what it's doing to her body - she is a nurse after all. she just doesn't seem to care and it's very, very frustrating. she just refuses to alter her eating habits or lifestyle. for instance, one time she left a job and everyone got her a going-away cake cake. nice as it was, when i came by the house for dinner, i asked her why she was writhing in pain. she said "oh, i was bad" and pointed out and told me how co-workers had gotten it for her and she ate a bunch of it because "she didn't want to hurt peoples feelings." this was before my own issues with celiac disease, and i straight up told her "you won't hurt anyones feelings by saying you're ALLERGIC TO THE DAMN STUFF. people, especially those where you work, will GET IT." but no, she just doesn't care. it's literally like speaking to a child about it, and i really think that she believes that if she turns a blind eye, nothing's going to happen - and she claims she's not "that sensitive" when eating things that only have a little bit of flour in them or have been a part of something with gluten (ie pizza), which i'm pretty dang sure from my experiences with her (i am around every once in a while, soon to be often), and myself, is a bunch of baloney.

however, stacyA is probably right - i can't keep stressing over someone elses total lack of respect and care for THEIR own body. people need to be responisble for themselves and their choices... i just changed my minor in nutrition sciences at school, so i'll just wait to talk to people who actually WANT to learn, be helped and act like responsible adults.
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#6 lovegrov

 
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Posted 30 August 2010 - 09:22 AM

I'm not real sure what else you can do, but You DO have a major problem if you're returning home to live. Maybe somehow you can get her to be more careful to protect you.

richard
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#7 badsharkmovie

 
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Posted 30 August 2010 - 09:25 AM

i actually called her and left a message saying i was going to cook while living there. there's no way i'm risking anything. i'm an adult, and quite a good cook, so there's no point in taking that chance.
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#8 Salax

 
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Posted 30 August 2010 - 11:31 AM

So, just to throw something out there....Do you (or anyone that has a same situation) wonder if maybe just maybe, people that do this are doing for the attention they get. Like your mom being sick and you asking her what's wrong, are you ok. The sympathy vote or the "oh, poor baby." stuff. Just a thought that perhaps people like this crave the attention. When eating gluten free and feeling good the attention goes away, so does the sympathy. I don't mean to sound cruel or rude, it's just a thought that popped into my head. :)

I wonder if we gave those types of people less attention, if their attitude/self assement would change...Just a thought. And maybe it wouldn't. But it might. Who knows. :D

I hope the situation gets better for everyone involved. Best of luck!
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Salax
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Celiac Disease - Gluten Free since Feb 2009,
Cow Milk &  Corn free - June 2012,
Gall Bladder Failure - Removed July 2009,
Colitis, Hashimotos Disease, & Diverticulitis

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
( )_( )
(='.'=)
(")_(") Eat your vegetables!


#9 ravenwoodglass

 
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Posted 30 August 2010 - 11:37 AM

Another thing that may factor in is the addiction aspect. For many of us there is a very real addiction to gluten. I know this doesn't excuse her selfdestructive behavior but it may help you to understand. She may be so addicted that she just can't imagine not eating gluten and has no strength to 'just say no'.
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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)

#10 badsharkmovie

 
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Posted 30 August 2010 - 11:42 AM

i really think it's just turning a blind eye and not caring, but i do think that an addiction may be a big part of it. i went 22-23 years before having to change, while she went 42 years before showing any symptoms. i can imagine it being a lot harder to deal with after that much longer an amount of time, but still - she knows people near her age who have gone gluten-free with no problems. it's just so terribly frustrating - how can a healthcare expert choose to be so ignorant?
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#11 ravenwoodglass

 
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Posted 30 August 2010 - 11:49 AM

it's just so terribly frustrating - how can a healthcare expert choose to be so ignorant?


I know, I have one in my own family. It's hard to watch someone you love hurting themselves but there really isn't anything we can do.
  • 0
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)

#12 'lynrn

 
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Posted 30 August 2010 - 11:52 AM

One other thing to consider is the psychological effects of continual glutening. Although new to the diagnosis, I am a 60 yr old nurse. We are very stubborn and figure we know it all. I don't think the effects of braindfog can be understated....My judgement WAS impaired!!! It is really scary. I didn't get just how much an effect it was having. It is possible that once you are in the home cooking for your family.....and I would suggest trying to enlist EVERYONE's cooperation...tell them it is for YOUR benefit!!
that your mother might improve....or...maybe notice a Real difference when glutened. I know, I did. My reactions got severe!!! My thinking got much clearer and I was able to see the difference my diet was making. I hope for everyone's sake that life improves.
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#13 badsharkmovie

 
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Posted 30 August 2010 - 11:55 AM

thank you so much - she's always told me that she feels foggy when she eats gluten, and i know how bad it can get from personal experience (i've literally sat in bed for days just because i couldn't get up from being that fogged up). i just don't why someone, who knows what it's doing to them, would continue on this way... especially when they know just how wonderful it feels to feel good.
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#14 Skylark

 
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Posted 30 August 2010 - 01:57 PM

Your post makes me think of people who smoke cigarettes. :( Some people are self-destructive. Others are not good at weighing short-term pleasure against long-term gain, especially when it's something low-risk like cancer or far in the future like osteoporosis. It's terrible when it's someone you love, but you can't control her or change her no matter how much you care.

Keep your fingers crossed that she doesn't get cancer, and try to set a good example. I'm glad to hear you will be cooking, as you do need to do whatever you can to protect yourself.
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#15 Juliebove

 
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Posted 30 August 2010 - 10:29 PM

I have a similar situation in that my mom has food allergies. Part of the problem is that she seems to be losing her memory. One day she will say she is allergic to something and then another day she will say that she is not. I think she just forgets. She seems to remember the banana allergy, but then I think she doesn't really like bananas. She is also supposed to avoid wheat and nightshades due to her arthritis.

We will go out to eat and she will order waffles. Not even mentioning the wheat, because I've been told not to mention it... I will remind her of her egg allergy. Then she will look at me like I am nuts and tell me that she didn't order eggs. When I tell her there are eggs in the waffles, she will look at me like I am nuts again. I think part of the problem there is that she doesn't like to cook and doesn't cook much so perhaps she really doesn't know what is in a waffle. There could well be dairy in there as well and she also has a dairy allergy.

She has asked my daughter and I not to mention her allergies. It is difficult to do. But we try. However... I do get sick and tired of her complaining about how she is sick and doesn't know why. I know why. So I have just told her that we do not want to hear about it when she is sick.

It's not an ideal situation, I know. At least she doesn't have life threatening allergies. Hers are IgG like ours.
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