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So Frustrated With Family Member


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9 replies to this topic

#1 idonteatwheat

 
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Posted 20 March 2010 - 02:58 PM

I am so frustrated with my cousin, she was recently diagnosed but has been sick with an assortment of things for years. Well according to her she just has blunted villi but she isn't certain she has celiac's since she hasn't gotten back her bloodwork yet. I just hope the lab doesn't screw it up or that it isn't a false negative although I am not even sure with a positive for celiac's she would still go gluten free.

I know it isn't easy, I've been gluten free for around 2 years (have the dx too) but I am just having a hard time wrapping my mind around why she isn't even slightly relieved to know what is causing all her GI and other symptoms and that it can be fixed. Today she told me she went last night for all you can eat Cee-Cee's pizza and went on and on to me about how good it was, I had to say several times I can't eat that and you shouldn't be either. I got off the phone and just wanted to scream. It is so hard to not say anything because all I really want for her is to feel better and not be so sick.

She's been forever taking medicine for reflux and stomach issues, has horrible bloating to where her mom says she looks pregnant, gained weight, has inflammation in her knees so bad they are talking about replacing them and has issues with her gall bladder (no stones just pain, just like me). I know so much of that would clear up by changes in her diet but how would I ever convince her of that.

Her dad and my mom were siblings and both died from cancer. My mom and her sister (both aunts to my cousin) died from pancreatic cancer after suffering from GI issues for years. I tried to explain to my cousin that I had the same symptoms and problems as our aunt and how they all cleared up by eliminating gluten and MSG.

I feel so bad for my aunt she suffered for so many years, walking the floor at night in horrible pain, with all the GI issues and then the neuropathy and in the end pancreatic cancer took her, just like my mom.

It just seems like no one in my family is willing to listen, I almost feel like I might as well be talking about what little green aliens eat on their planet at times.

Thanks for listening to me go on about this. I just have to figure out how get over it since I am going to see her in a few weeks and I would like to enjoy the time with family without feeling upset.
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#2 chasbari

 
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Posted 20 March 2010 - 05:06 PM

Keep living your life and you will, whether they will ever admit it, become an example of what could be. You can lead a horse to water... well, you know the rest. I have many of the same concerns with my immediate family and yet they refuse to see how a change in the diet could help so many things that they would rather take medication for. Doesn't make sense to me... but then again, two years ago in my fogginess of thought it wouldn't have made sense to me to do what I am now suggesting to them. I have seen too many in my family succumb to pancreatic cancer and other maladies I am sure are all part of undiagnosed celiac and the accompanying complications.
CS
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#3 Roda

 
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Posted 20 March 2010 - 07:20 PM

I can relate. My brother refuses to get tested. He was diagnosed with sarcoidosis back in 1992 and since then he keeps a horrible escema rash on his face and legs. He suffers from lactose intolerence and gi symptoms. He sees that I am doing well, but refuses to believe that he probably has it too. He told me he would rather die than give up the foods and beer that he loves. Oh well, it's his life and no one can change his mind. I'll just keep doing what I know is best for me and hope one day he will get it before it is to late.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#4 David in Seattle

 
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Posted 20 March 2010 - 11:50 PM

How old is your cousin? At 1st I thought you were talking about a teenager, but further on in your message she sounds more middle aged.

Humans never cease to amaze me, and more often than not in a negative way. It is SO hard to get people to change behavior, even when it is blatantly obvious how necessary that change is. Look at how many people continue to smoke cigarettes. I find it astounding that anyone would still do that in this day and age. Being a heroin addict makes more sense to me; at least you get a pleasant sensation out of that. As the others have said, all you can do is be the good example it sounds like you are being. I know it's hard, perhaps even impossible to do entirely, but try not to let it drive you nuts. You can only do so much.
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#5 idonteatwheat

 
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Posted 21 March 2010 - 03:04 PM

Thanks everyone for the support. She is in her mid 40's, long enough on this earth to know she isn't invincible. I could mentally wrap my mind around a teen thinking it isn't a big deal. I told a friend today it is like watching a diabetic eat raw sugar and not use insulin, you just know it is going to have horrible implications.

I'll know more soon if it is a lack of support or just stubbornness. I think most of us have some point where we get it, I just hope in her case it isn't too late to help her.
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#6 debmidge

 
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Posted 21 March 2010 - 03:27 PM

I am so frustrated with my cousin, she was recently diagnosed but has been sick with an assortment of things for years. Well according to her she just has blunted villi but she isn't certain she has celiac's since she hasn't gotten back her bloodwork yet. I just hope the lab doesn't screw it up or that it isn't a false negative although I am not even sure with a positive for celiac's she would still go gluten free.

I know it isn't easy, I've been gluten free for around 2 years (have the dx too) but I am just having a hard time wrapping my mind around why she isn't even slightly relieved to know what is causing all her GI and other symptoms and that it can be fixed. Today she told me she went last night for all you can eat Cee-Cee's pizza and went on and on to me about how good it was, I had to say several times I can't eat that and you shouldn't be either. I got off the phone and just wanted to scream. It is so hard to not say anything because all I really want for her is to feel better and not be so sick.

She's been forever taking medicine for reflux and stomach issues, has horrible bloating to where her mom says she looks pregnant, gained weight, has inflammation in her knees so bad they are talking about replacing them and has issues with her gall bladder (no stones just pain, just like me). I know so much of that would clear up by changes in her diet but how would I ever convince her of that.

Her dad and my mom were siblings and both died from cancer. My mom and her sister (both aunts to my cousin) died from pancreatic cancer after suffering from GI issues for years. I tried to explain to my cousin that I had the same symptoms and problems as our aunt and how they all cleared up by eliminating gluten and MSG.

I feel so bad for my aunt she suffered for so many years, walking the floor at night in horrible pain, with all the GI issues and then the neuropathy and in the end pancreatic cancer took her, just like my mom.

It just seems like no one in my family is willing to listen, I almost feel like I might as well be talking about what little green aliens eat on their planet at times.

Thanks for listening to me go on about this. I just have to figure out how get over it since I am going to see her in a few weeks and I would like to enjoy the time with family without feeling upset.



Don't dwell on this - it's her own life and she has to live it as she sees fit, even if she is harming herself. If she were on drugs or alcohol you'd do an intervention, but so far there's no interventions for gluten (just imagine if there were!). She sounds as muleheaded as my husband's sister. But clearly she's in denial (like my muleheaded SIL). You are just a bystander now; you did your best to guide her but she's determined to perhaps prove you wrong just for spite; so the more you give advice to her the more she's going to act like a mule. You're going to have to let the problem go and allow her to make her mistakes (if she has gluten-intolerance). My SIL always complains about her stomach but won't even go for testing. But yet she downplays and ridicules her brother's celiac and other health issues. Some people just don't have the sense God gave a billygoat. So don't get yourself anxious over this; apparently she doesn't want any help or advice from anyone --- yet. Let's see what she does after she gets her test results.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#7 plantime

 
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Posted 21 March 2010 - 06:47 PM

My older sister came and visited me for 2 weeks last summer. She ate glutenfree like me for the entire 2 weeks, and all-I mean ALL- of her gi issues cleared up and her blood sugars stabilized. As soon as she went home, she went back to eating gluten. She knows she is at the very least intolerant, but refuses to do anything about it. She knows that our mother was celiac and refused to give up gluten and consequently died a terrible death.

Sadly, we can't do anything about what others do. It hurts, and it hurts bad.
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Dessa

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#8 Black Sheep

 
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Posted 25 March 2010 - 08:50 PM

This sounds almost like I used to be. Well, I wouldn't have called my celiac cousin and bragged about eating pizza, but I was definitely in denial. About 8 years ago I started going to a Naturopath who figured gluten was part of my many health problems, and she had me go g.f. for a month to see how I felt. I did, and didn't feel any better. So up until just over 2 weeks ago, I insisted time and time again that since I'd done the diet test, I was fine as far as gluten was concerned. But I think the last few years I knew better, deep in my heart. Otherwise, why would I have been so curious about g.f. flours and pasta? About a year ago, I even bought a couple of g.f. baking mixes! Plus several g.f. flours, and switched almost exclusively to brown rice pasta. I tried to tell myself that baking with these "exotic" flours would be "interesting", and the brown rice pasta--well, it was probably just healthier in general, right? Good grief, what a dork I was being! :lol:

It took pig-headed me nearly 18 long years of being sick, with a couple of years in there where I felt o.k., before I got to where I am now--literally feeling that I'm dying. I mean seriously. My doc told me just over 2 weeks ago that she's almost 100% positive that gluten is the root of most of my health problems (I didn't get tested 'cause I don't have ins.); and deep down, I knew she was right. So when she told me to quit eating gluten for a month, I finally surrendered my stupid stubborness and wholeheartedly agreed. So far, 3 of my worst symptoms have eased up quite a bit. Seriously, I think now I hate gluten!

Looking back at the first time I did this and felt no better, I realize with what I've been learning this time around, that I actually was getting gluten in a lot of those so-called "hidden" areas--like restaurants. I was so ignorant, I didn't even think to closely question the staff about certain foods, prep methods, etc.! Besides that, I had pernicious anemia, which took a good 6 months or more to clear up, since I refused to give myself shots and instead took the sublinguals.

So I'd just say, do what you need to do to keep yourself healthy, and don't worry about your cousin. I know, easier said than done! But she may just be one of those people who, like I was, is so afraid of drastic change (like going g.f.--I mean, it really is a pain in the butt!), and so set in her ways, that it may take her being seriously ill, and nothing she tries helping her, before she's willing to do the hard work of making the changes she needs to make.

Wish I could be of more help....hang in there!
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#9 idonteatwheat

 
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Posted 26 March 2010 - 05:28 PM

Thanks, it's just hard. If she was hooked on narcotics no one would give me one iota of flack about trying to help her. I'm just going to go with an open mind and heart and try to make a difference, and well if it makes me nuts someone can just bail me out of the psych ward.
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#10 ragidyann

 
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Posted 29 March 2010 - 06:12 AM

My sister is the same way She just wont listen to me . She complains about this and that oh and her weight. I said go on the diet for a few weeks and You will loose weight and unbloat overall feel so much better. And you can eat on this diet right. Oh God forbid. Cant give in to anything. So I Just sit and listen to her complain day after day and say no more. But haha i lost my weight and she didnt. But eventually she will have to listen or shell get really sick like i did. Good luck,Im on your side.
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