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Stupid Family


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#1 cavernio

 
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Posted 01 August 2012 - 10:35 AM

My sister. Allergies to multiple things in grade school. Has been sad essentially her entire life. (My old nanny calls up and she reminisced about how my sister would come home from school and say 'I'm sad' all the time.) She's never been able to get rid of her eczema. Anyone who knows her knows she's incredibly prickly and unpleasant to be around most of the time. She's always defensive and antagonistic, and she loses her temper at the drop of a hat. She was the most emo teenager I've ever known. She used to cut herself. She has worse nerve damage in her hands than I have. She's incredibly smart but couldn't handle higher education. She's tired often, she was surprised that even while working out and being fit she got out of breath faster than me. (Than me, iron deficient me!).
When I found out I was a celiac, she scheduled a blood test. It came back negative. Now when I want her to get a biopsy and explain that false positives are common for the blood test, she refuses, in her usual fashion. It's like I'm accusing her of something. She gets her back up. She says that if her biopsy were to come back negative that I'll just tell her to do some other test. She doesn't want to spend 'her whole life' getting tested for things. That 'I'm the person who says she's not happy', not her. True, I don't have much contact with her in the past 10 years, but she acts the same every time I see her! Her mood hasn't changed.
She says that she eats lots of unhealthy food now. Inorganic things, lots of sugar, processed stuff, etc, and lots of people do that, and they're knowingly being unhealthy, and it's their right. She thinks by me wanting her to get a biopsy I'm impinging her rights as a human being.

My dad's much the same way. He's puzzled by how he can excersise so much and yet be so tired all the time, how he doesn't gain muscle at all despite trying to do so, how smells can bother him so much, etc. And I'm not privvy to his emotional life as much as I have been to my sisters, but he's said that doctors want him to see psychiatrists, and, well, you can tell these things when you're around someone a lot. And since my mother isn't self-defeating, she got blood tests and biopsies and herself has done elimination diets to try and feel better. She's negative on blood work, on biopsies, and on elimination diets to being a celiac. And that leaves my dad with a lot more potential to carrying the genes (still not certain of course, but still.)

How do you explain to someone who's felt like shit their entire lives that maybe things could get better? Maybe with a simple thing like just not eating wheat? She probably has no recollection of what it's like to feel good if she's been sad ever since 7 or 8 years old.

I just...gah! I have a clear recollection of when I stopped feeling well. I have a comparison in my own life of being happy to not being happy. I *know* that my norm is unenergetic even though I'm totally used to it now. I don't feel disabled or anything from it, but when I think about it, I know that I used to feel differently. And I *know* what it's like to feel like her, because I've been like her. But I also know what it's like to *not* be like that.

I swear I've heard my dad say that his mental anguish comes as part of being smart (and he is very smart, no one argues that), but it's just such a ming-bogglingly stupid thing to say!

It's even more upsetting because she uses the 'but I don't feel badly' when I eat wheat thing too, especially because I've been gluten free for 2 months now and still don't notice much of a change.
And of course her doctor told her that if she didn't have the antibodies then it's certain that she's not only not a celiac, but that she's not gluten sensitive either.

I just don't get that if she was willing to get the blood test done that she wouldn't be willing to get the biopsy. All of the arguments she's used against me for daring to suggest that she should get a biopsy she could have said for not getting the blood test.


I knew I was going to get an earful from her for suggesting it. I knew it and I did it anyways because maybe, maybe, there was the chance that it might do more good than harm, that me telling her that false negatives aren't uncommon for celiac blood tests might actually make her want to get a biopsy. But now that she's got her back up she'll probably never get a biopsy done.

And my dad still doesn't get a biopsy either, although he's not confrontational when I mention it.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

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#2 Bubba's Mom

 
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Posted 01 August 2012 - 11:46 AM

I have family members too, that should be tested. I can see the symptoms in them. My hubby too.

You can tell them about Celiac, and gluten, but it's up to them to act on it..or not act on it. To me, it doesn't make sense to not look into it. It's such a simple thing to change in one's diet, and could save them from a lot of unpleasant symptoms, and maybe save their life!
I wish I had known about gluten years ago. You can bet I would have checked into it!

I can see my own sister slipping into such a bad state it breaks my heart. I've talked to her about getting tested, but she won't do it. She did go for almost a week without gluten, but said it was too hard.

I was baffled. Why wouldn't she want to find the answers to her poor health so she could feel better? I asked my hubby (who also shows a lot of symptoms and won't get tested)why someone wouldn't want to be tested. He said she probably just isn't ready to know. Not ready to make the difficult changes it would take to get healthy. Doing what she's always done is easier.

It sort of opened my eyes to why my hubby won't get tested. He's just not ready to know and deal with it. It's really hard for me to know what to say when they complain of their various ailments which I can see *could* be caused by malabsorption and inflamation. It's kind of maddening, but you know you've tried to tell them. They've been made aware.
After that, it's up to them to decide what to do. I guess it's sort of the same thing with drinking or taking drugs, or having a really poor diet. In the end, it's their choice.
Let's hope with time they become more open to it? Maybe as they see us become healthier, stronger, more even tempered, and still able to enjoy good food.. they'll become more open to it?
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#3 Roda

 
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Posted 01 August 2012 - 11:54 AM

I am convinced my father and brother have celiac as well. I give my dad a little credit because he did get blood tested once after I was diagnosed. However, it wasn't done correctly. My brother is the worst though. He refuses to be tested in any way, shape or form. His health is really declining and it is sad for someone who is only 42. My neice(said brother's daughter) has had off and on troubles the past couple of years, so she could be at risk as well. She mentioned celiac to her doctor, but they didn't test her and she didn't ask again since they found collitis on her colonoscopy. After that they didn't investigate any further.

I've given up on trying to convince dad and brother that they would be better off. It's hard because I love them. I just continue to do my own thing and thats that.
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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 Adalaide

 
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Posted 01 August 2012 - 12:18 PM

My dad's family just doesn't have health problems. Never mind my gluten intolerant aunt. All the people with missing gallbladders? Arthritis? Heart disease? High blood pressure? I'm sorry, maybe I wasn't clear the first time I said it. We don't have health problems in my family.

For now my brother's diabetic daughter is more or less healthy and happy, but I listen closely to the conversation to be sure it stays that way. I'm ready to jump on the first hint of celiac to be sure she is tested if she needs to be. I don't frankly give to damns about what is easy for my brother or his ex-wife. I care about what is best for that little *snort* princess.

Honestly though, more a problem is my husband and his family. His mother has celiac related cancer, but I'm already such a terrible inconvenience with all my problems. I mean, if I'd just get rid of that damn pet rabbit I wouldn't have any health problems and I could eat like a normal person. Forget that maybe she could STAY in remission this time. Her brother has crohn's and a few other things going on. Would it kill him to be tested? Their life with a toddler in the house is far too busy and stressful to worry about what he eats. (Shouldn't he be worried about what he eats if he has crohn's?!?!) He's being hospitalized every few months over how sick he's getting, but that's cool. He'll just keep doing what he's doing.

Thankfully my husband isn't as moronic as the rest of his family. Faced with the fact that he could be staring down intestinal diabetic neuropathy, or celiac, he's willing to give celiac a shot. He's at two weeks gluten free, yay! (His blood work came back negative and his doctor was like "so, that doesn't mean anything... try it for a few months" I like this guy.) I have noticed that he isn't running to the bathroom nearly daily, clutching his guts and groaning in pain. He says he's going more frequently but I'm like dude, 6 weeks minimum. Then I'm gonna stuff him so full of gluten he'll want to die. That's my plan, that he'll want to die. And he'll never eat it again.

The comparison to being an addict is a good one. I used to smoke, and I didn't stop until I was ready. Frankly, if it weren't for the fact that celiac can literally kill you I'm not sure I'd take this seriously. It could be that simple fact that is the reason people don't, or is the reason they don't want to think about it. Because it is serious. It's seriously hard. It's a serious change. It seriously messes things up to make the change to becoming gluten free. It's worth it, but it's hard to see that from the gluten side of things. From over here looking back we can see so clearly, but from over there? They don't see the life of freedom that we live, all they see is the life of without.
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"You don't look sick or anything"

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#5 heathenly

 
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Posted 01 August 2012 - 02:50 PM

I hear ya. I think others in my family may have gluten issues to go along with their other autoimmune issues, but the only one who has any interest in my observations is my son, who has Crohn's. The rest are, oh, how interesting, but I don't think that's MY problem. And thanks for those articles you sent me, but I didn't have time to read them.

The worst thing about depression, from personal experience, is the hopelessness. The disbelief that ANYTHING (much less something as simple as a change in diet) could REALLY help. And the frustration with people who offer solutions, no matter how much their heart is in the right place. It's really just easier to wallow in misery than to try to find a way out or consider options that may help. Depression is so exhausting, it often seems that all one has the energy to do is be depressed. And when you're depressed, you do sense that people are frustrated with you. And then you reflect that right back onto them. So, I do get that apathy and prickliness. And it's also hard to be on the other end, just trying to help. And it's a whole lot of that old adage about leading a horse to water.
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#6 cavernio

 
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Posted 01 August 2012 - 06:14 PM

That's totally it heathenly, at least for my sister. We're very similar, and I know the feelings.
With my sister it's really been her whole life, her generally unhappy mood is like a part of her. Like, if you tell someone things could be better if they just put a huge amount of effort into something when a) the person doesn't necessarily think there's anything wrong with them per se and b- when the chance of that working is just that, a chance, a guess, an uncertainty, then that's not useful either. And I *get* how making your depression oneself might have been a necessicity for sanity and living at one point, because trying so many various things hasn't worked, so hell, gotta live with it and own up to it and don't apologize for one's personality.
And I know that for myself, even when I'm logical about things, it doesn't change the emotions involved. And I guess you can think of apathy as an emotion in that regard, that you can't just 'change it'.

But that still doesn't change that it bothers me a ton. When I think about it it makes me want to just not talk to her. Why should I care for her if she can't care for herself? Ugh, she's not even that bad, she got a blood test at least. But of course that doesn't change her symptoms.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#7 heathenly

 
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Posted 01 August 2012 - 06:22 PM

I understand why it bothers you, believe me. There's not a whole lot of wiggle room with apathy and abject despair.

And there are so many doctors out there that just aren't helping.
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#8 notme!

 
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Posted 02 August 2012 - 11:44 AM

I understand why it bothers you, believe me. There's not a whole lot of wiggle room with apathy and abject despair.

And there are so many doctors out there that just aren't helping.



amen to that :(

convinced my son and his ex to at least get my grandson tested (he has terrible digestive issues, big surprise (not) - so does my son) and blood test came back negative. they will *never* have him tested again. and when my son said he would keep the kid on a gluten-free diet anyway, the doctor told them not to because it would be bad for him... yayyyyyy... poor little guy (he's 3), trying to potty train him was soooo difficult, because we all know how much warning you get with the big D :(

anyways, as for the rest of my blood kin, my sister eats gluten-light if she thinks about it, but HER son's blood test came back negative... brother doesn't eat, thinks he is lactose intolerant, won't consider giving up BEER :blink:

i give up. more for me. they can all get away from my fake bagels. and DON'T TOUCH MY CREAM CHEESE!!!!!!!!!
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just as i was getting my affairs in order to die of malnutrition...
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#9 cap6

 
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Posted 03 August 2012 - 02:26 PM

We have a dear friend who is dying from Myasthenia gravis and we are quite sure that she also has celiac. She is always sick after eating her fav turkey sandwich or breakfast muffins, not to mention all of her other sysmptoms. My SIL went to visit her armed with info I had printed out but the dr refused to even look at it or consider it. Our friend's comment was "Whew. i was afraid I'd have to give up my bread". :blink:

My BFF has all of the same symptoms as I did, has asked me about it and says she thinks it could be her problem..... but she loves to cook & bake and says she could never give up her wheat and make the diet changes that I have.

There it quite frankly nothing, nothing that you can do. You can offer the info, print up the pages, give it to them, set an example but beyond that you can't force a person to get tested or give it a try. You can cry in private for their pain but beyond that they have to find their own way.
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#10 Razzle Dazzle Brazell

 
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Posted 03 August 2012 - 02:41 PM

My dad's family just doesn't have health problems. Never mind my gluten intolerant aunt. All the people with missing gallbladders? Arthritis? Heart disease? High blood pressure? I'm sorry, maybe I wasn't clear the first time I said it. We don't have health problems in my family.

For now my brother's diabetic daughter is more or less healthy and happy, but I listen closely to the conversation to be sure it stays that way. I'm ready to jump on the first hint of celiac to be sure she is tested if she needs to be. I don't frankly give to damns about what is easy for my brother or his ex-wife. I care about what is best for that little *snort* princess.

Honestly though, more a problem is my husband and his family. His mother has celiac related cancer, but I'm already such a terrible inconvenience with all my problems. I mean, if I'd just get rid of that damn pet rabbit I wouldn't have any health problems and I could eat like a normal person. Forget that maybe she could STAY in remission this time. Her brother has crohn's and a few other things going on. Would it kill him to be tested? Their life with a toddler in the house is far too busy and stressful to worry about what he eats. (Shouldn't he be worried about what he eats if he has crohn's?!?!) He's being hospitalized every few months over how sick he's getting, but that's cool. He'll just keep doing what he's doing.

Thankfully my husband isn't as moronic as the rest of his family. Faced with the fact that he could be staring down intestinal diabetic neuropathy, or celiac, he's willing to give celiac a shot. He's at two weeks gluten free, yay! (His blood work came back negative and his doctor was like "so, that doesn't mean anything... try it for a few months" I like this guy.) I have noticed that he isn't running to the bathroom nearly daily, clutching his guts and groaning in pain. He says he's going more frequently but I'm like dude, 6 weeks minimum. Then I'm gonna stuff him so full of gluten he'll want to die. That's my plan, that he'll want to die. And he'll never eat it again.

The comparison to being an addict is a good one. I used to smoke, and I didn't stop until I was ready. Frankly, if it weren't for the fact that celiac can literally kill you I'm not sure I'd take this seriously. It could be that simple fact that is the reason people don't, or is the reason they don't want to think about it. Because it is serious. It's seriously hard. It's a serious change. It seriously messes things up to make the change to becoming gluten free. It's worth it, but it's hard to see that from the gluten side of things. From over here looking back we can see so clearly, but from over there? They don't see the life of freedom that we live, all they see is the life of without.


Hahahaha! Omg addy so violent! :lol: you made my day even if i read this post two days late. No but i think it will work without a doubt :D
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#11 Syl

 
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Posted 03 August 2012 - 11:16 PM

Hi Cavierno,

I think a lot of the fine members of this community have already touched in what I wanted to say, but I just wanted to say you're not alone on your battle. I have been a diagnosed Celiac for three years now myself, only 26 years old, and have been trying to get my entire family on board ever since. I understand completely the frustrations, but as BubbasMom mentions, all you can really do is EDUCATE and allow your loved ones to come to the right decision on their own.

My dad is just as stubborn when it comes to acknowledging Celiac's or the possibility that it's the cause of his many problems, past and present. Some people, even your own parents or siblings, are just set in their ways - even if their health depends on it. I think we all know just how addictive gluten-containing foods can be, and how this country practically runs on them. It's convenience, taste, and a cheap way of living. Accepting the fact that they might have to change their entire way of living and thinking when it comes to food may be more then they want to face.

In the case of your sister, just let her know she isn't alone. My brother took the panel himself, only one year older then me, and tested negative. He's much smarter then I in many ways, but when it comes to food, he just won't give up wheat. My mother is in the same boat, but is the only one who's taken initiative like yours. She has taken the time to make some diet changes, albeit slowly, but she wants to change for her health.

When it comes down to it, you just have to give them their space. I know it's hard to watch your loved ones suffer when you KNOW in your heart what is causing their problems, but they need to come to the decision on their own. Just be a great sister, a great daughter, and most importantly, an educator! Over time they may change, and if not, it's something both they and you may have to live with. One of the saddest examples of this that I've encountered is a Gluten Free Registered Nurse in town where I live. She educates people all over, raising Celiac awareness, consulting with them, and so much more. Personally, she's made an impact on my own life. The sad part? Her own mother is a Celiac in denial, and just doesn't care. She has broken many bones due to Osteoporosis, had many other Celiac related issues, but would prefer to eat whatever she likes, despite the fact that her own daughter is a Gluten Free RN.

I wish you the best though, as I know I myself will always be in this constant battle with my family, but after visiting them this summer I've realized that all I can do is teach them certain things, and allow them to decide what they wish to take on.
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