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Family Says I'm Paranoid And Should Go Back To Eating Gluten


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#16 IrishHeart

 
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Posted 20 March 2012 - 04:33 AM

Thank you. I'm sorry you've gone through so much! but it really helps to be told that I'm not alone and not crazy.

Wow, that site has a lot of information! Thank you!


Tell yourself that all the time:
I am not alone and I am not crazy. ;) It works for me. :)

I have a friend who owns a gluten-free bakery/restaurant and she has shirts that say this on the back:

"Blame it on the Gluten" :)

Recently, in conversation with two close friends (who were not as supportive as I had hoped when I was very ill before DX) I realized they had no idea what gluten/celiac could do until they really read (and absorbed) everything I had sent, then SAW me as I basically returned to life this past year. They were as perplexed and distraught as my husband and I were when we did not know what was happening to me. Now, they ask me questions all the time and one of them realizes that she, too, may have a gluten problem herself.

Sometimes, it just takes time.

Time for us to heal and for others in our lives to come around and see what it is that makes us so ill. ( Truth be told, it is pretty unbelievable to me sometimes. <_< )

Best wishes to you! IH
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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


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#17 lesliev523

 
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Posted 20 March 2012 - 05:34 AM

I feel for you, my family treats me the same way. I have not been diagnosed, but have spent the last few years with increasingly deteriorating health. I went gluten free on a trail basis last summer, and was treated terribly by my mom and sister when I visited them. They would sigh and roll their eyes at me if I looked at an ingredient label. There would be snide comments, and then they basically told me it was all in my head. Finally I believed them, and even though I don't eat much gluten, my health has continued to spiral. Well in the last few weeks I have been back in the doctors office.... we have been looking at auto immune issues.

Family can either be your biggest ally, or your worst enemy.
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Gluten free since 4/17/12

#18 llama3

 
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Posted 20 March 2012 - 06:48 AM

Recently, in conversation with two close friends (who were not as supportive as I had hoped when I was very ill before DX) I realized they had no idea what gluten/celiac could do until they really read (and absorbed) everything I had sent, then SAW me as I basically returned to life this past year. They were as perplexed and distraught as my husband and I were when we did not know what was happening to me. Now, they ask me questions all the time and one of them realizes that she, too, may have a gluten problem herself.


It's good to know that people can come around in time. It always surprises me how insensitive people can be about other people's illnesses and disabilities. It actually seems to be the rule rather than the exception, but it still surprises me every time. Maybe one has to have suffered chronic illness oneself in order to learn that sensitivity, or maybe people who haven't been chronically ill are scared by it in others because it makes them think about things they don't want to think about. I don't know.


I feel for you, my family treats me the same way. I have not been diagnosed, but have spent the last few years with increasingly deteriorating health. I went gluten free on a trail basis last summer, and was treated terribly by my mom and sister when I visited them. They would sigh and roll their eyes at me if I looked at an ingredient label. There would be snide comments, and then they basically told me it was all in my head.


Yeah, it especially hurts because seven years ago when I first started having a bunch of health issues (mostly neurological), I had tests done which all came back normal and then my doctors and my parents all told me that it was in my head, and I believed them. My mom has since apologized for telling me that, but now she's doing it again!!

I hope you can figure out what's going on and feel better!
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#19 cavernio

 
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Posted 20 March 2012 - 07:18 AM

Yes, it is the worst when family and friends don't understand or accept the way you are. If you know you feel badly when eating gluten, they shouldn't question it. Most importantly, don't question yourself. Yes, placebo's exist, but not, that doesn't mean what you have is 'in your head'. Especially since I'm not sure how much study there has been on long-term placebo effects.

Remember that you are the only person who really knows your body and your mind. Don't doubt it just because an outsider doubts it.

Having been depressed for most of my adult life, in varying degrees, 'it's all in your head' is a phrase I've come to hate. Sure most of my family believe me when I say I don't feel well or happy, but they always push me, and still do, to do things that I physically, mentally, and emotionally, can't handle, and then are just disappointed when I can't live up to that expectation. I hate being called lazy when I'm too unfocussed to even read a freakin' novel.

It's sad but true that I only now, since being diagnosed as a celiac, feel validated in how I feel and have felt.

It is surprising to think of gluten in your intestines as causing mental illness, however, auto-immune issues seems to be the newest/only physical reason that I've heard from the medical community that explains mental illness. Also things like leaky gut syndrome, which I some people say as being a gluten-eating celiac will eventually cause, allows all sorts of crap into your bloodstream, and from there, potentially the brain.

I have yet to get a whole lot more energy from being gluten-free, (especially since I've messed up a few times), but I'm hopeful. Heck, the very fact that I'm hopeful at all speaks volumes :-)

I have a cousin who recently has stopped gluten and dairy who has had a dirth of medical problems, mental and physical, from a young age, without being diagnosed, and from what I hear, she's feeling better. No surprise there really, since my immediate family think that's the side with the celiac genes; we're working on figuring it all out.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#20 IrishHeart

 
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Posted 20 March 2012 - 01:35 PM

It's good to know that people can come around in time. It always surprises me how insensitive people can be about other people's illnesses and disabilities. It actually seems to be the rule rather than the exception, but it still surprises me every time. Maybe one has to have suffered chronic illness oneself in order to learn that sensitivity, or maybe people who haven't been chronically ill are scared by it in others because it makes them think about things they don't want to think about. I don't know.


I think you are right on the money with these thoughts, hon! ;)
Here is what I have learned: if you haven't walked it, you just don't get it.

I think it is human nature to think "I feel so bad for her, but I am so glad that's not me." Not everyone can put themselves in another's shoes and imagine the pain and suffering someone else endures.

True empathy is a gift.
Not everyone has it.
Some of us possess it innately and
those of us who have suffered become masters of it.
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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


#21 Juliebove

 
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Posted 20 March 2012 - 04:07 PM

You are not alone. My daughter and I both have food intolerances. We are learning to adjust to our new ones because they do change over time. For us anyway...

My own mom has them also but refuses to believe it. She has been tested. She will eat what she is not supposed to. Get sick. Then want sympathy. I believe that my dad has them too. He is constantly sick. I believe that my brother also has them because he gets sick after he eats certain things. The weird thing is they all keep eating that which makes them sick.

People have said the following things to me: "Can't you just make an exception this one time?" This in regard to eating pizza back stage at a dance recital. Regular pizza. Not gluten-free. To which I replied, "Sure if I want her to not be in the show and stay in the bathroom instead."

"A little bit won't hurt!" Or "That's such a small amount. It can't affect you!" Stuff like that. When they tell me this, I ask them which prescription they take that is the smallest. They will then either show me the pill or describe the smallness of it to me. Then I will look at them with a straight face and say, "Oh! Why don't you give that to her! (My daughter) It's small. That amount can't hurt her. Right?" They never do get it.

"Can't you just pick it off?"

I have even been laughed at when it comes to cross contamination. At family dinners, people will pass plates and bowls of things we can't have over our plates or expect us to handle those foods and get all pissy if a little of the food lands on our plate or gets on our hands. They do think we are being paranoid.

On of the biggest beefs for myself is that my mom expects me to serve up cake, ice cream and pie for family parties. I have a severe egg intolerance. Eggs make me so ill I will never ever eat anything that I think even might contain them. And these things almost always contain egg. I don't eat these or any dessert. So I don't feel I should have to be handling them.
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#22 llama3

 
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Posted 20 March 2012 - 05:53 PM

You are not alone. My daughter and I both have food intolerances. We are learning to adjust to our new ones because they do change over time. For us anyway...

My own mom has them also but refuses to believe it. She has been tested. She will eat what she is not supposed to. Get sick. Then want sympathy. I believe that my dad has them too. He is constantly sick. I believe that my brother also has them because he gets sick after he eats certain things. The weird thing is they all keep eating that which makes them sick.


Yeah. My mom is actually eating gluten-free, but I guess she doesn't react to CC the way I apparently do. Either that or she avoids CC so well that she hasn't encountered it, I don't really know. :unsure: To be fair, she did finally clean the toaster oven after I convinced her to. I'm realizing that it's probably hard for her to accept that I'm sick and to feel like she can't fix it, and that may be part of why she and my other family are acting this way.

I have other relatives that I am 99% sure have gluten intolerance but they keep eating gluten even though they have worse problems than I do. It's their choice. I have read that wheat can be addictive, like an opiate - I was definitely addicted to it before stopping gluten. No exaggeration, almost everything I ate was made of wheat. I had to stop eating it completely in order to start liking other foods. That could be a factor in some people's denial.
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#23 mamaupupup

 
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Posted 20 March 2012 - 07:29 PM

:) Thank you so much for being honest and so forthcoming about how you are feeling. You are sane and you are brave. I appreciate your post so much. I am the mother of fraternal twin girls who will likely be confirmed Celiac within a few days. I will carry your thoughts, feelings, and experiences forward with me as I help my dear little ones navigate the world ahead of them.

I hope that in addition to knowing you always have comfort and support from this amazing online community, I hope that you know that you are also making the world a better place!

Thank you!
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#24 curlyfries

 
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Posted 21 March 2012 - 02:26 AM

Finally I believed them, and even though I don't eat much gluten, my health has continued to spiral. Well in the last few weeks I have been back in the doctors office.... we have been looking at auto immune issues.




If you eat ANY gluten, you're health WILL continue to spiral. You need to be totally gluten free, 24/7.
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#25 llama3

 
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Posted 21 March 2012 - 06:56 AM

:) Thank you so much for being honest and so forthcoming about how you are feeling. You are sane and you are brave. I appreciate your post so much. I am the mother of fraternal twin girls who will likely be confirmed Celiac within a few days. I will carry your thoughts, feelings, and experiences forward with me as I help my dear little ones navigate the world ahead of them.

I hope that in addition to knowing you always have comfort and support from this amazing online community, I hope that you know that you are also making the world a better place!


Wow, thank you so much! You are very sweet to say that. I hope that you get the answers you need for your daughters.
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#26 mamaupupup

 
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Posted 21 March 2012 - 01:57 PM

:) It's true! :) Thank you again!
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#27 Ninja

 
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Posted 21 March 2012 - 07:02 PM

I just wanted to say: YOU are the only one who truly knows how you are feeling. Doctors, family and friends are there to help — not to tell/direct. You get to choose where, when and how they can assist. Sometimes, advocating for yourself requires a level of ruthlessness. :lol:

Maybe you could try writing a letter to your family? I've found that many times verbal communication can be easily overlooked by people who don't want to hear it, whereas written allows for more time and consequently, impact. :)

Good luck!!
~Laura
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#28 CR5442

 
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Posted 22 March 2012 - 04:27 AM

So feeling for you and your predicament. Families can be very tricky can't they?! I think mine only accept that gluten is bad for me because I was getting awful migraines right up until I stopped eating the stuff. Since then, I haven't had one migraine and it has been 8 months... touching wood here! It does help to keep things to yourself though, I have found. The more I talk about it the more my family roll their eyes! I guess you live with your family - so it isn't as easy for you to avoid possible CC even though they are gluten free in the main. Could you persuade them to give you an area in the kitchen to yourself and a shelf in the fridge. At least that way you could avoid any possible contamination. As for eating out... I don't really eat out any more. If I do I have things like salad with no dressing or baked potato - and then just eat the inside. There is not much that will get passed a potato skin! Sounds really dull I know but at least it might help.

What I found really helped is to cook and feed my friends things with no gluten to show them that it can be equally tasty etc. They do seem to be quite a lot more tolerant now. And I was wondering if your area has any gluten free restaurants. They do exist, even over here in the uk!
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#29 IrishHeart

 
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Posted 22 March 2012 - 04:36 AM

Sometimes, advocating for yourself requires a level of ruthlessness.
Maybe you could try writing a letter to your family? I've found that many times verbal communication can be easily overlooked by people who don't want to hear it, whereas written allows for more time and consequently, impact. :)



You're so right, Laura! There is a level of self-preservation here that is required--with family, friends, and doctors. Only YOU know your body best.

And I also agree about writing the letter. I wrote my family and friends an informative letter after DX and it really helped me to get it all down and it helped them to understand all that had happened to me and why it impacts them as well.

Of course, what they DO with that information is their choice. :)
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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


#30 llama3

 
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Posted 22 March 2012 - 07:42 AM

What I found really helped is to cook and feed my friends things with no gluten to show them that it can be equally tasty etc. They do seem to be quite a lot more tolerant now. And I was wondering if your area has any gluten free restaurants. They do exist, even over here in the uk!


There's a restaurant here that serves gluten free food (but they also serve glutenous food) and I've eaten there twice, both times had problems afterwards. I don't know if it was from CC or because I'm still having trouble with a lot of foods, but either way I'd rather just stay home and eat food I know won't hurt me. I'm finally at a point where I would rather eat my own food and feel better, even if it means offending someone. And, I am getting a lot better at cooking. :D


You're so right, Laura! There is a level of self-preservation here that is required--with family, friends, and doctors. Only YOU know your body best.

And I also agree about writing the letter. I wrote my family and friends an informative letter after DX and it really helped me to get it all down and it helped them to understand all that had happened to me and why it impacts them as well.


That is a good idea. I think I'll wait until after I've seen this new doctor. I'm hoping he can diagnose me on the basis of my elimination diet, as well as testing for what else might be wrong. I know it will be more convincing to others if I have a doctor's confirmation.
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