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How Long Will Insanity Defense Coverage Apply If I Hurt The Next Bubbly Person That Reminds Me About How Lucky I Am Since It Could Be Worse?
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wow. I knew it would happen as soon as I revealed to people my new diagnosis but geez, I am so disappointed by people's need to give advice instead of just offering a sympathetic ear. Advice from people that know the issues at hand is more than welcome but not from people who don't have a clue. Yes, I am aware that there are many gluten-free foods in the market now. I would have to be living under a rock to have not noticed. Yes, recipes can be adjusted but no, some things can not be replicated. How about a 'geez, that sucks I'll do my best to support you in food choices and learn about this disease and just be a good friend?' Yes, I know it will get easier but I want to grieve not gripe for a bit as I adjust. I am sure that a few of you can relate ;)

~ Jenny in mourning

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Jen Z, Don't allow yourself to get stressed about this new diet... Stress is a silent killer that steals minutes from our lives... IMHO, learn to deal with this issue ASAP... You have many friends here to help you and one will soon find that most foods can taste just as Great cooked Gluten Free...

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I know its frustrating.

Most people are trying to be helpful. You might find out about a product or a restaraunt you didn't know about. I usually just smile and say "Thanks" or "I love that product". If they try to give me medical advice that's really wrong, I will correct them. Like all the older ladies that "have Celiac" and tell my mom its OK to take the meat off the bun.

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I actually really do relate to this, but my advice would be to switch it around and try active listening. It's a skill I use in sales, and I've found it works amazingly well talking to people about their medical problems.

Sometimes, people really do know someone else that has celiac, and they have very useful advice that I didn't know about. Sometimes they're just excited to share,or they genuinely want to help. Other times, I've found, they're looking for YOUR help, to see if you know any doctors or treatments that are working better for you and might help their friend or family member.

If they're really wrong, or way off base, I'll gently correct them or steer the conversation in another direction if that doesn't seem to be working.

Lastly, my diagnosis (and it's many associated illnesses beforehand) has been the catalyst for some of the closest friendships I've ever had, some with people who had the disease and some who didn't. It CAN be annoying when someone wants to lecture you about celiac (alright, buddy, I KNOW that already). But I would say, for the most part, don't close yourself off, but open yourself up to the experience.

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Humans tend to want to find the bright side and often do not know what to say when they learn that someone has a serious disease. Many people are also inept at true empathy---just listening and being suppportive is often difficult. Not sure why--it should come naturally, but it doesn't. I think it is mostly because they are uncomfortable and want to try and "lift your spirits".

They "mean well" and because they may not understand the ramifications of Celiac, they think it's just "a food allergy" :rolleyes: and with a "diet change" and you'll be right as rain. :rolleyes:

The ones who "get it" best are the ones who live with it every day. ;)

(Man, I used so many "quotation marks" in this post :lol: LOL)

Seriously, though you will grieve a bit and then, you will embrace your chance to live a full and healthy, happy life off gluten. :)

If they are close friends and family, you COULD just say gently...I just need a hug and some sympathy, no advice just now, okay?

For the record, I have not had one single person in my life WANT to learn about celiac disease or the gluten -free diet yet (except hubby and my Mom)....and I was very ill for many years and suffered multiple health issues as a result of undiagnosed celiac. They do not know whether to be happy for me or not at this point. They are just relieved that I am not dying and losing brain function and muscle mass, etc..anymore. Some family members know they probably have it, too BUT do not even talk to me about it or wish to be tested, despite all the info I have sent them...ah, DENIAL anyone?? :blink:

It is frustrating-- and we can help you mourn a bit if you want. We all did it, too. Hang in there, hon!

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Yeah get that a lot, "well I'm sure they'll be able to do something gluten free for you"...yeah but how can you be sure I won't get CC'd which I'm 99% sure is what will happen?! Then you just look like a complete douche.

Agree that they are just trying to help but until gluten and specifically being CC'd (as avoiding gluten is an easy penny to drop in all but a few people's heads) is given more public profile, which I'm sure it will given it's increasing prevalence, then we'll just have to try not to blow a gasket every-time someone offers advice.

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BTW Jen, I think you may hold the record for the longest topic title EVER!!! :lol:

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BTW Jen, I think you may hold the record for the longest topic title EVER!!! :lol:

Not to mention one of the catchiest titles EVER! :P

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Not to mention one of the catchiest titles EVER! :P

Surprised me, too! I thought there would be a character limit! :D

If you are sent to a prison for the Criminally Insane, I doubt they will feed you gluten-free.

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Surprised me, too! I thought there would be a character limit! :D

If you are sent to a prison for the Criminally Insane, I doubt they will feed you gluten-free.

She will never be convicted! .... she could probably get dozens of equally annoyed celiacs (and you can sign me up, BTW) to testify on her behalf! :lol: :lol: :lol:

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Perhaps instead of hurting the clueless ones you could just tell them how lucky THEY are because it IS worse!! As Kareng says, you sure don't want that insanity defense to fail you :ph34r:

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Well your in the right place to gripe so feel free to vent all you need to. It is a big adjustment at first and if folks are not celiac it is hard for them to understand that it means a lot more than just not being able to eat wheat bread. We all have moments when we want to deck someone. Take a deep breath or grab a pillow and scream into it and then come here. Do keep in mind also that you are likely going through withdrawl if your newly diagnosed and that can make us very, very moody. That will pass.

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I moderate on 2 health related groups for dogs so I know subject lines need to stand out to be seen ;) Human doctors are not the only ones that don't listen to their clients- vets don't either so I along with others help the human learn how to care better for their pets specific illnesses. Luckily, I have a doctor that is great about following through on testing and so far I feel like I am getting good care. I am hesitant to go through my litany of aches and pains with him. After reading so many posts today, I see a lot of common ground with some of these odd symptoms I have been having and was just chalking up to the aging process. I plan to ask for bone density testing too since my mother was diagnosed with osteo at an early age.

And yes, there IS a character limit! I had to reword a couple of times :)

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Jenny I completely agree. And yes I realize it could be worse. I read in a book that someone with cancer would gladly trade places with me. ok well they probably would but what is wrong with saying "hey you know what that sucks?" I don't think I have had one person say that to me, I get the same responses you do.

I guess I just try to educate people about what is really going on. The newest way I have thought of to explain to people what is it like is to say it's like going to the pool with all your friends, but being told you have to stay in the kiddie pool while everyone else swims in the regular pool.

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I don't know, but I'll be the first one to use that defense. I don't really get that from my friends. It's the happy celiacs that get to me. No offense to any of you happy folks. Some of my friends have told me, "Damn. I'm sorry. That's gotta suck." And I feel validated and tell them, "yes, it does. it sucks a lot."

And I totally understand why some people are so happy to have an easily treatable disease when they thought they were dying. I get that. I would be happy, too, if I finally got a diagnosis after years of pain and suffering - especially one that would be essentially cured by adhering to a strict gluten-free diet.

But...my bitterness stems from the fact that I have a liver disease that will NOT be remedied by this diet - one that will likely - statistically speaking - cut my life short. So, I face a shorter life. And in that life, I'd sure like to enjoy every moment. Now, not only do I get to face the prospect of having a shorter life, I ALSO get to go through it denying myself of some of the things I get a GREAT deal of pleasure from. Since going on the gluten-free diet, I've been mostly bitter and miserable. Am I happy? No. Should I be? Probably. I understand that food shouldn't be so important to me. BUT. IT. IS. There has not been a day that goes by that I don't think about dinner rolls. I fantasize about them. I DREAM about them. They TAUNT me. MIL had us to dinner and on the table were DINNER EFFING ROLLS!! I felt like I had been sucker punched and I had images in my head of cutting my arms to hurt myself. Not to kill myself, but to maim myself to deaden the emotional torture I felt. The physical pain of hurting myself is FAR easier to deal with than being in the same room as those effing rolls. Obviously, that wasn't an option, and then I considered taking Rx pain meds to deaden the pain. They would make me not care so much. BUT I did manage to get through the meal, but not without a few tears. THIS IS NOT WORTH IT!!!!! I don't want to continue living my life feeling this way!

Thus far, there have been NO TANGIBLE benefits to going on this stupid diet. I've had a CT scan and my abdominal lymph nodes are STILL enlarged. Stable, but enlarged. gluten-free has done nothing to reduce them. Liver also stable. I've been stable for years, and it has nothing to do with my diet since I've been on the diet since March this year. I've not experienced more energy or better brain function. In fact, my ability to remember things has taken a massive nose dive over the past couple of weeks. This diet has been nothing but limitations. And I'm sick of it. AND, I'm giving serious consideration to ditching the damn diet and getting back to enjoying my life again.

So, yeah, I GET the insanity plea. I'm freakin' THERE! I should have started a new post, but I just don't have the energy.

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Oh, and I have made an appt to discuss this very thing with my gastroenterologist. I think he might ask me how I'm doing, and I will be telling him the truth. AND, I will try to tell him in the very nicest of ways that he can take this diet and shove it where the sun don't shine.

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Yeah, Suzanna, It is not really the gluten, but all the other sh*t that it has caused that you can't get rid of that's really the problem. I bet if you could get your liver back those effing dinner rolls wouldn't look quite so fabulous. :lol: If we could just be normal in every other way.....

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wow. I knew it would happen as soon as I revealed to people my new diagnosis but geez, I am so disappointed by people's need to give advice instead of just offering a sympathetic ear. Advice from people that know the issues at hand is more than welcome but not from people who don't have a clue. Yes, I am aware that there are many gluten-free foods in the market now. I would have to be living under a rock to have not noticed. Yes, recipes can be adjusted but no, some things can not be replicated. How about a 'geez, that sucks I'll do my best to support you in food choices and learn about this disease and just be a good friend?' Yes, I know it will get easier but I want to grieve not gripe for a bit as I adjust. I am sure that a few of you can relate ;)

~ Jenny in mourning

I posted a very similar thread (but without such a great, catchy title!) when my youngest child was diagnosed. I was sick and tired of hearing people tell me how "lucky" he was. I felt like smacking them! Now my older child and I have also been diagnosed. Not as many people think we're "lucky" anymore. :P

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As I get older I keep getting diagnosed with more chronic conditions. First ADHD(age 5), allergies and asthma(12), bipolar disorder(20), wheat intolerance and barley allergy(23) and I'm only 23 now. Out of all of those conditions the food ones are the easiest to deal with. My asthma could kill me randomly and forces me to take 2 inhalers daily PLUS carry a rescue inhaler everywhere I go. If I get a simple cold, it often becomes bronchitis and requires prednisone and additional asthma meds. Which makes me hallucinate and wrecks my brain. But the bipolar is worse since all of the meds effect your brain and none of them are easy on your body. Lithium ruined my thyroid. Getting diagnosed with a condition that doesn't require a million perscriptions was amazing. While a gluten free diet is difficult to follow, it's not nearly as bad as treatments for other conditions. Like cancer. My grandfather just finished chemo for lymphoma beyond having to deal with the side effects of chemo he was put on a strict diet of no raw foods everything he ate had to be fully cooked from meats to veggies. Watching him deal with all of that without any major complaints really put things into perspective for me but not until I got my wedding pictures back and saw how awful he really looked.

Sorry for the rant. Back to your regularly scheduled thread... It is human nature to try to look at the bright side of things. We are programmed from a young age to try to sympathise and relate to others. But, not to bring them down and to remind one about how much something sucks. People already know how much dealing with something sucks, what we do sometimes forget is to look at the big picture in life. There is a whole theory about the stages of dealing with a chronic illness, where you go through stages like denial and anger ending in acceptance. Not everyone goes through all of the stages. Not everyone follows the same linear path. Talk therapy has been said to be helpful in working to accept a new chronic illness.

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Luckily, I have a doctor that is great about following through on testing and so far I feel like I am getting good care. I am hesitant to go through my litany of aches and pains with him. After reading so many posts today, I see a lot of common ground with some of these odd symptoms I have been having and was just chalking up to the aging process. I plan to ask for bone density testing too since my mother was diagnosed with osteo at an early age.

And yes, there IS a character limit! I had to reword a couple of times :)

Jen,

Do NOT hesitate to tell him each and every symptom. He needs to know. (I was told my symptoms were "just" aging, or menopause, or anxiety, or stress or maybe fibromyalgia or grief (my dad had just died) or maybe this, that or the other thing...take this pill, take that pill, blah, blah, blah....nope, nope, nope !!! arrgh!! What Bulls--t; they were all celiac-related)

Here is a list of over 300 symptoms/conditions associated with gluten intolerance. I post this on every damn thread I can! ;)

http://glutenfreeworks.com/gluten-disorders/celiac-disease/symptom-guide/

I brought my own 3-page list of 65+ symptoms I had developed over the years (ones no medical person could explain)into my new celiac-savvy GI doctor and he said (emotionally) "And not one doctor found these debilitating symptoms relevant?" He was pissed. I said..."What's worse is-- my primary care doctor who watched me deteriorate for 3 years?---his own children have celiac!"

So, yeah, they need to know ALL the ramifications/complications of this THING!!!! Including decreased bone density. A DEXA scan should be done on you immediately after your DX so you have a baseline. Make sure he checks your D and cal/mag levels too. Be your own best advocate from now on-- because some doctors just do NOT get it.

I suppose it's true for us--that it COULD be worse... well, yes a tornado coming through your house--or being run over by a car--could be "worse". In fact, lots of "Worse things COULD happen", but that is not really the point. And sadly, some folks on here ARE battling worse conditions, such as lymphoma or thyroid cancer as a result of un-DXed celiac disease.

But, in saying these words to you, it lessens the emotional and physical pain you are--- understandably ---enduring RIGHT AT THIS MOMENT--at having been diagnosed with a potentially fatal auto-immune disease that often causes major health complications. For me, my life in 4 years of celiac/gluten hell pre-DX was a freakin nightmare --my life came to a complete stand-still as I searched endlessly for a reason why I was so ill and in horrible burning pain. I would not wish what happened to me as a RESULT of this "you're lucky since it could be worse" disease--- on anyone.

No one would dare say these words to me as I suspect my normally even-tempered, good-natured self might go ballistic. :unsure:

There's nothing "lucky" about any of this. There are many who have suffered immeasurably from complications from celiac---not just physically, but emotionally--some losing their jobs, their significant others, and nearly, their minds... and yes, some even developing the "it just got worse" diseases.

Until the rest of the world is educated on the REALITY of Celiac and what it can do to people, this kind of thinking will continue. I get REALLY irritated, for example, when it is referred to as a "gluten allergy"...HUH??!! <_<

The "happy-go-lucky" celiacs someone else referred to??---I think she meant maybe ones like say, the sunshiny Elizabeth Hasselback??--I'm sorry, but she is not the REAL face of Celiac. It's the people on here who have suffered greatly FOR YEARS and who continue to battle the drastic consequences of celiac disease that are the REAL faces of celiac.

Sorry for the extended rant, but geez, this just pisses me off. I swear, I need to write a book that tells it like it truly is. I have kept a journal of my bizarre descent into health hell over the years and my experiences with the inept medical system that failed to diagnose me (and so many others) with the disease that was underlying all of it.

Jen, take care of yourself! Know that you are allowed to grieve and you are certainly entitled to be pissed off, too. You'll go through all the stages--denial, anger, bargaining, depression, and eventually, acceptance. Give yourself some time; you just got some life-altering news and it's pretty upsetting.

We're here for you, kiddo! ;)

Cheers,

Irish

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