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Newly Diagnosed Stress


Emme999

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Emme999 Enthusiast

My blood test results came back positive a few days ago and I have become almost entirely non-functional. Does everyone go through this when they find out? I think I've looked at over 843,629 websites in just the past 72 hours. I can't seem to think about anything else.

I told my boyfriend about this and his reply was, "This is not such a big deal. It's just food!" But it feels *huge* to me. Am I overreacting? I mean.. am I?

I think it's great that they've finally figured out what's wrong with me but now I feel overwhelmed, scared, confused, and alone. My family and boyfriend seem to be highly annoyed whenever I talk about it - but it's all I can think about.

Another bad thing is that it's finals week for me at school! I've been working so hard all semester and now I'm afraid I'm going to bomb all the finals (I actually did bomb one already :( )

Any advice? Can anybody calm me down?

Please help! Tell me how you got through this if you can - or if I am just being oversensitive.

Thanks!

- Michelle

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KaitiUSA Enthusiast

Your not being oversensitive. It's a HUGE deal! It may seem like an easy change but it's not. Your boyfriend and family don't seem very supportive. You learn real quick who is on your side. My extended family think I overreact. Your boyfriend needs to realize this is serious if you don't get all the gluten out of your diet....so does your family. This is an autoimmune disease where your body will attack itself and slowly kill you. If your boyfriend can't get that and support you then maybe you should reconsider if he is the right guy for you. If this was him who was just diagnosed I'm sure he would do the same thing and find out more about what he can and can't have. At first it is very overwhelming..but it gets easier when you learn more. Your family really should be tested considering this is genetic but you can lead a horse to water but you can't make em drink.

You need to explain this to them and see if they are on your side or not. You need support right now not people being annoyed at you for trying to figure out what you can and can't have.

Alot of people on here have been through this with family and friends and I know what you are going through...hang in there :D

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Emme999 Enthusiast

Kaiti,

Thank you so much. It means more than I can explain to have someone just allow me to feel what I'm feeling and have so much compassion. I really needed to hear (read) what you said. I really needed to have someone who's been there tell me that it's okay to feel this way.

You have posted a lot of replies to my questions in various places and I am really grateful. I can't thank you enough.

- Michelle

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KaitiUSA Enthusiast

Michelle-

We have all ben through it and we all need people to understand. I really love this site...it is filled with some of the most awesome people. I am happy actually that I have celiac, if I didn't have it I would not have got to know so many wonderful people. If you need to talk or anything feel free to email me. :D

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tarnalberry Community Regular

You're not overreacting, but you probably are a bit sensitive - and that is in no way a bad thing or something you should feel bad about! Starting out on this diet, particularly if you haven't previously been highly aware of ingredients and so forth - but even then, IS a pretty huge deal. It's a huge deal because the world we live in is a wheat-eating, wheat-drinking, wheat-breathing, wheat-saturated one. (Oh, wait... did I start ranting there? ;-) lol!)

Imagine if your doctor told you that you couldn't ever drive a car again. You can make that change - there's walking, biking, buses, taxi's, friends; but it's still a HUGE change if you're used to driving and live somewhere that isn't conducive to walking/biking. But then you do it, and you get used to the new walking paths, best bike routes, and get the taxi company on your speed dial. This is much the same - a big mental shift at first, one that can be hard to understand, let alone to make.

Give yourself some time to get educated and get advice from all the old-bies. :-) As you get started learning about this stuff, remember one very important thing - you really are eliminating just four things from your diet - wheat, barley, rye, and oats. That's it. Yes, because it's used in a lot of things, that means that there are other products you can't have, but there's still a LOT that you can. Make use of all the naturally gluten-free whole foods for now to make the diet easier. (Want a snack? Pick up a piece of fresh fruit or a fresh vegetable. Want a grain with your grilled chicken for dinner? Make some rice. Want something good for breakfast? Make a smoothie from whole fruits. All naturally gluten-free.)

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stef-the-kicking-cuty Enthusiast

Hello Michelle,

yes, it's very crazy at the beginning. But you will get the hang of what you can and can't eat pretty soon. And if not, you can always come to us, the best gluten-free message board in the www :lol: . There's always somebody who understands.

With your boyfriend and your family, that can just be a plain missunderstanding. Before I was diagnosed with celiac nobody in my family ever heard about it. When I came home from my doctor 07/21/04 and told my husband, I couldn't eat wheat, rye, oats or barley anymore, he declared me for being nuts. Honestly it took me weeks to explain to them what this is, but now everybody is fine and understands. The first few days everybody thought like your boyfriend. "Oh, it's just food..." and "a little bit won't hurt...", until I provided (of course only material read by myself and censored before handing out) something to read for them. Then the understanding came slow but sure.

Maybe it helps to join a celiac support group and take your mom to one of those meetings with you or so.

Stef

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Guest GFLisa0405

Hey Michelle, I know exactly how you feel. I'm pretty new to the gluten-free diet, and going through exams this week too! I'm also finding out I have intollerances to other food (hoping its just temporary thing while my stomache is healing) but it does get frustrating. I know there are a lot of other choices (and I didn't even eat that much gluten before hand, just cereal-and i lived off it first semester. now suprisingly the cravings for it are almost gone) but sometimes it does get annoying to have to check every ingrediant. It also sucks that other people don't get it, and to watch to watch ure roomates eat gluten filled foods 24/7. It does get easier though, and at least your doing good for your body by going gluten-free. Anyways, just letting you know there are other people out there that understand.

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uclangel422 Apprentice

I am also fairly new to this and went through the same shocked, shutdown feeling as you did a couple weeks ago. It was like everything started moving in slow motion or something, I really just wanted to leave work and lock myself in my room for a week and sleep.

Eventually when you read more and start getting into the swing of things, it gets better.

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FaithInScienceToo Contributor

Hi, Michelle -

You've certainly come to the right place, because we all have our own stories and accompanying angst to deal with and share.

Mine:

I did really well for about 2 months, then I didn't want to think about gluten-free food anymore...not that I wanted any foods with gluten - I didn't...I just felt sorry for myself at that point...tired of explaining 'my condition'...tired of thinking about it so much...of even HAVING TO think about it...

...so, I ate poorly for a few days...potato chips, etc...and forgot about eating healthy gluten-free foods, and it passed, as I missed the healthy foods I came to enjoy, and which finally nourished my body properly...

Now, I am used to being 'a celiac,' but still have my moments of frustration...but not with the disease, nor with myself anymore...but with others who don't understand that it IS a big deal...to not be able to eat just anything...like most Americans, and that it IS difficult to stay gluten-free...Still, it is also a big step in maturity, no matter what one's age to take FULL responsibilityfor one's health...so, in that regard, "Congrats!"

Best wishes,

Gina

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sdore Enthusiast

I felt the same way and I posted a message similar to yours. I just got tough. If people don't like what I have to say oh well. I can't help it. My boyfriend was the same way too. Not totally supportive, and he still gets to me sometimes when he says eat this and he forgets that I can't. I told him to get with the program or else. I threatened to make him read my book so HE would understand more.

I am getting better now, I frankly don't give a damn what anyone else thinks! It's my life and by god I am going to live it with or without you.

Whoo... Give it time! I thought I would die when I first found out my problem, but it gets easier! You will soon find bunches of food you can eat and it WILL get easier. As for finals. Try your best, it's all you can do and don't let the food thing stress you because it will get better.

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Emme999 Enthusiast

Wow. I would be so alone without you guys. I can't even explain how much you are helping me.

I had a huge fight with the boyfriend this morning and it might just be the end of our relationship. He is paralyzed and obviously has some major problems of his own - but I have been loving him & supporting him for over a year. I don't understand why he can't love & support me on this. He told me that I need to just get over it and stop thinking about it all the time. I found out Friday! How the hell am I supposed to not think about it all the time? It's not like I've been dwelling on this for weeks or something. So I said, "when you found out about your paralysis were you able to not think about it?" He was outraged that I would compare the two. :( I didn't mean to say that this will be anywhere near as difficult to deal with as the paralysis but I just wanted him to realize that when you find out something so serious it's hard to get it out of your mind. He said, "My paralysis is not like your not being able to eat what you want."

So, that's all it is to him - me "not being able to eat what I want" - what a joke I must seem to him!

I took him some papers to read about celiac and a few hours later (when I stopped by his house for a moment) he hadn't even touched them. I guess that shows how interested he is in my life, uh?

I am really having a rough week! I'm afraid I'll be failing a big final tomorrow :( Please send support. I need your kind words now more than ever.

Thanks

- Michelle

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angel-jd1 Community Regular

Hang in there!! Sometimes things happen for a reason. This boy may not have been the right boy for you if he is treating you like this. OR he could just be trying to deal with it also, but no clue how to tell you he is worried. Either way, things will come around and you will be a stronger person because of it.

-Jessica :rolleyes:

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ianm Apprentice

For me it was a huge relief to finally know what was wrong. I was sick for 36 years and had no idea why. It took a lot of work in the beginning to get into the habit of gluten free eating but it isn't as hard as it first appears. It just takes some time and practice and we are always here to help. It is not the end of the world. I like to think of it as a new beginning to a much better way of life.

Your boyfriend sounds like my ex-wife. That is why she is now an EX and not a Mrs. I don't give a rats rear end what other people think of my eating habits. It is my body and I will protect it by any means necesary! :angry: If other people have a problem with that then they just can't be a part of my life. Real friends don't let celiacs eat gluten!

It does get better, MUCH better.

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pixiegirl Enthusiast

Hmmm I feel like there is something wrong with me.... I didn't go thru what all of you are describing! I do agree its a big deal, its wheat world out there! And I hate the fact that eating away from home is difficult at best, but I didn't freak out (I'm generally not known too, so maybe thats it).

I guess because I felt so terrible for so many years that when I went on a gluten-free diet and after 4 days for the first time in years I didn't have the runs, well I was relieved to know the rest of my life could be lived without knowing the location of every toilet in a 20 mile radius.

To me I was so happy to finally have an answer. So try and keep in mind that you have finally found the road to waaay better health. But I won't down play the fact that it takes some time to figure it out, there is a lot to learn, you WILL make some mistakes... but don't let them get you down! We've all been there! You can do this and you will figure it out and once you do it really does become like second nature.

I've loved the support of this list too, everyone here has been such a help to me!

Best, Susan :D

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plantime Contributor

Michelle, Comparing his paralysis to your celiac disease looks like comparing apples and biscuits at first, but really it is not. They are both limiting, both life-changing. Both require drastic changes in life. The difference is that people can see and comprehend paralysis. Perhaps he is not the guy for you, maybe he just needs time.

You are not obsessing about this. You have to think about every bite you put in your mouth, just to take care of yourself. It takes time to adjust and for reading labels to become second nature. We are happy to help in any way can, even if it just means "listening" to you vent!

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KaitiUSA Enthusiast

I agree, they are both very life changing things to deal with. It shows how much a person cares about you when your going through a hard time. Your boyfriend seems very unsupportive.

You are really not over obsessing. As said in a previous post...it is a wheat world out there..we literally have to think about every bite we take...this can be very serious and life threatening if ignored. Even skin products and cosmetics can have gluten and can get into our mouth..we literally have to check everything.

For him not to care one ounce and try to help and support you really shows alot...and you try to give him papers about it and he still won't hear it ormake any effort. Sounds to me like you should be glad you found this out now. He sounds like my ex too...he didn't want to hear it..rubbed it in my face..etc.

Hang in there...it'll all work out for the best for you. :D

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uclangel422 Apprentice

I have encountered the same type of resistance from people who have other illnesses and from those who are well. They think that i am just mourning the loss of sandwiches or something. They dont understand why i can feel so depressed about this.

But conversely I have found myself getting angry with people also, especially dieters. My sister is thin but on some crazy diet of her own concoction where she wont allow herself to eat anything but strange food combinations. I have been getting so angry and frustrated with her because here she is allowed to eat what she wants and not feel sick.

I guess i need to change my way of thinking too.

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Emme999 Enthusiast

Are you *sure* you want to listen to me vent? ;)

I'm afraid the boyfriend might have chosen to opt out of this relationship. He isn't answering my calls (has caller I.D.) and doesn't return my messages. So.. I guess that's it. It really sucks because we are both grown ups (he's 34 and I'm 32) and we have both been through a ton of other stuff already - to think that he wont deal with this just blows my mind. We celebrated our one year anniversary last month. And let me just tell you, dating someone who is paralyzed takes some serious adjustment/understanding/patience. I don't care that he's paralyzed because I love him and it's not his fault that this happened to him. But it's not *my* fault that I have Celiac. I just don't get it. Maybe having a celiac girlfriend is just too much stress for him with his already stressful life. But damn it, I am willing to deal with his stuff even though I've got a vast array of stressful things in my own life. I thought that was what love was about: being a safe place for your significant other when everything else hurts. I guess he doesn't want to be my safe place anymore :(

Maybe he just needs time to think through all this. Maybe I hurt him too much with my comparison comment.

Maybe he should set his own issues aside for a moment and realize that right now *I* need someone to hold me without judgement.

I have a little sign in my car that I look at every day. I've had it for a long time (long before celiac). It says: "Be kind. Everyone you meet is fighting a hard battle."

I really appreciate all of you who are helping me to get through this. Thank you for helping me fight this one.

*hug*

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KaitiUSA Enthusiast

Aww it sounds like your going through a hard time. But if he thinks it's too stressful to have a celiac girlfriend then does he think its a piece of cake for you to deal with his paralysis? You can't help you have celiac and he can't help he has that...its the same concept ..just you accepted him but he didn't accept you.

One year is a long time to go with someone and then just up and leave over something that small that can be worked through. Life is filled with many battles and this is probably minor to some of the things you would have faced. How he handled this may show something.

If you want the relationship to work still maybe you should go over there when you know he will be there and just sit down and talk and really ask him to support you and what you are going through.

If he was my boyfriend he wouldn't be anymore. Being celiac is a part of me..if someone can't accept, support, and help me on that then they are not right for me.

I know breaking up is hard especially after a long term relationship. I wish you the best and I'm sure it will all work out for the best for you. I'll keep you and your situation in my prayers :D

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ianm Apprentice

It is better to find out now than after 14 years of marriage and one child later. I found out the hard way that you don't want to be involved with someone who thinks that "for better or worse" means that I had to fix her problems but I had damn well better not have any of my own. Right now I would recommend that you focus on getting your health back on track. This too shall pass.

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Emme999 Enthusiast

Thank you Ianm, I am sorry that you had to go through that with your wife. I cannot imagine what it would be like to be with someone for so long and then face that kind of reaction. Thank you for your understanding.

Kaiti - It's weird because I know that he cares about me, in the past when he has seen me cry I have always felt his heart reaching out to me, and seen in his eyes that he doesn't want me to hurt. I just don't understand why he thinks this isn't anything worth crying about. We have been living together so I will need to go to his house at some point to get my things. My last final is tomorrow - maybe I will go over after that. Or maybe I should give him some more time. What do you think?

Why is life so complicated?

Geez, can I get a time-out or something??

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plantime Contributor

Hey, Michelle. Things will be all right. They will work out, one way or another. Something I've learned is that someone can be grownup without being mature. After your last final, go over and talk to him. Find out for sure if he wants to break up with you. You have to take care of yourself, and you need to expend your energies getting yourself better right now. Go ahead and vent here. {{{hugs}}}

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watkinson Apprentice

I don't know, maybe I'm the weird one, but I was thrilled when I found out that I had Celiacs. :D

I had been sick since I was a child, and the digestive problems started when I was a teenager. Rashes, sleeplessness, depression, horrible crippling pain in my ankles and lower back, hands falling asleep at night, elbows feeling like they were chronically broken with shooting pain going down into my hands, and down my legs into my feet. My hands and feet were tingly and numb. Stomach attacks that felt like last stages of labor mixed with an entire torso charlie horse. sleeping only 1-2 hours every night, tossing and turning because my hips hurt so bad, hypothyroidism, fybromialgia, peripheral neuropothy and a miriad of other problems. :(

All these problems and more started in my early 20's and progressivly got worse until I used to beg God to let me die. I knew I could not live many more years.

When I found out about a year ago that I had celiacs I balled my eyes out. Not because I was sad , but because I FINALLY knew what it was. and not only that....it was "cureable" !!! :D:lol: I mean all I had to do was give up gluten. Big deal, It's just food. There's plenty of great food that is gluten-free. EVERY other autoimmune disease out there has NO CURE. We are the lucky ones :D As long as we are gluten-free we are fine. Life is good. :D It was like a miracle for me. All digestive problems cleared up within a few days. The hypothyroidism corrected itself I lost 25 or 30 pounds. (5'5 and 120 pounds now). Over the last year all my other problems have gotten remarkably better. I expect that as the years go on that I'll do nothing but get better still.

Like everyone else says though...I don't get your boyfriend. <_< It sounds like he just doesn't get the disease. Like maybe he thinks your choosing some goofy diet, that he thinks is nuts or something. More studying on his part maybe.

I truly believe that as you start to feel better that you'll see how lucky you are and you'll be excited about being a celiac rather than scared and upset. Sounds crazy I know <_< but give it awhile :P

Good luck, Wendy

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Emme999 Enthusiast

Thank you Wendy.

And you are absolutely right - I *am* lucky to have a treatable disease. I am excited to find out what it will be like for me once I am off gluten. I desperately hope that it will help with the depression and the osteoporosis and the dental stuff and fatigue and waking up looking skinny but then looking fat 10 minutes after I eat something. (Does this happen to all celiacs?? My stomach does this funky buddha thing...)

I am calming down now that I've had a little more time to adjust to the idea of having celiac disease. I am still working on being happy about it though - that's kind of a jump right now.

As for the boyfriend... well, if he doesn't come around then I guess there's not a whole lot I can do about it. I love him and don't want to lose him - but I also don't want to be with someone who thinks it's too much effort to love me. You know?

I told another friend of mine that now that I've got this I don't think it will be possible to find *anyone* who would be willing to be with me (with celiac and all of my other food allergies). He just laughed and said, "Honey, you couldn't get here fast enough." :) He's just a friend and I am not looking to get with him - but those words made me feel so much better about myself & everything that's going on.

If I lose my boyfriend I am going to start dating *myself* and just love the hell out of me! (literally!)

Everything will be okay, I'm sure. I just need to figure this out. Thanks for every bit of help/support/love/etc. that you guys give me. You are keeping me alive.

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steadyed Newbie

I think everyone here has gone through a similar experience. My wife does get annoyed at times if I mention my celiac. My side of the family doesn't understand exactly how I got it. (I can lay every single penny I have that each one has the gene and probably win big.)

What I do know is that people are worth more that they are generally treated, and deserve the respect and consideration due them as humans, especially if they have to contend with disease or disability.

Ed

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