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shimo

Is It Easy To Get Someone That Actually Understands Us?

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Hi everyone,

Believe it or not, I broke up with my girlfriend who was living with me 3 days ago due to "our" condition.

To get this story short, she would not understand me at all and she accused me of being exaggerated, and that she didn't believe in such thing as contaminations etc.

We weren't going that good anyway, especially after I started to have symptoms which actually made me not want to get out of my home for a few months (i would but not as often as i would know i would be sick no matter what i ate - until i found out what i had of course).

Plus at the start my doctor thought I had IBS... so you know how frustrating it can be.

My question here is... ironic question but... will I only get along with a Celiac girl too?

I mean, it's extremely complicated to explain contaminations etc to other people. Even a few friends of mine thought i was exaggerating... (some of them understood it very well though - the intelligent ones I guess).

For someone to live with a Celiac, they will have to give up a lot of stuff to avoid contaminations. Most people just think we shouldn't eat it and we're fine...when this is not exactly the case.

Do you get my point? Did someone here dealt with the same issue?

Thanks!

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I'm not sure my husband will ever understand. He does try, but I'm still working on the CC with him. We just celebrated our 33rd wedding anniversary on the 14th. He went on the computer looking for gluten free menus at restaurants. We ate at Carraba's. The waiter assured me that everything I ordered would be marked gluten free. I have only been gluten free the beginning of the year. I did have negative blood work, but I had been avoiding gluten subconsciously for the last year. I do have a little sister that is a diagnosed celiac since she was a year old. I look at all the problems that she has. My parents had been told she would outgrow. It looked like she did for awhile. Of course we all know better now. She has many health problems, many of which I think were caused by gluten. She will still eat it. I can't understand why. I don't get the same symptoms as her, but I try so hard to avoid it. I've had some accidental glutenings. After 2 weeks being gluten free, I couldn't believe how much more sensitive I became to gluten. I do hope that you find someone that understands you. Good Luck

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My husband's been great with it. He doesn't believe that anything that makes me sick is gluten - but that's a very logical stance as lots of things can make a celiac sick besides gluten! He's careful with contamination, and is happy enough to have our joint meals gluten free as long as they are edible. :) The main feature here is that he respects my decision, not that he believes me. He may think that I might be able to try oats (he knows the 10% statistic, and he's got the same physics background and current engineering job that I do), but understands that I'm hesitant and it's my choice and I have to deal with the consequences. Even with limiting soy, he doesn't have to believe, he just has to respect my choices.

Now, if I was limiting him going out, or us going out together, things might be different. If we're going to go out, and I don't know that I'll be able to eat anything, I'll either call ahead and do anything possible to make it work, or I'll eat ahead of time (or bring something with me, if it's to friends' or something like that) - I won't be antisocial. Food doesn't dictate my life!

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My husband's been great with it. He doesn't believe that anything that makes me sick is gluten - but that's a very logical stance as lots of things can make a celiac sick besides gluten! He's careful with contamination, and is happy enough to have our joint meals gluten free as long as they are edible. :) The main feature here is that he respects my decision, not that he believes me. He may think that I might be able to try oats (he knows the 10% statistic, and he's got the same physics background and current engineering job that I do), but understands that I'm hesitant and it's my choice and I have to deal with the consequences. Even with limiting soy, he doesn't have to believe, he just has to respect my choices.

Now, if I was limiting him going out, or us going out together, things might be different. If we're going to go out, and I don't know that I'll be able to eat anything, I'll either call ahead and do anything possible to make it work, or I'll eat ahead of time (or bring something with me, if it's to friends' or something like that) - I won't be antisocial. Food doesn't dictate my life!

You apparently didn't notice it but I was limited going out because at that time I didn't even know what was wrong with me.

If I knew it was food I would certainly not be at home all day just waiting for symptoms to appear.

That was pre-diagnosis. If you don't know what's wrong with you, you dont even associate that with food in the first place. Plus I never had heard about Celiac Disease before. I couldn't just stop eating for the sake of going out, that's absurd. The same way you say food doesn't dictate your life I would say at that time that going out wouldn't rule mine neither.

Try to understand it from the point of view of a non-diagnosed person.

I might have generalized it but I wasn't a home rat at all. I would get out, I would just not go for something I would know that would take a lot of time because I would risk being sick. Not to mention the anxiety attacks I had due to that as well, all because I was feeling pretty useless and hopeless, as the doctors didn't know what was wrong with me.

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I'm not sure my husband will ever understand. He does try, but I'm still working on the CC with him. We just celebrated our 33rd wedding anniversary on the 14th. He went on the computer looking for gluten free menus at restaurants. We ate at Carraba's. The waiter assured me that everything I ordered would be marked gluten free. I have only been gluten free the beginning of the year. I did have negative blood work, but I had been avoiding gluten subconsciously for the last year. I do have a little sister that is a diagnosed celiac since she was a year old. I look at all the problems that she has. My parents had been told she would outgrow. It looked like she did for awhile. Of course we all know better now. She has many health problems, many of which I think were caused by gluten. She will still eat it. I can't understand why. I don't get the same symptoms as her, but I try so hard to avoid it. I've had some accidental glutenings. After 2 weeks being gluten free, I couldn't believe how much more sensitive I became to gluten. I do hope that you find someone that understands you. Good Luck

Thanks a lot for the kind words. Me too I feel more sensitive to it everyday which is strange especially with all the bread, cookies and all the rest I was so used to eat. But so far I am going pretty well with it.

I won't touch anything gluten-related and pretty much like yourself I do not understand how your sister can still eat it.

She will probably learn the hard way just like most of us did. :(

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You apparently didn't notice it but I was limited going out because at that time I didn't even know what was wrong with me.

If I knew it was food I would certainly not be at home all day just waiting for symptoms to appear.

That was pre-diagnosis. If you don't know what's wrong with you, you dont even associate that with food in the first place. Plus I never had heard about Celiac Disease before. I couldn't just stop eating for the sake of going out, that's absurd. The same way you say food doesn't dictate your life I would say at that time that going out wouldn't rule mine neither.

Try to understand it from the point of view of a non-diagnosed person.

I might have generalized it but I wasn't a home rat at all. I would get out, I would just not go for something I would know that would take a lot of time because I would risk being sick. Not to mention the anxiety attacks I had due to that as well, all because I was feeling pretty useless and hopeless, as the doctors didn't know what was wrong with me.

deep breath - I'm talking about the present. :) you did what you thought was best, and I didn't intend to say that you were wrong for that. it's all we can ever do. we do all feel like that sometimes - well, I know I do. and sometimes, you have to make yourself do it. and sometimes, you have to recognize your limits and not do it. (I say that with a number of non-celiac conditions myself. it's never easy.) I'm sorry I misread your post regarding timing of the 'going out' issue becoming such a huge problem between the two of you.

it's unfortunate that your girlfriend couldn't cope, but it's not uncommon. some people are selfish and won't understand, some people just can't fathom it, and I'm sure there are other reasons as well. chronic illness - which when you were undiagnosed was simply a mysterious chronic illness - drives many people apart for the very reason that it is so difficult to understand and to deal with, especially on the part of the healthy person who can't understand why the sick person (sick, but undiagnosed) can't just get better.

there are examples of both good significant others, ambivalent significant others, and ... not-so-good significant others when it comes to dealing with the lifestyle change and health effects involved (which become less). but it's less to do with celiac disease, as it is to do with the human being who is the significant other. it's a similar situation for many, many other chronic conditions. (which is just my way of saying "don't give up all hope". :) )

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I also have a wonderful husband of close to 30 years. He has been very understanding, even about being careful with CC. The only frustration he had was when he was caring for guests while I was away, and they had gluten foods. I came home and was worried about what gluten had or had not touched and what I could and could not touch. (Though he had been trying to be careful) He said he wouldn't dare do that again. I felt bad, because he has really been super--and I didn't want to discourage him from doing this himself. Actually I think I was more anxious than it warranted because I was also upset about something else.

Normally he only eats gluten-free at home, other than he buys some crackers that he will carefully eat. He has not had one word of complaint in spite of all of our trial and errors learning to make gluten-free foods. He wants me to be well, and is pleased that I am making progress.

We are still working out the social situation because I can almost not eat out here in NE China. Sometimes friends bring take out and eat with me at home. Sometimes I take my food and go eat with them. Sometimes I just get a bowl of rice and a drink that is safe. Sometimes I elect not to go and still encourage him to go.

The bottom line is that when you find someone who truly loves you, it is in both in sickness and in health. You face it together and work things out. So I think when you find someone who is mature enough, who loves you, and when you both learn well how to communicate around difficult issues, then it will not matter if she has to be gluten-free or not.

I am sorry you have had to go through this because it is a significant and painful loss. Perhaps thinking about what in the relationship you yourself could change (you can't change your body and what you need), and learn from that as you face the future. Also let go of what belongs to her--because it sounds like she definitely has some issues. That's just my two cents--take what is useful and ignore the rest! ;)

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Thanks a lot for the encouragement and understanding.

You're right she did have issues and this wasn't only about my disease, several other things happened as well but this was like the final drop.

Strangely enough I have improved since she left (probably due to less stress), so sometimes I think she was a real problem for me. Even though I must add: I did love her, and still probably do but I avoid thinking about her or when I do I just have to remember the stress she's put me to and the pain goes away.

I'd like to add to this description that i'm a 23 year old living alone and about 1000 miles away from my family - so no support from them, with the exception of phone calls etc of course, but that's not enough sometimes.

So, I am much more fragile then most people out there because I have no one to rely on except my friends, and this is probably why I was with her for so long too. (and why she thought she could do whatever she wanted to me and I wouldn't ask her to leave)

Not everything's bad though, I got a wonderful and super-understanding doctor who appears to have a great compassion for me, probably because he knows I'm all alone here. Despite all the others failing on the diagnosis etc, this one really made me believe that after all not all doctors are careless (even though I never really thought they were - we can only blame their schedules, not themselves). Actually most people on his office have been great with me.

But yeah, i had to give up the free clinics to get diagnosed properly :P

Thanks a lot for that post, mftnchn. It did lit up a few lights here :)

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deep breath - I'm talking about the present. :) you did what you thought was best, and I didn't intend to say that you were wrong for that. it's all we can ever do. we do all feel like that sometimes - well, I know I do. and sometimes, you have to make yourself do it. and sometimes, you have to recognize your limits and not do it. (I say that with a number of non-celiac conditions myself. it's never easy.) I'm sorry I misread your post regarding timing of the 'going out' issue becoming such a huge problem between the two of you.

it's unfortunate that your girlfriend couldn't cope, but it's not uncommon. some people are selfish and won't understand, some people just can't fathom it, and I'm sure there are other reasons as well. chronic illness - which when you were undiagnosed was simply a mysterious chronic illness - drives many people apart for the very reason that it is so difficult to understand and to deal with, especially on the part of the healthy person who can't understand why the sick person (sick, but undiagnosed) can't just get better.

No problems at all, you're forgiven ;)

Yeah you actually brought up one of the real reasons for that to happen. (When you said some selfish people cannot understand why you can't get better and they eventually lose all their patience with it).

Well at least I made a good move, since she would probably never understand this issue anyway. She was super healthy, I actually never seen her with a cold. So this kinda highlights your theory in my mind - super valid theory.

Thanks again :)

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Guest Happynwgal2
Hi everyone,

Believe it or not, I broke up with my girlfriend who was living with me 3 days ago due to "our" condition.

To get this story short, she would not understand me at all and she accused me of being exaggerated, and that she didn't believe in such thing as contaminations etc.

We weren't going that good anyway, especially after I started to have symptoms which actually made me not want to get out of my home for a few months (i would but not as often as i would know i would be sick no matter what i ate - until i found out what i had of course).

Plus at the start my doctor thought I had IBS... so you know how frustrating it can be.

My question here is... ironic question but... will I only get along with a Celiac girl too?

I mean, it's extremely complicated to explain contaminations etc to other people. Even a few friends of mine thought i was exaggerating... (some of them understood it very well though - the intelligent ones I guess).

For someone to live with a Celiac, they will have to give up a lot of stuff to avoid contaminations. Most people just think we shouldn't eat it and we're fine...when this is not exactly the case.

Do you get my point? Did someone here dealt with the same issue?

Thanks!

I just came home from work, and am very tired, but I want to answer you, shimo.

I was married for two very long years to a man who did not understand that I could get sick from food. We have now been divorced for seven years. If a boyfriend or girlfriend - or as with me, a husband - does not understand how serious Celiac is, and are not willing to accept that you get REALLY sick when you eat what others consider "normal" food, they do not really love you. That may sound harsh, but think of it this way: if you came home one day and told them you had just been told you have cancer, wouldn't they support you?

Well, Celiac could LEAD to cancer, and a long list of other illnesses that could be very serious indeed. My second husband had a lot of issues I could not deal with, but one of the most hurtful things he did to me was tell me I was not sick when I could barely stand up and walk because of severe stomach cramping after eating. He was abusive and unkind, and he finally left after I asked him for months to just go.

Nobody has any right to tell you that you are not as sick as you are when you have gluten. If they do, they are ignorant and they certainly do not care much for your welfare.

You will find another girlfriend who will be more understanding - yet, I am sure that you feel a loss since you just broke up with the girlfriend you probably cared very much for. Hang in there, and don't give up. :)

There are good people out there who will help you out. I have experienced that in the past three weeks while going through a very demanding seven week class at work for a promotion. One of my class mates brought me two bags of gluten free cereal that she found at Trader Joe's here in Portland. I was deeply touched, and it turns out that the cereal has already become my favorite breakfast.

Our class instructor has listened to me turn down Tootsie Rolls and other goodies that have been passed around, and a couple of days ago answered a question for me, when somebody said: Oh, you can't have Tootsie Roll, huh? (I LOVE Tootsie rolls, but they are a big NO NO) The instructor said: NO, she can't - I read about Celiac online, and did not realize how serious it is.

I felt so good hearing that somebody had bothered finding out about something that interfers with my ability to go out for lunch with my class mates. So there are a lot of people who are willing to learn and accept us and our restricted diet. :D

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Thank you so much for sharing your story with me, it made me feel better as I know a lot other people experienced the same. It's really really frustrating.

I just cannot understand how they leave without trying to understand it though, like your husband did. It's crazy!

Don't worry though, he probably already digged it up to confirm if you were right but now there's no going back, so he probably learned a lesson I'm sure :)

Thanks a lot for the compassion and support, your post, and the type of person you are, are a true inspiration for me.

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Guest thatchickali

No, you can find someone non-celiac who loves you enough to understand, and even someone to make the sacrifice themselves. It took a while for my boyfriend to understand because it took a while for me to understand, but he's been there with me from the beginning of getting sick last year and he now wants to go gluten free. I wont let him until I can eat more than chicken in a corn tortilla or rice. (I'm not fully healed) but he is so supportive. Brushing his teeth everytime he eats, he's so careful and I am so lucky to have him, but I believe there is someone like that for everyone. She just wasn't the right one.

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In a way your are lucky that you were not married-easier to break up with a girl friend than divorce a spouse (emotionally both are hard). I think my spouse would have preferred to know about the "crazy food issues" before we got married. Believe it or not, I have friends who are far more lovingly supportive of celiacs and food allergies than my spouse. Non-Celiac & non-allergy friends who go way out of their way to prepare safe foods, find good recipes, try gluten-free foods, and even send me articles and recipes. So at this point in my life I think you are in a good position to regain your health, build a support network, find friends who understand and care about your health, and you will run into a girlfriend who really cares for you and wants to understand and keep you healthy. And she may or may not have celiacs or have ever heard of it. Your family may or may not ever understand Celiacs, and they may or may not ever try to understand why you bring your pots and pans when you travel, but that is blood family - you are stuck with them. Your spouse/girlfriend should encourage you to stay at a hotel with a kitchen and help you find a health food store in the area so that you can eat and stay healthy while visiting family who doesn't get it or try. Just my two cents!

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I did not deal with gluten issues while dating but I did deal with anaphylaxis to shellfish and severe milk allergy. Some out there did try to understand and were very "loving". Other out there told me that I had better eat the food not embarrass them if we went to someones house and they offered shellfish or whatever :(

You are right getting rid of her. Life it too short to try to be in a relationship with someone who doesn't truly love you. There are better people out there. I found a great hubby who will dump his clothes in the washer and run up to the shower (a must) if he has seafood for lunch. Keep looking and know there is a jewel out there for you. Don't settle! ;)

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I have to chime in and agree that there are non-celiac people out there who are wonderful, as well. My boyfriend and I are having our one-year anniversary on Oct 8th and he found out about my Celiac on our first date. He's better about things than I am, he doesn't even want to go out to restaurants anymore if it's just us, he won't let any gluten in the house unless it's in a box, if we go out with friends or family he's super attentive at the restaurant. It helps that I've become quite the little chef, but he'd stay home with me and eat buttered (rice) noodles every night if it kept me healthy, because that's the most important thing to him. To answer your question, yes, it's easy to find someone that understands, but they have to care enough to put your health first, regardless of the health issue. Finding someone who cares about you that way, well, that can be a little tougher.......... But I have no advice on the dating pool, never been good at going out and finding guys, I met my guy through a friend, no work involved....

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Our class instructor has listened to me turn down Tootsie Rolls and other goodies that have been passed around, and a couple of days ago answered a question for me, when somebody said: Oh, you can't have Tootsie Roll, huh? (I LOVE Tootsie rolls, but they are a big NO NO) The instructor said: NO, she can't - I read about Celiac online, and did not realize how serious it is.

I felt so good hearing that somebody had bothered finding out about something that interfers with my ability to go out for lunch with my class mates. So there are a lot of people who are willing to learn and accept us and our restricted diet. :D

Brief hijack...

Which of your products is gluten free?

At this time, all of our confections are gluten free. We do not use wheat, barley, rye, oats, triticale, spelt or any of their components and that includes our dusting on our conveyor belts. We do use corn and soy products in the manufacturing of our products.

That's from http://www.tootsie.com/faq.html

Meanwhile, shimo, sorry to hear about your insensitive ex-girlfriend. I'm sure that when you meet the right girl, you'll know because she will be understanding, willing to learn about celiac and careful about your diet.

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Guest Happynwgal2
Brief hijack...

That's from http://www.tootsie.com/faq.html

Wow, 2Boys mom,

YOU HAVE MADE ME A VERY HAPPY WOMAN TODAY!!!! YEAH! I can eat my Tootsie Rolls! :D:lol::P:rolleyes:B)

Now, why didn't I check this out myself? I think I may have gotten Tootsie Rolls mixed up with the red liquorish I also like - but NOTHING beats Tootsie Rolls!

from a very HAPPY NW GAL!!!!!

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You can find someone who cares even if they are not celiac. I got really sick 3 months into my relationship with my boyfriend. Eventually I found out that I was gluten intolerant. He has been wonderful. He is so careful, and won't let me kiss him until he brushes his teeth. He notices things I need to watch out for even before I do. It is not all a bed of roses, he has to deal with a bunch of health issues I have, but he tries so hard. You deserve someone who will be supportive and loving. I know you will find that special person.

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hey there!

I am 21 and in college far away from my family. My friends are pretty much all I have and it is very very difficult. Out of 4 roommates, I am the only one who has to deal with this and I think it is hard for other people to understand because frankly I don't want to understand sometimes. I don't want to think that I can't go to this restaurant because I will get sick and they don't ever think about thoes things themselves and certainly don't want to stress about the things that we have to. All of them eat non-gluten products and I wonder if that sometimes effects my health, but I am not really willing to be a pain in the ass by asking them to not eat gluten products.

I find it very difficult to date beasically because I find it embarrassing that I have celiacs and I don't want to burden my date with the "can't-haves." Sometimes it feels like no one can love me because I have these "flaws," but honestly, you just have to keep thinking that if you truly mean something to someone, then you make it work. They will understand if they want to, they will make a choice to learn what you can eat and to be aware of it in all situations. I think it has to do a lot with the way that you set forth the information to them, too. If you present in a calm understanding way, maybe they will understand that it doesn't have to be difficult and they will be more sensitive to your sensitivities. My last boyfriend was real good about it and his family would always make me special meals and we'd get special food for me. I still felt like a burden, but they really put effort into learning what I could have which felt great. Just remember, there are people out there who are willing to put effort into truly getting to know you and accepting who you are.

Dating is hard in general and it makes it difficult when you cannot participate in food events that gluten eaters take for granted. The hard part is that no one wants to cut out gluten because it tastes good. But they should understand that we do what we have to to survive. Of course, dating someone else with a gluten-intolerance would ease a lot of the anxiety because it is something you share, something you both understand, and something you can helpl each other through. That is something that can only be understood by a true gluten intollerant.

Good luck with your further dating endeavors. I hope it helps to know that there is someone else out there who is dealing with the same thing.

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I fell extremely lucky in finding my current partner (the first since being diagnosed and hopefully the last :) ). She found out on our first date and has been very thoughtful ever since. When she cooks us dinner she really goes the extra mile looking for foods/recipes that don't have any gluten. And at resteraunts she is more concerned than I am, actually. She's very understanding. She knew immediately when I said I couldn't eat a breaded mozerella stick on our first date that I had a gluten intolerance problem. She recently had a friend diagnosed with Celiac, so maybe that's why, but it impressed me. We also went to the beach with people I don't know and they also new about gluten intolerance and they went out of their way to have safe foods in the condo for me to eat. A new coworker was going to make an eggplant dish, but didn't because she knew I wouldn't be able to eat it. I think more and more people are learning about this and I hope it will only get easier for us to meet folks who are understanding - at work and in social relationships.

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