Dealing With Other People's Reactions?

[sunflower]

Hi everyone,

I

[Niteyx13]

Anna,

I am an undiagnosed celiac, but have been on the diet for a little over a month now. I started re-searching the disease when my cousin came for a visit and I found out she was gluten intolerant. All her problems before going gluten free were like mine!

My problem is when I tell people I don't eat gluten, and then explain why. Then they ask me, "Oh, when did you find out this?" I refuse to lie about it, so I have to go through the thing about how my doctor would not listen to me (just hand me another IBS med) and how I decided to try the diet and see what happens. Then I really get looked at like an alien! They think I am a total fruitcake. So, I know what you mean about how people are. I will be glad when I am able to get at least the Entrolab tests done, then I will have SOMETHING to make me seem less insane. Even though I shouldn't have to prove myself to anyone. It's just that I was someone that LOVED to eat (and did) whatever I wanted whenever I wanted before; I would not be on this diet unless it made me feel better! I have mourned my food so much.

The restaurant stuff is hard I agree. I am sooooo sick of salads! I have been so glad this board has been here too, and it has helped me immensely. Thank you for sharing.

Deanna

[pinkyagogo]

Hi anna, sorry you let these things bother you. I guess I am more laid back because if I were you, I would have laughed right along with your boyfriends co-worker who said, "That must suck!" because it does suck!

I surely wouldn't let anyone elses reactions ruin my weekend. Pfft.

Your friends are inviting you along to go to these places because they enjoy your company, they want you along. I doubt they are inviting you to a pizza place or ice cream joint to rub it in your face. So, the next time they invite you to an ice cream cafe why don't you say something like, "Hey let's try this place or that place" somewhere where you know you can eat or drink something, like a coffee cafe or even a starbucks where you could order a tea. Make it about good conversation and fun and not about food.

I hope I don't sound too insensitive because I am not really. I just think not every situation has to be a turned into a mountain. Sometimes you have to laugh at yourself and the hand you were dealt. Makes life more tolorable.

Good luck!

[crc0622]

I agree, Pinkyagogo - this thing is manageable, not terminal and more healthy. It could be much, much worse. It's only food.

(And it's my understanding that at Starbucks we can have coffee! I certainly hope so, because I've been drinking it.)

[Pegster]

I agree that it's hard to have a sense of humor about something this life-altering, but it really has been important for me (just to keep my sanity). I spent my life enjoying foods that are suddenly forbidden to me even though my GI symptoms are mild. I LOVE cake- to me a wedding or a birthday always meant CAKE I always tell people to eat a piece of cake for me. My loved ones (without fail) tell me the cake is dry, tasteless, just awful, etc. to make me feel better. Some people are going to be insensitive. Your real friends won't mean any harm. I think you need one of the "Gluten Free. Got a problem with that?" T shirts to wear

[zippyten]

Anna,

I could relate to much of what you said in your post about other people and their reactions to celiac. I think how people handle this becomes a metaphor in many ways for the rest of how they handle others' feelings and life in general.

For example, one very good friend of mine has not been so supportive or sensitive of my needs since I've been diagnosed (5 months ago)...her first reaction was: "Well, that won't be so bad!" which is, to the say the very least, unsympathetic. If I see her for morning coffee and she happens to buy a doughnut (and, like you, it's not as if I expect the whole world to stop eating or enjoying gluten) she'll remark on how she really wants it and how great it tastes, etc, specifically directed at me! She also continues to invite me and my kids over for pizza, or go out for pizza, no matter how many times I try to nicely remind her that it's fine for the kids, but I'd have to find something else I'd be able to eat...

In the beginning, this really hurt my feelings, because she is a friend for many years and spends a great deal of time with me and my family, so I guess I expected more consideration and concern. However, I started realizing that this kind of reaction is a reflection of how capable, or incapable, someone is of empathizing with others and having compassion for their needs. Some people are limited in that area, and I tried to accept her limitations and recognize she can be a good friend in other ways. This may be the case with your friend. As far as that guy who laughed? Some people are just dimwits, pure and simple.

Anyway, I've tried hard not to dwell on people who are not that supportive of what I'm going through. I feel it's an interesting, though slightly sad, insight into someone's character if a person seems unable or unwilling to put herself in my shoes and think about my feelings. I've tried to appreciate all the people who've come through for me -- from my husband and children, to my best friend, to even casual acquaintances who often display a kindness that really touches me. I also apapreciate this message board a lot.

I think a lot of this is slow going, and related to the general lack of awareness of celiac in this country. I don't know where you live, but because I live in NYC, you do tend to find more people who have dietary restrictions and many people here don't miss a beat when you tell them you need to be gluten-free (although they still need to be educated in restaurants, believe me!). So I guess I'm lucky in that regard. As far as explanations go, I, too, find it tedious sometimes and tend to just say: "I'm gluten-intolerant" (or, if they don't know what that is, I'll say I can't digest anything made with wheat, barley, rye) and leave it at that. If someone's curious, I'll go into it more...and you'd be surprised how many times in 5 months I've tripped over another person with celiac! Another clue that it's not all that rare.

I hope you have a lot of support among other family members and friends, and sounds like your boyfriend is supportive also (although naturally it's hard for people not going through to totally understand why certain things would upset you). As far as the unsympathizers go...maybe one day they will have to face a challenge in their own lives that will teach them to have more compassion for others.

Ellen

[sunflower]

Deanna,

It

[plantime]

Some people are unsympathetic, some are just downright cruel. We have to deal with these people all the time, so it is best to learn to just shrug them off. You will find that many more people try to understand, they just don't know what to say. That was probably the case with the guy who said it sucks and just laughed. It is quite possible he just didn't know how to react. Your friend, on the other hand, should know better. She should be a little more considerate of your feelings. I was invited to dinner at Pizza Hut with several of the ladies from church for dinner, and couldn't go. I went and had dinner with another lady at church that couldn't have the dairy. We still had a very good time. It does hurt when the people that claim to love us treat us this way. Once again, it is something that we just have to learn to deal with. I have found that humor is the best way for me, I am open to suggestions from others!

[byuiemily]

I also have had plenty of experiences of dealing with those insensitive to my condition, however I've come across a new pet-peeve of mine: over sympathizing. I recently came across this with a guy that I was dating. When he first heard I had celiac, he was really good about just asking about it and being sensitive towards it, and I appreciated that. However as time went on, when he'd suggest something, or see something I couldn't have, he'd just go off and be like "that sucks that you can't have that!" or "I just can't believe that you have to go without that" and let it bug him for the rest of the time we were together. When i'd tell him it's okay, he would say it wasn't okay and that he felt horrible that I had to deal with having celiac. It got to the point that I couldn't handle it. I very much appreciate the intention of his actions however I wasn't able to enjoy being around him when he constantly let all the things I couldn't have bother him. Am I the only one that feels this way?

[sunflower]

Yes, I think over sympathizing can be just as bad as lack of any sympathy. I guess overdoing it either way is not good

I don't know about others, but as for me, I'd like people to be understanding about my problem, meaning that after possible initial explanations of the illness they will take a note of it and try to consider a bit before planning to eat out with you, but they won't either laugh or go repeating "Oh my God, it's so *terrible*!" 50 times a day.

As I was trying to put it down, I had a thought: "Am I not expecting a bit too much for an average human being?" I mean, for most of us the diagnosis came as a shock, so maybe the people around us also experience some kind of initial confusion, not knowing how to behave at first?

[catfish]

That's a very good point. People like the guy you mentioned who just said "that must suck" and laughed, you know that is probably a knee-jerk reaction to something he'd never even considered before. Some people have no filter between their brains and their mouths. I have pretty thick skin and usually stuff like that doesn't bother me too much, because it isn't intended to do so. Before I learned I had the condition, I had never heard of it before. Obviously there are a lot of people out there in the same shoes I was in, so how can I expect them to deal with it any better than I would have? To tell the truth, if I weren't aware of the disease today and someone I knew told me that they couldn't eat gluten, I don't really know how I'd respond. I would probably respond by saying something like "That must really suck," although I wouldn't laugh afterwards...

My way of dealing is to explain things. My wife gets annoyed when I go out to eat and tell the waiter that I have Celiac disease, she is uncomfortable with the idea of me telling strangers that I have a disease. So I tell them I'm allergic to wheat, barley, and rye and I go over the ingredients with them in whatever I'm ordering. But with my friends, I just discuss it. When we have cake and ice cream for a birthday party, for instance, it is a subject that is bound to come up. I make sure to express not only why I can't eat it but also how it makes me feel. That way we are all on the same page and they don't feel guilty or awkward eating it in front of me while I have nothing. At the same time, they are likely to remember it better next time we get together and try to think of a restaurant to go to, etc. I guess I'm lucky because a lot of my friends have their own restrictions, be they vegetarian, religious, or just health decisions, so my own restrictions seem pretty reasonable in comparison. But if I had a friend who kept rubbing it in my face (whether intentionally or not) I think I would have a heartfelt talk with them about how much this hurts, and let them know that the next time they do it they will eat their ice cream alone because I won't stand there and listen to them saying how good it is.

Just try not to expect too much from others, because it really is difficult to understand something like this if you haven't actually lived it. I think just trying to imagine how life-altering this would be for them if they had the condition may be enough to make them balk and overreact, or to respond in an unpredictable manner because they are just bewildered by the concept. After all, let's face it, before I had to start this diet I couldn't imagine a day without bread, pasta, snack chips, cookies, etc.

As for over-sympathizing, I haven't had that problem yet. Although I can see how it would get tiresome.

[bigapplekathleen]

Hi everyone,

It's amazing how insensitive people can be regarding Gluten Intolerance. They usually just don't get it. Frankly, I cannot imagine how they could possibly understand, since this is such a complicated disease.

Have you all read the book WHEAT-FREE, WORRY-FREE ? The author has great suggestions for dealing with people in various situations (office, business, picnic, restaurants, etc). IT has helped me a lot.

My solution regarding people I have to dine with is just to say I am "allergic" to grains like wheat and barley. If they ask a lot of questions, I try to tell them that it's not really something they want to hear about at a dinner table. If they press on, I just tell them that it causes immune system damage and is an auto-immune disease (similar to MS or diabetes). The people closest to me know that I nearly died several years ago and that I have had serious health problems because of undiagnosed celiac. But everyone else is on a need-to-know basis. I have found that if I tell people too much information, it puts them off and damages the relationship.

Kathleen

[byuiemily]

I completely agree with what has been said. It is true that you can't expect a person to be able to react in the "perfect way", after all I don't think there is such a thing. While I do get a bit irritated with some reactions, I'm never hurt by them, because it's not something that I feel I need to be defensive about. In the specific situation I mentioned though, I think it was okay for me to get a bit annoyed and aggitated because we were spending soo much time together and you don't want your disease to be the main focus of who you are; I am not Emily the Celiac, I am so much more then that, and I think that's what made me get frustrated in that certain situation.

I too find that with most anyone I meet they are on a need-to-know basis. My new roommate who has been here for almost 2 months just found out that I have Celiac, and that's just how I like to go about things; I don't wish to draw attention to it because it's not a huge deal that I feel needs to be heavily explained to every person who shares air with me . I came to that conclusion when I first got up to school last summer; within 10 minutes of meeting my new roommates, my Mom sat there and explained exactly what was "wrong" with me and I was completely horrified because I hadn't even decided when or how I wanted to tell them about what I had *just a tip to parents: let your child be the one to explain their Celiac, especially if they're older; makes them feel more in control of the situation*. Well hey, I've gotten a bit off track and I have tons of homework waiting for me.

[celiac3270]

On the way back, someone suggested that we go and have a dinner in a good pizza restaurant that he knew. Then I had to explain that I will not be able to eat anything there because I cannot eat anything that contains milk or gluten. Then one of the guys said:

[Guest ~wAvE WeT sAnD~]

Hey all,

I agree on all fronts. I am a very sensitive person who had to learn to desensitize very quickly when I went to college. Usually a with a comment like that, had I been feeling the way I felt before March, I would have carefully told the person, "It can suck, but it's all about your point of view. Either you give up when you find out you're diagnosed, or you persevere, trying to find the best tasting and healthiest food out there. I understand it's hard to imagine, but please respect my situation in the same manner I respect yours." Look at this way: Celiacs aren't a cult who think anyone who eats gluten doesn't fit in or is a monster.

I definitely agree that ignorance is the biggest culprit. When I ask restaurant employees about Gluten Free products and get confused/strange looks, I feel sorry for them, because it's their loss. Everyone knows that the customer comes first, and I know from personal experience that if an employee puts himself/herself ahead of the customer, there is ALWAYS a negative ending result. I realize some customers are a pain in the ass, but I stand firm when I say that someone who politely inquires about something like gluten deserves respect. If I were working in a restaurant now, I would go out of my way to help such a person. I would learn what foods are safe for him/her and suggest which ones taste the best. These people who have truly ill will when responding to a Celiac's questions with "Oh, that must suck" need a seriously earth-shattering wake up call. They need to put themselves in the other person's shoes. They may not completely identify with a gluten-free person, but they must understand while it may suck to not be able to stuff one's mouth at one's own leisure, the person is, in every sense of the words, still a human being with hopes, dreams, and genuine feelings, just like everyone else on planet Earth. This gut-spilling of mine right now contains all the feelings that have been bottling up inside me for a long time--sorry if this rant gets a little lengthy.

celiac3270, I can understand a little bit of what you're going through. My boyfriend's family has been going on and on about EVERYTHING about me--including my wheat allergy (I will refer to my condition as such until I get my endoscopy in August). People say I'm too confrontational--but I see things differently. I don't march up to people and scream two inches away from their face, I present the issues at hand. I demand honesty, and I believe all of you do as well. The best all of us can do is strive to be sympathic/empathetic to other's needs--and not judge before we have all the facts.

May all of you find a resolution.

[tarnalberry]

interestingly, sunflower, I am inclined to disagree with your reactions - rather, I don't have them. I don't mind going to a restaurant where I can't have anything if it'll make my friends happy (Chucky Cheese was one place), and I don't particularly mind telling people "I'm gluten intolerant and can't have wheat." (did that this week at a meeting they provided food for but I was bringing my own).

BUT! I don't think you're wrong for your reactions - I think we're two different people. In the same way that some people don't mind talking about sex with almost anyone, and other people are very reserved about the topic, some people are more comfortable talking about these things than others - and neither way is right or wrong!

That means that you're not in any way wrong to react that way, and for you, it may not be overreacting, but your boyfriend may not ever understand it from your perspective either. You two just might think differently enough that he won't be able to agree with your perspective. If he can respect that you feel that way, however, I don't think the difference is important.

I hope you have better luck with people in the future, though, because it's never fun.

[sunflower]

Thanks for all the replies!

It was very interesting to read them all. Jill, my first long post also was all about things that I have been bottling up inside me for most of my life, so I understand you It

[debmidge]

Hi All

My husband is celiac and he doesn't use computer so I read the posts to him or print them out and we discussed this topic.

I think the reaction he most gets is that other people think he's making this disease up and/or that it's all in his head...He had been misdiagnosed for 26ish years with IBS, etc. so to people celiac is just another 'story' he's telling (my husband is not known for fibbing, so I don't know where that idea is coming from).

My best friend barely brought herself to understand celiac and she dropped off some corn pasta, but then about a week later gave me a receipe to use it that required the use of another ingredient that he has a sensitivity to which I told her about years ago before celiac.

Sometimes I think people think it's not as serious as we are making it out to be - that a celiac is able to cheat or we are making it up.

Additionally, because my husband is very depressed (was recently correctly diagnosed) he has no motivation to make gluten free foods. If I died he would not take care of himself, I know that to be true. So I make the Gluten free Pantry bread, etc. and make sure he has gluten-free foods in the house. We are married 25 years, so I know how he thinks. Eventually he'll come around and have more interest, I just have to wait it out. This is just a knee jerk depressive reaction on his part . He will shop for the ingredients, but won't make the final product.

However, I cannot speak to my best friend about this, I can't tell her what stress this new way of living is doing to us. (since he's newly diagnosed and following the diet, but is having bouts of sickness still, we haven't been to a restaurant since Oct 03; we didn't even take our annual summer vacation this year because we don't even have living at home down pat, let alone going somewhere else for a week).

My husband has it so severely that the slightest gluten is a trigger; he gets sick when I know he's 100% gluten-free - we don't know what's up with that. I assume that since he's been very sickly and misdiagnosed for over 25 years that we have an uphill battle here.

This celiac diagnosis is like living his IBS/colitis diagnosis all over again. That diagnosis happended when we were engaged and he wanted to break up with me over that. He had lost 30 lbs with the "IBS/colitis" - little did we know that it was really celiac. We were young then and the situation was a nightmare to us. He had to quit working and never got better after that.

What hurts me is that whenever I try to talk about this to this best friend of mine

she turns the conversation/email to say that I am co dependent - that I need some time for myself, yak, yak, yak. She doesn't understand how a severe disease can shake up a person. What does she think I should do? Ignore the sickly person with whom I am living? I understand what co-dependent means, and I interpret it to mean a situation of co-dependency between HEALTHY people without diseases or depression that can't be treated (he is unable to take anti depressants).

My best friend has turned "toxic," and I can't stand to be around her. The last time she said this krap I didnt' speak to her for a few months and then I just let it drop and starting speaking to her again. She started up again on this about a month ago , this is twice since his new diagnosis last October 03.

My other dilemna is that I can't tell my husband why I don't want to see her anymore. It would hurt him to hear this b.s. - he'd never want to talk to her again. There are so many other reasons for staying friends with her, but this is a major stumbling block. So for that reason too I can't stay friends with her. Everything I say always goes back to co dependency. If I tell her that I can't sleep at night because I worry, she goes to co dependency. Her "needle is stuck" on this topic. I think she'd do the same thing as I am doing if she were in my shoes, but I can't give her that statement because she doesn't have a significant other in her life anymore.

Anyway, that's how we deal with other people. We run.

I think what hurts is when people minimalize the situation and that comes from lack of empathy.

[sunflower]

In my understanding (based on what I ocassionally read in magazines, so I'm no expert) co dependency means a situation when a person is addicted to something that is ruining their lifes (I heard about it in context of alcohol or drugs) and can't/won't do anything about it, while this person's spouse/partner/family are doing everything to support or excuse that person's behavior. This way, co dependence prevents the person who is addicted from actually doing something about this problem themselves. This is how I understand it, correct me if I'm wrong.

I don't know, however, if you can talk about co dependence in context of celiac? There is no way that your husband can "do something about it" and stop being celiac!

I think that your friend either really does not understand how important it is to keep the diet and so she thinks that it's all in your husband's head and you should stop supporting him so that he wakes up... Or maybe she is worried about you and wants to say that you should not be so worried by his illness, because it's affecting your health also... Or maybe she is just not empathic enough. I don't know.

I suppose you know your husband well enough after all those years and if you know from experience that he will eventually recover from the first shock and start taking more interest in keeping the diet himself, then you are doing the right thing.

It is good that your husband has someone who will stand by him.

I have no experience in recovering from a long undiagnosed celiac disease, because I was diagnosed after I was born, but as far as I read on this board, it can take some time to heal if the disease got really bad. Have you checked if he has other possible intolerances that may prevent him from healing (like milk intolerance)?

I hope your husband will eventually get better, and as you both get used to the change, I hope you will find out that it is not really such a dreadful disease, it's something you can live with quite normally, once you learn how to handle it.

Anna

[Guest ~wAvE WeT sAnD~]

debmidge--

Is your friend married? It seems that she has confused your dedication to loving and caring for your husband in sickness and in health. Now I may be very young and very much unmarried, but I've seen two great examples to draw from--Ronald and Nancy Reagan and my grandparents.

Our nation watched as Nancy relentlessly stood by the President's side, in sickness and in health. Their children even accused them as spending more time with together than with anyone else. She loved him till the bitter end--until he didn't recognize her face, their children's faces, or his own endless list of accomplishments.

I hope to God your friend didn't call her co-dependent.

My grandmother was diagnosed with liver cancer the summer before my senior year of high school. To make a long story very short, at 83 years of age chemo simply wasn't an option. Eventually, she became dejected, irritable, and said to my family members, "I'm not going to make it this time, kids." When she was taken off Insulin and finally slipping away, in a sense, she became (not to sound a little offensive)simply this person whom my grandfather took care of--her spirit was waning. Her "fight" had vanished. Granpa never stopped watching over her or loving her, even when doctors tried to give him her expiration date, because as many patients do, she lived longer than they thought. He has sitting in the adjacent living room of their appartment in their nursing home when he heard her shortness of breath on the baby monitor my cousin brought. He sat with her when she took her last breath on Jan, 4, 2002.

My point is, deb, your should not let your friend upset you. Tell her Celiac's is more real than she can understand at this point. She can always learn or ask you later on, but if she's adamant, ask her to accept your situation and please leave it alone. (with how prevalent celiac disease is, she might even have it herself someday!)

You set an exemplary example for wives everywhere, and I wish your husband all the best in the world--he's very lucky to share his life with someone who accepts his circumstances as well as who he is as a person. May God Bless Him and may he find the hope and courage to keep fighting and stay healthy and happy.

Sincerely,

[Boojca]

This is a very interesting thread. Co-dependence in a relationship, as far as I have always understood, means that one cannot seem to function without the other. I had a friend in high school who's parents had been high school sweethearts, got married, never movedo out of town, etc... They are wonderful, very caring people. However, if her father had to go out of town on business I am not kidding when I say her mother would literally mope around the house, or lay in bed and sulk and cry, until he was home. I call THAT co-dependent. Me, my husband goes away for a weekend and I have someone take my son and I have a weekend alone...it's like a HUGE vacation. But, that's just me.

I think it's interesting that everyone immediately assumed this friend is not being a friend, bc I see it from a different side. I think it's VERY important for people to take some time to themselves, even if it's just a night out. I love my husband, I love my son, but I also love my friends and I look forward to going to dinner with "just the girls" or spending a Saturday morning just visiting for a couple hours. I just think that's an important part of keeping the "me" in the "we". In fact, my husband tells me I don't do stuff just for "me" enough! So, before you go dumping this "toxic" friend maybe look at it from her side for a second. She may be coming of harsh but maybe she's just trying to keep you from losing yourself. Your husband is very ill, that's obvious, but is it really going to make that big of a difference if you go out for a couple hours by yourself, or with a friend or two? I doubt it. It sounds to me like your friend is trying to help that side of your life. As for the food she's given you, it also sounds to me that she is trying to help. I think it's easy for all of us with celiac disease to forget that it's our diet, and we do all sorts of research, etc...so we know what is ok and is not, and we live with it every day. Those without it can do research, etc... and "know" what is or isn't ok, but they forget. Or they don't realize that something that may appear "fine" has a hidden gluten. Think of some of the mistakes you made first starting out on this diet. It's the same thing for them. For instance, my husband's best friend adores our son. I mean, absolutely adores him. And what did he do when we stopped by last night unexpectedly? Offered our son a piece of pizza. He didn't do it bc he doesn't care, or doesn't even try to "get it". He simply wasn't thinking.

So, that's my two cents. I could be wrong, maybe your friend is a toxic witch who should be dumped. But I thought it was important to maybe post this perspective.

Bridget

Georgia, VT

[debmidge]

Hi all

I do go out with friends and family. Most of the time it's without my husband and he's fine with that. For crying out loud, she and I go out together (dinner, movies, etc.) - she knows I want and like to do that! Just lately I haven't had the time to do it.

The last time my friend commented on the co dependency thing was when I mentioned that due to stress I was taking mild sleeping pills to help me sleep thru the night. Not only was I having stress at home, but extreme stress at work too. .P.S. she's been divorced 10 years now.

I do agree with the Ron & Nancy Reagan relationship. I have been married to my husband for 25 years.

I am also looking at my situation from the viewpoint that as the partner in this marriage, I ask : what can I do to help improve my partner's lot in life? Because what helps him, helps our marriage. For instance, if I am there to check out sources of gluten and help him maintain a gluten-free diet, perhaps he'll get well enough so that we can go on vacation again next year. I love to take vacation with him (I've taken vacation without him, so I don't know how my friend thinks I am what she thinks I am). When I am not with him, I miss him. I want to experience everything with him. Isn't that what marriage entails? And also, what helps him, helps me in the long run. I am a being a bit selfish here, I'll admit: If he's feeling better maybe we can take vacation next year. Gee, a healthy husband - I'm gonna get me one if I have to move heaven and earth! And I want it to be HIM! So to her, this is co dependency.

She urges me to read the "CoDependency No More" book she gave me. I tried and feel that the book is a farce. In many instances it describes normality as co dependency. The book calls everyone who lives a co dependent and I believe that it's not by accident. The author wants to make money off the theory, so the best way to do that is to include all types of relationships and situations. According to the author, Melody Beattie, the definition of co dependency is "A co dependent person is one who has let another person's behavior affect him or her, and who is obsessed with controlling that person's behavior." So using that definition, non celiac family members are co dependent when they care for a newly diagnosed celiac? His behavior isn't affecting me, the celiac disease is. Disease isn't behavior. His reaction to having celiac is a problem as he isn't coping with it well yet. Can anyone blame him? The gluten free diet is difficult at first. Also he has been ill for many, many years and has to learn a new diet - a new way of living. BUT, he has to do this in his own time and on his own terms. I am not so disillusioned that I feel I can do it for him. That would make me co dependent, nes pas? Let me throw this out: what if he had cancer instead of celiac, would his reaction/behavior be Ok then? Are there Ok diseases to be depressed about and non-OK diseases? Who decides that?

Believe me, when he goes to visit his mom (he does some of her housework as she's 83 yrs old), I don't miss him for the several hours he is away. I then have the apt to myself (which I love) and I keep busy. If he was gone over night, I'd have trouble sleeping but I wouldn't cry or mope. Maybe I'd be anxious after a few days if he were away. When I go away (vacations or visit family) he misses me. Several years ago, I went to another state with my family for a vacation for over a week. While I was there I purchased a night light for my room during the vacation stay. When I got back, was I unpacking and he saw the night light and then took out a night light HE purchased for our bedroom while I was away!

In my friend's defense, I have to point out that she went thru a co dependent marriage. She had a abusive husband who beat her and promised her he'd kill her -- when she was 8 mos pregnant. She made excuses for his nasty behavior. He finally went after her with a gun, but never used it. She then planned her escape with the help of her kind neighbors who knew what was going on. That's why I have compassion for her and try to understand that she means well.....but she still looks at the world thru that horrible situation. I've tried my best to explain my world to her and how it contrasts from what she's been thru (we've known each other since we were 14! and we're 47 now!) . I feel that I am my husband's "anchor" until his health improves and we can breath a sigh of relief when he is feeling better, etc. Until then I am not going to stop : worrying about him, helping him, cooking for him, etc. Before celiac, when he was diagnosed with IBS, he took care of himself very well. He makes his own dinner every night now. He plans his own menus for the week. He does his own gluten-free shopping (except for bread flours). I make his bread however because he doesn't want to get involved in that. He didnt' bake bread BEFORE he was diagnosed with celiac. Frankly, I really don't know what my friend expects me to do. Maybe next time she rags on co dependency I'll ask her to tell me what she'd do in my shoes.

Everyone take care and thanks for just being there.

Also, husband is going to get food sensitivity blood testing. Or, if he's co dependent too would he need "food sensitivity training" instead? There's a thought!

Just Debbie

[rattaway]

Hi Just Debbie, Hope my Email didn't tick you off. I just know how I would feel if I were the only gluten-free person in my house and everyone else went out to movies, restaurants ect. and left me behind. My gluten-free husband and I went to the movies last night. He ate reeses peanut butter cups and had a sprite. I am also gluten-free as you know and ate a pickle and drank a Dr. pepper. We celiacs still are able to function outside of the home and enjoy a normal lifestyle. I enjoy being a celiac for several reasons. One, it helps keep the weight off ( can't just go buy anything at the store), two, I get to help other people who have symptoms and have seen tons of doctors who keep taking their money and offering no real diagnosis, so I can help point them in the direction to healing. And last, I have really learned how to be creative with meals, Bdays, and parties in general. I have non celiac friends trying to make things that I make now instead of vice versa. I only went off a bit in my Email because I come from a long line of selfish women who put themselves ahead of their husbands and children. I refuse to be one of them and anything I can do to help my husbands health, even if it means no vacation for a while til he can go, then so be it. In the end, I think I would rather reflect on moments with him anyway rather than a few nick nacks from somewhere,USA.

Sincerely, Rian

[dana-g]

Anna--My grandparents are from Eastern Europe, and I really miss pierogis! I won't even attempt a gluten-free version. Some things just don't translate very well.

And I also have a daughter named Anna. She's 11, and has celiac disease, too. I've had to keep a very positive attitude toward my disease for her sake. I also have food allergies, and frequently break out in hives and have other problems because of it. I know what it's like to be severly limited as far as your social life is concerned. Not a lot of choices in the restaurant department! Actually, I, too, think your boyfriend's co-worker hit it in the head--it sucks having all these restrictions! But I agree that it's not a very compassionate attitude, kind of like laughing at a diabetic. But I don't think people are as mean-spirited as they often sound, just ignorant. I have accepted that my dietary restrictions are extreme, and it is really asking a lot for me to expect my friends and family, who are not capable of relearning old habits easily, to accomodate me. Let alone people who barely know me. More logical that I should overlook their shortcomings. Seems unfair, but life is not fair. Having celiac disease has made me a better person. I'm more tolerant myself now. The world hasn't changed just because my life has changed so dramatically. Your friend who always eats the ice cream when she's with you? If you look back at your relationship, you can probably find other evidence of her self-centered behavior that has nothing to do with your celiac disease. I'm sure she's a wonderful friend, maybe a little clueless. Everyone is flawed in some way. None of us are perfect, not even those of us with celiac disease!

I've found that it helps to take it a day at a time. Just for today, I'll figure out how I'm going to eat lunch with my friends. Just for today, I'll find a place to meet my girlfriends where I won't be drooling over the pastries. I try not to look at this as a "life sentance", but a "life style". And if I find just one person who understands what I'm going through and can meet me halfway, I consider myself very, very blessed indeed.

And if that doesn't work, remember the old saying that God must love idiots because He made so many!

Take care--

Dana, Gloriously gluten-free

[Niteyx13]

Co-dependency has a lot more other things to do with it than just feeling like you "can't live without someone". It is a very messed up psychological way of thinking that is caused from a disfunctional family life in your childhood (and was first found in families of alcoholics). I know this because I have been going through recovery for co-dependency for the past year. It bugs me when people start throwing the "co-dependant" label at someone who loves, and is loyal to someone else. Often times it seems that the one pointing the co-dependant finger is probably the co-dependent one. Because one of the major traits of a co-dependant is the want to control others (although, often unconciously).

Anyway, I am sorry to get on a tangent in here about this. After all, this is not a co-dependency forum. But, I thought I would throw in my thoughts, since I am someone who struggles with it myself.

I would say that if a friend who seems to be a close friend but gives you so much trouble maybe needs to remain a friend, but maybe not such a close one.

Just my two cents again...

Deanna