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frustratedneicey

How Do You Handle People Who Refuse To Recognize This Celiac Stuff?

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Hi all! I just wanted to ask you if you have run into this problem and how you deal with it...

This came up again today, when my mother took me out shopping. It came time to eat lunch and we were looking for a place to eat. She was saying, "oohh, Chickfilee, I like their food, ya wanna go there?" And then when I have to remind her AGAIN for the thousandth time, she gives her little giggle and says, "Oh, that's right" and then "What exactly CAN you eat anyway?" Just how many times must you have to tell someone what your restrictions are?? Is there a brochure or something I can make for people that have no clue? It's not that I haven't explained things to her time and time again, it just seems like she doesn't listen or just plain doesn't care to know.

When other people have us over for dinner, they go over the menu with me and give me lists of ingredients to OK with me, my mother, well, I get what she makes and if I can't have it , well, I'm going home hungry.

What is the best way to handle it?

It seems to me she enjoys this, she always gives a little giggle when she asks me to eat something that I know full well she knows I cannot have.

I already have big time emotional issues with this whole thing, and it just seems very mean spirited.

Any suggestions???

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im so sorry- thats terrible! i was just telling someone yesterday how fortunate i feel that my friends and family have taken this so seriously... between making little presents for me that i can eat (cookies, etc), calling me every time they hear something about gluten or celiac and looking for restaurants to go to that i can eat at, they have been overwhelmingly supportive. It is really hard, especially when it is your own mother, but how about cutting out some newspaper articles (the wall street journal just had one, and the new york times) and giving them to her? Or printing out a list of gluten free items for her? It might also help to confront her about it, explain how difficult this is for you to adjust to and you would appreciate her support as you make these changes. Also, one thing that has really helped me is that my friends are so excited about how good i feel- they all suffered through this with me when i was sick, so it may help to remind her of that!

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May I just say, THAT SOUNDS EXACTLY LIKE MY MOM!!! For some reason, no matter how many times I tell her, she still offers me things I can't have and then acts like it's not a big deal when I get frustrated!

Even my fiance asked me why she's always offering things she SHOULD KNOW BY NOW that I can't have!

The way I have finally learned to deal with it is just ignore it when she does that. I mean, when I think back, it's not just the food that I eat that she "forgets" about, she does that with a lot of things. I think she just doesn't listen that well.

But I know what you mean because anyone else will have a serious conversation with me about what I can and can't have and realize how serious it is and it's like, my Mom, I would think, should know MORE than me by now about Celiac and Gluten Intolerance. (Because she's my Mom for God's sake!) For example, I talked to my Grandma on the phone for 2 hours last night discussing all of this and what she can and can't make me for Christmas dinner. And when I go home (to Chicago-I live in NYC now), I want to have things to eat, but my Mom doesn't seem to realize that it's a whole different world at the food store now, and I can't just "figure something out" when I get there. But I guess since we're staying at her house for the holidays, I'll end up loosing weight instead of gaining it like a normal holiday season......I won't have anything to eat! :rolleyes:

But hang in there; I know it's annoying to constantly explain yourself. Maybe you should get a list together for her and highlight the things that you CAN have and the things that are MAYBE'S in different colors. Also a list of ingrediants you can and can't have. And HIGHLIGHT the ones you CAN'T have in RED! Then give it to her and tell her to do her homework! haha Maybe she just needs a constant reminder so it becomes natural to not offer the things you can't have anymore.

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My mom has been pretty understanding. The only thing she has a hard time getting is, how gluten is in other things other than the obvious! (bread, pasta, etc.) I'm constantly telling her, and my brother how gluten is used in many products. They always are amazed when I tell them, " there's gluten in that soy sauce, " or whatever. Sigh.....eventually they'll catch on. I hope.... :huh:

Charlene

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Neicey, I don't know how to sugarcoat this, but your mother just sounds like an #$%hole. I don't think Celiac awareness is the issue here.

My mother gives me a hard time about Celiac. She doesn't believe that Celiac exists, it's all in my head, and can't understand why I am refusing to eat gluten and blah blah blah. She drives me crazy. However, whenever I visit, she has shopped at Whole Foods and the cupboards are filled with rice cakes, gluten-free baked goods etc. and if we go out to dinner she gives me the final say on where we go and has even been known to call restaurants herself to make sure they have gluten-free menu selections. Yes, my mother has a long way to go in her "awareness" of Celiac, but ultimately, I am her child and she will suspend her prejudices in order to do good by me.

Your mother, on the other hand, is displaying a willfull disregard of your physical needs. It sounds like she knows damn well what Celiac is and simply wants to torture you. I once knew a woman who was deathly allergic to tomatoes. Even if she picked them out of a salad, she'd still have a near-fatal reaction if she ate that salad. Yet everytime her mother invited her over for dinner, she'd serve spaghetti with marinara sauce. Apparently, this woman's mother was quite a piece of work.

If I were you, I'd simply not eat meals with her...at all. Or if she wants to go to a restaurant that you can't eat at, you can simply send her that restaurant by herself and have her meet you outside of PF Changs or The Outback in an hour or so. Sounds like she wants a fight. Don't give it to her.

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Sometimes no matter how many times you explain the situation to someone, it does no good. My mom, for example, takes a "stick your head in the sand" approach to my situation. I have talked, sent her printouts of articles and explained some more. She and my dad both don't get the whole thing--they think "staying away fron wheat" is all there is to it. Just yesterday, my husband was talking to his mom on the phone, explaining why we won't be going home to visit until after Christmas (actually for reasons other than my situation). When asking how I was doing, she said--does she break out in hives? Again, don't these people listen, or maybe they don't want to know how serious it is. Maybe it's their ages. They don't hear as well as they used to and kind of "miss things".??? It is just a bit hurtful to think that it would not be inportant enough to them to be a little more interested--not just in the moment, but enough to understand and remember that this is our reality. When the people involved are also the ones closest to us, its all the more hurtful and puzzling.

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Sometimes I think there are people out there that want to sabatoge others...I don't want to say that about your mom directly, but just making generalities here. The whole thing reminds me of someone being slightly overweight with skinny friends (or even overweight friends) attempting to sabatoge a weight loss diet . I have been the bystander in those situations and its so odd, manipulative, and offensive. My mom has celiac, so she better know what I can eat, but I have had bosses and friends like that. Its freaking rude.

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WOW...So there are more people like my mom in the world. Just when I thought I was the only one with a mom like that. I don't understand what the deal is. The thoughts run through my mind everyday. I have handed her a copy of what gluten is in, but she just doesn't get it or maybe doesn't want to get it. But, I think that the laughing she does about it, hurts and makes me more mad than anything else!!!

Thanks for all your words of wisdom and advice....

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I have been in the same boat with my husband and his parents. And I'm still waiting for my biopsy, so I'm still eating gluten (but only as much as I have to). So I haven't even broached the subject of cross-contamination with them yet. Not looking forward to that conversation.

It always strikes me as so odd when someone doesn't understand this. It's not that complicated The first day I found out about celiac, I was practically an expert on the main points of it in a couple hours. When someone like a friend or a family member doesn't understand it, I feel like they just don't want to.

I had totally written off my husband and his parents on this, but then this last weekend they really surprised me. We all went out and my MIL was asking me appropriate questions in an appropriate manner. (Not the snippy, eye-rolling, accusational questions I'm used to from her). She even tried one of my Mary's Gone Crackers, which aren't the most attractive things in the world. LOL. Then later, when we stopped for dinner, my husband asked me if I found something I could eat. You could have knocked me over with a feather.

So she could still come around. But you just have to do what ya gotta do. I think that people are so used to everyone going on fad diets or chosing healthy foods that have to do with personal convictions and not a disease (like being vegetarian). I think that sometimes people think it's just a phase or a health kick. It's so sad that sometimes it seems like if there was a medication for celiac, people would take it more seriously.

Nancy

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People either get it or they don't. My ex-wife just didn't get it all and it is why we got divorced. However I was able to trade her in for a terrific girlfreind who gets it completely. My dad and brother need to be gluten-free but they just aren't interested. They have the weight gain, bloating, brain fog, fatigue and all of the other wonderful aspects of celiac disease. Even after seeing the change in my health they just aren't interested. My mother gets it and always asks about what I can eat when I am over there. Tommorrow I am going to a dinner for a freind who finished his PhD at an Italian restaurant. I explained my dietary restrictions and said I probably won't be able eat much there. A few hours later his wife called and said that they spoke with the manager and arranged for gluten free food just for me. It is hard to trade in your mother for a new one but there are people out there who do understand. The ones who do get it make it easier to bear the dopes who don't.

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I think, just to look at this from a different point of view for a while, that it's easy to forget that people around us have to go through the same kind of mental adjustment we have had to go through ourselves - and they don't have the concrete evidence of feeling the symptoms.

Honestly, how many people here spent some time in denial, hoping it wasn't true, not taking the diet very seriously at first, thinking it might go over after a while, etc etc etc? Other people only have our word to go by, and of course it would be nice if people always took our word for it, but sometyimes it will take some time to convince them, or for them to plain get used to the idea. Some people might also feel threatened with the idea that something they always thougth was healthy and good might actually make one really ill, and they might react strange or rude because of that.

I don't mean to say that there aren't rude people out there, because of course there are. But those people usually are rude about everything, so I shouldn't come as a surprise! And other people, at least in my experience, will eventually come around, when they get used to the idea that this disease is for real and isn't going to go away. How I act myself has a lot of influence on that as well.

Pauliina

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Was your mom helpful before your diagnosis? How did she react to other things you were doing in your life that were , in her opinon, non-traditional?

I have the same problem with my mom and 2 sisters. They don't believe in celiac disease and are always trying to get me to eat things like donuts, cakes, sandwiches, pasta, etc. It feels like they want me to 'slip-up' and eat the forbidden foods to prove to them that I'm not really sick, but just being a drama-queen.

I went back in my memory though....back to before my diagnosis, and I realized that this is how they reacted to anything I did that was not traditional in their minds. I can't say that I've ever had a healthy or happy relationship with any of them. So the celiac is just another issue that brings out the worst in them.

I make sure never to be around them at meal times, and I don't spend major holidays meals with them either (never again after the heavily gluten laced 'organic turkey' they prepared a while back).

best of luck

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Well, some people laugh off things they find uncomfortable.

But, I would encourage you to sit down with your mom - nowhere near dinnertime - and talk to her about how her reaction to you makes you feel. Not about whether or not she can remember, not about whether or not she believes you, not about whether or not she cares - just about how her demeanor in talking to you hurts you. Let her know what it is that hurts you, and how she might be able to avoid it. Ask her if she's uncomfortable about these things, or if she wants to ask you any questions. And after that, stop tolerating the behavior. At this point, you know what she's going to do, and by letting her do it, you are allowing yourself to be hurt. Call her on it when it starts, telling her "Mom, you know that's not an appropriate way to avoid hurting my feelings and making me feel like you just don't care about my health. Please be more respectful."

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Well this thread sure generated response.

Goes to show you, most of us have some of these difficult people in our lives.

What great replies! If I could think of something to say I would. I think the bases got covered very well.

Claire

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Your Mom's behavior sounds so "passive-aggressive." It' s the giggle that makes me feel like she's testing you to see if you'll cave in to her wishes and eat gluten; you eating gluten would be her triumph. Like the other poster said about people who are dieting to lose weight and someone offers them something bad to eat.

Next time it happens suggest to your Mother that perhaps she needs Aricept since she's starting to be forgetful and you've been telling her for so long now what gluten free is and now you're worried that she's developing a cognitive disorder in her old age. That might stop her behavior.

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Man you ppl want to strike back with such venom. :huh: Lets not forget when everything is said and done, this is HER MOTHER not some random ladi in the deli.

My suggestion is be better prepiared with "Sure we can eat at Chickfila cause I have their gluten free menu here in my purse/pocket/head". And let it go.

I would also work on educating her. It sounds liek she thinks this is a fad diet of some kind, try to find a loving way to connect this to diabiets or cancer level of seriousness and I think she would come around.

Just my thoughts...

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Next time it happens suggest to your Mother that perhaps she needs Aricept since she's starting to be forgetful

Just remember guys, brainfog (and even Alzheimers) is a symptom of celiac. SHE might have it herself :blink: .

Oh, BTW, frustratedneicy. I'm from PA, too. And Carlisle, where I work is not quite an hour from Jacobus.

Hugs, Stef

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I aam confused about something. this is a little of the subjectbut ianm said his dad and brother are have the symtoms such as weight gain etc... I thought with celiac disease you lost weight??? Now he is saying weight gain??? Please help me clear this up. Do you gain weight or lose weight generally??? Or is it at certain stages??

Thanks Barb

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Hello Barb,

quite a lot of years ago doctors thought, that you generally lose weight and have to be a child, when you have celiacs disease. A couple of years ago however they found out, that celiac isn't a childhood disease and that you also can be obese. There is no such thing as generally gaining or losing weight. Everybody reacts different.

Now the big question is, as you already asked, is this due to certain stages? Or is it just different bodies reacting different???

Hugs, Stef

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My husbands grandmother is like this. If I go to her house to eat I have to bring food for my son and I to eat. She doesn't understand how I could have lived my whole life and not known I had it. So when I come and have to bring our own food to eat, because she has never tried or even wanted to try to understand this disease, she then accuses me of not liking her food. Last time we came she handed me a loaf of bread and peanut butter and jelly to make a sandwich if I didn't like her food! HELLO! Anyway, it is frustrating and my husband just says she is old, but she isn't that old! It makes me feel bad of course, but I am not going to be sick because of her.

My mom probably has this too, but won't get tested. Says she doesn't have the time. My legs were aching for awhile and I told her I thought it was from eating gluten and she just refuses to believe that that would cause that. Even though my GI doctor says it will in some people. ON another note she has baked gluten-free cakes, spent hundreds of dollars on foods for my son and I to try and is planning a whole gluten-free menu for Christmas for a week, so she does try sometimes. As far as her having celiac, she tried the diet for a month without cutting out Modified food starch, cheating on an every other day basis(HA!) and I think she doesn't want to know, because she isn't that sick that she wants to change her way of life.

I am sorry your mom is that rude to you. SHe is definitely rude. I would give her some statistics about celiac disease causing cancer, etc. for people that don't follow the diet and see what she thinks then. I think sometimes our families don't want to accept it, because they want to be able to eat at Chik-Fil-a with you! It affects them every once in a while! Sad they are that selfish, but you know.

Monica

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I aam confused about something. this is a little of the subjectbut ianm said his dad and brother are have the symtoms such as weight gain etc... I thought with celiac disease you lost weight??? Now he is saying weight gain??? Please help me clear this up. Do you gain weight or lose weight generally??? Or is it at certain stages??

Thanks Barb

Some people lose weight, the classic symptom, others gain weight and some have no symptoms at all. There are quite a few weight gainers here. When I get glutened I bloat up like a balloon and pack on the pounds. When I stopped eating gluten the weight came off rather quickly. There are some posts on this forum that state that weight gain is now believed to be more common than weight loss.

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