Family Support Issues

[rez]

Hi. Is anyone else having a really hard time dealing with family members. My son's results aren't in from Enterolab yet. I'm going crazy!! I had a really bad weekend with my family this past weekend. It's like everything's an inconvenience. We used to eat out a lot. My mom and sister and I have always been really close, but I feel there is a lot of tension and stress right now and it is really damaging our relationship. I guess no one really understands what we've been through. It's hard. Just wondered if anyone else is having similar issues. Thanks.

[CarlaB]

I think pretty much all of us here have been through that. No one will ever understand, the best you can expect is their support and cooperation. We used to eat out a lot, and now almost never .... it's the hardest part.

[Jestgar]

I think it's a hard thing. I mean come on, you're allergic to FOOD!!!

Give them some time to come to terms with it and hopefully it will get easier. In the mean time, come here for support. It's one small part of the world where you can be and say whatever you want or need to.

[2kids4me]

Whne the kids were first diagnosed - you' d have thoguht I made everyone's life difficult and complicated family meals and made extar work. In time they have realized its not that mush of a fuss, if they just let me provide the gluten-free options for my kids.

I made the point one time when i responded with : I know it's confusing at first - imagine how my life shifted the moment we found out? This is every day, every school lunch, every BD party... every shopping trip...

They are now way better, and wanting to make meals safe (the big holiday meals)

[jerseyangel]

Yea, I think this is one thing we can all relate to. It's hard, but hopefully when they see that the diet is working, and that it's not so big a deal to you, then hopefully it won't be such a big issue to them, either.

We used to eat out every weekend--I never even cooked on the weekends, except Sunday breakfast--but in the past year and a half, I've been out to dinner exactly 3 times!

[rez]

I think it's a hard thing. I mean come on, you're allergic to FOOD!!!

Give them some time to come to terms with it and hopefully it will get easier. In the mean time, come here for support. It's one small part of the world where you can be and say whatever you want or need to.

Thanks so much for the support and kind words. The higher expectations I have from them, the more I'm let down. I just need to move on and put all this negative stuff behind me. I really find comfort in talking to people who have this. No one understands until you've walked a mile in someone's shoes. My family is from a small town and they're all stuck in their ways. My family also has a weight problem. At family gatherings, it's always a bunch of fattening stuff and nothing in it's original form. It's frustrating. My sister was mad at me because I put a black cloud over her weekend because she was thinking she may have this. Hello! It is genetic. I'm just tired of being "challenged" all the time. She also proceeded to tell me that she feels sorry for my other 2 kids because I have neglected them because I've been so busy investigating this disease and trying to make my son better. They think it's cruel that I would have my other two tested. It's sad how much of our society revolves around food. I wanted to call the butcher shop to ask if they used breadcrumbs in their sausage and my dad said absolutely not could I call out there. How emberassing it would be for my family. They don't get it. The more I think about it, the more it infuriates me. They're making me look like the bad guy. I feel like never speaking to them again, but I know that's irrational and impossible. Our family is very close and my kids adore my parents. Please help!

[Jestgar]

I think it is ok to not speak to them for a little while. Just tell everyone that this is a little overwhelming and you appreciate their support (Yeah, but say it anyway) but you need to learn to deal with this as a family before you can deal with it as an extended family.

And you call that butcher shop if you want to. Or at least go there in person and find out. Even if you have no issues with food you have a right (interest, curiousity...) to know what's in your food. Ask them about everything they put in, they might be pleased for all you know.

It does get depressing sometimes, reading every single stupid lable, but on the other hand, you are teaching all your children to be aware of what they eat. This is good for them, and they will be healthier people for it.

[kbtoyssni]

It sounds like you are doing the right thing in trying to keep your son safe. Keep doing what you're doing; he needs you to do it. You may have to stop talking to your family about this. If you're going to get comments like "don't call the butcher - you'll embarrass us" it might be best for your mental health to not tell them you're calling the butcher.

It's too bad that the rest of the family isn't being supportive. For some people the concept of food intolerances is completely foreign. "What do you mean bread makes you sick??? I love bread and my life would be ruined without it!!!" What they don't realize is that your son's life is being ruined WITH it. Maybe after a while they'll see how "easy" it becomes for you and how much healthier your son is.

You may want to alter your family interactions. Invite them over to your house more for home-cooked gluten-free dinner. Suggest meeting at the local park for a walk or have everyone bring their own picnic lunch. Or movie or game night instead of going out to eat. But do not let them guilt you into feeling badly about what you're doing. You are doing exactly what you need to.

[wifeandmomofceliac]

Thanks so much for the support and kind words. The higher expectations I have from them, the more I'm let down. I just need to move on and put all this negative stuff behind me. I really find comfort in talking to people who have this. No one understands until you've walked a mile in someone's shoes. My family is from a small town and they're all stuck in their ways. My family also has a weight problem. At family gatherings, it's always a bunch of fattening stuff and nothing in it's original form. It's frustrating. My sister was mad at me because I put a black cloud over her weekend because she was thinking she may have this. Hello! It is genetic. I'm just tired of being "challenged" all the time. She also proceeded to tell me that she feels sorry for my other 2 kids because I have neglected them because I've been so busy investigating this disease and trying to make my son better. They think it's cruel that I would have my other two tested. It's sad how much of our society revolves around food. I wanted to call the butcher shop to ask if they used breadcrumbs in their sausage and my dad said absolutely not could I call out there. How emberassing it would be for my family. They don't get it. The more I think about it, the more it infuriates me. They're making me look like the bad guy. I feel like never speaking to them again, but I know that's irrational and impossible. Our family is very close and my kids adore my parents. Please help!

Today I feel very fortunate to have the understanding of family and friends. This did not always hold true. One side of the family bent over backwards to make meals safe, and I only had to bring one dish, just like everyone else did. They are used to dealing with food issues, and just made sure to check with me about how to prepare whatever was planned so it would be gluten-free and tasty. Obviously I make sure to accomodate their food issues as well. It was a curve ball, not a catastrophe. The other side of the family acted like I was nuts when my daughter was diagnosed. And, oh my, you should have seen them when my husband realized he is gluten intolerant too. "You're a grown man. How could you suddenly become celiac?" yada yada. Anyhow, over time they have accepted that this is a way of life for their loved ones and they really do care. So they do their best to make sure gatherings are easy on everyone, now. Think positive. I am hopeful that over time your family will rally around you as well.

[rez]

Thanks for all the supports and replies. I think less is more, and in this case I'm going to stop talking about it with them until I get it all figured out for my family. Thanks again. I feel better already.

[Queen Serenity]

Rez,

I'm glad that you are feeling better about this issue. If you want your family to truly understand Celiac's, then get them to read the posts on the board. Tell them that it will help them to understand the situtaion and how serious it is for your son. If they don't seem to accept this as a good idea, then maybe you should take a breather from them. It's a ridiculious concept that family cannot understand how bad this really is for anyone. It is never going away. It is a lifetime disease. They need to understand this. So, see if you can get them interested in learning. If they do this for you, then they are truly close to you, and your family. If not, then it's a sad day for you, because you just realized that they are more at a distance then you thought.

Vicki

gluten-free for 11 years

[2kids4me]

Rez, I am glad you are feeling better too. You can feel like a weight is lifted when you stop worrying how others react - thats their problem.

I have relatives that go all quiet or leave the room or make stupid comments when my son or I test our blood sugar and give insulin. My mother who got her nursing degree in 1956 and then never used it -- launches into stories about how they used to use glass syringes etc and how "lucky" ds is that they have such tiny needles now. ok, umm, while he's injecting his insulin and he's 12 yrs old...lucky isnt the word he'd use.

With regard to asking about ingredients - I have never run across any business that was not happy to talk with me and address any concerns. A couple of places were quite busy and asked if I could come back at a quiet time (they would tell me when that was) so they could spend the right amount of time with me.

Call any place you wish and you dont have to tell anyone or ask anyone if you can do it.

My sister was mad at me because I put a black cloud over her weekend because she was thinking she may have this.

hello, she was blaming you for her mood? dysfunctional at its' finest... if it got her thinking she may have it then she should investigate the possibility and regain her health. A functional sister would have given you a hug and been happy that your son feels better becasue YOU had the insight and brains to get it figured out... course my sister (a nurse) offers my kids granola bars and then gets annoyed when I remind her they have wheat guess may of us have similar family members!

You are not alone - come here often, and once you get the hang of everything - it will get easier.... best weekend for us was when I mastered choc chip cookies and brownies (Pamela's mmmmmmmmmm)

[lonewolf]

I'm feeling frustrated about the same thing. My mom is very supportive - even takes gluten-free flour home and bakes cookies for my kids. I don't see my siblings or extended family very much, so it doesn't matter.

We live close to ALL my husband's family. One sister in law is very supportive and one tries, but I just can't trust her. One SIL just ignores it, but at least I know I can't eat what she makes. The rest of the family thinks I'm a hypochondriac. Now that my son is gluten-free too, they think I'm totally whacko. They just roll their eyes about my 15 yo daughter who is gluten-free by choice because she feels better that way.

One of my brothers in law told my 11 year old son that I was crazy and that he should eat whatever he wants. (Same BIL that put breadcrumbs in some grilled meat patties and told me they were fine.) My son actually told me about it. Funny thing is, it had the opposite effect on my son. He knows I'm not "crazy", so he really thought about it. He's been better about not complaining and trying to cheat in the past few days.

I was trying to explain to my MIL that my son does better off gluten, that he can think more clearly and isn't as negative. She was a little open to this. Then I tried to explain that since he has a double copy of DQ1, there is DQ1 somewhere on their side of the family too. She didn't like this at all - no one will take any of her food choices away! (She weighs close to 300 pounds and has some health problems.) We just don't talk about it anymore.

[CMCM]

Aah, the family! I think they will never really understand fully. Which means the ball is entirely in your court. At least, this is what I have found to be true.

I've had digestive issues since birth. I had a "sensitive" stomach. I was finally diagnosed just a year ago at age 56....thru my own efforts by research and getting an Enterolab test done.....but because I am not violently ill by getting a drop of gluten from something (as is the case with my celiac mom), everyone tends to think that I don't really have a serious problem. "Just a touch of gluten sensitivity, or a touch of celiac, or whatever." They all think eating gluten here and there isn't a big deal. I got tired of "educating" everyone, so I eventually just shut up about it all and go my own merry way doing what is best of me.

I just have to make the choices myself. Everyone is fine with what I do, and I don't really discuss or defend it. I just eat carefully. There's certainly no ideal way to handle it.

[MistressIsis]

I also use the peanut allergy & dairy issues to get my point across. Who ever thought they couuldn;t have milk???

I have an overweight sister that pops lactaid pills constantly & has done so for years! She won't even look at going gluten-free for 2 weeks to see if she felt better. She actually told me she called the company that makes them & they said it was fine for her to take one every time she eats anything & that it's ok to take them for years on end....uuuh, of course they're saying that, you're giving them money!

After 2 yrs it's getting better, they no longer offer me organic gluten items. I had a discussion with Mom about CC & she's sending me a new set of dishes & some cutting boards.