Attn: Non-celiacs....i Need Your Help

[azmom3]

I'm interested in getting feedback from people who do not have celiac, but have friends or family members that do.

My son was recently diagnosed with celiac and I want my family to be supportive and understanding of the changes we need to make. You are obviously at least some what supportive of your friends/family since you're on this site and I'm wondering how they told you about it and/or what things you wanted to know about it from the start. Or maybe how you felt initally when they told you.

So far, other than my mom (who read an entire book on celiac the first day I told her), nobody has shown any interest in finding out more about it or even acknowledging to me that they know or anything. I don't know what would be best for them to hear without sounding pushy or like I'm trying to get attention for my son. Or is it best to not discuss it unless they're caring for him or going to be feeding him?

I figured you guys would know best. Thanks for any advice you can give me to make this easiest for me and my family.

[debmidge]

I was with my husband, in the Dr.'s office when he was informed and it gave us peace to know that he wasn't crazy for feeling ill for 27 years and we hoped we could finally have a real life together.

His relatives were supportive, but not knowledgable about the dos and don'ts and may not have gotten all the rules down pat and in some cases flaunted the rules, just to test him to make sure he's not on some wacky food crusade. So we now avoid some close relatives - we do not eat meals at their home as they aren't "kosher" enough for hubby. It was easier than the stress of wondering if this was going to be the meal which would "gluten" him. - his princess sister cooked everything with a hunk of italian bread hanging out of her mouth, with crumbs flying every which way - so we passed on all future meals.

My family: understands, but it's overwhelming to them

[celiac mom]

No one in my family or my husband's family had ever heard of celiac before my son was diagnosed 2 years ago. Whenever we are having a family dinner, I usually bring something that I know my son can eat. I question my siblings about how the turkey (Thanksgiving and Christmas) is prepared and I make myself kind of a pain to them. After a few times, they understood. My in-laws are kind of clueless, so my son usually eats something at home before we go there. It makes my husband upset, but that's the way it is! People just don't get it, and they think because there is not an immediate life-threatening reaction that a celiac has, it's okay to "slip" every once in a while. It takes people time to adjust. I know when I first was faced with cooking with no gluten, I was so lost. I cried in the grocery store, until I found websites to help me. Whole foods is wonderful, but this site is the best for advice. All of our meals are gluten free if my son is home, and frankly it's actually lowered my cholestrol! I was tested negative for celiac, but it's a cool perk anyway. Just give it time, believe me it will get easier. Sometimes it's just best to eat at home or bring stuff you know your son can eat if you have a party to go to. That way you know you are protecting him, and that's really your ultimate goal is anyway. Good Luck, we have all been there!

[azmom3]

No one in my family or my husband's family had ever heard of celiac before my son was diagnosed 2 years ago. Whenever we are having a family dinner, I usually bring something that I know my son can eat. I question my siblings about how the turkey (Thanksgiving and Christmas) is prepared and I make myself kind of a pain to them. After a few times, they understood. My in-laws are kind of clueless, so my son usually eats something at home before we go there. It makes my husband upset, but that's the way it is! People just don't get it, and they think because there is not an immediate life-threatening reaction that a celiac has, it's okay to "slip" every once in a while. It takes people time to adjust. I know when I first was faced with cooking with no gluten, I was so lost. I cried in the grocery store, until I found websites to help me. Whole foods is wonderful, but this site is the best for advice. All of our meals are gluten free if my son is home, and frankly it's actually lowered my cholestrol! I was tested negative for celiac, but it's a cool perk anyway. Just give it time, believe me it will get easier. Sometimes it's just best to eat at home or bring stuff you know your son can eat if you have a party to go to. That way you know you are protecting him, and that's really your ultimate goal is anyway. Good Luck, we have all been there!

Thanks for your feedback on this. As long as we protect our kids, that's the big thing...I agree. Too bad there's just not more education for everyone else. Good luck to you and hope it gets better with time.

[Jennas-auntie]

Hi! I think the family issues must be one of the tougher aspects of the disease. In my case, when my neice was diagnosed none of us really knew anything much about celiac. As I learned more, I just felt that there should be at least one other house she could go and know there would be some gluten-free food there in her own box that she could eat. When she is here (pretty frequently) I try to cook food for everyone that is gluten-free so she isn't eating a frozen gluten-free waffle when everyone else has pizza or something. I just think it's hard enough being a kid and feeling different without constantly having to worry about the foodstuff aspect. I clear things with my SIL ahead of time, and I've always liked eating health type foodstuff anyway, like tofu or flaxseed, so felt comfortable in the health food store to start with. Also my SIL gave me a list of which places in town have gluten-free food and keeps me updated on what she likes, as in "she just loves these new K-Toos cookies, they taste just like real oreos" and has asked me to come along to celiac walks, which we have done (where you learn a lot and get free coupons or sometimes free food).

My SIL & BIL say it's frustrating that so much of the family is like, "oh, that's too bad you can't eat anything" and then bring all non-gluten-free food to family get-togethers and such. I try to make sure what I bring will be gluten-free to try to make up for that. One thing that might help, is if you find someone in the family who is interested in learning about it, make them your ally. I'm sure it gets old having to constantly feel like you are repeating yourself over and over. My SIL gave me brochures about it at the beginning, which was helpful, because then you could learn in bits at a time and it wasn't her saying the same initial things five times in a row. Brochures are also small and compact. You can stick them in your bathroom with the magazines for visitors too:)if you have magazines in there. You can send them in the mail with your Christmas cards, that sort of thing. Anyhow, now that I've learned more, I can help explain to the rest of the family. I try to do this in little ways so that it might seem less like my neice's parents are being pushy if it's more than just them always explaining things. It doesn't hurt that I've become convinced there are other people in the family who need to be tested. Maybe the more they know the more likely it will become that one day they will think, "huh, maybe I should get checked for that". Some people are never going to be interested or care, and everyone has to make their own choices about their health. But you just never know, some of it might actually sink in.

[azmom3]

Hi! I think the family issues must be one of the tougher aspects of the disease. In my case, when my neice was diagnosed none of us really knew anything much about celiac. As I learned more, I just felt that there should be at least one other house she could go and know there would be some gluten-free food there in her own box that she could eat. When she is here (pretty frequently) I try to cook food for everyone that is gluten-free so she isn't eating a frozen gluten-free waffle when everyone else has pizza or something. I just think it's hard enough being a kid and feeling different without constantly having to worry about the foodstuff aspect. I clear things with my SIL ahead of time, and I've always liked eating health type foodstuff anyway, like tofu or flaxseed, so felt comfortable in the health food store to start with. Also my SIL gave me a list of which places in town have gluten-free food and keeps me updated on what she likes, as in "she just loves these new K-Toos cookies, they taste just like real oreos" and has asked me to come along to celiac walks, which we have done (where you learn a lot and get free coupons or sometimes free food).

My SIL & BIL say it's frustrating that so much of the family is like, "oh, that's too bad you can't eat anything" and then bring all non-gluten-free food to family get-togethers and such. I try to make sure what I bring will be gluten-free to try to make up for that. One thing that might help, is if you find someone in the family who is interested in learning about it, make them your ally. I'm sure it gets old having to constantly feel like you are repeating yourself over and over. My SIL gave me brochures about it at the beginning, which was helpful, because then you could learn in bits at a time and it wasn't her saying the same initial things five times in a row. Brochures are also small and compact. You can stick them in your bathroom with the magazines for visitors too:)if you have magazines in there. You can send them in the mail with your Christmas cards, that sort of thing. Anyhow, now that I've learned more, I can help explain to the rest of the family. I try to do this in little ways so that it might seem less like my neice's parents are being pushy if it's more than just them always explaining things. It doesn't hurt that I've become convinced there are other people in the family who need to be tested. Maybe the more they know the more likely it will become that one day they will think, "huh, maybe I should get checked for that". Some people are never going to be interested or care, and everyone has to make their own choices about their health. But you just never know, some of it might actually sink in.

Thank you so much. YOu sound like every celiac's perfect relative! I like the ally idea and would agree that this sounds like the way to go. People just seem so much more apt to listen when it's someone else telling them for some reason. I like the brochure idea, too..probably better than a book, which they may never find the time to read or suggesting a website, which they'll probably never go to. Thanks again and keep having those gluten free foods for her. I bet your SIL and BIL really appreciate it

[Jennas-auntie]

You're welcome & thanks! One other thing that was sooo helpful to me as a clueless relative trying to become knowledgeable at the beginning was when I tried to make something gluten-free...and it wasn't. Some people would hear the "thanks but I can't/she can't eat that" and get defensive, I might have too, but my SIL was so good about being very thankful I'd attempted something or gotten something I'd thought was gluten-free and it wasn't. She'd thank me about three times for the effort and then mention how annoying it was that most manufacturers weren't clear about what was gluten-free or not (like when you make something with what you think is a gluten-free soup, and it is, if you buy the regular version, but not if you buy the low fat version of the same thing in that brand). Kinda deflected the fault from just me to the general frustrations of dealing with trying to eat gluten-free. Anyhow I would really encourage any small efforts any family member does make, because it is really easy to get discouraged and not try again if you think it isn't appreciated or that it is just too hard.

[azmom3]

Thanks! One other thing that was sooo helpful to me as a clueless relative trying to become knowledgeable at the beginning was when I tried to make something gluten-free...and it wasn't. Some people would hear the "thanks but I can't/she can't eat that" and get defensive, I might have too, but my SIL was so good about being very thankful I'd attempted something or gotten something I'd thought was gluten-free and it wasn't. She'd thank me about three times for the effort and then mention how annoying it was that most manufacturers weren't clear about what was gluten-free or not (like when you make something with what you think is a gluten-free soup, and it is, if you buy the regular version, but not if you buy the low fat version of the same thing in that brand). Kinda deflected the fault from just me to the general frustrations of dealing with trying to eat gluten-free. Anyhow I would really encourage any small efforts any family member does make, because it is really easy to get discouraged and not try again if you think it isn't appreciated or that it is just too hard.

Yet another good idea...I could see how easy it would be for the celiac person or family to instinctively say "oh he can't have that" since they're so used to doing it, but I can also see how that could easily hurt the other person's feelings who went so far out of their way to do things right and it still wasn't ok. That's good to hear your perspective so I can be just as sensitive to them as I hope they will be to us. Thanks again adn if you think of anything else, let me know.

[Tori's Dad]

I need to change my user name because we found out that my wife also has celiac!

Anyway, I am extremely lucky in that all of my daughters Grandparents, aunts and uncles were very eager to learn about celiac. When we had the meeting with the nutritionist there were 6 of us there!

I think our general approach to it is going to be very low key. In other words, if we eat over at a relatives (which we have done very little of so far) we will simply plan to bring my daughter and wife their own food with us. As you all know, you can't just know a little about Celiac and prepare safe food. You have to know a TON about it and cooking a gluten-free meal takes a lot of work.

Rather than "scare off" relatives from inviting us over or have them worry about what to fix, we just let them off the hook and provide it ourselves.

Also, we don't want our 5 year old to feel like something is "wrong" with her or that she is making others go to a lot of work just for her. I am sure she feels different enough as is so if she hears yet another 30 minute explanation we give to a relative on how to cook for her it only makes it worse.

I have found that if I set my expectation level low for what others will do to accomodate us, the less likely I will be disappointed.

[ryebaby0]

My son, and a year later, my husband were both diagnosed with celiac . Our families live fairly far away and as a consequence, we don't see them all that much but when we do, a few things have made life SO much easier:

My mom and SIL both clear, disinfect, and mark off a "gluten free" zone in their kitchens, for us to keep our stuff. Mom and MIL both create gluten-free shelves in their refrigerators for us. We bought both families a copy of Danna Korn's book and gave it to them, saying, put this on a shelf in case you have questions sometime when we aren't there. We also photocopied some of our more heavily used gluten-free lists and gave them copies, so when they wanted to buy gluten-free stuff, they (and we) could be sure it was right. We always have turkey or ham for family dinners, cooked in a disposable aluminum pan. (My mom said "Finally! A reason not to do dishes your father will live with!")

One thing they don't do -- they don't try to cook for us. That would probably be different if we lived closer, but it's not worth it for them or us to try it a few times a year. They do make sure they have gluten-free drinks, peanut butter and crackers, Skittles, and Amy's mac/cheese in the house, but that's it. My son is sure his grandmothers will poison him through intattention to those little details (mom once stirred his pasta with a glutenated spoon) and it's just harder than they think, God bless 'em.

Good luck -- you can do this!

Joanna

[azmom3]

My son, and a year later, my husband were both diagnosed with celiac . Our families live fairly far away and as a consequence, we don't see them all that much but when we do, a few things have made life SO much easier:

My mom and SIL both clear, disinfect, and mark off a "gluten free" zone in their kitchens, for us to keep our stuff. Mom and MIL both create gluten-free shelves in their refrigerators for us. We bought both families a copy of Danna Korn's book and gave it to them, saying, put this on a shelf in case you have questions sometime when we aren't there. We also photocopied some of our more heavily used gluten-free lists and gave them copies, so when they wanted to buy gluten-free stuff, they (and we) could be sure it was right. We always have turkey or ham for family dinners, cooked in a disposable aluminum pan. (My mom said "Finally! A reason not to do dishes your father will live with!")

One thing they don't do -- they don't try to cook for us. That would probably be different if we lived closer, but it's not worth it for them or us to try it a few times a year. They do make sure they have gluten-free drinks, peanut butter and crackers, Skittles, and Amy's mac/cheese in the house, but that's it. My son is sure his grandmothers will poison him through intattention to those little details (mom once stirred his pasta with a glutenated spoon) and it's just harder than they think, God bless 'em.

Good luck -- you can do this!

Joanna

thank you!

[maggee]

I am still struggling with family a year later! They think my son and husband will someday "grow out of it". A few think it is a 'made-up' disease. Even my husband's relatives who may benefit from this knowledge (& testing!) are in denial. It is frustrating that they don't get it but I found I made the most "progress" and protected my son by composing an email to all our relatives at once (so no one felt singled out). I provided a brief explanation of celiac, a link to this website, and I explained that from now on I will always bring food and hosts should not be insulted. That we cannot trust gluten-free food they make (found that one out the hard way) and that we do not want my son to hear the continuous remarks...

"poor child can't have birthday cake" or "just give him a small piece"

or any more diagnosis by the medical-amatures ("probably just a virus", "he can have spelt - it's not wheat")

Of course it will never get through to some but I did find after the email fewer comments at recent gatherings. Hopefully in time I will be able to report some real progress with my relatives

Just provide all the necessary info and leave the rest up to them. I hope you get the support you need.

[azmom3]

I am still struggling with family a year later! They think my son and husband will someday "grow out of it". A few think it is a 'made-up' disease. Even my husband's relatives who may benefit from this knowledge (& testing!) are in denial. It is frustrating that they don't get it but I found I made the most "progress" and protected my son by composing an email to all our relatives at once (so no one felt singled out). I provided a brief explanation of celiac, a link to this website, and I explained that from now on I will always bring food and hosts should not be insulted. That we cannot trust gluten-free food they make (found that one out the hard way) and that we do not want my son to hear the continuous remarks...

"poor child can't have birthday cake" or "just give him a small piece"

or any more diagnosis by the medical-amatures ("probably just a virus", "he can have spelt - it's not wheat")

Of course it will never get through to some but I did find after the email fewer comments at recent gatherings. Hopefully in time I will be able to report some real progress with my relatives

Just provide all the necessary info and leave the rest up to them. I hope you get the support you need.

Thanks! Sorry, it's been rough for you guys...that sounds like more of the norm though for people with celiac unfortunately. It would help if there was more information about it made public...maybe Primetime will do a special on it one day or something and open up some people's eyes. Now that I know the signs, I have a couple nieces I suspect could have celiac, but I'll be shocked if their parents' test them. Good luck to you and thanks again!

[Nic]

In a sense, I was lucky. My family is very close, not just immediate family but aunts, uncles and cousins as well. We actually get together and celebrate everyones birthdays (21 in all) and all the holidays. So when my son was sick, everyone saw it and was a part of it. They saw how awful he looked and how sick he felt. The whole family was a supportive of finding a diagnosis and when we did, they all became equally supportive of his dietary needs.

Some of the family cooks separately for him when we have a gathering, others offer to but I don't always taking them up on it because I worry about them not understanding the cc issue.

It would be very sad if they were not supportive but then I just wouldn't let them care for my son. Certainly not cook for him or serve him any food. Hopefully, your family will be as supportive.

Nicole

[Esther Sparhawk]

What is it with family members who take it personally? I realize everyone has their recipes that they love to make for everyone -- Aunt Ruth's blackberry cobbler, Grandma's oyster casserole, cousin Beth's world famous turkey gravy or whatever -- and nobody wants to alter their favorite recipes, but why do they have to be so offended when I alter their favorite recipes? What difference does it make whether I use rice crackers or Saltines in Grandma's oyster casserole?

One of my aunts went as far as to say, "I refuse to make two seperate meals while you stay with us, so just tell me what Annie can eat, and I'll make that." Then she proceded to make food Annie couldn't eat, because what I suggested sounded too absurd to her. This aunt, in particular, has really hurt my feelings about Annie's diet. In fact, I hope we never have to eat at her house again.

When I think about how hard I've worked to get Annie on a healthy, comfortable diet, and how little respect anyone has for my efforts and achievements, I just want to cry. Annie is three years old, and by keeping her on this diet, I'm hoping to give her the chance to outlive me. I have to remind myself of this fact every day. I just want Annie to be able to live longer than I do, and this goal is important enough to put up with all the crap from insensitive family members.

Mechelle

[azmom3]

What is it with family members who take it personally? I realize everyone has their recipes that they love to make for everyone -- Aunt Ruth's blackberry cobbler, Grandma's oyster casserole, cousin Beth's world famous turkey gravy or whatever -- and nobody wants to alter their favorite recipes, but why do they have to be so offended when I alter their favorite recipes? What difference does it make whether I use rice crackers or Saltines in Grandma's oyster casserole?

One of my aunts went as far as to say, "I refuse to make two seperate meals while you stay with us, so just tell me what Annie can eat, and I'll make that." Then she proceded to make food Annie couldn't eat, because what I suggested sounded too absurd to her. This aunt, in particular, has really hurt my feelings about Annie's diet. In fact, I hope we never have to eat at her house again.

When I think about how hard I've worked to get Annie on a healthy, comfortable diet, and how little respect anyone has for my efforts and achievements, I just want to cry. Annie is three years old, and by keeping her on this diet, I'm hoping to give her the chance to outlive me. I have to remind myself of this fact every day. I just want Annie to be able to live longer than I do, and this goal is important enough to put up with all the crap from insensitive family members.

Mechelle

I think we probably just have to avoid being in situations like this as much as possible, and when in them, try to ignore the stuff you don't need to see or hear. If possible, maybe bring her own food. One day down the road, when there's a lot more public awareness about celiac, these people will feel badly for the way they acted. Who knows, maybe one day, they will be diagnosed with it and realize how serious it really can be. I'm so sorry you had to go through this. Good luck to you.

[seattlecdfriend]

Food can mean a lot of different things to different people, both good and bad. Imbedded in those meanings are values, traditions and generational backgrounds. When someone's diet challenges those values and traditions, the response can be at best unreasonable since the pushback isnt necessarily from the family members, but from the years of tradition behind those items. They may come around though.

This is a value challenge for them and again, hopefully they will come around. azmom3's advice is awesome about ignoring the stuff you dont need (or want) to see and hear.

My learning curve on this topic is still growing. Luckily, my friend does have incredible support from her family. I'm sorry you or azmom3 dont have that at this time. Until family members see gluten as "poison" and can realte to what it would be like if they were poisoned, unknowingly and without predictability, there is a dark veil hiding your reality- as a mom and protector- from them. I'll pray the darkness is lifted from their eyes for you and azmom3.

[STINGER]

I'm interested in getting feedback from people who do not have celiac, but have friends or family members that do.

My son was recently diagnosed with celiac and I want my family to be supportive and understanding of the changes we need to make. You are obviously at least some what supportive of your friends/family since you're on this site and I'm wondering how they told you about it and/or what things you wanted to know about it from the start. Or maybe how you felt initally when they told you.

So far, other than my mom (who read an entire book on celiac the first day I told her), nobody has shown any interest in finding out more about it or even acknowledging to me that they know or anything. I don't know what would be best for them to hear without sounding pushy or like I'm trying to get attention for my son. Or is it best to not discuss it unless they're caring for him or going to be feeding him?

I figured you guys would know best. Thanks for any advice you can give me to make this easiest for me and my family.

[STINGER]

I AM NEW TO THIS WHOLE THING. JUST EARLIER THIS WEEK INFACT. MY BEST FRIEND,(AND SWEETHEART'S SISTER) WAS DIAGNOSED. I WENT TO THE SUPERMARKET, WITH PAPERS IN HAND LISTING WHAT SHE CAN AND CAN'T HAVE, AND TO THE HEALTHFOOD STORES SEARCHING FOR ACCAPTABLE SUBSTITUTIONS FOR HER. RIGHT AWAY I WENT ON LINE LOOKING FOR SITES, AND RECEIPES JUST FOR HER, INFACT MAKING A RECEIPE BOOK JUST FOR HER. I AM ALSO LUCKY IN KNOWING A FOOD SCIENTIST WHOM I CAN CALL AND ASK WHAT MAY BE SUBSTITUTED FOR OTHER INGREDIENTS. AND IF I DON'T KNOW WHAT SOMETHING IS, THIS IS A TREMENDOUS HELP. THIS IS A LEARNING PROCESS FOR US ALL. NOT JUST FOR HER. THIS AFFECTS HER QUALITY OF LIFE....FOREVER. SHE HAS SUFFERED ENOUGH, AND IN MY OPINION WE ALL NEED TO LEARN ABOUT IT, AND MOST OF US ARE ACTIVLY SEARCHING OUT INFORMATION. IT DOES HELP, AND MAKES A BIG DIFFERENCE THAT THE WHOLE FAMILY IS VERY CLOSE KNIT AND ACTIVELY INVOLVED ON A DAILY BASIS. I ASKED FRIENDS IF THEY KNEW ANYTHING ABOUT IT, AND IF THEY DID THAT WAS GREAT, AND EVEN FOUND A FEW WHO KNEW PEOPLE AND WERE ABLE TO POINT ME IN SOME RATHER HELPFUL DIRECTIONS. IN MY OPINION, IF YOU CARE FOR SOMEONE, YOU WOULD WANT TO BE AS HELPFUL AS POSSABLE, AND FIND OUT AS MUCH AS POSSABLE ON THEIR CONDITION, TO MAKE THEM MORE COMFORTABLE. IN THIS CASE FAMILY GET TOGETHERS WILL BE GLUTEN FREE! WE WILL ALL BENIFIT.

[seattlecdfriend]

Learning is always a good thing. Run with that idea about family get togethers being gluten free!

Its awesome that she can have have someone around her to validate what she nay have know for a long time. Have fun learning. There is much in that and an even greater need for NCD's who understand and can help and encourage. That is certainly in my friends life.