[RobynJ]

I have been the organizer of a meetup group for moms for about a year. We are a little outside the norms (a lot of us cloth diaper and babywear)- so we have a group where we can get together and give each other advice. Most the meetups are in homes and people bring snacks and the kids help themselves and carry the food around the houses for the most part. Other than finding popcorn all over my house after having people over- I didn't have a huge problem until we realized my son's gluten and egg allergies.

I have been racking my brain of how I could still do these types of meetups. We can still go to the zoo and parks with them- but I can't see how I could go to a regular get together without hovering over my two year old the entire time. Even if I brought him his own food- someone puts a cookie down- and we are sick again.

I am also a little disappointed with how little they have supported us in this. We have vegans- and I always made sure we had a vegan dish for them. I always made sure to offer the vegan stuff when their kids came to the table. When people had their babies or went to the hospital- the group sent food so they wouldn't have to cook. Elias was in the hospital for three days- nothing- no one even called. In fact one of them jokingly scolded me because I haven't been in touch. I don't expect them to make every outing gluten free, egg free. But we went to a festival today and one of the moms brought over ice cream for everyone but Elias. I am grateful she didn't offer some to Elias- because he couldn't have it anyway (he is also lactose intolerant) but they ate them right in front of him. I had brought some fruit leathers and gave him one of those.

I don't know. Part of me says I am way, way overeacting. I don't expect them to change their lives just because ours has... But part of me is resentful that they can go and buy some ice cream for their kid, that they can do the frosting decoration craft with their kids, that they can just be normal when we can't.

I guess I just feel that if he was allergic to peanuts- it would go without question- they wouldn't serve pb&j. Am I just being really selfish? Will these feeling pass? Do you have any ideas to make it work with the meetups?

I am sorry if it sounds like I am just having a big pitty party. I just don't know who else to talk to. I just feel like no one understands.

[elle's mom]

I went through the same feelings you are describing, especially the "it isn't fair" they get to do this/that etc. . . . with time they will fade away some because you will find special things you can do, they may/may not be different that what you expected, but there are many things. You can still do frosting decorating crafts, you just have to plan ahead and use the appropriate things. For example: carve pumpkins, pick apples, ride hayrides etc. are just some of the recent few. Just steer away from the donuts at the cider mill! Have your own "better" gluten free ones at home before or after. The key is planning ahead.

I do not think you are being selfish, honestly it sounds like they are being quite shallow not to have even apologized for eating ice cream in front of him, or acted like they cared he was in the hospital. It's at times like these you'll find out who your real friends are. I think sometimes people are just in shock and don't know how to act or even talk about it with you. There are many ways you can make the meetups work: your house /your rules. Most popcorn is gluten free OR you could supply the cookies, tell them NO gluten allowed! The question is: are they accepting or resisting, if it's the latter then rethink the necessity of the event/the people. It's hard, we still deal with it every time we get together with people, there's always explaining you have to do, but you just learn to deal with it. After awhile it becomes your new normal. I always tell myself to make sure and not act irritated or upset with people for not understanding in front of dd. I don't want her to grow up resenting her condition.

The reality of it is, aside from people on this forum or others in your situation, they DON'T understand, and they never will. You just have to do your part to educate them and go from there. Don't be afraid to re-evaluate who you hang out with though.

[Raven's Mum]

elle's mom, on Nov 1 2009, 06:22 PM, said:

It's at times like these you'll find out who your real friends are.

Don't be afraid to re-evaluate who you hang out with though.

I totally agree. We went out to our friends house for Halloween, and not only did my friend cook a full on gluten free meal so Raven could have some dinner, even taking in mind that she had to buy some butter that wasn't contaminated, she also dug through her kids candy bag to trade with Raven so she could have more gluten free stuff. Where some people leave you diappointed, others amaze you. Having a kid with health issues can be quite enlightening when it comes to the people in your life.

[ChemistMama]

You don't have to discontinue the playgroups, you just have to set limits as to where they can eat, and they have to wash their hands after snack!! It helps you by keeping your house clean, and helps your son by limiting cross contamination.

Here's an idea; invite everyone over for a playdate and say you'll provide the snack (gluten-free but don't tell them). Go on the internet (like the GIG site) and print out a brochure and talk to them about what celiac is. Teach them about how your son's intestines look like berber carpet instead of shag (worn down villi!) and it's the gluten making him sick, and it's a lifelong thing. Like a poster above said, at times like these you'll find out who your real friends are! If they're accepting, they'll ask for your help to make/buy gluten-free treats, and if not, you're better off without the negative karma.

Unfortunately, cooking gluten-free is so hard I don't ever expect any homemade things from other moms, especially since they aren't half as rigorous as we celiac Moms are. No offense to them, but I just wouldn't trust it. However, it's not an excuse to eat the stuff in front of him without acknowledging it.

Your son is 4 - does he understand about his celiac/egg issues? I have a 3.5 year old, and he's been celiac since he was 18 months. I've 'trained' him well to ask me about everything. This halloween, he dumped out his candy, and started holding candy up in front of my face yelling "MOMMY, IS THIS GLUTEN FREE? THIS ONE??" Hee hee! He understands that he can't have the snacks others have, and 95% of the time isn't upset about it, since he knows that I will have a tasty snack he can have instead. Teaching him around your friends will also give them a look into how hard your situation is, and hopefully they'll show some support. DOn't worry, it gets easier!

[Roda]

RobynJ, on Nov 1 2009, 07:56 PM, said:

I have been the organizer of a meetup group for moms for about a year. We are a little outside the norms (a lot of us cloth diaper and babywear)- so we have a group where we can get together and give each other advice. Most the meetups are in homes and people bring snacks and the kids help themselves and carry the food around the houses for the most part. Other than finding popcorn all over my house after having people over- I didn't have a huge problem until we realized my son's gluten and egg allergies.

Key word here is that you are the organizer. You were the one to set things up and try to meet certain needs. Alot of people rely on one or two people to do things and if they can't no one else will do it. Sorta sad really. (I don't know if this is your case)


I am also a little disappointed with how little they have supported us in this. We have vegans- and I always made sure we had a vegan dish for them. I always made sure to offer the vegan stuff when their kids came to the table. When people had their babies or went to the hospital- the group sent food so they wouldn't have to cook. Elias was in the hospital for three days- nothing- no one even called. In fact one of them jokingly scolded me because I haven't been in touch. I don't expect them to make every outing gluten free, egg free. But we went to a festival today and one of the moms brought over ice cream for everyone but Elias. I am grateful she didn't offer some to Elias- because he couldn't have it anyway (he is also lactose intolerant) but they ate them right in front of him. I had brought some fruit leathers and gave him one of those.


It's unfortunate that it seems that noone stepped up while you were dealing with your family issues. Maybe rethink things. This is why I don't like participating in things like this. It always seemed to me that everything gets stuck on one person like everyone else can't think for themselves.


I don't know. Part of me says I am way, way overeacting. I don't expect them to change their lives just because ours has... But part of me is resentful that they can go and buy some ice cream for their kid, that they can do the frosting decoration craft with their kids, that they can just be normal when we can't.


While I don't expect people to change for me either, some simple compasion is nice once and awhile.
All you can do is the best for your son and it sounds like you are.

I guess I just feel that if he was allergic to peanuts- it would go without question- they wouldn't serve pb&j. Am I just being really selfish? Will these feeling pass? Do you have any ideas to make it work with the meetups?

I am sorry if it sounds like I am just having a big pitty party. I just don't know who else to talk to. I just feel like no one understands.

I hope you don't take what I said as negative. Just my observations from my own experiences. I think these kind of groups have a lot to offer and provides good interaction for everyone.

[ang1e0251]

It's kind of like when we played Sharks as kids. You know, where the dark squares on the floor were sharks and the light squares were safe? You had to be careful not to even touch a dark square or you were shark bait!

If you went to your friend's house and sprayed magic spray all around, every place where a gluteny hand or crumb had touched would turn bright red. If your son even touched those spots, he would most likely be sick.

If your friends could picture it like that, they might have a slight understanding of it. And if they asked what his reaction might be, you can point out that he was recently hospitalized because of gluten.

But most people are not going to get it. They can't because they've never lived through it. I didn't either until I lived it myself and I'm still learning new things all the time about celiac disease. Don't expect them to but do expect them to honor your decisions for the health of your son. If this doesn't happen, then you will have to evaluate how good a friend that person is. Some people are only fair weather friends. You need long term hurricane type friends!

[Anderson's mom]

My son is 2 1/2 and has celiac disease. He also has a twin sister who doesn't and a 6 year old sister who doesn't have celiac disease. I have never taken gluten out of your home for this reason... How else is he gonna know what he can and can't have if it is not around him all the time. I have taught my 6 year old what has gluten in it and what doesn't. She asks if she isn't sure of something before she gives it to him. His twin is even starting to pick up on what Anderson can have and can't have. If he asks for something that contains gluten I always tell him Moma is sorry but that makes you sick and offer him something that is gluten free. I feel it is my responsability to supply gluten free foods at get togethers ( I mean honestly do you REALLY trust that the maker took all the precautions that us gluten-free moms have to?) Most people don't understand celiac disease anyway. they look at it as just an allergy that upsets the stomach, they don't look at the fact that it is an autoimune disease and the body attacks itself and could honestly kill, as it did a friend of mines daughter. I worry about when my 2 1/2 year old goes to school, I can't be there everyday to make sure he doesn't eat anything he shouldn't, so I feel starting now letting him know and see that there are foods he can't have will make it easier in the long run. I know it is hard but look at it positively, and it will get easier.

[elle's mom]

Anderson's mom, on Nov 2 2009, 08:05 PM, said:

My son is 2 1/2 and has celiac disease. He also has a twin sister who doesn't and a 6 year old sister who doesn't have celiac disease. I have never taken gluten out of your home for this reason... How else is he gonna know what he can and can't have if it is not around him all the time.

Our reason was that without a completely gluten free home our dd wasn't getting healthy even after over a year and a half of what we thought was gluten free. It wasn't. I feel that after we became a gluten-free home, she regained her health and her happiness. Plus it is great moral support for her! She is now 4 and she is well aware of what she can/cannot have even though she isn't around it all the time. We still go out to friends/families homes, she goes to pre-school, we go to church etc. so she is exposed to gluten all the time. "Home" is supposed to be a safe haven for a child and I have read many posts from teenagers who struggle with a non-gluten-free home. I'm sure it can be done safely, it was just a step we took to make things easier for our family "for now" but I do not think we'll ever go back. I consider myself very anal and we just weren't able to eliminate cc: babysitters, accidents etc.

[chiroptera]

What really bothers me is that you went out of your way to make sure the vegans had something to eat (which is a choice not for medical reasons typically) and your little one MUST eat gluten and egg free or he could be VERY ill and NOONE carried??????

And he was in the hospital and you got NO support???? What the heck???

I do not think you are wrong expecting the same treatment that you have given back. I don't mean to sound harsh but your family is going through a difficult time right now and you need people who want to understand and be there for you.

If I would you I would find a new group of "friends." I am sorry but I don't think those people were.

Please take care!!!!!

[RobynJ]

I thought I had replied again on Sunday night but for whatever reason it didn't post and I have really long work days on Monday and Tuesday.

I sent a message to the assistant organizers and said that I was fine handling the money and stuff, but I didn't see us doing more with the group until I felt a little more confident about keeping him safe at meetups and he had a chance to heal. I said that if they needed more than just taking care of the business stuff it would be better for me to resign. One of the moms (she is one of the vegans) posted back that they should have come to me to to see what they could do for me. She offered to have an Elias friendly playdate. I just need to send her a list of safe foods for him. So we will see. They usually are pretty suportive... I do think maybe they didn't know how to respond or how hard things have been. I mean in their eyes "it is only a food allergy" I think some of them are starting to get it.
I think I do need to re-examine my relationships.

I think I need to focus my life around those "hurricane friends." I don't expect every place we go to be rearranged for him. I do need friends that will be supportive of our lifestyle and keeping Elias gluten free.

I am so grateful for this board. I really appreciate all the replies. It is nice to have someplace were people understand and won't tell me that "it is only a food allergy," "he will probably grown out of it since he is so young," or that "you know a little bit here and there won't hurt him."

The explanations help so I think I will be better able to talk to them about it. I feel a lot better about things now. I was in a pretty dark place for a couple of days... but I think I am okay now. It is just so nice to know I am not alone.

He is only two so he can't really say no on his own yet- he is still learning about what foods will make his tummy yucky. But I am hoping soon he will be able to say no to things.

Thank you again for everything. I don't know what I would have done in the last few weeks without this board!

[NewGFMom]

You could host the next one. We have a blanket policy at our house that it is gluten free, and all our friends know that. For us, we've made a big deal that our house is the "safe place" for my son, so he doesn't have to think about it there. Everywhere else, he has to be careful, but the house is gluten-free, no exceptions. If we have a party, and people ask what they can bring, we usually suggest they bring drinks or fruit.

You can provide gluten-free crackers or something, just maybe ask the moms to stick to fruit snacks while at your house.

Kids, even toddlers really don't need to snack every fifteen minutes. Theoretically you should be able to get through a two hour meeting without a lot of kid food, depending on what time of day it is.

[RobynJ]

I did have them over and I asked them to keep it gluten free. My sister just moved in with us for a few months and so I don't think we will be able to have people over as much since she works different hours.

[ryebaby0]

Our hosted events are always gluten-free --- I agree that our children need to learn what's okay and what's not, but in their own home, they should not be worrying about cross contamination of sticky cheerio hands on their toys. IMHO, people are so reluctant to host that you should be good with a "when we have playground here, it's no food" or only the food you provide.

But my real question is why no ice cream? Lots and lots of ice cream is gluten-free....

[Pattymom]

My dd is now 5, and it has gotten easier in that she knows waht she can anc can't have, and we have very supportive friends, for the most part, but I do remember one playdate event that I spent diving on the floor after a trail of goldfish before she picked them up. It was kind of a nightmare. I think I did limit some groups contacts. I always took our own food, and if it was at our house, I provided the snacks or kept it gluten free--encouraging fruit and stuff.

while no one really understands, especially in the beginning, most people I have met, when it is explained to them are really great. My son's cub scout den has agreed to stick to gluten free snacks, and we take turns bringing them--it really makes him happy to be able to eat snack there. I wouldn't give up on people until you have a chance to explain it to them. Try talking about how hard it is for you to take care of him, rather than how they dont' understand. usually feelings can be understood.

As kids get older, more kids will have more different health issues, and more parents will understand this better. out of the play group arena, my 3 gluten free kids are all well accomodated. Even in a snack line situation are orchestra rehearsal break, the gluten free food are at the beginning, and my son gets to go through first before it gets contaminated.

As far as a gluten free home, it was easier for us with so many off, and my kids ( even my youngest by age 3-4) knew what she couldn't eat outside, and always asked. Issue was for trick-or-treating teaching them not to tell each person that they couldn't eat that because it had gluten, but just take the candy, say thank you, and we'll trade out later.

Hope it works out quickly, hang in there

Patty

[RobynJ]

ryebaby0, on Nov 5 2009, 05:04 PM, said:

Our hosted events are always gluten-free --- I agree that our children need to learn what's okay and what's not, but in their own home, they should not be worrying about cross contamination of sticky cheerio hands on their toys. IMHO, people are so reluctant to host that you should be good with a "when we have playground here, it's no food" or only the food you provide.

But my real question is why no ice cream? Lots and lots of ice cream is gluten-free....

He is lactose intolerant too.