Do You Have A Network Of Other Parents Of Celiac Kids?

[calabaza78]

My toddler daughter was diagnosed via bloodwork and biopsy two months ago, and has rebounded so well on the gluten-free diet.  I'm so grateful.  However, two months in, I'm starting to feel a bit of self-imposed isolation.  We've gone to playdates and parties, but unfortunately we have had to navigate gluten minefields when we play at someone else's house; and as a 2-year-old, my daughter is not really able to understand why she can't eat the delicious Cheerios that are all over the kitchen and living room floor at a friend's house.  We have had friends over to our house where I can prepare a gluten-free lunch for all, but as you well know, it is expensive to feed a crowd gluten-free food on a regular basis and honestly, as a SAHM, I like to get out of our house and don't want to always be the default host.  I have tried to contact two local chapters of Raising Our Celiac Kids (ROCK), but unfortunately, they all seem to be inactive, as I haven't heard a word back.  I have joined all the Facebook and Yahoo groups I can for celiac disease and gluten issues, and while there's great information out there, it's different than having an in-person friend who gets it.  

 

Is this just the reality of an underdiagnosed disease, for which the only treatment is also widely adopted as a fad diet, and thus, is misunderstood?  I honestly thought with 1/133 occurrence of the disease, I'd eventually meet another mom of a celiac kid or at least be able to seek out a local celiac group. We live in the suburbs of D.C., so it's not like there is a lack of population.  I've been surprised that I have tried to find others and have not yet met anyone nearby in a similar situation.  Just wondering if others have had trouble networking with other celiac families.

[StephanieL]

Hi and welcome!

2 is a REALLY hard age for anything social with food issues.  All the kids eat all the time all over the place!  It's a fact of the 2 year old crowd unfortunately.  We've had to go through this will 3 kids for various foods (some being life threatening allergies) and 2 is just hard.  I agree with the feeling of social isolation you are going through too.  It's "easier" to stay home.  The reality is that as your kiddo gets older it'll be less and less of an issue. Then it'll be other issues (hate to say it) that you'll have to worry about BUT the "lets stick EVERYTHING in our mouth"" stage will be behind you!  

We try to do things NOT at meal times.  Playdates after lunch before other kids get home from school.  Snacks are "cheaper" than full meals.  Outdoors is usually easier but at that age none of it's easy.  You have to watch at all times.  I don't remember the last time my DH and I got to eat together at any function because someone is always watching the littlest kiddo.  But it gets better. You'll settle into a groove.  

 

 

Hugs and hang in there!!

[nvsmom]

I actually do have a really strong gluten-free network but we move in... alternative circles.  The main thing is that we homeschool, and there are many kids with food issues, allergies and problems like diabetes where it is safer to keep them near you.  My friends are very health conscious and a few of them were gluten-free before I had even heard of gluten.  We attend classes one day a week with homeschoolers through our school board, and out of the 80 odd kids there, I would say a good 10 are gluten-free due to celiac disease or just for better health.

 

We're very lucky.    But we did create our own community.  It took time but it is worth it.

 

Best wishes

[africanqueen99]

When my youngest was DX at 18 months I immediately called the oldest's school nurse to find out if anybody in the school (490 kids) was gluten-free.  Nobody was, but there was a former student with celiac (that was actually her secondary DX to diabetes - so only the school knew and celiac wasn't written into her 504).  She got us in contact and then offered to ask the other nurses in the district. 

 

I was just so focused on celiac and then opened my eyes to realize that one of the oldest's friend's sister (by this time the oldest was DX too) was autistic and on that special diet (is it SPD?) and ate gluten-free.  So her mom became a sounding board.  And then another school friend mom was gluten-free (un-DX celiac?).  And my middle kid's BFF is allergic to everything known to man and eats gluten-free.  All this to say that the world opens up when you just put it out there.  These people found me through avenues when I couldn't see the forest threw the trees.  Plus, just friending moms with kids of food allergies will give you a lot of the same conversations.

 

Ask around - hopefully you'll find people.

 

As for me, I'm a fairly low-key (read: lazy) parent so there's no way I'd go to a playdate with Cheerios on the floor.  I just don't want to deal with that stress - it's not worth it.  I'm not sure why little kid playdates always center around food - it's so strange to me.  Now that my third kid is the youngest I just don't make time for it.  But I'm the weird mom that reaches out to new coaches to discuss NOT having "snacks" after practices and games.  Seriously, cartwheels on the field instead of running after the ball doesn't require a bag of cheez-its after an hour.  I guess that's a different conversation, though.

[africanqueen99]

And this is totally OT, but I've found a go-to gluten-free meal for groups.  We entertain a group of 5-6 families with lots and lots of kids each month.  I used to try new things and kept spinning my wheels and making great meals with pretty significant cost.  And then I thought of it - what we eat with our Girl Scouts...walking tacos!

 

A couple of pounds of ground meat, a head of lettuce, the large sour cream, shredded cheddar all on a bed of either doritos or mission tortilla strips from Costco.  Boom!  The kids eat like three bowls.  It's not gourmet, but it's good.

[cyclinglady]

I belonged to the MOMS club ( MOMs offering MOMs Support) when my daughter was a toddler. It is an international group. We met once a week at various parks in our city. Easy. Occasionally, we hosted play dates, but that was optional. We took city bus rides, went to the beach, did crafts at the park, games, the mall, fed the horses, picked strawberries, things that would interest those under four.

Something to consider. There might be a chapter in your city.

I am still friends with all those mothers!

[calabaza78]

Thank you all for the suggestions and support.  I've just honestly been surprised to not encounter anyone so far who has a child with severe food allergies or limitations like celiac.  I have a few friends from a long time ago who do not live nearby that have children with some health challenges, and I know adults who are gluten-free for a variety of reasons, but for whatever reason, nobody in my local circles right now deals with any food or autoimmune issues like this with their child.  My kids are still young, so I anticipate as they move to formal schooling, I will hopefully encounter more people in a similar situation, be it allergies or whatever.  I guess I just envisioned my daughter having a little gluten free "friend" to turn to as she grows up, who deals with something similar.  Wishful thinking!

Thank you all again.  At least there is the internet to reach out to people who "get it."  

[StephanieL]

Part of it is that your daughter IS young.  The average it takes for adults to be diagnosed is 7 YEARS!  That's getting better but still.  There may not be enough damage that there are other kids with it OR they may just not have figured it out yet.  

My DS in in 2nd grade. He has multiple life threatening allergies and Celiac.  He's the ONLY ONE in his class that we know of (they won't come out and tell you, it'll all through the parenting grapevine- I have been room parent for 2 years and no one else in his K or 1 had issues when I was bringing in all the party snacks) with food issues.  I believe the current statistic for allergies is 1 in 13 so I am shocked that he is the only one of 45 kids with allergies.  One of his classmates has an older sister with a milk allergy but that's the only kid he knows with allergies like him. 

[kb27]

We don't know anyone else in person who has a kid with celiac, but we do have friends who have been very supportive.  They make sure that there is food our son can eat when we go over to visit.  And my son's friends know that he can't just eat whatever they are having.  He's older though (11 now, but 8? when diagnosed).  We have found an active ROCK group in our "area", but it's in the city 3 hours away, so I haven't actually met the people posting on their facebook page, for instance.  

 

2 is hard - there is food everywhere.  My suggestion would be to show up at playdates with snacks to share with the other parents and kids.  Ask if they would mind putting away the cheerios during the playdate, so that your child could eat what everyone else is eating, too.  And hope that over time, your friends "get it".  Sometimes you just have to forceful and explain what gluten does to your child.  Not everyone knows what celiac is or that minute amounts of something (like the cheerios everywhere) can make your child sick.  

 

You don't need to have friends with celiac kids or gluten-free kids to still have a safe and accepting environment for your child, but you do need friends willing to support your efforts to keep your child safe.  We have found most places we take our son have been great (school, day care, friends' homes, relatives houses, etc.), and some want to be helpful but need help knowing how to do that.  Sometimes, just showing people what is and is not ok (and lots of "regular" foods are gluten-free) helps them to know what to have on hand when your child comes over to play.  Maybe the next time you have everyone over, put out some yummy gluten-free snacks that fall into the "regular foods" category (fruit, veggies, cheese, chips & salsa, etc.) so that people start to realize that you don't need to go to great lengths to accommodate eating gluten-free, but you do have to pay attention to it.  

Good luck!