Yes, I Do Let Celiac Stop Me! You Too?

[GFAnnie]

I know we're supposed to be positive, and the big message whenever anyone gets a diagnosis of any sort is "Don't let it stop you from living your life!" or some such positive line to live by!

Well, I've found that in the 8 months since my whole family has been diagnosed, I'm a heck of a lot happier if I lay low, avoid attending food related functions, skip the road trips to stay with family, etc. Is that bad? We've attended a wedding reception - it sucked!  We've stayed with family, the preparation necessary, the special instructions, the paranoia about any food not brought from home or soaps we had to wash our hands with  (I have DH), made it totally impossible to relax and enjoy (and then we all came home and were sick). Potlucks, uncomfortable and awkward.  Restaurants? Hard enough with a 1 yr. old and 3 yr old, then throw in celiac and forget it.

I'm sure, for me, with two littles who also have celiac, that only makes it more complicated, but is it terrible that I'd rather just "not" then go through the incredible hoop jumping needed in hopes of having some semblance of an enjoyable time at these out of the house functions? Anyone else pretty much throw in the towel when it comes to this kind of thing?  It's not like we don't ever leave the house. But as far as the social food events, and traveling to stay with other people, BLAH! I just can't deal!

[moosemalibu]

I choose to not travel for my birthday this weekend because of the stress and hassle of food prep. I'm just over that. So I get it. Sometimes it's more relaxing to be in your comfort zone, ie. your household that is totally safe. But there will be days when you'll want to venture out. Be kind to yourself... you'll go when you want to go.

[cyclinglady]

Yep, I get it.

My FIL just emailed and asked about attending the Polish Festival. What? The main highlight of the event is eating all the pierogi's and jelly donuts, not to mention the sausage, etc. We offered up our gluten-eating daughter as a solution. Then he wanted to come by the the rest of the family to celebrate my birthday. No problems, as I will grill some tri-tip steak, baked potatoes, and salad. But he kept mentioning an ice cream cake. I gently reminded him that both his son and me, the birthday girl, can not eat it. But, he is old and he does not really get it. So that is okay. I am making my gluten-free chocolate mayonnaise cake with buttercream frosting and serving it with ice cream.

As far as other events, i would do the same in your shoes with little ones. We manage those events by driving over in our RV and we will sneak out and eat our dinner and then return for drinks and fun. In a big crowd, it is easy to do. Motorhomes or trailers can be money pits, but we changed our tune when we got celiac disease.

We entertain a lot in our home, hence my FIL asking to come over for dinner. He gets that (besides I am the best cook on that side of my family).

I turned down or quit many volunteer activities when I was diagnosed. It helped. PTA ran without me. The city committee is doing great. My veggie garden was neglected (just a pile of dirt). The list goes on. I just took care of my immediate family.

Do what works best for you and your family.

[kareng]

You have  1 and 3 yr olds?  Travelling, pot lucks, etc are all hard with that age - not even talking about Celiac here.  Neither is really old enough that you can let them go while you get out the picnic or go to the bathroom!  When they get a little older - old enough that they can play on the playground without an adult "spotter" ready to catch them, then you can think about tavelling. We didn't do much travelling when ours were that little. 

 

Once they are more self- sufficient, you will figure out what works for you.  I keep a box of travel cooking things.  When we are travelling, I go and take out the stuff I don't need and take the rest in the box or in a suitcase.  I keep all the things I might need so I don't have to think.  I may not need pans for a grill every time I travel, but they are in there so I don't forget.  There are lots of tips for travel on this site.  Come back in 2 or 3 years when you are ready.  Maybe even pick a nice Celiac safe place like Disney.  But, right now they won't really remember the trip.  Mine went to Disney World at about 7 and 10 years old, and they only remember little bits - mainly that little bro barfed after the Haunted Mansion.  Theory was that the ghosts jumped into him...  Had to go back the next day to exercise the ghost....  Anyway, you get the idea, they only remember barf and Small World and Buzz Lightyear shooting thing.  Because barf, shooting and over the top, slightly creepy dolls are the main things boys remember.  They couldn't tell you what they ate as long as they were full.  point being - right now, the kids don't care if they go on trips.

[SuzLin]

I'm the only one in my fam and I've learned where I can eat and what. I always pack a snack just on case. A road trip would be tough because I don't know the places, but I'd still try. I just might have to live off Kind bars and gluten free protein shakes for a few days. Or, I'll hit a grocery store and pick up carrots and hummus, cheese, etc. Snacks stuff that I know is safe.

[StephanieL]

You are 8 months in with young kids- No it isn't fun and I can see why it would stop you. Even before we knew what we were dealing with with our DS my Dad would call and ask if we wanted to go out to eat...with a 16 month old.  No one gets to eat a hot meal, no one gets to converse, no one has fun- nope, we'll pass!

 

Also, it's still newer to you and managing those things comes with time.  When we started this journey going out of the house for more than a few hours was unimaginable!  DS and I took a 4 day trip to Boston a few months ago.  Not it has taken 4 years to get to that point but I'm just saying that it will get better!

[GFAnnie]

Thanks everyone!  I love having this forum, somewhere to talk to people who get it! I don't mean to come off sounding depressing or anything, I'm really not down about it.  I just get down when I hear people make comments that make me feel like I'm failing because I choose to avoid these things, and modify my families life because of our diet. I honestly think that for us, we are happier this way, rather than "soldering" through all of these events that most people enjoy.

[cyclinglady]

You have  1 and 3 yr olds?  Travelling, pot lucks, etc are all hard with that age - not even talking about Celiac here.  Neither is really old enough that you can let them go while you get out the picnic or go to the bathroom!  When they get a little older - old enough that they can play on the playground without an adult "spotter" ready to catch them, then you can think about tavelling. We didn't do much travelling when ours were that little. 

 

Once they are more self- sufficient, you will figure out what works for you.  I keep a box of travel cooking things.  When we are travelling, I go and take out the stuff I don't need and take the rest in the box or in a suitcase.  I keep all the things I might need so I don't have to think.  I may not need pans for a grill every time I travel, but they are in there so I don't forget.  There are lots of tips for travel on this site.  Come back in 2 or 3 years when you are ready.  Maybe even pick a nice Celiac safe place like Disney.  But, right now they won't really remember the trip.  Mine went to Disney World at about 7 and 10 years old, and they only remember little bits - mainly that little bro barfed after the Haunted Mansion.  Theory was that the ghosts jumped into him...  Had to go back the next day to exercise the ghost....  Anyway, you get the idea, they only remember barf and Small World and Buzz Lightyear shooting thing.  Because barf, shooting and over the top, slightly creepy dolls are the main things boys remember.  They couldn't tell you what they ate as long as they were full.  point being - right now, the kids don't care if they go on trips.

Ha! You are so right, Karen. We took my nephew years ago to the Grand Canyon camping when he was nine. On the way home, we asked what did he like about the trip? He answered, "I got to pee outside and I didn't have to take a shower every night."

[dilettantesteph]

You have an extra challenge with the kids.  It will get easier over time.  I didn't do much initially but these days I go on trips even out of the country and attend social functions involving food.  You just need to figure out ways to make it work.

[Bird2030]

I GET IT! I so get it! Others in our lives do not. It's really mentally challenging in addition to the physical aspect of celiacs and all it's related diseases. I too am in tha dame spot you are and I feel bullied by everyone in my life from friends and family to be further ahead in my treatment and be able to eat away from home. I am the only one in the house that has celiacs and they are not at the point of understanding it either. I feel for you, that your kids were diagnoses too. It is hard enough to take toddlers out of the house! I will try to stay positive if you do! It's a long road ahead but we will both get there.

[africanqueen99]

Our first gluten-free Christmas we hung out at home and had our own thing, then went to visit with family for about 2 hours, then back home to eat.  No need to spend ten hours with the same people, no hating that I couldn't let my then-baby out of my sight for fear of her eating something, none of it.  It was, by far, the best Christmas we've ever had.

 

I like that we're in the place of making our new normal.  And, you know what, it's so much better!  Now I have kids that aren't sitting on the toilet or screaming the whole time.