One Year In With Celiac 8-Yo Daughter. Feeling So Sad.

[ViennaGirl]

My daughter was diagnosed with celiac last year at age 7. Our whole family immediately went 100% gluten free. Her older brothers are wonderful about it (and in fact, although they are negative for celiac, one of them is clearly gluten sensitive, because his psoriasis totally cleared up when he went off gluten). At home it's not too hard, although I miss being able to go out to dinner easily, or buy convenience foods - I know they're bad for you, but we eat a very healthy diet, and it would be nice not to cook sometimes. 

 

My daughter is very careful about her diet at school - obviously she always brings her lunch, and I'm a room parent, so I always know when cupcakes or cookies will be showing up and can make an alternative (or make all of them gluten-free for everyone). One of her friends refuses to come to our house any more because our food is "weird," but she's one ignorant second-grader out of so many others who are lovely about it. Our families are supportive and all holiday meals are totally gluten-free, and they try very hard to understand this. I can't complain.

 

So why am I so sad?? I feel great, not eating gluten - more energetic, "cleaner," no more bloating, etc.,, which leads me to believe I have gluten sensitivity as well. I'm just really sad that our family has to think about this 24/7. I feel like it's all I think about. Every single thing our family does has to involve a complicated calculation about food, and I HATE IT. My friends say "at least it's not something horrible, you're lucky," and YES, we're lucky she's not deathly ill, but it's SO BORING TO THINK ABOUT FOOD ALL OF THE TIME, while raising kids and trying to have them NOT worry about it all the time - I don't want to drive them crazy (but I know I drive my husband crazy about it...)

 

I'm sorry to vent. I know I'm a newbie, and maybe it's not appropriate, but I really had to get this out somewhere. 

[pricklypear1971]

You're right. It is a PITA to always have to plan and cook and pack. It's like having a permanent baby with you (gluten-free being the baby).

It dies get easier because you learn more restaurants, get more comfortable, etc. but yeah, sometimes it completely annoying and boring.

The payback is the lack of illness, of which we sometimes must remind ourselves.

We all have something going on that we can/will do to make our lives more difficult or boring. It's hard to remember that if it isn't gluten we'd work something else in there....I'm confident I would, at least .

[surviormom]

Vent away.  I am a mother of 5.  I get tired of it too.  I have two sons and myself that need to be gluten-free, and the rest I see small improvements in simple things.  Teen acne is better.  Middle child in every way is now a sweetheart.  Second child is finally gaining some weight, middle one too.  Little things.  But the two youngest and I we have to do this, or we have real problems so yes, it is always part of the planning of every day.  Meals are planned so we do not need to go through a drive thru anywhere, anytime.  Snacks are now healthy snacks not easy snacks.  And it can become very inconvenient, but it is what is best for all of us.  OOPS I did not have to make a dessert, oh well, we did not need it.  OOPs, I forgot to buy ice cream, we did not need it (I cannot have it anyway).  What, we are out of sugar!  Use honey.    I understand, I promise, vent away....oh did I forget allergy season skipped our house this year...hmmm.

[ViennaGirl]

Thank you for your replies. I'm very uncomfortable in restaurants, but maybe I'll scope around this forum a bit and see where people are comfortable eating out. I really miss being spontaneous. I'm sorry for the whine-fest, when I don't even know anyone here, but it's been building up and it's the holidays, and school parties, and...you know. Anyway, thank you.

[blmoreschi]

Whine away! I'm with you. We're 9 months into our gluten-free life, and it is "mostly" easy now. But sometimes I get really sad thinking that my Celiac daughter (age 11) will have to cope with this for the rest of her life. I know, it's not leukemia, it's not something terminal......but it still sucks. This is the right place to whine - no one else will want to hear it!

[Adalaide]

It's been two years and while I have a great handle on things, on occasion I find myself caught off guard by just feeling a bit resentful of how I can't just be the person I used to be. I can't just look at my husband at noon and say hey, lets go to the city and off we go. If we're going to go to the city for an entire afternoon and evening it requires planning. On the bright side, as time goes on the planning has become much easier. I've found that I can be pseudo-spontaneous. I keep snacks that are easy to travel with in my house so if I want to head out for the day I can just grab a few and not have to worry. I have a phone with internet so I can quickly find restaurants and I keep myself aware of what places I can and can not go to. (There is a fairly large number of In N Outs here so I just look for one of those if I don't want a "real" restaurant.) So now I know I can go pretty much anywhere within the greater Salt Lake area or in the valley on a whim and as long as I brought a few snacks and my phone I'll be fine.

 

Yes, every time something goes in my mouth it's all BOOM! celiac right back in my face again. It's right there every time I shop and pick up something that has ingredients. I have to think about it every time my husband leans in for a kiss. (omg... did he brush his teeth? yeah, super romantic ) I live in a shared house so instead of it being a non-concern once my shopping is done and I'm home it's always in the forefront of my mind in the kitchen. And then, when I have my escape what do I do? I run off to celiac forums to look for either support or how I can help other people. Purposefully putting myself right back there.

 

Still, it occupies so little of my time compared to what else I do and think about. Like others said, I'm not dying. (At least not any faster than any of the rest of us. ) It's just food. And I've picked baking back up and at this point when someone asks "what do you eat?" in that unbelieving voice as if I sustain myself on sunshine and rainbows I can honestly say "whatever I want!" And it's true. I have donuts and cupcakes and brownies and cookies and breads and rolls besides all the meat and veggies and fruits and chocolate I eat. There is nothing I deprive myself of, I simply do it gluten free.

 

I mean, she's 8. She has so many more serious things going on in her life than what goes in her mouth. She has friends to whisper secrets to and games to play and tv to watch and learning to do. It's just 3 meals a day and maybe a snack. Food was certainly the least of my concerns when I was 8. Meals were that thing that interrupted the rest of my day... repeatedly.

[1desperateladysaved]

I can't say I don't miss spontaneous outings.  As my husband packed to go off with the basketball team, I thought how much easier it was that I stayed home.  He packed pajamas and a couple things and he was off!  He could eat whatever he liked to eat without concern.  I pack food and utensils as neccesites.

 

I have made it easier.  In the car I have a plastic bin with plates, napkins, and salt.  I don't have to pack these each time.  Once in a while I need to stop for more forks.

 

Over-all though, I have it much easier than before gluten free.  It felt like I carried 100 lbs burden constantly.  I have a clear mind and energy which is worth far more than the effort which is needed.

 

D 

[julissa]

this is such a great thread and so what I needed to see right now. I have now been gluten, dairy and soy free for one year. I have gone through lots of learning over the past year, and now have settled into my reality. like what has already been said, I miss the days of spontaneous living, just heading out the door for the day, planning a weekend, etc. I now don't eat anything if I didn't make it. I have gone through too much being sick this past year, and part of my learning curve is that I am super super sensitive. adding the dairy and soy to the mix, well, eating out or grabbing a quick bite somewhere is just not something I do anymore. I sometimes get angry, really missing my old life, but I have adapted. like you have said, I  have things I can grab quick and have on hand to be out. I keep food in my car, you never know when your plans will change.

 

I no longer stay home declining social settings, I go to restaurants and bring my food. I don't ask, I don't talk to the waiter about it. when others order, I just order a drink, I mention nothing, then whip out my food when others are served. no one anywhere has ever said  a word. this is my reality.

 

I feel wonderful, my body has just adjusted itself to a healthy weight, so all in all I am happy. every now and then a little pity party rears it's head, and just remind myself that there are many who would trade medical conditions with me.

[livinthelife]

I agree that this post couldn't have come at a better time after a bad, glutened weekend out of town. Things are up and down. Focus on the up. Easier said than done, but doable.

 

I actually stood on the gluten free aisle at Whole Foods today and teared up at the sheer variety. I can't explain the tears other than that it screamed to me that yes, there were foods for me to eat!!! 

 

Also there, I was at the self serve brunch foods (love the way they label everything) and a mother was saying to her daughter, "Yes, you can have that, there is no gluten...nope, not that one." I caught the little girl's eye and said, "You can't have gluten either?" She just grinned the sweetest little girl grin. Her mother told me that she'd been diagnosed at five and was nine now and was an "old pro." I told her I was only three weeks in and was learning so much. We had the best conversation and the little girl just smiled at me all the way into my still foggy headed self. 

 

I'm exactly like you all...I keep telling myself that out of all the things I *could* have, that this one is the best. On the other hand, I feel awful always saying WAIT, LET ME LOOK ONLINE. I hope that after I heal that I'll be able to tolerate a tiny bit here and there. Fingers crossed and eyes up. )

 

Keep on keeping on!!! For Christmas, my friends are getting gluten-free care kits from me with a new skillet, a couple of spoons and a cutting board. I'm being proactive and my friends and family are amazing. You've come to the right place for support. This place is just great!

[tarnalberry]

It gets better.  12 years of gluten free, and it's fairly rote by now.  Especially if you set your house up as a safe place, and you've gathered alternative recipes and adjusted the types of food you eat, your house becomes a safe place and you DON'T have to think about food all the time.  It's a huge habit change.  You probably didn't worry about thinking about dandelion blossoms in your house all the time previously, because they never were there.  Same with this.  Give it time, and it will get better.  You'll have the most important safe place, and the others will get easier to navigate.

[GwenO]

Yeah it's hard.  I just sent my daughter out on a short trip with my brother and his wife who are visiting me.  I had to sit down and figure out all her meals/snacks etc., making sure she was prepared and had enough of everything.  I've been at it awhile now, but it does suck sometimes, and it makes me a little sad that she can't just go out and eat with her friends etc.

[AVR1962]

It will common place with time and you will not give much thought to it. There is a huge population having trouble with wheat right now and the diet is gaining more and more acceptance because of it. Restaurants, airlines, grocery stores are even accommodating which says alot in my opinion.

[Nick-incollege]

Hey,

 

Being 21/still a child, (ha) I can tell you it gets easier as you grow older. It was a bit hard for me as an underclassman in college (I didn't get the disease until college) but after getting older, I think you reach a point where you're not disadvantaged at all. Even though I'm ridiculously sensitive (2 week long reactions to just a tiny bit of cross contamination), i still go out, go to restaurants, get drunk, hook up (I know, last thing you want your kids to do right), went abroad last semester, and I think for the most part my quality of life is the same as anybody elses! 

 

I know that's not exactly your problem and doesn't solve your immediate concerns or concerns for the next 10 years, but maybe that'll make you feel a bit better! Restaurants still suck, but usually if I'm really worried about the place, i just order a chicken ceasar salad w/o croutons and that generally does the trick. Or just drink. My friends give me s$#& for being celiac/joke around with me about it, and I think it's kinda funny too (i used to drink a lot of beer), so usually I make a point of asking the waiter to be extra extra careful and they just start laughing. 

 

I used to have a terrible time, but i have learned a ton and life is improving! Cheer up!

 

Nick