When Gluten Free Hurts

As a mama, I am forever greatful for us finding out what was causing my daughter's stomach aches and pain.  But, going gluten free, does the real pain ever go away?  The pain of not being the same as every one else?  Food is what our society revolves around and when you are limited, it is hard.   Just plain hard.  And for a child, even harder.  We have always made sure that she feels the "same" as others, by always bringing her own goodies to parties, and friend's homes, but what about those times when you don't have your own snacks?   You have to sit there and painfully watch all the other children enjoy a snack and drink that you cannot have.   As an adult, we can take this a little easier, but a child?  It is so hard for them.  This has been a harder holiday than others so far.  I am not sure why.  I think it has a little something to do with the fact that my daughter is getting a little bigger and making her own decisions.  She knows how she feels when she gets "glutened"  so she is very picky about what she has.  Always asking the questions:    Is this product gluten free? 

Was it manufactured on equipment that processes wheat? 

What about in a facility that processes wheat?

 These are the questions she asks when she eats something someone else is offering her.  The hot chocolate is really tempting her this holiday season.  We went to a walk through nativity recently and afterwards they had hot chocolate and cookies.  The cookies don't seem to bother her as much, but we were cold, and she wanted something warm.  The hot chocolate was in big serving containers with no boxes around to show us the ingredients.  So, she passed. 

Then again, last night, at church.  She was with her age friends and they were watching a movie, eating holiday Christmas cakes and drinking hot chocolate.  She said, "Everyone was eating and drinking and I just had to sit there and watch them."  The hot chocolate smelled so good to her and she once again passed, not knowing what brand it was. 

This pains me as a mom.  I understand this is just something she will have to deal with for the rest of her life, and we are teaching her to learn how to cope with this, but I want her to feel included and not so left out among her friends. 

Please don't ignore these feeling from your children.  They are real.  They really hurt with this disease.  It is hard for them.  So when they come to you upset about feeling left out in an eating situation, be sensitive to this.  Don't blow them off.  In the situations above, we came home and had hot chocolate and cookies.  No, it's not the same, but it gives us a chance to have foods that friends were having and talk about it. 

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Comments

  1. Have you heard of the Gluten-Free Grocery Guide which has been published by Triumph Dining? It tells you which foods at the grocery store are gluten free.  As a person with celiac disease, it has helped me to feel more normal because there are so many things in the regular grocery store that I can eat.  You can buy it online at http://www.triumphdining.com. I buy products that are gluten free and then use them in my non-gluten free recipes.  I assure you that there are ingredients that you can buy so your daughter can have hot chocolate again just like she did before she was diagnosed with celiac.
    Hope this helps and brings your daughter some hope.

    • Yes! I have heard of Triumph Dining and I am so excited that they are coming to Birmingham for our Gluten Free Expo in February! She just didn’t even have the ingredients or the brand to check in this case. There was no package. And we do drink hot chocolate a ton at home! A lot of times I make my own with cocoa, milk and sugar, a hint of vanilla or peppermint also! Yum!

  2. Laura Hirschfeld says:

    I am so impressed that she is mature enough to continue to pass on items she isn't sure about. That's really hard to do, even for me as an adult.  That maturity and self control (and all that practice) will serve her well later, when the temptations to do things to fit in aren't food, but poor choices like drugs, bad behavior, and risky activities.  ((((HUG)))) to her! 

    • Laura, I am with you – such a mature young lady!  My daughters, who are 13 and 17 and have CD, struggle with these same issues, and it is a delight to see young people being so strong in the face of a disease that so many don't understand. 

  3. Oh – I so understand what you are going through.  My daughter is now 6 (diagnosed at 1 1/2) and we are starting to go through the same things you are talking about in your article.  It didn't matter as much when she was smaller, but now that she is getting invited to birthday parties, Christmas parties, etc…  all of them revolve around FOOD.  And it's always pizza and cakes or cookies!!  It pains my heart to see her not be able to eat with her friends, and like you I always try to take her something that is the same.  But, it still marks her as different, and that causes a pain in my heart that I sometimes can't take.
    There are others of us out here, and we understand.  It doesn't make it easier, but you are not alone.
     

  4. It's even harder, when you have a child with developmental disabilities who is gluten free.  They may not understand WHY they can't eat what they want to and have a hard time resisting because they cannot correlate the pain they feel afterwards with having eaten the food.  We struggle with this with my daughter.  While we question the behavioral improvements that are commonly associated and debated with autism and GF/CF, we have seen complete elimination of the reflux issues she had been having.  As a family, we miss out on the convenience of being able to just swing through the drive through.  

  5. Your not alone, both my daughters were diagnosed at a young age.. My youngest was the reason we found out my eldest had it as well. When my youngest was 1 year old we noticed she was always crying after eating and she just didnt look like a healthy baby..anyhow to make a long story short we got both tested for celiac and now we all eat gluten-free.

  6. Joan Murray says:

    People who have no food allergies have no idea what we go through on a daily basis.  I am gluten intolerant, and sometimes I forget that I'm not the only one with a "food allergy".  There are many food allergies, and those without a food allergy don't realize that everything eaten has to be scrutinized closely.  It can be very tiresome, but luckily your daughter realizes the pain is not worth letting her guard down.   I cannot just pick up something and eat it, but there are those with peanut allergies who have even more drastic consequences.  It does become easier, and much more reflexive. 
    There are so many gatherings where I eat in the car on the way, and then nibble on the few things I can eat.  It's not fair, but that might be a help for your daughter.  If she's full, she won't look at the cake and cookies with such sad longing eyes.
    And it is tough when all the easy foods people cook for kid's gatherings are flour filled.  I've given up on the hope of going to fast food places.  It's too tough. 
     

  7. Hi Jenny,
    Thanks for sharing these thoughts about how hard it truly is to be gluten-free especially for young kids! This is one of the reasons why we decided to start baking Gluten-free bread!
    Tighe, Rudi's Gluten-free Bakery

  8. So glad to find this website.  My little boy is having such a hard time of it.  He is on GAPS and so has so many limitations.  When he goes to birthday parties or to youth group I have to send his meal.  That means that I have to find out what is being served and send something along those lines.  
    He is in a new school this year and a couple of weeks in I learned the teachers were giving candy as a reward.  He cannot have sugar so I had to negotiate with with his teachers to give him other rewards.  You never know where the next obstacle will come from.

  9. I totaly understand what you are going through as a mom. My daughter was diagnosed 2 years ago at age 9. She is a silent celiac which means she has no symptoms that we know of. My mission has been to always keep her safe and educate her as well because I'm not always with her and she needs to know what's safe and what's not safe for her. I will be following you on twitter. I haven't met one mom yet that I can talk that has similiar struggles.
    -Maria

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