Everyday Eating with Celiac Disease

Living with Celiac Disease

New School Year– Children with Celiac Disease August 3, 2014

Filed under: School Tips — Michelle @ 12:37 am
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The summer is ending and school is about to begin. There are several items on my mind as it relates to Celiac Disease. I’m not sure where to begin, but since it’s Back-to-School time, I’ll start with my kids.

 

As you know both of my daughters have Celiac Disease. The school year always present challenges for kids with Celiac Disease. They have to pack lunches and be able to make decisions when outside food is brought into the classroom.

 

My oldest, Meg, is starting Middle School. Ugh!!! This is a difficult age—she wants to be independent yet she is still clingy to mommy. Meg hasn’t had a 504 Plan in elementary school, and I do not have any intention of doing one for Middle School. She wants to be independent and make her own decisions. I trust her that she will comply with the gluten free diet and not be persuaded otherwise. However, I know how peer pressure is in middle school. At her age, she wants to be like her peers and being “different” is not “cool”. This is probably one of the hardest times for parents—trusting your child to make the right decisions.

 

On the other hand, my youngest, Kait, will be in 3rd grade. She had a 504 Plan last year, but it has made me wonder if it made any difference compared to not have one. So, should she have a 504 Plan this year? At 3rd grade, I question whether it’s necessary. She will be packing her lunch each day. Other than that, what could be potential exposures and contamination? I think it’s best to just have a conversation with her and ask her if a 504 Plan is needed to ensure she is safe. She’s at the age in which she can make informed decisions. We’ve known she’s had Celiac Disease since she was 2. She is aware of what questions to ask and she knows our philosophy, “when in doubt, don’t try it.”

 

So, the common issue between the both of them is how do we make school lunches appealing, and not boring. Like many moms, I’ve turned to Pinterest!!!! I’m still a little novice with Pinterest, but I did get some great gluten free lunch box ideas. My girls love the “lunchables” concept, so that’s pretty much our approach to school lunches. We have 4 required lunch items—protein, fruit, vegetable, and starch. Ok, so I do allow one sweet item as well. Although we can get some gluten-free (GF) bread, we rely on GF crackers as our starch. Kait has been into chicken nuggets/tenders. Tyson brand has a really tasty GF chicken nuggets and it can satisfy the protein and starch at the same time. But, how do we make school lunches not boring?! Well, we will be working on that. I’m thinking it’s not just a variety of lunch options, but how they are presented in the lunch box as well. This will be my challenge this school year. I think I will depending on Pinterest to keep my creative juices flowing!!! If you would like to follow me on Pinterest, follow me on www.pinterest.com/michelleeiching

 

On a different note, we found an awesome gluten-free only restaurant in Alpharetta. We were so excited!!!!!! If you are in the area, check out Tin Roof Kitchen!!! The girls loved their pancakes!!!!

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Emotional Challenge having a Child with Celiac Disease February 7, 2014

My youngest daughter is 7 years old, but we’ve known she’s had Celiac since she was about 2 years old.  Last night, she had a bit of a break down.  We were packing her lunch and she was so undecided what to pack. We had several options– chicken tenders, ham and cheese rolls with crackers,  tuna and crackers, PBJ– all gluten free, of course.  She had a melt down.  She didn’t want any of those choices.  Ugh!  She didn’t want to pack a lunch anymore.  Instead, she wanted to be like the other kids and purchase a school lunch!  That broke my heart– she said she wanted to be like the other kids.

She cried so hard.  She then cried about why she has to be gluten free and how did I give her this disease.  She wanted to know how I got that disease if my own mother does not have it.  I told her that it’s just the way life is.  I decided to take a break from packing the lunch and just hold her and listen to her frustrations.  She begged me to home school her so that she didn’t have to worry about packing lunches or being at school with all the kids having gluten around her.

I told her that I truly understand.  I told her that eating with my peers is hard for me as well.  It’s hard for me to go to lunch and dinner meetings with my colleagues.  I either bring a lunch from home to the restaurant or I simply don’t eat anything with them.  I told her that it is frustrating and I wish it was easier for us.  I empathize with her.

She’s only 7 years old and she already has the passion to make a different to those with Celiac Disease.  She wants to be a doctor and make a medicine that treats people with Celiac Disease so that they can eat gluten.  She may only be 7, but she’s such a hard worker and so passionate, I totally see her pursuing this career.  As she laid with me, she told me she wished she was grown up so she can make this medicine.  Don’t grow up too quickly!!!!

This is just one of many challenges in raising a child with Celiac Disease.  As adults, we can adapt and not care too much about what other people think and say.  We can make modifications to meet our gluten-free lifestyle.  For children, it has to be harder.  Peer influence has such an effect. It’s hard to not be able to control for your environment, but she is learning these life lessons early.  I imagine she will be a stronger person as she gets older.

 

Challenges with Children Living Gluten Free October 20, 2011

Filed under: Everyday Living with Celiac Disease — Michelle @ 10:43 am
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It’s been a while since I posted, so sorry about that!  In the last couple weeks, my daughter started school.  Before school started, we met with the assistant principals and the school nurse.  We learned we could not have a Section 504 PLan without a confirmed diagnosis of celiac disease.  My husband and I refuse to have Kait consume gluten and then get a biopsy of her small intestines. Her gastro-intestinal issues are torture enough.  So, her principals suggested we do a health plan.

In her health plan, we set up an outline of what can’t eat or touch in the classroom–including specials (art, music, PE, information technology).  We also have a plan for Kait if she does ingest gluten and is experiencing pain.  We also have a plan of what to do for classroom celebrations.  It is so important to have good communications with the teachers.  I have been very fortunate to have Kait’s teacher be familiar with Celiac Disease and understands the gluten free diet.  She informs of any birthday celebrations and what the parents plan to provide, as well as for any classroom activities that may involve gluten-items.  I, then, provide an alternative so she doesn’t feel isolated. 

One of the biggest challenges is when Kait is invovled in out-of-the-classroom activities, such as birthday parties.  Similar to the classroom, I find out what the party will be serving and again, I will provide a gluten free equivalent.  So, I do make my own cupcakes and order a GF pizza for those occassions.  However, I do feel I need to stay at the party in its entirety.  For example, in the most recent birthday party she attended, all kids received a Powerade.  I looked at the ingredients and sure enough, it had “modified food starch.”  She had juice instead, but had I not been there, she would have drank the Powerade.  It was a good lesson learn.

 

Children with Celiac Disease June 27, 2011

Earlier I talked about how difficult it will be when my 5 y/o daughter begins Kindergarten…Children often play with such fun stuff at that age— gluing arts and crafts, molding clay, making Masterpieces with finger paint.   It’s already difficult to teach my child that many foods contain gluten and she needs to avoid them– cupcakes, candy, pretzels, crackers, etc.  These are fun foods that are often used in classroom parties.  It’s not uncommon for children to share their lunches with their classmates.  Now, to add the fun activities to the equation, being a child with Celiac Disease can be depressing!

Fortunately, my child is very aware of the consequences after consuming gluten.  The experience is so painful that she very much tries to avoid gluten.  She has become her own advocate.  It also helps to have a big sister who also understands the consequences of what happens to her little sister.  Her big sis, Meg, has also become a great watchful eye and advocate.

Talking to both children about what contains gluten is so important and just as important is educating them that there are always alternatives to items that do contain gluten.  For example, Kait said to me once, “Mommy, you know who is Sweet and who is Sassy?” (referring to her and her sister). She explained, “Meg is Sweet and I am Sassy, because Sweet has gluten.”  When she said this, I knew she was understanding, to an extent, what contains gluten.  I thought this was rather an informed observation for only 5 years of age.

I’ve talked about the challenges at summer camp.  I’ve since provided gf gummy worms so that she can enjoy with the rest of her camp buddies.  Today, however, Kait was given some juice (Of course, it still troubles me that the camp is continuing to provide my child with food despite my pleads not to do so!).  Being cautious, she approached her sister, Meg, with the juice and asked her to check to see if it has gluten.  Another suggestion from a parent of children with Celiacs- review the food labels and ingredients with the children and identify ingredients or labels that suggest gluten or gluten free.  Since Meg can read, she was able to tell her sister that the juice did not contain any gluten ingredients.

When Kait enters Kindergarten this Fall, she will not be able to have her sister with her to look out for gluten-laden items.  I need to provide some protection for my child (hence the 504 plan), but I know there will be instances that the potential of exposure will be there.  So, what do I do?

I’ve discussed before that being aware of classroom parties ahead of time is important.  I can provide comparable GF foods without Kait feeling isolated.  I need to continue educating my child and reminding her that her best bet is to only eat what mommy provides.  For any temptation from friends in the lunch room, she will learn the hard way.

What about the playful fun in the classroom?  Using Cheerios for counting lessons, play-doh for fine motor skills, etc.  Counting manipulates do not need to be a food item, so informing the teacher of this is a simple solution.  Also, there are gf glues out there— Elmer’s glue is known to be gf.  So, providing gf glue and ensuring that she is the only one who touches it (important note there, “only one”— very easy for cross-contamination with little hands!).  There is GF “play-doh”, or modeling clay.  There are at least two brands that I’m aware are gf– Aroma Dough and Colorations.  You can also make your own gf modeling dough.  Here’s a simple recipe:

  • 1/2 cup rice flour
  • 1/2 cup corn starch (or arrowroot)
  • 1/2 cup salt
  • 2 tsp cream of tarter
  • 1 cup water
  • 1 tsp cooking oil
  • Food coloring, if desired
Preparation:
Mix ingredients. Cook and stir on low heat for 3 minutes or until mixture forms a ball. Cool completely before storing in a sealable plastic bag.

We may be making our own “Play-Doh” since my Kait loves cooking in the kitchen!! If we make it, I’m sure it will be yellow (Kait’s favorite color)!

 

School-age children with celiac disease– 504 Plan?? June 21, 2011

This is a call out to all educators!!!

It’s been a while since I had to think about disabilities studies (my minor in undergrad), but I recall bits of a 504 Plan.  With Kait starting Kindergarten in the Fall, I’m very concerned about potential exposure and ingestion of gluten.  It’s Kindergarten and I’m sure glue is a staple in the classroom!!!  Of course, I can bring in gluten free glue (Elmer’s), but what about protecting her in art class.  I’m thinking modeling clay (i.e. Play-Doh) and finger paints…She needs to be protected. Also, school meals.  Federally funded school lunch programs prohibit children from being excluded regardless of diet.  Is this correct?  I’m fine with providing Kait her meals and snacks.  We’ve been doing that for a while.

So, educators out there, should I be considering having a 504 Plan for Kait???

 

Being Gluten-Free is much more than a diet- I’ve been glutened, and not from food!!!!

All week I’ve been feeling crappy and I know I’ve been glutened!  Yes, glutened, the term Celiacs use when they’ve been contaminated with gluten products.  However, I know I didn’t consume gluten foods.  So, I’m trying to figure out where I got it from.   Ugh!!!!  Gluten can be found in some many products, but of course, you’re not going to see the term gluten, wheat, barley, and rye.    Gluten is known to be in make up, shampoos, hand soap, lotions, toothpaste, glues, play-dough, etc.  So, the rule of thumb– always, always check the ingredients and be mindful of gluten containing terms.  I’m compiling a list of these ingredients adn I’ll be sure to post when I have them confirmed. 

I just realized my lipstick contains gluten- I use Clinique.  So, I’m going to stop using that.  I’m not certain about the other Clinique products I use– liquid mild facial soap, mineral powder, eye liner, eye shadow and blush.  I am using a new toothpaste (colgate) and we recently bought new handsoap.  Also, I discovered that some of the sanitizers contain gluten!!! 

This will be problematic for my Kait.  I have to toss out her play-dough.  I need to look at Elmer’s glue (liquid and the stick).  For school, I’ll have to be sure to specify what school supplies she can’t use.  Oh my…starting the school year will be interesting. 

When I get home tonight, I’m going to do through the products in my home and toss those that contain gluten!!!  This should be a task, and not a fun one!  😦

I’ll update you all on my findings!!!

 

Dealing with Teachers and Camp Counselors June 16, 2011

Frustration is the word!!!!!!  Although my 5 y/o daughter, Kait, has not been officially diagnosed with Celiac Disease, she had gastrointestinal issues since she was a baby.  We took her to a pediatric gastroenterologist and it didn’t seem to help.  It wasn’t until I was diagnosed with Celiac that we thought perhaps Kait had the disease as well.  As soon as we started the GF diet with her, her issues were gone!  So the challenge now has been sustaining the GF diet away from home.

When I registered Kait to a Pre-Kindergarten program in Georgia, I made it clear to the staff, that Kait cannot eat anything or touch anything that has gluten.  I provided her meals and snacks.  However, there were a couple of days during the week where it appeared she had gluten.  Kait was in pain and was distended.  When I dropped her off the next morning, I noticed a bag of Rice Crispies and bowls filled with the cereal.  I asked Kait what are they used for and if she plays/eats them.  I discovered that it is common for the teacher to use cereals for different fine motor and math skills.  I was not happy!  I wrote a note to the teacher and spoke with the director about this issue.  I then received a note back from the teacher saying there is no “gluten” listed in the ingredients.  Oh my….teachable moment is the nice thing to say.  From that point forward, I made a list of items/ingredients that contain gluten and then I told her  that it would be best to not give her food unless I provide.

A month or so later, symptoms of gluten consumption surfaced.  Again, I went to the teacher about it to find out what happened.  The Assistance Teacher gave the children jelly beans.  OMG!!!  What don’t they understand when I say, “Do not give my child anything to eat unless I bring it?”  Well, the teachers learned the consequences.  Poor Kait was doubled over in pain and had significant bowl issues that resulted in screams of pain and a lot of tears.

Now that we’ve entered summer, my Kait is now in summer camps.  This entire scene repeated itself with the camp counselors.  We’re only 2 weeks into the camp season, and already, I’ve emphasized 3 times that she is not to be given ANY food unless I provide.  Grr!!!!!

I guess this is going to be my future whenever Kait starts school each year and attends summer camp each summer.  What a battle!!!!!  I’m going to have to creating a 1-pager cheat sheet of what it means to be on a gf diet.  Oh well….

 

 
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