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!!!!

 

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.

 

New School Year– Some Tips for Parents of Celiac Disease September 13, 2013

Filed under: School Tips — Michelle @ 2:43 pm
Tags: , , , ,

Ok, so, it’s been a while since I posted!  Many apologies!!!  Well, we’ve started the new school year and with that comes the meetings with the teachers. I’ve a had a couple parents ask for some tips in helping their children have as normal learning environment as possible.  Well it can be done!!!

1) As soon as you can, meet with your child’s teacher(s).  Educate them about Celiac Disease and what it means to the child and to the teacher.  Remember it’s not just about the gluten free diet; if you have young children, it also involves their activities and what they use in the classroom.

2) Do you need a general Health Plan or do you need a 504 Plan?  This is a conversation with the child’s teacher.  The Health Plan is more of action plan for how to handle concerns if there is an accidental ingestion or exposure.  It also can provide guidance of how to handle classroom activities (such as using Play-Doh, having cupcakes in the classroom, using food as counting manipulatives, etc).  The Health Plan is not enforceable and has very little teeth. But, if you have a good communication network and relationship with the school staff, a Health Plan may be the solution.  On the other hand, the 504 Plan is enforceable and is a formal agreement on accommodating the child to ensure a safe learning environment.  Schools are not the biggest fans of these because they are enforceable and requires accountability.

3) Be prepared for the unexpected celebrations.  As with any new school year, there will be a continuous stream of friends’ birthday party invitations.  If you have a Health Plan at school, this is where the unfortunate isolation may begin.  At my home, we freeze a dozen or so cupcakes.  When there is an in-class celebration, just pull one out and have the child bring it to school.  For outside-the-school celebrations, it’s easy to pull out a cupcake and bring it along.  Also, having gluten free frozen pizza comes in handy when there is a pizza party.  Heat the pizza and bring it with the child.

4) School lunches are not impossible!!!  There are always stumbling blocks on what to pack for lunch.  You can do sandwiches with gluten free bread, but that may get boring after a while.  My youngest daughter is really into crackers and cheese, or crackers and hummus, or crackers and tuna.  You can create a gluten-free version of the Oscar Meyer’s Lunchables!  My oldest daughter prefers wrapping a slice of ham with a slice of cheese.  And, we always pack a piece of fruit and a veggie!  If packing lunches are still daunting, but  you have a 504 Plan, then the school is required to provide a gluten free lunch for your child.  In that case, communicating with the lunch staff is essential.

Well, these are the top items to be familiar with as you start the new school year!!!!  Next week I’m meeting with my daughter’s school district re her 504 Plan! I’ll let you know how that turns out!

 

Developing a Health Plan for School September 20, 2012

This morning I met with Meghan’s teachers, guidance counselor, school nurse and assistant principal to develop Meghan’s plan in managing Celiac Disease at school.  I included Meghan in this meeting because I felt it was important to include her in the process.  After all, it is her plan.

It went well!  We discussed her diet restrictions and other gluten items that may be used in school– scented hand sanitizer, play-doh, glue, paper mache, etc.  We have a plan on handling celebratory events in the classrooms, such as birthdays and holiday parties.  I will be providing Meghan (and Kaitlyn) with a snack box for those occasions when I don’t have advanced knowledge to prepare something.

The school was very understanding and accommodating.  I expect to have a fine school year.

 

Celiac Disease Connected to Other Autoimmune Diseases- Hypothyroidism! September 19, 2012

So, Meghan was recently diagnosed with Celiac Disease, but she was also diagnosed with Hashimoto’s disease, or autoimmune Hypothyroidism.  It’s interesting since I also have Hashimoto’s disease, and was diagnosed when I was 17.  Since Celiac Disease is an autoimmune disease as well, there is greater risk of acquiring other autoimmune diseases, especially Celiac disease is not treated.  Rheumatoid Arthritis is also a common autoimmune disease linked to Celiac Disease!!  It makes me wonder if my grandmother had undiagnosed Celiac since she suffered from RA for a long time.  I even remember her telling me she had some GI problems.  Well, this helps me figure out who from my family did I inherit the disease.  Afterall, autoimmune diseases do run in families.

I thought Meghan was too young to have a thyroid disease,  but I’m learning it’s not uncommon.  Oh, my genes!!!  Now, I’m curious if Kaitlyn will acquire hypothyroidism.  I’m hoping by catching Celiac early with her, that it may prevent the onset of hypothyroidism.  I don’t know if that’s possible, but it is wishful thinking.

Meghan will have additional blood work done in a few weeks, mainly to check her TSH and Thyroid antibodies.  However, I’m wondering if going gluten-free will affect the results for the thyroid antibodies. I called Meghan’s Pediatric Endocrinologist about this.  I hope to hear more about that.  By the way, a big shout out to Dr. Paul Bernard of Pediatric Endocrinology Specialists of Georgia.  He was awesome with Meghan and was very thorough in discussing with me her condition and treatment.

Meghan experienced her first celiac disappointment yesterday.  Her class celebrated a birthday and the birthday boy provided prepared ice cream cones to everyone. Alas, Meghan was unable to partake.  Of course, if I had known about it ahead of time, I would be able to provide Meghan an ice cream cone!  Yes, I found a brand of gluten-free cones (cake and sugar)!!!!!

 

It’s been a while– sorry for the absence September 18, 2012

Well, it’s been a while since I last posted.  Many apologies for my absence!!!!!!  What have I been doing the last few months???!!!  Well, my family has been busy with summer activities and the start of a new school year.  I tried new restaurants- some with good experiences and unfortunately, some with poor experiences.  The family went camping sans gluten– fun experience!  However, the biggest news, and one that prompted me to write again on my blog, is to share with that my other daughter was recently diagnosed with Celiac disease.  Not fun!  Ugh!! My horrible genes are now with another generation!!!!    Fortunately, we keep a gluten free diet at home.  So, the biggest change will be when she is not home– school, friends’ homes, extracurricular activities, etc.

Meghan is 9 years-old and mature for her age.  We had her tested last week, mainly to have a peace of mind- either yes or no.  Meghan has not grown in two years.  When she was once around the 50-60th percentile in height, she is now less than the 10th percentile.  This prompted my curiosity to whether or not she had Celiac.  She really has no other symptoms of the disease.

We took her to the pediatrician last week and had her draw blood for a celiac panel.  Meghan was so brave and did not cry when she had her blood drawn.  After 3 days, the celiac panel tested positive for Celiac disease.  We will be seeing a pediatric gastroenterologist. Since I and my younger daughter have it, we know exactly what to do to manage it.  I do not plan to have a biopsy done.  With a strong family history, her short stature, and a positive panel, why go through an invasive procedure?!

Meghan was fully aware of the possibility of having the disease.  She’s seen what the disease has done for her little sister and to me.  She has been such a big help for her little sister.  Meghan reads nutrition labels and knows what exactly to look for. She has “rescued” her little sister from consuming gluten many times when I wasn’t around– mainly in childcare and summer camps.  So, when I did tell her she has Celiac, her response was, “Ok, so now, I just have to eat gluten free all the time.”  She wasn’t surprised or upset, instead, rather nonchalent.

So my next step, developing a Health Plan for her school.  Similiar to what we’ve done with Kaitlyn, but now for Meghan.  We have this scheduled for Thursday.  So, I’ll keep you posted on how that goes.

I’m pretty bummed that both my girls have Celiac.  They’re good kids and I know we can manage this.  Maybe I’ll have Meghan write a few posts to give you her perspective.

 

Gluten Free Gingerbread House Decorating December 16, 2011

Today, Kait’s class a had holiday party and we all had the opportunity to help our children build and decorate gingerbread houses.  Well, while the kids didn’t use real gingerbread, they used graham crackers for a similar look.  All children were to bring a candy for the class to use for decorating the house and each child was to bring a tub of icing for “glue”.  Kait was not left out.  Kinnikinnick brand makes a gluten free graham cracker called S’moreables.  They taste really good!!!!!  I made Royal Icing with just 1 egg white and 1- 1 1/2 cups of confectioners’ sugar (whip until thickened and have the icing texture) .  We used Hershey’s candy and GF marshmallows to decorate.  We had a blast!!!!!!!

Kait's Gingerbread House

 

 
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