Examining the Effects of Celiac Disease: Parents vs. Their Kids

By Zach

In an age where diseases and illness run as rampant as kids on a playground, parents do their fair share of worrying about and protecting their kids against all the harmful things out there in an effort to maintain a good quality of life for them. It is common for most childhood diseases to impact mental, physical and social development, but identifying the degree of suffering to which a disease effects a child is very important for both child and parent.

Just recently celiac.com published an article about a case study that tested celiac kids’ perception of their own health-related quality of life (HRQoL) in comparison to their parents perception of their kids’ HRQoL. The results are pretty insightful so here are some of the highlights:

The experiment involved 160 kids – 55 of which were boys and 106 of which were girls – and took place during a span of four weeks. The kids were separated into 3 age groups (8-11, 12-15 and 16-18) and answered a questionnaire about their mental, physical and social well being over the four-week period.

Continue reading “Examining the Effects of Celiac Disease: Parents vs. Their Kids”

Help Get Gluten-free Lunch Programs into U.S. Schools

imagesThe Gluten Intolerance Group is asking the youth in our community to help with a very worthwhile cause. They are asking kids to print this petition and ask people sign it to bring attention to the need for gluten-free lunches in the public education system in the U.S. This is a retro style petition – it must be printed and signed the old fashioned way and can not be done online. The completed petition pages will be presented to House Representative Betty McCollum at the GIG Annual Education Conference in June, in Minneapolis.

Sometimes I get annoyed that I have to always know where my next meal is coming from. Living gluten-free requires one to be more organized than the average person has to be. But I can’t imagine how Mothers with celiac or gluten-free kids deal with having to constantly worry about feeding those kids safely – day in and day out. Every meal and snack and birthday and pizza party requires pre-planning and extra work that other Moms don’t have to do.

Now add to their chores having to pack a gluten-free lunch every day for school. Most schools in the U.S. do not offer gluten-free meals to students that need them. This isn’t slightly surprising, of course. The medical community is still not caught up with much of the rest of the world on the issue of celiac disease or food allergies and intolerances in general. Why would anyone expect schools to understand the needs of kids that can’t just eat whatever the lunch ladies put on their trays?

Hopefully everyone will share the petition campaign information with everyone that needs to know about it. There are just a few weeks to get petitions signed and get them sent into GIG. Our community as a whole can do more than any one person could ever do alone. That’s something people need to keep in mind when they think they can’t make a difference. It’s about making a difference as part of a larger group – a large cause. It’s way past time for U.S. schools to offer safe meals for all kids that walk their halls. Together – we really can make a difference!

NEW Gluten-free Kid Snacks Give-Away!

Photo courtesy of Betty Crocker
Photo courtesy of Betty Crocker

Being part of General Mills My Blog Spark program has its perks. Participating bloggers receive samples of new products to review online. I missed getting the new Betty Crocker gluten-free mixes because I signed up after those were offered in the My Blog Spark program.

Last week I received a My Blog Spark box from Betty Crocker. Inside was a Pick’em up sticks game, a lighted yo-yo and a plastic flyer (like a Frisbee). The theme of this promotion is Simple Joys– hence the old fashioned toys. OK – so yo-yos didn’t light up when I was a kid, but you get the picture.

Also in the Simple Joys box were two new products from Betty Crocker – Create-A BUG and Variety Pack fruit flavored snacks. Both products are labeled gluten-free right on the front of the box. With no kids in the house, I had to to test taste some of these treats geared towards kids myself.

The Create-A BUG snacks are somewhat like Gummy Bears. They are shaped like parts of bugs, and you have to put them together to form said bug. There is a diagram on the box which offers hints on what bugs you can create with the pieces. I think this game will be a lot of fun for kids and will especially appeal to little boys who love bugs! The taste of bug pieces was also similar to Gummy Bears. It was a bit sweet for my taste, but of course I am not their target customer for this product.

In the Variety Pack were Fruit Roll-Ups, Fruit by the Foot and Fruit Gushers. All three of these were as you’d expect them to be, meaning that kids that like this type of candy will love these treats! The fun textures of the candy is an added bonus but watch out for those gushers. I’m not sure they could not be used as a candy weapon!

The slogan for this new snack line is “All the fun – None of the Gluten!” How cute is that?! First came the reformulated Chex cereals, then the fabulous gluten-free baking mixes from Betty Crocker and now these snacks. I wonder what else they have up their sleeve for us over at General Mills. One thing is certain, they are just getting started in our rapidly expanding market. I can’t wait to see what they come up with for us next!

These products are on the shelves in some stores already and will continue rolling out nationwide this Fall. If you find them in your area, they will make perfect Halloween treats for the gluten-free goblins in your life!

One of our readers is going to recieve the new Simple Pleasures gluten-free samples box, complete with the toys! All you have to do is post a comment below. If you have time and are so inclined, please list one of your “simple pleasures” in life as well. The lucky winner will be announced on Tuesday, October 20th. Good luck!

UPDATE: Congratulations to Stacey who is the winner of the ‘Simple Pleasures’ gift pack from Betty Crocker!

Gluten Free School Lunch

The American Celiac Disease Alliance has an interesting web page up about a law forbidding discrimination against people with disabilities. They suggest that this law can be used to get federally funded lunch for low income children with celiac disease. The law, 29 USC Sec. 794, states:

No otherwise qualified individual with a disability in the United States, as defined in section 706(8) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service.

The ACDA explains that the National School Lunch Program is one of these federally funded programs that cannot discriminate against people with a disability—in this case, celiac disease. The National School Lunch Program (NSLP) is a federally assisted meal program that provides low-cost or free lunches to those students whose family incomes are at or below 130 percent of the poverty level; reduced-price lunches are offered to those students whose family incomes are between 130 percent and 185 percent of the poverty level. According to a U.S. Department of Agriculture document, Accomodating Children with Special Dietary Needs in the School Nutrition Programs:

Substitutions to the regular meal must be made for children who are unable to eat school meals because of their disabilities, when that need is certified by a licensed physician.

To get your child signed up for federally funded gluten-free (or GFCF) lunches, follow these steps:

  1. Contact your school and tell them you are requesting a 504 evaluation for your child.
  2. Give the evaluation team documentation of a) the child’s celiac disease b) why celiac disease restricts your child’s diet c) how your child’s ability to work and learn at school are affected by celiac disease d) which foods must be omitted e) foods that can be substituted for omitted food f) a specific form some states require your child’s doctor to fill out e) providing a model 504 plan might be necessary
  3. Possibly attend the meeting of the school evaluation team.

In some states like New York you do not have to be low income for your child to receive school lunch—you simply pay full price for the school to provide a GF lunch, or in some cases a GF breakfast, to your child. Check on the laws about school lunch in your state.

Gluten-Free Summer Camps

Camp Celiac A while back we mentioned one gluten-free camp with specially written gluten-free music. It turns out that there are many, many gluten-free camps to which you can send your child. About.com has a great list of those camps. I’d like to add to their description of eating and safety environments with some details about the sort of activities your child would do all day. Even in the small subcategory of GF-friendly camps, parents and children have a wide range of options.

Camp WeeKanEatit!! offers:

” a ropes course and rock climbing, canoeing, fishing, arts and crafts, campfire cook out, sports, swimming, and a special Mother’s Day celebration Sunday morning.”

Great Gluten Escape Camp offers:

“all the normal camp events and activities.  Each camper will experience all of the excitement of a summer resident camp, including S’mores by the campfire!”

Camp Kanata and Kamp Seath support gluten-free and non GF campers simultaneously in the same camp. Camp Kanata offers:

    >> Water Activities

  • Swim lessons (instructional)
  • Canoeing (instructional or recreational)
  • Kayaking (instructional or recreational)
  • Water games (instructional)
  • Basic water safety (instructional)
  • Fishing (instructional or recreational)
  • The Blob (recreational)
  • The Iceberg (recreational)
  • Tarzan swing (recreational)
  • Waterslide (recreational)
    >> Land Activities

  • Sports (soccer, basketball, volleyball, ultimate Frisbee, Aussie rules football, street hockey, rugby, lacrosse–instructional)
  • Archery (instructional)
  • Riflery (instructional)
  • Dance (instructional)
  • Cheerleading (instructional)
  • Drama (instructional)
  • Nature appreciation (instructional)
  • Low ropes (instructional)
  • Challenging high-ropes course (instructional)
  • Climbing wall and zip line (instructional)
  • Bouldering walls (recreational)
  • Arts & crafts (instructional)
  • Horseback riding* (instructional)

*Campers must register in advance for horseback riding.

Neuse River Canoe Trip

The canoe trip is an all day (6 hour) trip down the Neuse River. The trip begins at the Falls Lake Dam and ends at the Buffaloe Rd. take out. The trip is reserved for our campers who are 12 years old and above.”

Camp Sealth offers:

“Classic camp, archery, crafts, outback, splash camp, wacky science, canoe and kayak, horseback riding, geocaching, guitar camp, photo fun, animals, nocturnal, climbing, and construction corps.”

Camp Westminster, a Presbyterian camp, offers:

  • swimming (we offer Red Cross-certified swimming lessons during most camp sessions, supervised by a WSI)
  • canoeing
  • kayaking
  • sailing (our fleet includes a variety of boats)
  • archery
  • sports- soccer (or football!), basketball, tennis, frisbee, rugby, softball, kickball, etc.
  • arts and crafts
  • drama classes
  • creative writing opportunities
  • making music (bring your instrument and we’ll use it in vespers or a Talent Show!)
  • nature exploration- stream discovery, shoreline hikes, nature trails, peeking under rocks (and putting them back, of course!), catching minnows
  • climbing the Lighthouse Climb (3 levels of climbing surfaces on Higgins Lake’s only lighthouse!)
  • Initiatives (group building course) and High Ropes Courses
  • fishing
  • walk the labyrinth
  • hikes; GPS hikes
  • walk the Prayer Trail
  • Outdoor Living Skills
  • parachute play (it’s a big one!)
  • indoor game room
  • checkers on the stump
  • churn ice cream (and the best part: taste- testing!)

What is a typical daily schedule?

7:15am     Rise and shine
7:45am     Morning Watch on the beach
8:00am     Breakfast
8:30am     Capers (chores in wakeyas and assigned community spaces- remember, ‘caper’ means to frolic joyfully!)
9:15am     Bible Quest (discussion and activities on theme for week)
10:15am   Cabin Choice (decisions are made as a group for each day of the week and options include all of those above!)
12:15pm   Lunch
1:00pm     FOB (Flat on bunk)
2:00pm     Camp store time for ages 7-11
ChooseIt! activities begin for ages 12+ (campers choose a focus activity to improve their skills each day during the
week; options are available Sunday afternoons)
2:30pm     ChooseIt!/ afternoon activity/ swim lessons
3:30pm     ChooseIt!/ afternoon activity/ swim lessons
4:30pm     All Camp Swim (everyone at beach area)
6:00pm     Dinner
7:00pm     Vespers (short evening worship in outdoor chapel; camper-led!)
7:30pm     Evening Program (age-appropriate)
9:00pm     Good night to ages 7-11
Camp store time for ages 12+
Lights out!

Camp Celiac at Camp Arroyo offers:

The 3500 square foot pool is the heart of summer camp activities and is large enough for wading, games, and team sports.  The pool was designed to allow campers in the shallow area as well as in the sports area.  All campers will be required to take a swim test before being allowed in the pool.  No campers will be allowed in the pool area without a YMCA Camp Arroyo approved lifeguard on duty.

The Challenge Course consists of multiple challenge elements facilitated by the Fort Miley Adventure Challenge Course staff.  There is a 36’ X 36’ rock wall, a 210’ zip line, as well as other high and low climbing elements.
Camp also includes a day trip to Lake Del Valle for boating and swimming; an arts and crafts center; bocce ball; basketball; soccer and other field sports; movies; and a campfire amphitheater.”

Camp Celiac at Camp Aldersgate offers:

  • low ropes
  • high ropes
  • swimming
  • boating
  • canoeing
  • arts and crafts
  • hiking
  • sports
  • nature
  • singing and group initiatives”

The Gluten-Free Camp at Camp Manitou-Lin is having its first summer, and no activities are posted as yet. For more information:

2009 Gluten Free Camp @ Manitou-Lin in Middleville Michigan

Date: Aug 16 (Sunday) – Aug 21 (Friday)
Cost:(includes meals)
Register by August 3, 2009 – $450.00
Last day to register August 3, 2009
Full amount due by August 3, 2009

Deposit:$75.00 non-refundable required to reserve space for the camper. This deposit comes out of the full amount for the camp.
Once full payment is received you will receive additional information on activities, list of items to take to camp, additional forms, etc.
Please make checks payable to “YMCA Camp Manitou-Lin”.

Send completed Registration Form and Deposit to:
Nicole VanZwoll • 3614 Ridgefield Rd. Lansing, MI 48906

For more information email [email protected] or see
the below links.

**** Gluten Free Camp coming at Manitou-Lin in Middleville MI***
http://www.campmanitou-lin.org

Cel-Kids (Michigan kids with celiac)
http://health.groups.yahoo.com/group/cel-kids