Tip-A-Day for May (It's June?): Celiac Awareness Month

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 # 20: Gluten Free at School?  How?

If your child has celiac disease then you need to be an advocate for their safety at school. Celiac disease qualifies for dietary modification by your school district, if you ask for it and provide them with a note from your physician. Whether you want to have the school provide gluten free school lunches or not is an entirely different question. Technically, the school district is required to make a substitution, but it may not be very flavorful.

If you choose to send your child’s food from home, communicate clearly with your child’s teacher regarding her diet and the importance of providing “safe” foods. You may want to provide the teacher and the school office with a list of “safe” and “unsafe” foods for your child. 

Students with Down syndrome who also have celiac disease need both a written 504 plan and specific accommodations related to celiac disease included on their Indvidualized Eduaiton Plan (IEP). The 504 plan is required under Section 504 of the Rehabilitation Act of 1973. It should be attached to your child’s IEP, as well as distributed to school personnel who work with your child. Every child with diagnosed celiac disease needs a 504 plan in place.

School teams may suggest that it is not necessary to have a 504 plan when a student has an IEP. However, I found it helpful to use the 504 plan format. Why? Because it was all about celiac disease. Not Andy’s other modifications and accommodations. There needs to be a cogent, concise, and focused place for the written instructions related to the school’s responsibility and plan for providing a safe, gluten-free environment.

One of the best guides I have seen for this is from the National Foundation for Celiac Awareness web page. Take the time to download it to use as a guide. Additionally NFCA has provided sample letters for teachers and information for school nurses.

Outside of that, your child will need to learn some basic vocabulary and other skills related to living gluten free. Ask your child’s IEP Team to include goals and objectives related to helping her learn to manage her food while at school. Here are a few examples for you to modify for your child:

• During a class unit on nutrition, ask the teacher to include activities for your child that illustrate where foods that contain gluten fit in the food pyramid. What foods that do not contain gluten are in the same food group?
• If your child is receiving 1:1 speech therapy, include foods from the safe food list in her vocabulary or augmentative communication training.
• If your child is older and learning some functional words for living, include foods from the safe list and ingredients to avoid on food labels.
• If your child is known for food-swapping in the lunchroom, consider creating a positive behavior support plan for this behavior.
• Learning how to eat gluten free, identifying the GF symbol on foods, and how to share a kitchen are all skills that you may want to consider for the curriculum of any transition program or post-secondary program.

Remember, you will want to include goals that make sense for your child and the classroom environment.

This is the last of the series for the blog page. Those who subscribed to the email version will receive a total of 31 tips. If you'd like to receive all 31 tips, you can sign up here. Remember, it starts with Tip #1!  I hope this has been helpful - I had fun!

Take care,

Tip-A-Day for May (It's June?): Celiac Awareness Month

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 # 19: Connect!  Gluten-Free Connect, That is!

I don’t remember how I found this product. It doesn’t matter. It’s a big hit for both Andy and me when it arrives every three months.  What is it? Our Gluten Free Connect Care Pack!

It’s great fun. For $19.99 plus shipping we receive a grocery bag filled with Gluten Free products.  It’s not a small bag. It’s not just food. There’s a folder filled with coupons and product information. It reminds me of the care pack you wanted your Mom to send you when you went away to camp.

I like it because I love finding new products and learning about foods. Andy, my 24 year old son who has Down syndrome and celiac disease, enjoys it as much as I do. He likes it because he gets to try things out. The last GF Connect Care Pack included PopChips. The flavor we received was Katy’s Kettle Corn. They were gone in a flash.

Andy and I go through the pack and pick out the foods we know we won’t eat. Then we give them away to friends or to an organization that supports people with disabilities. They get most of the coupons. Gluten free foods can be expensive.

If you are new to this journey, or even if you’re not, subscribe to the Care Package at least once. You will be surprised what’s out there!

Once again, I receive no compensation of any kind for sharing about this service. They don’t even know about it. I just like it!

Until tomorrow,

Tip-A-Day for May (June?): Celiac Awareness Month #18

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# 18: Mind Your Micros.

The Married Couple: Calcium & Vitamin D

Somedays I wonder. Apparently my computer doesn’t know to do things automatically unless I hit the “start” button on the automatic publishing function. Oops. So I’m late with these last few tips. there will be two more after this one. The auto-email version continues through 31 tips. 

 Calcium and Vitamin D suffer from the same issues as other micronutrients prior to a diagnosis of Celiac: they don’t get absorbed. Another complication to this is that the diarrhea and gas associated with undiagnosed Celiac sometimes is mistaken as lactose intolerance. Additionally before a diagnosis of Celiac a person may become deficient in the enzyme lactase, which is needed to digest milk products. The natural response is to eliminate milk and dairy products, which means an easy and rich source of calcium (which is fortified with Vitamin D) is left out of the equation.  Clear as mud?  The point is that it’s possible to think a person cannot tolerate milk and dairy products, when they can after they are on a gluten free diet and their gut is healthy.

 If you have not heard, Calcium and Vitamin D are essential (not just good) for strong bones. I’m sure you’ve also heard that Vitamin D seems to be a key player in just about everything these days. I’m waiting for more research to figure out what to think, but so far, it seems we don’t get enough (especially in sun-deprived Oregon).

 What to do?

 Especially in the first months after a diagnosis of Celiac disease, pay attention to foods high in Calcium and Vitamin D. Why both? They need each other. Calcium needs Vitamin D for the best absorption.

 Let’s start with Calcium. The easy one.

 Milk and dairy products are normally gluten free (watch for flavors added foods – like cookie dough - and additives!). They are the easiest source for both Calcium and Vitamin D because of fortification rules. Dairy products are rich in both, making meeting Calcium needs and more easy to do.

 Finding calcium in non dairy foods can be done. Remember my “cheat” a few tips ago? It works here too: Dark leafy green.  Some examples include kale and spinach. But you’d have to eat a lot to meet your calcium needs. Most foods that are excellent sources of calcium are actually fortified including fortified soy products, with the exception of sardines with the bones in.  

 Vitamin D on the other hand, is even more difficult. Vitamin D is found only in foods with fat. Some sources include cod liver oil, sardines with bones in, and fortified products.

 What do you do if you eliminated milk products as part of your path to a diagnosis? First, wait a few months, six to be on the safe side, before making a change in this area. Reintroducing milk and dairy needs to be done slowly. 

• Start small. ¼ cup of milk at a time, a few times a day.
• Drink this small amount at a meal.
• Some people do best starting with warmed milk. Try hot chocolate.
• Begin with a higher fat content of milk such as whole milk. The fat in the milk slows down the digestive process. You can reduce down to nonfat milk over time.

 If dairy products are not a part of the food options, take the time to purchase fortified products to replace them. For example, some brands of rice milk and soy milk are enriched with calcium and Vitamin D.  Another option is to use a gluten-free supplement.

 Bone health is one of the few areas of health we can “pay it forward.” Paying attention now matters in the future.  You’ll be glad you did – for yourself and everyone in your family.

Until Tomorrow!