An Essential Handout For Teachers & Aides

August 19th, 2011

Authors Mary Fry, Diane Gallant & Moira Giammetteo

What Is the Gluten-Free, Casein-Free (GFCF) Diet?

This is a dietary intervention to lessen the digestive and bowel, and behavioral issues sometimes found in children with autism spectrum disorder (ASD). Recent research indicates that there are children with a genetic predisposition to the disorder, which is then triggered by some as yet undetermined environmental event which can cause a “leaky gut” (sometimes evidenced by resulting chronic loose stools as the child cannot properly digest these proteins). If this happens, wheat and dairy are then metabolized as opiates. It is believed that by eliminating gluten (wheat) and milk protein (casein), the gut will begin to heal and the child’s overall condition will improve somewhat. Sometimes additional factors are in play and must be addressed as well before positive change is seen (such as yeast overgrowth, as an example). Because the diet is considered an “alternative” therapy, some school administrators, medical personnel, and others often view it with skepticism. But for some children, eliminating gluten and casein helps lessen self-stimulating behaviors, increases focus, and resolves gastro-intestinal distress. That’s why many parents swear by it.

The diet is not a cure for autism nor is it a substitute for traditional one-on-one intervention. Rather, by making the child more comfortable, the child becomes more receptive to learning (not to mention the potential positive impact in the child’s overall health, demeanor, and possible reduction in negative behaviors).

What Do the Children Eat?

Children can eat a wide variety of meat, chicken, eggs (although some are allergic to chicken eggs), fruits, vegetables–anything that does not contain wheat gluten or milk protein (both proteins are very similar in molecular structure, and it is estimated that as high as 91% of children with autism who follow the GFCF diet can benefit). However, some children may have additional food intolerances/sensitivities as well (including soy, corn, rice, potatoes, peanuts, beans, etc.), and parents may request other foods be eliminated. Furthermore, gluten is also found in oats, barley, rye, and most processed foods. Gluten is in even in Play Doh, adhesive on stamps and stickers, and many hygiene products (and can be absorbed through the skin–does not need to be ingested to negatively affect a gluten-sensitive child). Milk protein or casein is found in every dairy product imaginable, and is even used as a binder in canned tuna fish and lunch meats.

Many children who are on the diet will react to the slightest bit of wheat gluten or milk or soy protein. A single bite of a goldfish cracker may cause a week of bad stools, aggressive and disruptive behavior, rashes, etc. A child who “gets into” regular Play-Doh may become non-compliant, withdrawn, and regress. One bite of a graham cracker could result in severe tantrumming, head-banging, and unusually strong, aggressive behaviors, sometimes lasting several days.

How Is the GFCF Diet Implemented at School?

The Individualized Education Plan (IEP) team will need to document that a dietary intervention is being used in conjunction with traditional interventions. Generally, the parents are responsible for providing GF/CF supplies for their child to use in the classroom as well as any snacks or “special treats.” Lunches may be provided by the parents or the school cafeteria. Teachers and aides must make sure that the child uses only the GF/CF supplies provided and that food is not shared during snack or lunch times. Students in upper grades and beyond should be encouraged to learn about the diet and the consequences of cheating (i.e., painful diarrhea, loss of emotional control, etc.)

Does the School Have to Follow the Diet?

Yes. Federal law says that the school must provide allergen-free foods for a child through the cafeteria service if the parent requests at no additional costs to children whose disability restricts their diet as defined in USDA’s nondiscrimination regulations, 7 CFR Part 15b, and that all school staff must follow the child’s dietary needs written into the IEP. The school is liable for protecting children and negligence by staff may result in the necessity for a 1:1 aide to keep the child safe in the school environment.

What About Non-Food Items Like Play-Doh?

Play Doh contains wheat. There is some debate as to whether gluten molecules can be absorbed through the skin; however, there is no doubt that younger children will put their hands in their mouth or even eat Play Doh. Crayola Model Magic can be used as a Play Doh substitute. Other non-food items that may include wheat are paints, markers, glue, glue sticks, paste, tape, makeup or face paints, sunscreens, some band aids, glue on envelopes, stickers, hand stamps, lotions, etc. (As an example, a shopping trip to Trader Joes ended with a roll of stickers, handed out to children in the store, stuck all over a child’s legs and arms, and the child’s resulting aggressive behavior was all the proof parents needed to ensure stickers were not used on skin in the future.) The safest way to handle this is to provide parents with a list of items needed, and only use products sent from home. If the child becomes sunburned, because the parent failed to send in GFCF sunscreen, that is the parent’s fault, not yours. If you do crafts involving pasta, make sure that the parent supplies you with rice or corn pasta in the necessary shapes and quantities–give them plenty of notice.

What About Materials Used in Speech Therapy, Occupational Therapy, and Physical Therapy?

Toothettes and lemon flavored cotton swabs used by speech therapists are GF/CF. Parents can provide lollipops, Jet brand marshmallows, candy reinforcers, etc. as part of their “school supplies.” Colgate shaving cream is acceptable for OT (occupational therapy) use, as are beans and rice used in sensory integration bins. Beeswax, Model Magic or Silly Putty can be used for molding clays to improve hand strength. However, some substances—Nickelodeon Floam or Goop—are not GF/CF. Lotions and powders used in physical therapy or for sensory integration should be provided by the parent after consultation with the therapist. (Again, realize that not all products used for the general class will be GF/CF. When in doubt, ask the parent to confirm GF/CF status, or to provide a suitable substitute to be reserved solely for their child’s use.)

What Happens When We Have Special Treats For Birthdays or Holidays?

Teachers must give the parent at least a few days notice to provide similar “special treats.” Parents who are using the GF/CF diet cannot run to the store and buy cupcakes for the next day—these cupcakes have to be made from scratch using a combination of special flours that can be hard to find. Given enough notice, though, most parents can come up with substitutes. Try to make birthdays and holidays less food-oriented; substitute with crafts, carnival or piñata type toys, music, or movement activities, instead of cookies and cupcakes. If you have a freezer on-site, you might request the parent to provide a few cupcakes and cookies to freeze for unplanned celebrations, so that the child need not feel left out.

We Have Many Hands-On Activities That Involve Food – How Should We Handle This?

Give the parent at least several days notice – the more the better – and start planning some alternate activities that do not involve food. Example: If the class is going to make a loaf of bread from scratch, ask the GF/CF parent to supply the flours for the dough. Parents doing the GF/CF diet may be happy to do this once in a while, but if their child must be excluded because of weekly pizza parties or daily snack preparation as a class, you may hear complaints.

What Should I Do If the Child Eats or Gets Into Something They Shouldn’t?

Call the parents as soon as possible for instructions – be prepared to tell them what the food was, the quantity, and the time that the incident occurred. Do not wait – even though it is not a medical emergency, in a parent’s mind, it may be. Some parents will come and pick up the child to give them digestive enzymes and over-the-counter medications. They may wish to rush the child home to soak in an Epsom salts bath to possibly help minimize the potential damage. Other parents will do nothing and then yell at you and blame you for a week’s worth of sleepless nights. The important thing is to inform the parents as soon as possible and try not to let it happen again.

Anything Else?

It is critical to keep the lines of communication open. The GF/CF diet can be challenging to get underway – but with cooperation and knowledge, it is very manageable to maintain in the classroom. If parents and teachers work together, though, the improvements in the child’s health, language, social engagement, and behavior make this a win-win situation across the board.

No one says the diet cures autism – but it just may make traditional interventions go more smoothly for everyone concerned.

Common GF/CF** School Products/Material

  • Chalk – Crayola
  • Crayons – Crayola
  • Foam / Shaving cream – Colgate Shaving Cream is GF/CF (non-mentholated, white cream preferred)
  • Glue (liquid) – Elmer’s washable glue or Ross
  • Glue Stick – Elmer’s or Ross
  • Markers – Crayola (including Color Wonder as well)
  • Paints (w/ brush) Palmer paint products; Crayola Oil Pastels, powder paint, and water soluble oil pastels; Prism Brand paints
  • Paints – Crayola Finger and powder paints, Palmer, Lakeshore or Prang.  Ross and Elmer’s paints (except finger paints)
  • Play Clay – Crayola Model Magic (NO Crayola Clay – that contains gluten)
  • Silly Putty – Crayola
  • Stickers – Most contain gluten – If a sticker is placed on clothes or paper, parent may allow it as acceptable. However, it is to be taken away from the child if the child insists on putting any stickers on skin….the adhesive is transferring gluten directly through the skin.
    • 3M brand tapes, including Post-It notes and Scotch tape, RoseArt brand stickers, Sandylion brand stickers, Smilemakers brand stickers
  • Sunscreen – Banana Boat
  • Lip balm – Burt’s Bees Pomegranate or medicated balms

**Please contact manufacturers to verify GFCFSF status since they may change ingredients.

Personal Care Products While GFCF

Many children need lotion, sunscreen and other products that are GFCF. Any lotions or topical products used that are NOT GFCF can cause as much of a problem as eating a forbidden food.

Reminder: If you even slightly doubt whether a product is GFCF safe for a child with autism, avoid it until you can confer directly with the child’s parents whether or not the product in question is truly GFCF.  Although there are examples of GFCF products provided, companies can and often do modify their products from time to time so it is wise to double-check the ingredients and to always check with parents first before using any questionable product in the classroom or anywhere else.

Including GFCF Diet into the IEP Goals & Objectives

Here are some suggested goals & objectives to include into your IEP (Individual Education Plan) by a TACA super mom – Moira.

GOAL 1:

Child will deny offer of foods that are not brought from home

Incremental objective #1 related to the goal:
When adult asks child if he can eat food not brought from home, he will answer “No” 70% of the time.

Incremental objective #2 related to the goal:
When adult asks child if he can eat food not brought from home, he will answer “No” 80% of the time.

GOAL 2:

Will self monitor the consumption of safe foods and non-edible items

Incremental objective #1 related to the goal:
Will be able to decline offers of unsafe foods that look similar to his by asking “Am I allergic to this?” 2 out of 5 opportunities.

Incremental objective #2 related to the goal:
Will refrain from eating non-edible items (such as rocks, plastic and wood) at all times independently or by asking an adult 4 out of 5 opportunities.

GOAL 3:

Will self-monitor safe food consumption (gluten and casein free diet)

Incremental objective #1 related to the goal:
Will be able to only consume foods provided for him from home.

Incremental objective #2 related to the goal:
Will be able to decline offers of unsafe foods.

SPECIAL NOTE:

These are sample goals. Please be sure to work with your team of professionals in making a goal list that is unique to your child’s needs.

 

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