Helping Special Needs Kids Adjust to a Gluten Free Diet

My three sons 2005

May is Celiac Disease Awareness Month

My son’s communication and language skills were so limited at the time of his Celiac Disease diagnosis.  How will he understand what he can eat and not eat?  How will he be able to communicate his dietary needs to others?

I simply told him if he ate the goldfish cracker his tummy would get sick.  He managed to find a hidden cracker and thankfully he threw it up.  I repeated,  “Goldfish crackers make your tummy sick.  No more goldfish crackers.”  It was a quick realization for him.

Slowly, I pointed out the other food culprits.  He continued to grasp the concept.

Thank you God, we prayed for this.

How will your child learn to make healthy new choices?

  • Make an accessible food cupboard or basket for your child.  Put their name on the cupboard and celebrate the cupboard as his or her own.
  • Label packages.  Highlight the words “Gluten Free” on the food packages with a highlighter or tape your own colorful label on the gluten-free product.
  • Label choices.  Make a picture board of healthy and fun gluten-free choices: fruit, crackers, yogurt, etc.  Tape the picture board on the outside or inside of the cupboard as your child is learning new dietary choices.
  • Label the refrigerator.  Dedicate a bin or shelf in the refrigerator which remains exclusively accessible for your child.  Clearly and colorfully label the shelf or bin.
  • Look for labels in the grocery store.  Go shopping together and read the gluten-free labels on food products.  When your child takes an item from the shelf ask, “Is this food gluten-free?”  Use your finger to point out the words “gluten-free”.  Then celebrate, “Yea! This looks yummy!  These crackers are good for you.  Let’s put it in the cart”.   The repetition of reading labels together will help your child get in the habit of looking for the familiar “gluten-free” words until one day he or she will be able to do it on their own.

How will your child tell others his news?

Triumph Dining offers restaurant cards you and your child can carry in a wallet.  When entering the restaurant, guide your child to get in the habit of showing the card to the waiter.  If your child is limited in their speech ability, these cards are written to the chef  explaining the limitations of the gluten-free diet.  Cards are available to order through Gluten Free Restaurants, Gluten Free Shopping | Triumph Dining.

If your child isn’t able to say, “Is that gluten-free?  Is it okay for me to eat?”, then you need to provide teachers, caregivers and grandparents a list of those food items which are off-limits.   You will discover the need to produce these lists frequently in your child’s life.  Keep a file of your list for easy access.

The news about withdrawals

In my initial research of the gluten-free diet and special needs kids,  I learned kids who crave these gluten-laden foods have most likely become addicted to them.  There is an opiate effect that occurs and many parents have reported their own children went through withdrawal like symptoms when initially eliminating gluten.  Many children with autism had a surge in their behavior. The withdrawal effects are similar to addicts withdrawing from a narcotic. I stored that information away in the back of my mind.  We began our gluten-free diet.

New textures, flours made of rice and beans, crumbly breads; are all things families typically learn to adjust to with this new diet.  But then the behavior came.  Wild behavior.  AJ began tossing items across the room.  He couldn’t keep his clothes on.  He ran across the hall as quickly as he could, throwing his body into the door, then ran through the family room throwing his body into the back door.  He ran back and forth and back and forth slamming himself into the doors and walls.  His pain tolerance was even higher than usual.

I almost became frantic, until I remembered the possible withdrawal symptoms.  I reread every word and it was describing our boy.  Not every child with autism reacts with heightened symptoms, I believe it is a small percentage, and of course our family hits the jackpot again.  I kept him home from school the first week until his body adjusted and calmed down.  I am so thankful I had the information, and this is why I am telling our story.

I don’t want our story to discourage you from putting your own child on a life-changing diet.  My hope is you will be armed with various information.

Currently more information is available to families of special needs children and some doctors are increasingly aware of the various needs for our kids.  I recently read withdrawal symptoms can be eliminated or less severe if gluten is decreased from the diet gradually.  This sounds promising.

I am not a doctor, nor a nutritionist, just a mom who adores her family and respects the energy and love you are putting into your own family.  Talk to your doctor about your child’s possible reactions.  Contact a nutritionist to discuss how to gradually incorporate a nutritional gluten-free diet for your child.

Arm yourself with facts and support…..and breathe.  You and your child will get through it.

The really good news

Upon hearing AJ had just been diagnosed with Celiac Disease, a friend told us about her own daughter who also has Down’s Syndrome and Celiac Disease.  She told us to get ready for a great burst in growth and mental ability.  Because gluten had been wreaking its havoc on the body, nutrients have not been able to work as they should.  Now as the small intestine is healing due to the diet, the nutrients are capable of reaching the body and the brain.  She was so right!  We saw a great burst in his growth and capabilities.

Other wonderful results included a decrease of spitting up by almost 90%.  AJ, as well as the rest of the family, has adjusted to the Gluten-free lifestyle successfully.  He is progressively able to ask if a food is safe for him, and thanks to the increasing market of products, he is able to find his own gluten-free labeled items on the grocery shelves.

You may also want to read: “Our nauseating road to diagnosis:  Celiac Disease”.

For more detailed information on the Gluten Free Diet or other dietary concerns for your special needs child, you may be interested in these websites:

SteppingStonesVolume4Issue1.pdf application/pdf Object.

Wm. K. Warren Medical Research Center for Celiac Disease.

National Foundation for Celiac Awareness | NFCA.

Celiac Disease and Down Syndrome.

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Our nauseating road to diagnosis: Celiac Disease

May is Celiac Disease Awareness month

Phone calls trickled in every few days when he was 11 years old.  “AJ threw up in class today. “ The calls steadily increased and whether I was in an appointment or on a field trip with my other children, I would drop everything and run to pick AJ up in the school office.  The vomiting continued daily.  Anticipating the mess he would leave, we carried a beach towel for him to sit and spit up on. The projectile vomiting indiscriminately landed on the carpet in the van or the backpacks.  Our family room carpet and recliner could no longer hold up to the abuse of constant cleaning and scrubbing, we tossed them away.

Sometimes we gotta laugh

Our family enjoys reminiscing about an incident we shared while vacationing at Disneyland.  We stood on the crowded sidewalk watching Mickey’s parade.  My husband stood behind AJ, while AJ stood above a man watching  the parade from the curb.  Without warning, AJ bent over to throw up over the stranger’s head.  Thanks to my husband’s quick reflexes, he was able to catch the barf in his hand.  I ran to the nearest restaurant for a wad of napkins and quickly cleaned up my husband’s dripping hand.   Everyone was so engrossed in the parade it seemed we were the only ones who noticed.  Snickering over our family drama and the accident interrupted, we scurried away from the crowd.

“It’s all in his head”

We could tell AJ was not “ill”, he didn’t have a fever or lack of appetite.  But he would grab his head or stomach and lay to rest as the episodes increased.  We were visiting our pediatrician frequently.  Due to AJ’s limited speech and ability to communicate with us what he felt in his body, the diagnosis was difficult.  The doctor tested him, and eventually threw his hands up stating, “It’s all in his head”.

Our instincts knew the doctor was incorrect.  As I took notes of AJ’s episodes, I believed it was connected to eating, possibly his consumption of cold and acidic smoothies.   I pushed the doctor for a referral to a Pediatric G.I.   Cynically, the pediatrician agreed.  We waited 6 long months before we could get an appointment miles away from our home.

The G.I. asked a few brief questions:

“What does he eat for lunch?”  A sandwich.

“What snacks does he enjoy”?  Goldfish crackers and Cheezits.

The specialist seemed to know immediately what was wrong.

How Celiac Disease is diagnosed

A simple blood test was ordered and the diagnosis came quickly:  Celiac Disease.   You should know however, that blood tests can come back negatively when it is indeed Celiac Disease.

A definitive diagnosis for Celiac Disease can only come from an endoscopy/biopsy where tissue samples are taken from the small intestine.

What is Celiac Disease

Celiac Disease is a genetic disorder in which the small intestine is damaged by gluten.  Gluten is the protein within wheat, barley, oats, and rye.   Gluten must be completely avoided in the Celiac’s diet.

A secondary result of the gluten intolerance is damage to the villi.  Lactose must be completely avoided the first 6 months after a Celiac Disease diagnosis in order to allow the villi to heal.

Symptoms of Celiac Disease

  • Abdominal cramps, gas and bloating
  • Anemia
  • Diarrhea
  • Easy bruising
  • Epitasis (nose bleeding)
  • Failure to thrive
  • Fatigue or general weakness
  • Flatulence
  • Fluid retention
  • Foul-smelling or grayish stools that are often fatty or oily
  • Gastrointestinal symptoms
  • Gastrointestinal hemorrhage
  • Infertility
  • Iron deficiency anemia
  • lymphocytic gastritis

For a complete list click here: Celiac Disease Symptoms.

Who has Celiac Disease

Children, adults and family members of individuals with Celiac Disease are all susceptible.  If you have any question about yourself or a loved one, don’t hesitate to request testing.

Celiac Disease is often misdiagnosed or overlooked.  The results of untreated Celiac Disease include epilepsy, internal hemorrhaging, pancreatic disease, miscarriages, infertility, central and peripheral nervous system disorders.

Down’s Syndrome and Celiac Disease

One study performed in 2001 showed Celiac Disease in individuals with Down’s Syndrome occurs 25 times more than the general population.  Generally speaking, 10% of the Down’s Syndrome population has Celiac Disease.  I would venture to guess many of these individuals do not know.

In our case, the doctor was not in tune with the symptoms of Celiac Disease nor its prevalence in the Down’s Syndrome population.  While we carry our gluten-free food products to AJ’s special needs classroom or Special Olympic events, we have not encountered another family with Down’s Syndrome and Celiac Disease.  Since many of the general population does not know they have Celiac Disease, I am confident many more of the Down’s Syndrome population have not actively pursued a diagnosis either.

More information regarding Down Syndrome and Celiac Disease:

Down Syndrome: Celiac Disease Prevalent in Children With Down Syndrome.

Cures for Celiac Disease

Besides a strict adherence to gluten-free eating, there are presently no known cures or medications for Celiac Disease.  Celiac Disease awareness is increasing among doctors and patients.

Only 5 years ago, at the time of AJ’s diagnosis, I was ordering gluten-free products online and paying out the ear for them!  Thankfully, due to the increase of accurate diagnosis and the demand for these products, many of our local grocery stores are supplying a variety of gluten-free products.

Adjusting to a Gluten-Free Lifestyle

Adjusting to a gluten-free lifestyle has had its curve balls.  I will share an additional post how we have managed this adjustment not only as a family, but with a special needs child.

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