Celiac Disease: Our nauseating road to diagnosis

 

Phone calls trickled in every few days when he was 11 years old.  “A.J. 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 A.J. 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 A.J., while A.J. stood above a man watching  the parade from the curb.  Without warning, A.J. 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  hand as the mess dripped through his fingers.   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 knew A.J. 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 A.J.’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 A.J.’s episodes, I believed it was connected to eating, possibly his consumption of cold and acidic smoothies. We needed to advocate for our child. I pushed the doctor for a referral to a Pediatric G.I.   The pediatrician agreed, but added a cynical remark.  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 A.J.’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 A.J.’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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Sometimes we miss the bigger picture

I was focused on the task at hand during a recent grocery shopping trip to Trader Joe’s. I had a mission to get in and out before the rush hour traffic began in the meat aisle. My mission was accomplished after 30 minutes in the store, and I stood at the grocery check-out. I slid my card, punched in the numbers, and took a moment to relax. My part of the job was done.

As I waited for the clerk to load my bags, I looked around the store. I never noticed the sign above the salads that read, “Take home for dinner today”.  I never noticed the rows of colorful umbrellas hanging over my head as I strolled through the aisles. The clerk and I had a good laugh when I told him.

Have you ever been so focused on a task, so focused on your child’s behavior, that you aren’t able to see the bigger picture? Just a few summers ago, I was greeted each morning by a spilt gallon of milk. My son was persistently dropping the milk carton and making a mess across our hard kitchen floor each morning.

I used to call these my “special needs moments”. These are random moments when my child’s special needs challenge me beyond my capacity. Stress begins to take its toll. But, these days the special needs moments turned into special needs days and special needs weeks.  I felt exasperated. After weeks of purchasing milk only to mop it up the next day, I was literally crying over spilt milk. When my stress was at full-throttle, I finally shared the milk-issue with a friend.

She patiently listened and gently suggested, “Maybe the milk carton is too heavy for him to hold”.

My eyes were opened. How did I miss such an obvious conclusion? I took the latest gallon of milk and poured it into two smaller drink containers. The next morning the floor was dry. The following weeks, the floor remained dry. The milk spilling problem was over. What I thought was a behavior, was in reality our son exercising his independence. His body just wasn’t willing to cooperate.  Kids with Down’s Syndrome have low muscle tone issues, another reason I “should have” figured it out myself.

Often times, we are in the thick of our child’s special needs. We are busily on task, taking care of our children and doing what we can to maintain our own composure. We miss the obvious signs and the dancing umbrellas because we are in survival mode. We miss the bigger picture.

Tonight I gazed at the colorful umbrellas with a sense of relief. They remind me how important it is to have a confidant in my life to gently help me see the bigger picture.

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A Dog’s best friend

Unconditional love is reciprocated, mutual odors are endured, and a depth of communication is shared between our boy and his dog. A deep bond between the two has developed, and this dog has the world’s best friend.

A.J. was one year old when we bought a puppy for our growing family. I was hugely pregnant with our second child, and it wasn’t the greatest time for me to learn how to train a dog. But, I read how dogs help build communication skills in children with developmental disabilities, so there was no time to waist!

Our Golden Retriever, Riley, quickly became a part of the family. Even though I grew up with the love and companionship of family pets, I did not yet understand the depth to which a dog would enrich our son’s life. He and A.J. attached to one another and put up with each others antics like no one else could.

Riley helped A.J. develop physically and socially. The various physical movements required to pet the dog, feed him, brush him, and walk him; all helped provide the trunk movement and daily exercise we needed to fit into A.J.’s developmental routine. When raising a child with special needs, it is crucial to fit specific movement and tactile experiences into their daily lives. These physical interactions with a loving dog came naturally.

A.J. had a bad habit of pulling Riley’s tail. Due to the mild manner of our Golden Retriever, Riley never tried to bite him when his tail was yanked. In fact, we still laugh at the day we saw Riley back his rear-end up to A.J. as if to offer his boy his tail. There they stood in our backyard, boy holding dog’s tail, both with a goofy look of contentment on their faces.

Our dear Riley became ridden with tumors at the age of 12. We were concerned about the toll Riley’s death would take upon A.J., so we began looking for a new puppy to train alongside Riley. The family took a day trip to a woman’s farm where she bred Golden Retrievers. Parked in her driveway, we took a moment to pray together, asking God to help us find the right puppy for our family.

Several adorable puppies played around our feet, and each of us had our eye on a different one to bring home. I told the woman our concern about A.J.’s reaction to the impending death of his reliable companion. She stepped inside her home and came out with her favorite puppy in her arms.

“Take this one, I was going to keep him for myself.” she said.

We trusted her and brought home her favorite puppy. We named him, “Petra”, which means “The Rock”. He is named after our all-time favorite Christian rock band.

A.J. and his brothers fell in love with Petra. Riley welcomed the puppy and nurtured him for a couple of months before his death. A.J. emotionally handled his passing better than we expected. How loving our God is, to take care of these details and concerns in our lives.

“Petra, you are home! I came back!”, AJ walks off the school bus and routinely heads directly to greet his companion.

“Look Petra, your boy is home,” I add.

They greet each other with sloppy kisses and a long hug. A.J.’s speech and language skills increase with his interactions with Petra.

“You are okay. Go outside boy. You go potty.”

“Okay, come on in now. You are a good boy.”

Recently A.J. told me a story about his Auntie’s beloved dogs playing with their friend Petra. He told me, “Maize and Jax and Petra are chasing outside.”

“What are they chasing?” I ask.

“He, Maize and Jax and Petra are chasing a squirrel.”

It has taken our son 15 years to answer a “What” or “Why” question with a full sentence. His story about chasing a squirrel required putting several words together with a little creativity and recall. I was thrilled. The doggie adventures and interactions are constantly helping develop his communication skills.

Petra keeps pace with A.J.’s needs as they walk. Together they walk, run, and rest in the shade. It can take quite a while for these two to make it around the block!

A.J. and Petra often have a chat under the kitchen desk. AJ shares special pictures of his Aunt’s dogs with Petra. Petra obliges and enjoys the pictures with his boy.

Always available, willing to listen, patient when the words take a while to form a complete thought; Petra is an unconditional friend. And his boy is the best friend a dog could ever dream of having.

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