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
- Easy bruising
- Epitasis (nose bleeding)
- Failure to thrive
- Fatigue or general weakness
- Fluid retention
- Foul-smelling or grayish stools that are often fatty or oily
- Gastrointestinal symptoms
- Gastrointestinal hemorrhage
- Iron deficiency anemia
- lymphocytic gastritis
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:
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.