After my unexpected celiac diagnosis, I was lost.  It had taken me seemingly forever to find a doctor with any knowledge of celiac disease but he lacked the ability to help me maintain a gluten free lifestyle.  So I did what came naturally to me, I located the closest gluten free support group and jumped in with both feet.  While volunteering with the Tucson CSA support group, I was welcomed by the gluten free community and touched by the stories of its members.  Several of these members will always hold a special place in my heart for both their compassion and their own triumphant stories.  When I met Cheyenne and her beautiful family, I was struck by the poignancy of her daughter’s story.

As you read Cheyenne and her daughter McKendra’s story, I hope it demonstrates why we chose to advocate for awareness of celiac disease and non-gluten sensitivity.  Ultimately, no parent should have to bear being told there isn’t a diagnosis to help your child.  As a result, the child’s health will not only worsen but they may not survive.  After years of advocating for her daughter’s health, Cheyenne finally received a correct diagnosis of celiac disease which drastically changed and may have actually saved McKendra’s life.

Please read the below guest post from my inspiring, mom warrior friend Cheyenne Clark.  Perhaps it will help you or another parent be persistent enough to obtain the answers you seek.

McKendra’s Story

One of two medical binders which document the years of health conditions that finally led to her celiac diagnosis.

Looking back on my daughter’s early years, I get very emotional.  Have you ever gone back in your mind to a time and relived the sadness as if it were happening now? I hate that feeling.

Fortunately for my daughter McKendra, she was too young to remember her very ill days.  She is the happiest person I have ever known. I often think that she is so happy because she was tired of not feeling well. It’s hard to imagine for a little one but she had to fight for her health. Her final diagnosis of celiac disease took us 6 years to figure out.  The diagnosis for celiac disease can be extremely difficult to determine. As a mom and a celiac, I am thrilled to see this changing for the positive. The awareness of this autoimmune disease is growing rapidly. Let’s keep it up!

My daughter is now a healthy 11 year old. She is a great student, has a kind heart and loves to play Yahtzee. I wanted to begin with the positive part of her story. She has transitioned from a special needs classroom to a traditional classroom and is at the top of her class. I attribute every bit of her success in life to eliminating gluten from her diet. Once we stopped the poisoning of her gut, the change in her health was immediate.  At one point, we were told that our child may not survive infancy. She not only survived.  She is thriving!

Her infancy was particularly tough. She had trouble eating from the start. I had tried breastfeeding but could not produce milk due to my own undiagnosed celiac disease. McKendra would take 2-3 hours to finish a bottle. She would cry most of the day, every day. My husband stayed home full time with her because we were afraid someone else would not be able to handle her. At times, it was unbearable even for us. We knew we were her only support and tried to soothe her.

As a baby, McKendra had difficulty holding her head up and other developmental delays

At about 9 months old, we started to notice that she was not sitting up or rolling over. Her tummy was distended and one arm would stay in an upright position. She had chronic constipation which required medication. McKendra was also on breathing treatments most of the time to treat her severe asthma.

For years, we consulted specialists in cardiology, neurology, gastroenterology, genetics, as well as speech, physical, and occupational therapists. They performed test after test on her. These test included a nerve conduction test where electric shocks were administered to the skin to see if her nerves were working normally. There were no answers and no diagnosis beyond a description of “global developmental delay with unknown cause.”

McKendra did not speak until she was about 5 years old. She was very smart and could identify colors, numbers and letters but her brain could not tell her body how to physically speak. She lacked the planning skills to coordinate movement in her mouth. She relied on sign language and an augmentative communication device (a computer that speaks for you).

She had vomiting episodes, night terrors, and seizures. Once McKendra had the “diagnosis” of epilepsy we stopped searching for answers. Her father and I assumed that the seizures were probably the cause of most of her delays. We treated each individual symptom as best as we could. She finally began walking at about 2 years old and speaking at around 5.

When we had stopped searching for a diagnosis, the answer came unexpectedly. I was diagnosed with celiac disease through biopsy in January of 2008. After researching this new autoimmune disease, I quickly realized that McKendra had many of the symptoms. We called her pediatrician and asked to have her tested. The pediatrician did not think this was her issue. Her antibody levels were extremely high. The entire pediatric staff called my husband on speaker phone to tell him the news. They apologized for not identifying celiac disease earlier. The following month,the medical advisory board of the local Celiac Sprue Association chapter did a presentation on celiac disease for the pediatricians and their nursing staff. To this day her pediatrician credits McKendra’s case as a learning opportunity. He has increased awareness and has made more accurate diagnoses because of her.

McKendra is a healthy, intelligent girl. Photo from 2014

Once McKendra went on a gluten free diet she grew 5 inches in less than a year. She no longer needs her breathing machine and rarely vomits. McKendra’s developmental delays practically vanished. She has now been gluten free for 6 years. There are challenges but they are minor compared to her younger years. The relief we felt with her diagnosis was immense. She will not go through life feeling sick. It was a blessing to be diagnosed at six years old. McKendra handles this disease with more grace than I do. She is my hero in every way imaginable!

Grateful Mom,

Cheyenne Clark

Tucson, AZ

chyn113@yahoo.com