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More Time In Bed Than Classroom
Elizabeth was diagnosed with celiac in 1997. Her symptoms, however, began fourteen years earlier, at the age of 5. She was a very sick little girl. And she missed a lot of school because of it.
It makes me sad when I hear of a child being diagnosed with celiac. But it makes me even sadder when I hear of someone who lived through their childhood with un-diagnosed celiac. (That was me as well: A lifetime of undiagnosed celiac.)
But this is what drives me. This is why I share these stories–to prevent this from happening to others. For every story I hear, I am motivated to get stories like Elizabeth’s out. Celiac awareness and education is vital to the prevention of delayed diagnosis.
But gosh darn it, I hate that there are stories like this to share. NO ONE should have to go through a childhood SO sick, when a test, a diagnosis, and a gluten-free diet can mean a regular childhood.
The even sadder thing is—-this is still happening.
Things Are Always Better In The Light
I know it’s all about perspective. Many parents of children with celiac struggle with sadness that their child has such a strict and socially different diet. But spending a childhood in and out of hospitals because education about celiac disease is so lacking, —well that just isn’t fair in my view.
Of course, not all children living with un-diagnosed celiac spend countless days in the hospital. Symptoms vary. Some symptoms aren’t enough to put a child in the hospital—-they *just* diminish quality of life. And this simply pisses me off.
A test and a diet change can be the difference between a child feeling miserable and a child being able to keep up with his peers.
To know that children with un-diagnosed celiac are battling the physical and emotional struggles that gluten causes on a daily basis because they aren’t being tested and treated — Well, that should have us all putting our boxing gloves on.
Just How Often Was She In The Hospital?
Elizabeth remembers being in the hospital so much that she actually missed school completely through first and second grade.
Of course, the fact that she was so young, the details of those hospital stays are not clear enough to share. But that amount of time spent in the hospital surely left an impact and a memory.
Elizabeth describes her childhood self as being “all bones.” She remembers having no energy, spending most of her time in bed, either in the hospital or in her room. She was anemic, something she still struggles with today.
Elizabeth said she was in the hospital up to 20 times a year through her childhood. Some stays were a couple nights. Some stays lasted for weeks.
When Celiac Is The Diagnosis, The Treatment Is 100% Gluten Free
Elizabeth was finally tested for celiac at age 19. It took 14 years to get a diagnosis. It took her entire childhood and days and weeks and months of missed school.
But a diagnosis was just part of it. The part that makes a difference is the treatment. And the treatment for a person with celiac is the removal of gluten. ALL gluten. 100%.
And this is where we cannot judge. Elizabeth was sick her entire life. Very sick. She now had an answer to why, but she lacked the support in the how. She was still living at home. And she was living in a home where you eat what is provided. Money was tight. What was provided, however, was not always gluten free.
Even though she tried to stick to meat and veggies, Elizabeth shared that it was not easy to stay gluten free. And she admits that she still struggles with this to this day. When she caves in and consumes gluten, the result is diarrhea, vomiting, and headaches. “And I know it’s my fault,” she said.
The Risks Of Non-Compliance
Patients with celiac disease who do not adhere to a strict, gluten-free diet have been found to have an increased mortality risk, and report poorer quality of life. They often have significant nutritional deficiencies and are at an increased risk for associated autoimmune disorders, other serious conditions, and cancers. Long-term follow-up care is needed to assure patient compliance and positive health outcomes.
When we hear someone say they cheat even though they are confirmed celiac, and even though they know it will make them sick (short term and long term) —what if we offered our support? Instead of judging their choices, what if we ask, How can I help?
Yes indeed, 100% compliance is vital to a celiac’s health. 100%!
But we never know what a person’s history is. We don’t always know or understand what their level of support is.
We need to be that support. We need to lift each other up.
A note to Elizabeth (and to all those like her who struggle with strict adherence): Is there a local or semi-local support group in your area? It’s more and more difficult to find these face-to-face groups, unfortunately, but they do still exist. Facebook groups are great, but nothing beats the groups that allow for direct communication.
To those who have gluten free down: Have you thought of creating a local support group? While it is harder to get folks to attend, the need is there. And the reward is great! I used to run support group meetings—something I wish I still had in my community.
A Hope For Her Own Child
When Elizabeth got married, 17 years ago, having a baby was very important to her. She didn’t share details with me, but she emphasised that getting pregnant was “a big struggle.” She was, however, eventually blessed with a little girl.
Of course, she had concerns of sharing her celiac genes with her daughter. Tests at age six were negative. There is always the risk, however, that results could turn up positive. But celiac is certainly on mom’s radar.
Celiac Test Followed By Celiac Support Needed
Elizabeth still struggles with brain fog. And she shared that she is on various mental health related medications. Could this be a result of occasional lack of total compliance? Could this be from years of un-diagnosed celiac? Maybe it’s totally unrelated. I don’t know. I’m not a medical professional.
Either way, the lack of testing is causing far too much damage to many, many people living with un-diagnosed celiac. And along with the need for increased testing, we need to provide direction and support. What if every diagnosed patient was sent to a dietitian that specializes in celiac? (Covered by insurance!)– and multiple visits, not just one.
Gluten is poison for the person with celiac. Timely testing is so very important–as is adhering to a strict gluten-free diet–always.