This is a grandfather’s journey to understand the disease afflicting a beloved grandchild – that might be affecting you or someone you love.
My grandson is now a healthy, growing boy of 8, a joy to his family. But that wasn't the case 6 years ago. From the time he was 2 years old his parents were aware he was small for his age. By the time he was 5 he was at the very lowest percentile in height and weight.
But that wasn’t the only concern. He was constantly complaining about stomach aches and headaches - crying because of the pain. No parent ever wants to see their child suffer like that. After a number of doctor appointments and tests (not fun for the child or the parent), they had an answer – Celiac Disease, an immune system response to gluten, a protein in wheat, rye and barley.
That was almost 3 years ago, and boy oh boy have they (and we as the concerned grandparents) learned a lot since. Not just about food, but about his entire environment.
You may be thinking that everything nowadays comes in a gluten-free option so it’s much easier for those with Celiac Disease than it used to be. While that is true, the risks of exposure to anything containing gluten - especially for a young child – are still formidable.
With the diagnosis of Celiac Disease, his mother (my daughter) immediately slammed the door on the typical products he isn’t supposed to eat. Gluten-containing foods are anything with wheat, barley or rye (oats are actually gluten free but are often cross-contaminated which is why you have to buy gluten-free oats). Wheat is added to many foods you wouldn’t normally think have it, such as soy sauce, barbeque sauce, salad dressings and many processed foods. It was quite a learning experience – and is still going on.
The food issues are not as simple as just buying foods labeled GF (gluten-free). Dining out is a particular challenge. There is always the concern for contamination from airborne flour, food handling and food preparation. For example, a “gluten free” pot of soup that has the smallest crumb of a wheat cracker fall into it would not be safe for a person with celiac disease.
On top of all that, she scoured their kitchen, replaced all wooden utensils and baking trays, and ditched the old toaster for fear that even one crumb of gluten-containing wheat could contaminate an entire meal for him, causing him to relapse into that painful state.
Even more, his parents learned that food wasn’t the only culprit. Soap and shampoo could contain gluten, as well as paint, glue, crayons, play clay and many other materials he was using every day. They can get on the skin and underneath the fingernails of young and not-so-young children who then put their hands into their mouths, exposing them to the substance that their body recognizes as poison.
The family worked with the school and all his playmates so they could understand why he could eat only certain things at school, and why he couldn’t always accept food goodies that were offered to him by others. This change was a little more challenging for the family. People generally understand “food allergies,” but Celiac Disease is not an allergy - and tactile exposure as a risk was a new concept for most.
Celiac is an autoimmune, life-long disease that remains in the body, even when under control. When the body is exposed to gluten the immune system attacks the small intestine rendering it unable to absorb and utilize nutrients from food (check out “villi-celiac” on the internet). The result can range from discomfort to extreme pain.
There are over 300 different symptoms associated with Celiac Disease, including bone and joint pain, failure to thrive / poor growth, diarrhea or constipation, and even behavioral and cognitive difficulties. If you have a child who doesn’t seem to be growing like they should, has numerous cavities, joint pain or has abdominal or bowel problems, it might be worthwhile having him/her checked for Celiac.
Important: You can’t go gluten free before testing for it - the test is only accurate if gluten is being ingested. If you have similar issues yourself without a conclusive diagnosis (maybe not so much the growing issue, though ☺), you might want to have yourself checked for Celiac Disease, especially if you are “of a certain age,” as this wasn’t something generally known for many years (search “banana baby – celiac”).
There is considerable good information online, especially from the Celiac Disease Foundation (www.celiac.org), as well as many support groups. Below are some articles that are credible, although most talk about food but not other exposure risks, which is why I wrote this. Hope it helps.
Now back to my specialties of energy conservation, indoor air quality, green buildings and sustainability…
About me: I am an engineer not a nutritionist or doctor, but have been interested in health and nutrition for many years. I’ve always believed in “a sound mind in a sound body” – and that ties in with what I do to help keep our planet - and the people who inhabit it - healthy.
About my daughter: She earned her Master’s degree in Chinese medicine and acupuncture from Bastyr University, a Bachelor’s degree in Organic Chemistry and Phytopharmacology from The Evergreen College, and certification in Western herbal medicine. She is currently teaching and practicing acupuncture in the Los Angeles area www.elainagreenberg.com.