Deep red pockets of blood raised and blistered the surface of my mother’s skin. It itched profusely.
But the rash was just a warning for the illness inside her body.
A common ingredient in everyday food was damaging her small intestine – gluten – a protein found in wheat, barley, oats and rye.
After numerous tests with negative results, my mom was placed on a gluten-free diet and her rash went away.
Although she never tested positive, her doctor diagnosed her with Celiac disease, an autoimmune disorder where gluten ingestion damages the lining of the small intestine.
Today, the disease is estimated to affect one in 100 people, according to the Celiac Disease Foundation.
And sensitivity to the protein is genetic.
After attending numerous Gluten Intolerance Group support meetings, my mother was afraid her condition may have passed down to her children.
Testing can be done to determine Celiac disease. However, according to the CDF, non-celiac gluten sensitivity is undefined and cannot be properly diagnosed.
If tested positive for the gene, patients will undergo an endoscopic biopsy to determine if the small intestine has been damaged due to gluten intake.
My mother decided to test my two brothers, sister and me.
In the genetic test, I tested positive. But in the biopsy that followed, the results were negative.
My brothers and sister tested negative on the genetic test.
However, when they had their stool tested through Enterolab, a company based in Dallas, Texas that analyzes feces to determine food sensitivities – they came out positive.
According to the University of Chicago Celiac Disease Center, Enterolab has never successfully published anything on the accuracy of stool tests, (or any other stool test manufacturers, for that matter) making it difficult to confirm the research results.
Although the tests left us with inconclusive results, my mom eliminated gluten from the household.
The diet made eating a constant struggle.
To be on a gluten-free diet, one must remove the protein completely – you can’t eat gluten-free food and then wash it down with a beer.
Allergens were often hidden in ingredient labels so my mother would call food companies to ask what products were gluten-free.
Restaurants were even worse.
Every time my family went out to eat, my mother would talk to the chef. Many had never even heard of gluten.
In the early 2000s, my mom and I spoke with then-U.S. Representative Eric Cantor, R-VA, about labeling allergens on food products.
The Food Allergen Labeling and Consumer Protection Act of 2004 – an amendment applied to the Federal Food, Drug, and Cosmetic Act requiring the labeling of food that contains an ingredient that is, or a protein from, a “major food allergen.”
Today, gluten-free marks an array products on grocery store shelves in bold letters, varying in size and shape. The overdone labeling has contributed to the misconception that these foods are healthier.
According to registered dietitian Ashley Crowl, gluten-free substitutes such as crackers or bread may contain added carbohydrates, sugars or fats to enhance flavor or shelf life.
Crowl said sometimes a gluten-free diet is viewed as a low-carb diet. However, depending on the kind of food in the diet, Crowl said some people that eliminate gluten from their meals may be missing out on nutrients.
People who are able to digest gluten can live a healthy lifestyle with or without it – it just depends on nutrition intake.
However, Crowl said “For Celiac’s it (the diet) is a necessity.”
