Almost immediately after an appendectomy, I started having abdominal pain that no doctor could figure out that soon grew to a laundry list of problems. In the six months leading up to my gluten intolerant diagnosis, my medical bills (before insurance) soared over $20,000.00. My only treatment to prevent excessive bowel movements, extreme abdominal pain, nausea, brain fog, migraines, grogginess, lack of energy, difficulty breathing, chest pains, raised lumps on my abdomen, and more is to maintain a strict gluten free diet.
Every month, more manufacturers are providing gluten free labels on their products so I am thankful to have started the diet a year ago. There is currently no standardization on gluten free labeling, which means that despite a colorful "gluten free" label taking up prime space on the front of a package, the entire ingredient list must be read for offending allergens. Products are labeled gluten free that are made on the same equipment as wheat. Others only declare that “no gluten ingredients are used” but does not provide any indication of efforts set forth to prevent cross-contamination, let alone using wheat flour to prevent items from sticking together. There should be a uniform symbol, such as the Kosher symbol, that easily demonstrates that a product tests below 20 ppm for gluten, wheat, barely, rye, and oats and efforts are made to prevent cross contamination.
The widely accepted definition of gluten free means free of wheat, barely, rye, and sometimes oats. Since regulation is not yet in place, any manufacturer can label a product as gluten free. Tasty Bite recently labeled their Barley Medley as gluten free, even though barley is listed as one of the first two ingredients (behind water). Their mistake was thankfully easily caught by informed consumers, but what of “natural flavoring” that can currently easily hide malt flavoring without any allergen declaration?
Gluten free labeling needs to extend beyond the supermarket shelves and into the pharmacy. Before I take any medicine, I need to call the company and ask if gluten is used as a binding agent otherwise what is supposed to cure me can cause considerable damage to my health.These phone calls, which often can only be placed during the manufacturer’s business hours which are impractical for the average 9-5 worker, can easily take twenty minutes or more and I have even had to wait three days to get confirmation on a product’s gluten status.
With the gluten free diet, my health has dramatically improved and I feel better than ever. Every reaction I have to gluten now has me wondering if I simply need to take the rest of the day off from work or if I need to head to the emergency room. Standardizing and regulating which products are labeled gluten free is essential for the health of so many individuals, whether they have Celiac disease, non-Celiac gluten intolerance, wheat allergies, or have found their health improves on this diet.