Has gluten-free living gotten easier as awareness has increased? When I learned gluten-free living was a necessity for me, it took an average of 11 years to get a diagnosis of celiac disease, gluten-free products were limited and only available in specialty stores, and few restaurants offered gluten-free menus. That was 13 years ago. What has changed?
Access to information has increased
Over the past decade, the internet and smart devices have increased our access to information exponentially. Want to know if the Knorr Vegetable Recipe Mix your friend used in the spinach dip she brought to a party is gluten-free? Just grab your phone and find out. Want to find gluten-free pizza nearby? A digital assistant can find it and give you driving directions. Need to make sure a restaurant choice will be easy for you? Preview the menu on the website. Interested in current research? Much of the information is just a click away. Want to find a gluten-free partner or friend? Try http://glutenfreesingles.com/. Advances in technology have brought the most changes by far.
Restaurants are more informed
The term gluten-free is now widely recognized. Chances are that the waiter at your favorite restaurant is familiar with the term. That restaurant may offer a separate gluten-free menu or have certain items designated gluten-friendly. Many national chains publish allergen information online.
Major supermarkets have gluten-free selections
You can now find a selection of gluten-free convenience food at every major supermarket. In fact, the top-selling breakfast cereal in the USA is gluten-free Honey Nut Cheerios. Other commonly stocked gluten-free labeled foods are crackers, pretzels, pasta, cake mix, flour blends, cookies, frozen pizza, and frozen waffles. Even convenience stores keep a selection of high protein gluten-free snacks on hand.
Specialty bakeries exist
Dedicated gluten-free bakeries that eliminate the possibility of cross-contact with gluten containing ingredients now dot the country. Not only can you choose from cookies, brownies, cheesecake, pie, and doughnuts, beautifully decorated gluten-free wedding and birthday cakes are available in cities across the US. Many specialty bakeries also offer dairy-free, nut-free, and vegan options.
Gluten-free labeling now has a standard in the US
Prior to 2014, a gluten-free label didn’t necessarily mean the product was free of gluten because there was no labeling standard in place. As of August 5, 2014, FDA-regulated packaged foods bearing a gluten-free claim must meet the following requirements: the food either must be inherently gluten-free; or shall not contain an ingredient that is: 1) a gluten-containing grain (e.g., spelt wheat); 2) derived from a gluten-containing grain that has not been processed to remove gluten (e.g., wheat flour); or 3) derived from a gluten-containing grain that has been processed to remove gluten (e.g., wheat starch), if the use of that ingredient results in the presence of 20 parts per million (ppm) or more gluten in the food. Also, any unavoidable presence of gluten in the food must be less than 20 ppm. This rule does not apply to USDA (meat, poultry, some egg products) or TTB (alcoholic beverages) regulated foods.
Testing for celiac disease has increased
Doctors are more likely to test for celiac disease now than they were in 2004. The average length of diagnosis from onset of symptoms currently ranges from 6 – 10 years in the US. New screening tests are in development that may increase test rates in the future.
Experimental treatment is being tested
Research at Walter and Eliza Hall Institute of Medical Research in Australia has led to the development of Nexvan2®, a product that aims to retrain the immune system to tolerate gluten. This treatment is currently being studied in clinical trials led by ImmusanT of Cambridge, MA. A Phase 2 study is scheduled to begin this year. If you would like to participate in ImmusanT studies, visit http://www.immusant.com/patient-resources/learn-more.php.
Looks like quite a few things have changed for the better in the gluten-free world! On balance, there are still things that can be improved.
More information can lead to confusion
When the mountain looks overwhelming, it’s difficult to start climbing. The sheer volume of information available can sometimes make things seem more confusing and difficult. Determining whether sources are reliable, recipes have been tested before publication, or a gluten-free pizza crust is being topped and baked in a kitchen where flour fills the air still requires time and energy. Well-meaning friends may pass along incomplete or incorrect information obtained online. The ingredients list on a favorite product you previously researched may unexpectedly change. In real life, it’s never quite as simple as 1-2-3.
Your server may not really know what gluten-free means
While most waiters have now heard the term gluten-free, they may not have a clear understanding of what it means. This sometimes makes communication a bit more awkward. They may also have served people who jumped on the gluten-free bandwagon as a fad and who cheat whenever they want a piece of cake. This makes it harder for those of us who must be gluten-free to be taken seriously.
Gluten-free processed food is still processed food
There seems to be a never-ending parade of less than delightful, expensive products coming and going from store shelves. At one point, these were grouped together in sections marked gluten-free. Now, they’ve been reintegrated into the regular product shelves where they’re more difficult to locate. Some packaged convenience products taste good. Many do not. And even though they may be gluten-free, they’re still processed food.
It’s harder to find gluten-free lists
Now that there’s a labeling standard, some companies have stopped publishing lists of gluten-free products online and have substituted a “read the label” statement. This makes it harder to research things like acceptable Halloween candy in advance.
The rate of diagnosis still takes 6 – 10 years
While doctors may test for celiac more frequently, it can still take 10 years to receive a diagnosis and over 90% of those with the disease remain undiagnosed. That doesn’t feel like much progress. That means over 2.25 million in the US are living with a nearly 4-fold increased risk of death and do not know it.*
According to the Celiac Support Association:
Untreated celiac disease increases the risk of cancer 200-300%.
Untreated celiac disease increases the risk of miscarriage 800-900%.
66% of those with celiac disease have osteopenia or osteoporosis.
51.4% of those with celiac disease have neurologic disorders
Healthcare costs per untreated celiac in the US: $5,000 – $12,000 annually.
Total US healthcare cost for all untreated celiacs: $14.5 – $34.8 billion annually.
And if you really want to experience how little things have changed…
Visit a few weddings, baby showers, football watching parties, funeral luncheons, law school receptions, fundraising events, committee meetings, festivals, coffee houses, concession stands, hotel breakfast buffets, and neighborhood potlucks. While there are now some exceptions, the pre-eat or carry your own food rule still frequently applies. Ingredient information is not typically available in these settings and options are often limited.
Progress has been made
Things have gotten easier on many fronts. I am grateful for those. When I discover things that have become more difficult, I feel frustrated, but I stay the course because it’s worth it to me to feel good. And all things considered, living gluten-free is not that difficult. It simply requires commitment and planning.
Is a gluten-free lifestyle worth it
Yes!!!! Even if nothing had changed in the past 13 years, living a gluten-free lifestyle is absolutely worth any inconvenience for me. Having a chance to feel my best and be my healthiest is always worth it because how I feel affects my quality of life every minute of every day. Being my healthiest also makes it possible for me to potentially enjoy more years of living a full life. I can’t think of any reason I wouldn’t want that.
Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”