It’s hard to believe, but the 30th anniversary of my celiac disease diagnosis is fast approaching. So much has changed about diagnosis and gluten-free living since that momentous day, and most of the changes have been positive. While celiac life is still not perfect, celiacs can be grateful for these improvements.
Health Care Provider knowledge
When I was diagnosed, my physician didn’t really know what a gluten-free diet entailed. He told me to try it but gave me no guidance about how I might make that happen. No nutritionist referral, not even an explanation of what gluten was or what grains it might include. Literally, ‘try a gluten-free diet and come back in 6 weeks.’ I had to go to the library to find out what gluten was. Now we have entire departments of celiac disease experts across the country, from Alabama to Wisconsin.
Improved diagnostic options
Back in the day, we didn’t have antibody tests, let alone genetic screening. The only real option to confirm a suspected diagnosis of celiac disease was to have an intestinal biopsy - and try getting your insurance to pay for it! Now children can be diagnosed without a biopsy, and there is even a subset of adults for whom diagnosis by serology and symptomology may be sufficient.[1]
My diagnostic path was far below today’s standards. After skin testing for a range of allergies showed a huge reaction to wheat. I went gluten-free for a few weeks. Living mostly on rice, carrots, and plain chicken breasts, I felt great. Then I rechallenged with a piece of pizza. After spending 2 weeks recovering, that same doctor told me to go back to eating gluten for 2 months so we could do the biopsy and confirm my celiac disease. Um, no thank you. I have never had an official biopsy diagnosis. By the time the antibody tests became widely available I had been gluten-free so long that a negative result would have been meaningless. I have remained gluten-free, and I don’t intend to change.
The Internet
Knowledge is power, and thanks to the web, celiacs are more powerful than ever. Medical centers make the latest scientific knowledge and medical advice available. Specialty producers and online shopping give us access to safe (albeit processed) foods. Check out this blog post for other trustworthy sources of information about your celiac disease.
The web has a dark side, too. Bad advice, junk science, and fake remedies are out there. The web helps dangerous myths spread - no, you can’t eat gluten in Europe – and can put your health at risk. Stick with safe sources of information.
Still, for all its challenges, life is far better than the days when I had to go to my local library or bookstore and order the few books that were available.
Food, glorious food!
We have so many more gluten-free products available now. For better or worse, big companies have become aware of the market for gluten-free foods. Safe pasta, cookies, breads, cakes and snack bars are more widely available than ever before. Yes, they can be overpriced and full of chemicals, but as an occasional treat, they are viable options. Now I can buy gluten-free bagels instead of eating lox and cream cheese on a Styrofoam-textured rice cracker.
I still eat rice noodles from the Asian market instead of fancy gluten-free pasta, and I have adjusted to life without bread, but it’s good to know the choice is there if I want it. I also love being able to direct friends to a safe product if they want to bring something to my home when I cook.
Labeling improvements
Speaking of store-bought food, the change in labels is hard to believe. Back in the day, gluten-containing ingredients did not have to be called out on a label. Now, thanks to the FDA’s labeling rule we know which foods and dietary supplements contain forbidden ingredients and which don’t. Our next step is to get the ADINA Act approved so that prescription and over-the-counter medications have gluten labelling too.
A cure for celiac disease?
Back in the 1990s, a gluten-free diet was the be-all and end-all of managing your celiac disease. Drug companies weren’t interested in developing new medications for us. Now, thanks to increased rates of diagnosis and intense lobbying from within the celiac community (and a special shout-out here to the Celiac Disease Foundation), several companies are working on new treatments. Many are looking for clinical trial volunteers; find out if you could qualify. Whether you can manage your celiac disease with a gluten-free diet, or you need something more, the research is a good sign.
General awareness
The change in the general population’s level of awareness is most gratifying. While there are still plenty of people out there who don’t know what gluten is, or don’t understand the seriousness of our celiac disease, more and more know someone who has celiac disease. It’s still not always easy for us. Restaurants, unless 100% gluten free, can be tricky, and eating at someone else’s home requires some careful negotiation. But we now have restaurant certification programs and even entire websites, like mine, devoted to gluten-free cooking and baking. Things are looking up!
Overall, I think life has improved tremendously since my first few weeks of living on carrot sticks, cleaning out the kitchen and re-learning how to cook and bake. After my initial shock wore off, I realized that, if I had to have a chronic disease, having one that I could manage just by controlling what I put into my body was probably one of the best possible situations. I still say that, and I am pleased to see the our options improving each year. Gluten-free living isn’t always easy, but it’s possible.
If you’re a long-term celiac, what do you think has improved?
[1] Rubio-Tapia, Alberto MD1; Hill, Ivor D. MD2; Semrad, Carol MD3; Kelly, Ciarán P. MD4; Greer, Katarina B. MD, MS5; Limketkai, Berkeley N. MD, PhD, FACG6; Lebwohl, Benjamin MD, MS7. American College of Gastroenterology Guidelines Update: Diagnosis and Management of Celiac Disease. The American Journal of Gastroenterology 118(1):p 59-76, January 2023. | DOI: 10.14309/ajg.0000000000002075
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