For some reason it is not showing that my letter went through, so I am adding it here:On December 11, Senator Richard Blumenthal introduced S.3021, to the Senate floor. This bill is meant to amend the Federal Food, Drug, and Cosmetic Act to require the label of a drug that is intended for human use and contains an ingredient that is derived directly or indirectly from a gluten-containing grain to identify each such ingredient, and for other purposes. It will also be known as the Gluten in Medicine Disclosure Act of 2019 and uses the same language as H.R. 2074, the bill Representative Tim Ryan introduced to the House in April. As a registered dietitian who also has celiac disease, this bill hits home both professionally and personally. Celiac disease is a life-long autoimmune disorder that can only be cured by strict avoidance of gluten; however, even if the diet is perfect and there is no cross-contact between foods, other sources of gluten, such as hidden in medications people take daily, can prevent healing of the small intestines and lead to many other health problems secondary to malabsorption of nutrients. Not only does this severely impact the person who has celiac disease, it also can cause fertility concerns and the inability to reproduce/miscarriages. I strongly encourage you to review the bill and help keep the near 1 in 100 people diagnosed with celiac disease in the United States safe and healthy. "Gluten Free" is not a fad for those with celiac disease; it is a daily requirement to avoid known and potential hidden sources of gluten that will carry on until we cease to be. Thank you so much for your consideration and support, Shannon Bares, RD, LD
Celiac Disease is a serious auto-immune condition in which even small amount of gluten (wheat, barley, rye) can make us sick. Right now it is very difficult to figure out if medications are safe for us to take. Please Please pass this bill to help keep us safe!
What if you had an allergy or sensitivity and needed to take a pill, and had a hard time figuring out whether that pill contained an ingredient that you were allergic or sensitive to?
So, let’s say you just went to the doctor, were diagnosed with strep throat and prescribed an antibiotic. As a person with Celiac Disease, is that antibiotic safe to take (i.e., gluten free)? You can ask the pharmacist; sometimes they have that info available, sometimes they don’t. If they don’t, then you would need to determine the manufacturer of the drug, and call them with the same question. Sometimes customer service knows, sometimes they don’t. Maybe there’s information on the manufacturer’s website whether the drug is gluten free or not. Sometimes they specify that, most of the time they don’t. Next step is to look at the inactive ingredients of the drug which can usually be found on the manufacturer’s website. You compare that to a list of safe inactive ingredients on glutenfreedrugs.com. All of the inactive ingredients in your pill may not be listed on that website. Imperfect for sure, but at least it’s something. So you hope for the best and take the pill, never having gotten a definitive answer.
What if you find out your drug DOES have gluten in it? Ask your pharmacist for the same drug from a different manufacturer and start the whole process again. Maybe the pharmacy only contracts with one drug manufacturer for this particular drug. OK, so now you need to find a different pharmacy to fill the prescription. But that pharmacy may be out of network with your insurance.
All the while, you’re just dying to take the pill so that you can start getting some relief from your strep throat. Is this absolutely absurd? YES, IT IS. This is why we need this bill to pass.
My daughter was diagnosed with celiac disease 2 years ago at the age 14. Now that we have her diet under control, the only struggle we have now is finding medications she can take when she gets sick. It is very frustrating that even when you call the drug manufacturers they "can't" tell you if there is gluten in their product!
As a registered nurse and wife of a celiac patient, I know what a positive impact this would make in the lives of those with celiac disease. Just the other week, my husband had to get a radiology test done and drink A barium Sulfate solution. But when he asked the radiology tech if it was gluten free, they had no idea. The only way to find out is to call the manufacturer 1-800 number, but even then the company still might not know. This bill is common sense and would be extemelu