Gluten in Medication Disclosure

If you have Celiac Disease or are gluten free for other health reasons you know that you have to be on the lookout for gluten not only in your food and beverages, but also in beauty products, household cleansers and even in our medications.

Like many other Celiacs, I also have hypothyroidism.  I was actually diagnosed with my thyroid condition decades before I found out about my Celiac Disease, which I believe I've actually had longer.  I just recently read a conversation thread on a Celiac page I follow on Facebook where several people who also have hypothyroidism were comparing problems they've had with various thyroid medications such as Synthroid and Levothyroxine.  I have been on both of these medications at one time or another, beginning with Synthroid and then the pharmacist switched me to Levothyroxine several years later, well before I was diagnosed with Celiac.  Most recently the pharmacy switched me from the Levothyroxine to Euthyrox, which I'd never heard of.  They didn't tell me when I picked up my refill that they had switched my medication and I didn't look at it until I got home from the store.  My first thought was panic that I had a new medication that I knew nothing about.  I was not happy with that at all, as the pharmacy I use has on record that I have Celiac Disease and didn't say a thing about the new medication.  

The sad truth is that, like too many doctors, pharmacists know very little about Celiac Disease since there is no medical or pharmaceutical treatment available for this disease.  However, I would have thought that since I have to be gluten free, they would have mentioned it when I went in to pick up my refill that I thought was Levothyroxine.  Before I ever took my first dose, I went online to research this product.  Unfortunately, I was unable to even locate any ingredients for this product, though I went directly to the company's webpage https://www.provellpharma.com/  This is very frustrating for me as I NEED to take my thyroid medication daily and suffer when I don't, but I also NEED to be confident that it is gluten free.  After thoroughly searching online to get information about this medication, I finally decided to contact the company this weekend to ask them outright.  I'll let you know what their response is once I hear back from them.  At this time I haven't had any adverse reactions, however, it does make me nervous for prolonged use of a medication that I don't know if it is safe or not.  I asked at the pharmacy to switch me back to the Levothyroxine (by the way, the only brand of Levothyroxine that is gluten free is Lannet brand).  They said that they don't have a good reason to unless I begin to have adverse reactions or my doctor insists that I have to have a specific medication.  They, also, couldn't tell me if the new medication is gluten free or not.  They didn't know.  They were very polite and courteous, but, unfortunately, that doesn't help me with knowing if this medication is safe for me to use.

Earlier this year, legislation was introduced by Representative Tim Ryan on the floor of Congress called the Gluten in Medicine Disclosure Act of 2019.  Unfortunately, no summary of this bill has been posted yet.  Our government moves very slowly.  This piece of legislation was introduced in April, 2019 and they still haven't posted a summary of it.  When they do, you'll be able to read it here.  There is other information available about this proposed legislation, though, that is worth reading.

This is such an important piece of legislation, that, if passed, would hugely impact everyone on any kind of medication who is gluten free for health reasons!

To learn more about this and how you can let your voice be heard regarding this vital matter to our community, visit Beyond Celiac.  Their website is where I first learned of this legislation.  This is your chance to make your voice heard!  As more is released about this proposed legislation I will keep you posted with updates.  

Until this is passed (I'm being optimistic and hopeful here that it WILL pass) we still have to do the research ourselves and hope for the best.  We are our own best advocates and we have to keep fighting together to get what we need in order to take care of our health and well-being.

12/16/19 Update:
I received a call back this morning from Provell Pharmaceuticals.  I was impressed that not only did they get back to me so quickly, but also that they made a phone call instead of just sending an emailed reply.  The representative was very helpful and was able to inform me that Euthyrox is, in fact, gluten free.  This is a huge relief to me and I greatly appreciate the prompt attention and the importance they placed on getting me this information.