They say that common etiquette means not talking about sex, religion or politics.
Hmmm…I’ve already talked about sex drive, if sperm is gluten free, and gluten-free sex for only $27.
I’ve also discussed if you can pray your celiac away and if a church has the right to ban gluten-free hosts.
Since we’ve already pretty much thrown etiquette out the window, it’s time to jump into politics. But this is for a good cause…our health (and our sanity.)
So I’ve been on a specific medication for about 6 years now. It renews every month and every month it’s the same pill. Until yesterday when Mrs. Dude picked up my meds. I opened the bottle and WHAT THE HELL?? They looked totally different. Checked the label…it was the right medication. Checked the manufacturer (since it’s a generic) and CRAP…a new manufacturer. Is it gluten-free??
I called the pharmacy. Did not know.
They called the manufacturer. I waited.
They called me back. They said it’s safe.
Definitely a relief, but wouldn’t it be nice (and a heck of a lot easier) if all medications had to be labeled whether they contained gluten? I mean, how cool would that be?
Well…your dream could become a reality. But we need your help.
Representatives Tim Ryan (Ohio) and Nita Lowey (NY) have introduced the Gluten in Medication Disclosure Act. Why did they do it? I’ll let my two new BFF’s explain.
From Tim Ryan:
And From Nita Lowey:
That’s the good news. The bad news is that the bill was introduced in 2013 and did not get enacted. So they just recently reintroduced it again.
Want more bad news? The official prognosis is that the bill has a 0% chance of getting enacted. That’s right…ZERO!!
Passing a bill is a five-step process. It gets introduced (“Hello Bill…nice to meet you.”), gets reported by the Congressional Committee, passes House, passes Senate, passes gas (just kidding) and finally gets signed by the President.
So why does it have an estimated zero percent chance of being passed? Because politicians are like most people; if it doesn’t affect them, they don’t care. And lord knows how many of them are in the pockets of the large pharmaceutical companies. A fellow celiac emailed his local congressman (Congressman Rohrabacher) about supporting the act and what did he get in response? A canned letter bashing The Affordable Care Act (Obamacare). Unreal. This is why congress has a 9% favorability rating, falling below traffic jams and cockroaches.
(Dude note: Say what you will about the ACA, but as a person with a history of bladder cancer, skin cancer, celiac disease and blood clots, I would be considered uninsurable. Not anymore.)
So if it has such a slim chance of getting passed, do we throw in the towel? Let me ask you. Did Bluto throw in the towel?
This may be our last shot folks. If we go down, let’s go down swinging.
Please contact your local representative and ask/beg them to support the Gluten in Medication Identification Act.
[button color=”orange2″ link=”http://www.house.gov/representatives/find/” size=”big” target=”_blank”]FIND YOUR LOCAL REPRESENTATIVE HERE[/button]
And please, please, please…share the ever-living heck out of this page and spread the word. Power to the people.
Thank you.
P.S. Someone asked if I could supply a sample letter so you could copy and paste and make it easier. If you’re stuck, try something like this:
Millions of your fellow Americans have a medical necessity to be 100% gluten-free. It’s not a fad and it’s not a joke. There are currently no labeling laws in place to determine whether medications are gluten-free or not, putting people at serious risk. The pharmacies usually do not know, and even a call to the manufacturer may not get the right answer. I am asking you to please support the Gluten in Medicine Disclosure Act (HR 3648) introduced by Representatives Tim Ryan and Nita Lowey. Thank you in advance for your consideration.
Is it possible to have a sample letter available to send to our representatives? I’m not very eloquent with words and I fear I won’t get the point across. I also think more people will contact their reps if they have a letter to paste in. Good idea??
Thanks! This is important legislation!
Good call. Added it to the end of my post.
And here is a link to a petition I created. https://petitions.whitehouse.gov//petition/pass-gluten-medicine-disclosure-act-hr-3648-so-people-celiac-disease-can-check-if-medicine-safe
We need 100,000 signatures by the 11th of December, and there are only 7 so far.
They should have included medication when they were fighting to get food labeled gluten free. Just saying.
Melissa, it took a lot just to get the food labeling law passed. Dr Fasano and Jules Shepard were both a huge part of that and we owe them much gratitude for it. I’m with you, but one battle at a time. 🙂
I just spent 3 weeks trying to get gluten free metformin from both my local and mail order pharmacy. I cannot believe how many times I got told “Tough luck” when I asked for help. At one point they even told my doctor that it was a waste of their time to contact a manufacturer for me….I finally got an allergist and a pharmacist from my mail order group on the line at the same time, after 10 phone calls and we found a brand that works. The downside, it has a coating that tastes like cherry cough syrup.
I cannot believe how unhelpful they were. Silly me to think that they will warn me about drug interactions, but not care if a life saving medication is killing me.
Do you mind sharing what manufacturer of metformin that you finally found that was gluten free? We are working on this currently with my daugther. Thank You
Done!
Thank you for this information. I’ve just contacted our Rep in Massachusetts!
Done!
Hello, my name is Amy and I am Congressman ###’s constituent. My two children are ages 10 and 13, and both have celiac disease. I am asking the Congressman to not only support, but to cosponsor, HR3648: the Gluten in Medication Disclosure Act introduced by Representative Ryan from Ohio and Representative Lowey in New York.
‘Do you mean that medication can have gluten in it?’
Yes. While food is now required to be labeled at least for wheat, medications are not, and pharmacies and doctors have no idea of the inactive ingredients in the medicines. Gluten can be used to bind, or to coat to prevent sticking, and can be anywhere in the manufacturing process.
‘Really?’
Why yes. And sitting in the ER in the middle of the night with a child doubled over crying because she had no idea that she ingested gluten should not happen.
‘No, it should not.’
Please tell the Congressman that I am willing to come in to provide more information, write letters, testify, whatever it takes to help this bill pass.
‘I will let him know.’
Done. though I’m not expecting much from Dan Donovan.
I ended up sharing my own personal story concerning Synthroid. I hope what I sent to my representative helps. Here is what I sent.
I am asking you please to support the Gluten in Medicine Disclosure Act (HR 3648) introduced by Representatives Tim Ryan and Nita Lowey. If there are any parts of this legislation that you find objectionable, please be willing to work with them to make it something that you can support.
I have hypothyroidism and have to take replacement thyroid hormone daily. For years, I had been taking a form of levothyroxine manufactured by Mylan that I knew to be gluten-free. I was able to confirm its gluten-free status using the Gluten Free Drugs website. Earlier this year, my prescription benefits through work switched to CVS/Caremark, so I changed over my mail order prescription to them. The first time they filled my thyroid medication, they switched it to Synthroid. When I checked Gluten Free Drugs, the site said that its gluten-free status cannot be guaranteed. When I called the manufacturer, the person I spoke with told me the medication was gluten-free. It’s possible I may have misunderstood what that person told me. When I started taking the medication, I thought it was fine. Over time, however, I started having issues. I tried different things, such as cutting back on the amount I was taking (thinking I might have been taking too much) and trying probiotics (which didn’t work out for me because even the gluten-free labeled ones still had trace gluten in them to which I reacted). I finally realized that the thyroid medication was causing problems when I stopped it and felt better. I called my doctor, and she worked with CVS/Caremark to get me what I was taking previously, the levothyroxine by Mylan. All of this could have been avoided if the Synthroid information contained warnings or advisories about gluten content. Not everyone with gluten issues reacts, or has noticeable reactions, immediately. Sometimes they happen over time and get worse over time, at times to the point that it’s difficult to track down the culprit. Having reliable, in-print information about the gluten content of medications will allow those of us with gluten-related disorders to make informed decisions about the medications we take and will better help us to work with our doctors and pharmacists to find the medicines that would work best for us and protect our health. Thank you so much for your consideration.
Done, Dude. I just emailed my representative. They should disclose ALL ingredients. Lactose can also be a gotcha in prescription meds. And all kinds of other gunk that can cause a yucky reaction! Thank you!! 🙂
Already done, but doing it again and sharing this post. THANK YOU, Dude, for taking another step up on the advocate ladder … and GOD BLESS YOU!!!!
I just reviewed the text of the bill and it is surprisingly brief; it would easily and legibly fit on one page (I figured what with government bureaucracy being what it is, it would run at least 20-odd pages). A fairly straightforward, not particularly complex document as far as public policy goes; it’s simply a small amendment to add a mere four lines of text to an existing and considerably larger Act that has itself already been amended 22 times since 1939 — or once every 3-4 years in that time — and twice in just the last four years alone. And I’m only talking about the one relevant Section of the Act referenced by the bill, not the entire Act which for all anyone knows has had countless further amendments.
So there’s clearly nothing “holy” about this Act that it shouldn’t be amended given that massive precedent. I make this point for any devil’s advocates who might view the bill as somehow… you know, “burdensome”.
A small change, but the payoff will be huge for millions of Americans if it can be realised.
Done and shared!
Done. It will be interesting to see if Bob Dold has anything to say about it.
Done!
Corn should be added to the gluten reporting. So many huge allergic reactions to corn and its becoming as widespread as gluten.
I sent my letter to my representative. Thank you for bringing this to our attention. This has long been a serious concern of mine, particularly after taking a medication during my second pregnancy for morning sickness that I was assured was gluten-free that I later found out was not. Unfortunately, I didn’t find out until *years* after the fact. I wondered the whole pregnancy why I was so incredibly sick and this medication wasn’t working at all for me. I ended up losing a tremendous amount of weight and spending almost half the pregnancy on bedrest. It was absolutely miserable. People who haven’t coped with this issue really have no idea that havoc that it can wreak; I hope that we can bring enough attention to this bill to see it passed this time around.
I have been hearing a lot about this Trade Deal called the TPP or Trans Pacific Partnership that Obama and the Republican Congress favor. However it is a bad trade deal that will not only affect the internet, affordable Generic Drugs, but as well food labeling and that includes Gluten Free. This is from the Huffington Post on the TPP how-obamas-trade-deal-might-stir-your-dinner-113697 According to the trade deal, which is expected to come to the House and Senate floor February and Congress has agreed to NO AMENDMENTS and simple majority passage VIA a Fast Track bill that passed in July, and this treaty will involve international courts known as investor dispute and could end labeling for organic, GMO and Gluten Free. Please let me know any information on this treaty Gluten Dude and whether it will affect Gluten Free. I recently have been diagnosed with Celiac Disease and I am afraid this trade treaty called the TPP will affect Gluten Free labeling. Thank you
Sorry here is the webpage http://www.wbez.org/news/how-obamas-trade-deal-might-stir-your-dinner-113697
Agreed and done. The medications that we take to heal shouldn’t be the things that endanger our health. Full disclosure of gluten in meds is a medical necessity for me and so many others, and the ignorance surrounding this topic is sad. Rep. Lowery’s comment is precisely on point.
That should be Rep. Lowey, I mean. Apologies to her for the typo!
Here is the govtrack link that everyone can use to track the bills progress. You can also sign up for e-mail updates.
https://www.govtrack.us/congress/bills/114/hr3648#
I have created a petition on whitehouse.gov. Here’s the link: http://wh.gov/iytxN or https://petitions.whitehouse.gov//petition/pass-gluten-medicine-disclosure-act-hr-3648-so-people-celiac-disease-can-check-if-medicine-safe
Please share! It needs 100,000 signatures.
It is hard to believe that we are still at a point where gluten doesn’t have to be listed on medications. Last month I had a bad case of bronchitis that the doctor said was starting to get into my lungs and may develop into pneumonia. It took me over 10 hours to fill the two prescriptions I got at 9:00 in the morning. My husband headed to the pharmacy around 7:00pm because we were still waiting to hear about gluten free status and he was going to bring them back regardless of whether they had heard back from the manufacturer because my chest was hurting so much at that point I was willing to risk gluten in the meds. Even after waiting the entire day and getting the best the pharmacist could tell us was she was pretty sure neither contained gluten. I had requested the doctor write them for name brand but he didn’t think I would be able to find name brand and said many medications are only available as generics. It really should be easier to get safe medications.
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shoot, I wish I’d seen this sooner! are there any updates as to what happened?
Just what was expected…nothing.
Well, we will have to mobilize and try again! Good things take time as they say! I just met a few of my legislatures, maybe I can have a chat with one or three of them and see how we can get this ball rolling.
Hope you are taking good care of yourself.
Hugz,