Gluten in Medicine Disclosure Bill Hits the Senate

8 hours ago, Guest Sounds good! said:

But...

There is a very big push (and I'm not getting political here) from current Democrat candidates for allowing non-US pharmaceuticals into the US. Since most of the rest of the world, particularly where socialized healthcare is the norm, does not have the same requirements US labelers do, would such legislation be all that effective? Seems this would require US pharmas who import all classes of pharmaceuticals to sample every batch they receive to ensure proper labeling. OR, a simple statement saying something like "This has not been tested to US standards for gluten ingredients or contamination."

In my case I had to import the gluten- and lactosefree medicine from the US to the Netherlands!  No lactosefree Plaquenil for sale here. But the same problem here: no mention of any gluten or lactose contents. You have to read the ingredients and make a complete study of what is: glucose-fructose syrup, maltodextrin, dextrose and so on. It also differs from where it was made: in the US they make maltodextrin from corn, in Europe from wheat! So even now, when I want to buy a Dutch glutenfree bread, it still contains the bad maltodextrin and I get sick! So I have to buy ther German brand from Schär, which is really glutenfree, but not as tasty as the Dutch brand.

I hope this helps... I’ve been using this (below) website with much success over the past 7 years. The pharmaceutical companies are required to provide the most up to date ingredient list to the government and I’ve found it to be more helpful than the drug inserts provided to the pharmacies. Here’s how I do it.. when a medication has been called in by my physician, I call the pharmacist to get the NCD number for the prescription. Then I plug in the NCD number into the search bar on the website and it brings up the ingredients that were provided to the government for all pills manufactured under that NCD number. The starches are sourced  99% of the time, will say potato corn wheat etc. If your medication does have gluten in it, you can go back to the search bar and look for your prescription by it’s generic name and find a manufacturer who makes it without gluten. My pharmacy has ordered another manufacturer’s medication at my request. 

Using this, I’ve only gotten sick once over the past 7 years from my meds and it was a super small shady manufacturer I’ve never heard of with a single phone number and a vague voicemail. 

I can’t say it’s perfect because the pharmaceutical companies have to play their part in providing up to date ingredients every time one changes in their “recipe”. Contamination is another major hurdle but when you find yourself in need of medication, this is better than having nothing to go on.
 

That said, I really hope this new bill goes somewhere. Talk about one way to reduce healthcare costs... celiac disease is the only autoimmune disease where we know exactly what causes an attack and how to stop it. But we need basic tools to help ourselves stay healthy and prevent the onset of additional AI diseases, cancers, health issues, etc. 

For now, here’s the website:

Open Original Shared Link

I have recently been diagnosed with celiac. I also have ra and fibromyalgia. I have had several complications with meds . Did my first infusion for ra . Told them I would refuse if any chance of gluten. So far so good. But the thought of it going into my blood makes me really nervous about doing them . My belly is swollen. 

1 hour ago, Guest Debz said:

I have recently been diagnosed with celiac. I also have ra and fibromyalgia. I have had several complications with meds . Did my first infusion for ra . Told them I would refuse if any chance of gluten. So far so good. But the thought of it going into my blood makes me really nervous about doing them . My belly is swollen. 

Gluten is not found in IV drugs.  If gluten is in drugs, it is usually is an inactive ingredient to bind the medication into a pill.   I never worry about injections and IVs triggering my celiac disease.

Anyone can have an allergic reaction to a drug or experience side effects.  Talk to your doctor about these risks and how they might effect you.  

I continued to be sick for 14 months post diagnosis (with a swollen belly) and during that time I feared everything so I understand how you feel right now. Just know that you will get better so hang in there. I received IV iron therapy and learned that gluten isn’t to be feared in your IV meds. You won’t find gluten in those medications but in addition to that, gluten must go through your small intestine in order for your immune system to recognize the “invader” and provoke an attack. You may want to ask your doctor to check you for SIBO. It’s pretty common in newly diagnosed and for me the symptoms are identical to gluten ingestion. (I say ‘are’ because it tends to come back.)

Good luck to you. Just remember that you will get better!! It takes time and a very clean diet free of cross contamination. 

What is the state of this bill now?

It hasn't gone anywhere yet, but we'll report on this should anything change.

5 hours ago, Scott Adams said:

It hasn't gone anywhere yet, but we'll report on this should anything change.

Thanks for your response.  So, does it make sense to be sending emails and signing petitions now?  Is it still in the running?  If so, I'd like to help publicize it.

The links in the article still work. When checking the status It says:

Quote

LAST ACTION: 12/11/2019 Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
Action By: Senate

To me it looks dead...most likely killed by the drug industry.

What is the status of this bill?

On 1/31/2020 at 4:10 AM, Guest Dawn D said:

Lactose needs to be added to this bill - it’s a very commonMy used filler.

I totally agree!