Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I'm Stunned....and I'm Angry!

Morrisun

Recommended Posts

Morrisun Newbie
Morrisun
Posted

Wow! I have just had one of the worst customer service experiences EVER!!!!

I called Purepac Pharmaceuticals (part of Actavis) to verify if their Spironolactone is gluten free or not. First I was told I would have to leave a message and wait for someone to call me back. So the lady transferred me and low and behold someone answered the phone. It was their medical safety department.

I said that I was calling to verify if one of their products was gluten free. And the lady said what medication, so I said Spironolactone. Immediately she says "We can't tell you if it's gluten free or not because we don't test for that. I said "You can't tell me what ingredients are in the medication?" And she said with attitude like I was totally putting her out "I can tell you what ingredients are in there but I can't tell you it's gluten free because we don't test for that." I said starting to get irritated, "Okay, well what ingredients are in there?" And she lets out this HUGE sigh ('cause you know god forbid I ask her to help me) and she goes "what's your name and number and I'll have someone call you." I gave her my name and number and she HUNG UP ON ME!!!!!!!!! Can you freaking believe that???!?!

Seriously, I don't get pissed off very easily, but this just totally pissed me off. First off I think it's ridiculous that we have to jump through enormous hoops just to find out if medications are gluten free. I don't take meds for fun, I take them because I HAVE to. I wish I didn't have to! I'm irritated that the drug companies make it so difficult, and that pharmacists can't tell us. In my opinion (and I'm NOT blaming the pharmacists) that should be something that they should be able to see just by looking on the bottle, or whatever. If you can tell a drugs interactions, why can they not just as easily list the ingredients or list it as gluten-free or not?? I can find out if my spaghetti sauce is gluten-free, but not my medication. There is something seriously wrong with that!!!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ptkds Community Regular
ptkds
Posted

You should call them back and speak to a manager/supervisor, or email their complaint department if they have one.

I totally agree with you about the fact that it is easier for us to ensure our food is safe, but medicine is nearly impossible to check out!

Judyin Philly Enthusiast
Judyin Philly
Posted

Hi

My pharmacists at CVS are just wonderful to me.

THEY call and get the info as they are the only ones that seem to be able to get THROUGH ALL THE IDIOTS :ph34r: WHO ARE PAID TO DO CUSTOMER SERVICE.

They are calling one for me now............ i can't have gluten, soy, lactose, casein or tapiaco.......

Maybe you can find a pharmacy that will accomidate your needs.

Judy

kenlove Rising Star
kenlove
Posted

I dont blame you at all for being upset, I dont think I would have handled it as well. The older I get the more I loose my cool with these types of idiots and with the system that creates them and the problems we try to solve.

Not knowing if a medicine is gluten-free is crazy-- my doctor always says to ask the pharmacy and of course they always say to ask the doctor.

We know where prepared food is from but here we dont know where fresh produce come from. It amazes me that we know what country our shirts, shoes, pants dvd players, tvs etc are from but not where fresh garlic, ginger, peppers etc come from. At least here in Hawaii we have no idea.

ken

Wow! I have just had one of the worst customer service experiences EVER!!!!

I called Purepac Pharmaceuticals (part of Actavis) to verify if their Spironolactone is gluten free or not. First I was told I would have to leave a message and wait for someone to call me back. So the lady transferred me and low and behold someone answered the phone. It was their medical safety department.

I said that I was calling to verify if one of their products was gluten free. And the lady said what medication, so I said Spironolactone. Immediately she says "We can't tell you if it's gluten free or not because we don't test for that. I said "You can't tell me what ingredients are in the medication?" And she said with attitude like I was totally putting her out "I can tell you what ingredients are in there but I can't tell you it's gluten free because we don't test for that." I said starting to get irritated, "Okay, well what ingredients are in there?" And she lets out this HUGE sigh ('cause you know god forbid I ask her to help me) and she goes "what's your name and number and I'll have someone call you." I gave her my name and number and she HUNG UP ON ME!!!!!!!!! Can you freaking believe that???!?!

Seriously, I don't get pissed off very easily, but this just totally pissed me off. First off I think it's ridiculous that we have to jump through enormous hoops just to find out if medications are gluten free. I don't take meds for fun, I take them because I HAVE to. I wish I didn't have to! I'm irritated that the drug companies make it so difficult, and that pharmacists can't tell us. In my opinion (and I'm NOT blaming the pharmacists) that should be something that they should be able to see just by looking on the bottle, or whatever. If you can tell a drugs interactions, why can they not just as easily list the ingredients or list it as gluten-free or not?? I can find out if my spaghetti sauce is gluten-free, but not my medication. There is something seriously wrong with that!!!!

missy'smom Collaborator
missy'smom
Posted

I totally understand. Just yesterday I had to figure out for myself if the prescription I was given was gluten-free and I know that probably everyone out there has been through this at one time or another. It NEEDS to be changed!

sickchick Community Regular
sickchick
Posted

Ah! I would be so mad....

:o

Morrisun Newbie
Morrisun
Posted
  • Author

I've written a letter to their HQ, I do better expressing myself if I write it down. I've also written a letter to my Senator. I'm not expecting much to come from either but we'll see. It all started with the Cipro thread. I just think it's completely insane that it is this difficult to find out!

I still haven't heard back from them and I'm not thinking that I will. I also called Mylan and Watson. Mylan was absolutely wonderful and Watson was good too.

I'm pretty sure that the medication I was calling about is gluten-free because I never have noticed any problem with it, but since Dec. 1st I've been super super careful about my diet and I want to be certain.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
I've written a letter to their HQ, I do better expressing myself if I write it down. I've also written a letter to my Senator. I'm not expecting much to come from either but we'll see. It all started with the Cipro thread. I just think it's completely insane that it is this difficult to find out!

I still haven't heard back from them and I'm not thinking that I will. I also called Mylan and Watson. Mylan was absolutely wonderful and Watson was good too.

I'm pretty sure that the medication I was calling about is gluten-free because I never have noticed any problem with it, but since Dec. 1st I've been super super careful about my diet and I want to be certain.

I might think about sending copies of those letters to the FDA and the AMA also. If we all write to the heads of these organizations maybe someday something will be done. They need to understand these meds can be not just inconvient for us but also very dangerous to our physical and mental health.

Nyxie63 Apprentice
Nyxie63
Posted

There's absolutely no excuse for behavior like that. Did you get her name?

In the meantime, here's a website that I've found handy for looking up ingredients for various meds.

Open Original Shared Link

Hope it helps.

kenlove Rising Star
kenlove
Posted

great Idea!

I might think about sending copies of those letters to the FDA and the AMA also. If we all write to the heads of these organizations maybe someday something will be done. They need to understand these meds can be not just inconvient for us but also very dangerous to our physical and mental health.
Morrisun Newbie
Morrisun
Posted
  • Author

I didn't get her name unfortunately. I seriously just wasn't expecting to be treated like that. I will probably send a copy to the FDA, and the AMA, good idea! I did find out that the brand name is gluten-free so I asked my Dr. to write me a new script for brand only. At this point I don't care if their medication is gluten-free or not, they're not getting any more of my money!

Morrisun Newbie
Morrisun
Posted
  • Author

I finally heard back from Actavis regarding Spironolactone. He said that it contains malt dextrose, and I don't know if he meant to say maltodextrin because he then said he could not tell where it came from, the US (corn based) or Europe (possibly wheat based).

What would you guys do? I've decided to go with the brand name because I know that it is gluten-free. It's a huge headache though, I've had to fight with my insurance to cover it.

home-based-mom Contributor
home-based-mom
Posted
I finally heard back from Actavis regarding Spironolactone. He said that it contains malt dextrose, and I don't know if he meant to say maltodextrin because he then said he could not tell where it came from, the US (corn based) or Europe (possibly wheat based).

What would you guys do? I've decided to go with the brand name because I know that it is gluten-free. It's a huge headache though, I've had to fight with my insurance to cover it.

I would go with the brand name also. I detest fighting with the insurance companies over anything because they seem immune to reason and logic even if it happens to be cost-effective, but you could try pointing out to them that if they want to insist on generics, then they will have to mandate that generics be totally free of allergens. They control the purse strings and they have the power to make it happen if they want to, whether they will admit it or not.

There is no point in taking medication that will make you sicker. :blink:

Morrisun Newbie
Morrisun
Posted
  • Author

You're right. I told the lady at the insurance company that I either get it gluten-free, or I don't take it at all. It's for PCOS, and it's not a medicine that will cause me to die if I don't take it, but still. I was surprised that Express Scripts was actually really good about it and told me it wouldn't be a problem at all if my Dr. did them mail order and just stated, allergies needs brand. He said if I wanted to get them retail my Dr. would have to write a letter. I would rather get my meds through mail order anyway, so we'll see.

I did end up writing a letter to the AMA, FDA and the APhA. Not expecting much, but maybe I'll be pleasantly surprised.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,561
    • Most Online (within 30 mins)
      7,748
    lamps
    Newest Member
    lamps
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • petitojou
      How long does it take to gain weight?

      By petitojou · Posted

      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      How long does it take to gain weight?

      By petitojou · Posted

      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      Roommate search

      By ckeyser88 · Posted

      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.