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
      131,929
    • Most Online (within 30 mins)
      7,748
    Mike Rowicki
    Newest Member
    Mike Rowicki
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • lehum
      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

      By lehum · Posted

      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      Is this celiac?

      By Hmart · Posted

      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Is this celiac?

      By trents · Posted

      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      I have a lot to learn!  Thank you
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
×
×
  • 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.