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

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

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

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

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

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

Ah! I would be so mad....

:o

Morrisun Newbie

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
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

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

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

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

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
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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Midwesteaglesfan replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Going for upper endoscopy today

    2. - Scott Adams replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Going for upper endoscopy today

    3. - Scott Adams replied to Cecile's topic in Related Issues & Disorders
      4

      Symptoms

    4. - Midwesteaglesfan replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Going for upper endoscopy today

    5. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      My Journey Continues some notes

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,188
    • Most Online (within 30 mins)
      7,748

    TBH
    Newest Member
    TBH
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Midwesteaglesfan
      Her results only showed greater then 100 which over 10 is considered positive.  But American standards still recommend the endoscopy to confirm.  And the Dr explained to us both the European and American standards and asked us what we wanted to do.  We figured since it’s still recommended here, do the endoscopy so Insurance can’t argue anything in the future regarding it
    • Scott Adams
      My daughter also has it, and it's much better to discover it early. What was the positive level for her test? If she has over 10x that level, and you have celiac disease, I'm not sure if a biopsy is necessary to diagnose her. In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children!    
    • Scott Adams
      I forgot to mention that I also had to avoid eggs for a few years after initially going gluten-free, but could eat duck eggs without issues. Fresh duck eggs can often be found in Asian markets (be sure they are fresh eggs, because they sell various kinds of duck eggs that look the same like salted eggs, eggs with embryos inside, etc.), farmer's markets, and I was surprised to see Costco now selling fresh duck eggs.
    • Midwesteaglesfan
      UPDATE:  here I am a couple months past my full diagnosis and going gluten free.  I’ve been feeling a lot better.  More energy, joint pain has gone down a lot.  Haven’t really had the headaches and migraines I’ve had for years.   My daughter(age 17) has had some symptoms which we thought were something else, but with my diagnosis I said,  have the dr test her for celiacs.  Her antibodies came back as greater then 100.  So she is scheduled for her endoscopy and going to be joining me on this journey.
    • xxnonamexx
      I have increased my vitamin intake Vitamin B Complex plus 2 Thiamax, NeuroMag, Benfotiamine with breakfast. I continue reading and watching gluten free items that I eat. Breakfast is Bobs Redmill gluten-free oatmeal with Chobani zero sugar yogurt a banana and blueberries. Lunch since im at a deli gluten-free is hard to come by so I stick with turkey with gluten-free Promise bread. Dinner varies like gluten-free pasta, tacos, chicken, sausage, meat etc. rice or take out from gluten-free places. I have decided to stay away from gluten-free pizza as I feel I felt weird with it unless its store bought frozen. I am going to try to make my own gluten-free bread, Bagels. I have been good with baking gluten-free treats like cookies, muffins. Snacks if its not fruit, veggies I grab a protein bar or chocolate guilty pleasure reeses, hersheys, York PP. I am going to start to use my fitness pal app to track what I eat and note when I feel off to see if I can pinpoint if a trend of a certain gluten-free food is a culprit. I noticed once in a while I feel a little bloated, gassy that I think is from the pizza so I am going to avoid it and continue narrowing it down. I have been doing very well and I have learned even if you think you are doing everything 100% gluten-free eating it can sneak in without you knowing. This year is more traveling which im afraid of but have already looked into gluten-free places in Nashville which they have and back to Aruba I went last year and have the gluten-free places already selected. Most restaurants I have been to have been very helpful with what to stay away from to avoid CC. If a place states they don't have any gluten-free the I stick with a salad or when I took my kids to breakfast as much as I miss the breakfast this place serves I played it safe with yogurt and a fruit bowl so at least my kids were happy to go there again. Local farmers market has great gluten-free items that I treat myself to like different types of breads, baked goods. My journey continues...
×
×
  • 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.