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
      132,140
    • Most Online (within 30 mins)
      7,748
    KP009
    Newest Member
    KP009
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
×
×
  • 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.