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

Please Stop Hating Pharmacists


sammers1

Recommended Posts

sammers1 Enthusiast

There are many posts on here about how unhelpful people's Pharmacists are. I am a Pharmacist & I am a very helpful one, willing to go the extra mile. When you are getting angry at us for not knowing the gluten status of a med, please know that we have ingredient lists similar to food labels. However, we all know that we can't trust a food JUST by reading the label because of hidden gluten & cc. We are not taught anything about Celiac disease in school so this may be the first time some pharmacists are hearing about it. That is not our fault. We have to call the same manufacturers & talk to the same people you do & they are not any more or less helpful to us. When people come in to get medication, we may have 20 people ahead of them. If a customer needs to know the gluten free status of a med, I would gladly call but I may not be able to call THAT SECOND. I may have to call them back after having the time to call. I am willing to do that. We are under extreme pressure to be like McDonald's & get meds out in minutes but we are more than fast food restaurants. We need to make sure that a med is right for someone, that the doctor didn't make a mistake, that the right drug is going out to the right patient & fight with insurance companies in between. All while the phone rings, patients come in to pick up & some come to ring up their milk at the register. We have an extremely serious job that people minimize when they are in a rush. I'm sure most Pharmacists, given a little time, would be happy to find out what you need to know. We are not given enough help & we work LONG days, some work 14 hours at a time. I can only spea for myself & my colleagues, but we are willing to help. People just need to be a little patient. Don't talk to a cashier, speak to the Pharmacist & don't expect that we have the same knowledge about Celiac as you do. I only know what I know because I am a mothe to a daughter with Celiac. I didn't know anything about it before her diagnosis. That being said, I would never feel comfortable with someone else calling a manufacturer for me if they weren't 100% knowledgeable on gluten & how it can be hidden. We all know it can be & just because it doesn't say wheat doesn't make it gluten free.

I'm sorry for my rant & I hope no one is offended. Awareness about Celiac is increasing but we have a long way to go. The FDA needs to do something, Pharmacists cannot.


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



Celiac.com Sponsor (A8-M):



debmidge Rising Star

Dear Sammers

I understand your frustration and you make an excellent point. As a consumer, what would help me then is the phone number for the manufacturer - I'd be very happy to make my own phone call to their Customer Service line. My Mom used to work for a generic firm and that was part of her job: talking to the consumer directly about the products. Not about how the drug works, but does the presc. contain gluten, animal gelatin, etc. She also would write up the complaints (adverse reactions) and respond to the letters about these issues as the drug company has to report the complaints to the FDA.

Thank you for helping all of us understand better what our pharmacist is up against.

tarnalberry Community Regular

We've had a couple posts about great pharmacists who've been very helpful - whether it was right away or later. But it has happened that we've had a couple of recent posts about pharmacists who've said it's not their job to find out whether or not a drug is gluten free, or that there's no way to find out, end of story.

Kudos to you, and those you know in the field, however, for being more responsible than that! :)

Morrisun Newbie

I have never blamed, nor do I get mad at my Pharmacist. My blame lays entirely on the manufacturer and the obvious need for change regarding a consumers ability to easily determine what is in their medication.

MyMississippi Enthusiast

Sammers1

I totally agree with your post---- the pharmacists is our friend, not our enemy. The drug companies are the ones who need to make this info easily available to their consumers.

The patient should take their complaints to the supplier------ not the dispenser. The poor pharmacists has enough problems without having to be our middleman.

:)

ravenwoodglass Mentor
I have never blamed, nor do I get mad at my Pharmacist. My blame lays entirely on the manufacturer and the obvious need for change regarding a consumers ability to easily determine what is in their medication.

I agree totally with this but my anger is more at the FDA that fails to regulate or require clear labeling on any meds. I have had some great pharmacists and I have had some that were so frustrated by this issue that they took it out on me. I fully understand their frustration as we deal with it every day. I usually ask for the data sheet and call myself when I get home. I have found it helps if the doctor only prescribes name brand not generic drugs, from what I understand they are less risky and many times it seems easier to get a clear answer on them because they always use the same binders.

Morrisun Newbie
I have found it helps if the doctor only prescribes name brand not generic drugs, from what I understand they are less risky and many times it seems easier to get a clear answer on them because they always use the same binders.

I totally agree. I just asked my Dr. to switch one of my meds to brand because the generic manufacturer was so ignorant and rude. Pfizer, had the information right on their website. It shouldn't have to be that way though, you know?


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



Celiac.com Sponsor (A8-M):



wowzer Community Regular

I have a pharmacist that has been very helpful to me since I went gluten free. When I was trying to figure out what I was missing, she checked all the drugs that I was taking. She did have to get back to me. One of the items was an ointment and the manufacturer had told her that it wouldn't matter if it contained gluten because it was an ointment. I was using is in the vaginal area and wanted to make sure it was gluten free. She checked further and did find out that it was gluten free for sure. I have had so many adverse drug reactions that I avoid medication when at all possible.

darlindeb25 Collaborator

First, I would like to address something I just read from Morrisum--please do not put your trust in Pfizer, they lie to their patients. Pfizer's hides facts about gluten and I am surprised you haven;t heard that already, I will never trust Pfizer again. For years they told us that Xanax was gluten free, the last time I checked, it was still on the www.glutenfreedrugs.com list, but, Pfizer now states refuses they ever said it was. I talked personally to one of their pharmacists, after it became public, that Pfizer's Xanax does contain gluten, the pharmacist stated "it always has!" Just as their generic company brand "Greenstone" contains gluten. So, be very careful with Pfizer brands.

Sammers1--I have a pharmacist who has always been very helpful. I never ask him to research a med, I only ask that he give me the generic company name and phone# so I can do the leg work, so to speak--often times, he offers to call, which I feel is very considerate, even though, I prefer to do the calling. My complain, was the CVS pharmacist who was extremely rude to me and stated, very loudly to me that he didn't know what gluten free was, nor did he care. Another time, I had called and asked for an 800# for a generic brand of Celexa and he told me he doesn't have access to 800# and I had to find out for myself, that he doesn't have time to bother with me. Exactly like that. I emailed CVS. That very day I received a phone call from his supervisor and he was very upset. He had spoken to him and advised him that he was not to ever speak to a patient in that manner again. Then he assured me that I would always be treated with the utmost respect by the pharmacist at my local CVS to which I did thank him, but I also added I would never trust the pharmacist to give me the proper info now. I will never trust the pharmicist again. I did go there one more time, for a generic brand of Xanax that was gluten free, that I could not find anywhere else.

I work for a doctor and I know that when patients have questions, we do the leg work, not the doctor. The same goes for you. The pharmicist does not have to give me the 800#, the pharmacy tech can do it just as well, and I would be happy.

I might add, I wish you were my pharmicist!

debmidge Rising Star
I have found it helps if the doctor only prescribes name brand not generic drugs, from what I understand they are less risky and many times it seems easier to get a clear answer on them because they always use the same binders.

and the brand name pharmaceutical companies offices (for phone numbers and websites) are easier to locate than the generics

debmidge Rising Star

Although it just occurred to me that the large pharmacy chains like CVS, Rite Aide etc. should have a toll free number for people to at least check into the prescription or get a phone number from them for the pharmaceutical company at least. That would improve Customer Service.

Joni63 Collaborator
I have found it helps if the doctor only prescribes name brand not generic drugs, from what I understand they are less risky and many times it seems easier to get a clear answer on them [i]because they always use the same binders.

This is not always the case. Bayer Sherring Plow just told me via a phone call that they get their ingredients from different suppliers and can't gaurentee that their Cipro is gluten free. Many large companies bid out to different suppliers for ingredients. The only way to know for sure is to check with the manufacturer every time.

debmidge Rising Star

This is not always the case. Bayer Sherring Plow just told me via a phone call that they get their ingredients from different suppliers and can't gaurentee that their Cipro is gluten free. Many large companies bid out to different suppliers for ingredients. The only way to know for sure is to check with the manufacturer every time.

Oh Rats!!

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. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    2. - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    3. - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

    4. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    5. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

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

    • Total Members
      132,806
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.