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81 Comments

  1. 1

    Ivan

    That sounds like a pain; in fairness to the chemist, they’ve got to have a line somewhere. Now, they choose to draw the line using http://www.glutenfreedrugs.com and that’s the nub of the problem. If they ‘tolerate’ you (and you understand my use of ‘tolerate’ here, right?) AND OTHER COELIACS taking an a la carte approach to gluten free drugs – in their eyes – then they leave themselves more open to people taking chances about what they should and shouldn’t take. My girlfriend has a penicillin allergy. Once granule of it and she’s toast, apparently. Now, our local chemist screens the drugs for her and she won’t go within an asses roar of something the chemist hasn’t vetted. It’s that simple.

    Replace gluten with penicillin and you’ll see what i’m getting at; either you’re in the screening system or you’re not. It’s harsh. The method/list that CVS use, needs to change. Their policy isn’t, of itself, unsound, but I get your irritability.

    Reply
    1. 1.1

      Kyle

      While I understand your comparison of penicillin to gluten, I don’t think you understand the underlying differences and how that argument doesn’t even make sense. One is, for the most part, is a primary ingredient that people are taking when they’re prescribed a medicine and the other, again for the most part, is use to bind together the ingredients. Penicillin is a lab developed and tested medicine with a heavy amount of regulation behind it’s use. Gluten, however, is not well regulated (especially when used in medicine) and comes in many different forms. In some instances, drugs are mistakenly identified as containing gluten when maltodextrin is listed as an ingredient, even though it can also be made using corn.

      The biggest issue here, is that there isn’t an FDA, or any governmental agency for that matter, list of what is and isn’t gluten free. I’m willing to bet there’s more than a handful of sites and lists pertaining to penicillin. The fact that pharmacies have to rely on information from a “.com” to determine what medicine is and isn’t clear is a travesty. The policy is, in fact, unsound because the basis on which they determine what is and isn’t gluten-free is unsound.

      You can’t logically say “A house is sturdy, even though the foundation is crumbling,” it doesn’t work like that.

      Reply
      1. 1.1.1

        Ivan

        And that’s why I say their methodology – getting info from a dot com site – is flawed. The policy – having a list – isn’t.

        I think we agree more than you think!

        Reply
  2. 2

    Allison

    I go to CVS because they are the only pharmacy near my house with decent hours that contracts with the insurance I get through my work – basically because I have to. They won’t even get to a point of checking gluten OR lactose for me, and the one pharmacist there who actually took the time to look up ingredients for me no longer works there. When I was sick last month and needed three prescriptions I was out of it and feeling awful and the pharm was completely short with me and said she “has no way to find out if anything has gluten in it”. Like, if this is the legal issue for them that it appears to be (in your situation and mine), I wish they’d just say so. No need to be a bitch. If it weren’t for Steve at the gluten free drugs site (who happens to live in my city and has even helped me by phone in the past, he is amazing), we’d all be so screwed, and it sucks. Sorry you’re dealing with this too.

    Reply
  3. 3

    Katherine

    That sucks. I hate CVS, every one of them that I have been to. And I really like my local Walgreens. But wherever I go, I say that, before I actually fill the prescription (if new) or purchase the medication (if maintenance), I need to see the ingredients list. They are always able and willing to produce a list. While celiac, I also have a bigger problem with dairy, even the miniscule amounts in meds. Requesting (and in some cases at other pharmacies being a complete bitch about it) that list has saved me mega troubles. If they won’t give me a list, I take my script and go elsewhere.

    Walgreens was wonderful to me after surgery a few years ago. I told the doc who was prescribing pain meds no wheat-derived and no dairy ingredients in the meds prescribed. He gave me a look and wrote down a script. Doped up still post-surgery, I walked into the pharmacy with my best friend to fill it. I had the sense to say no dairy. The pharmacist said that what I’d been prescribed and everything similar contained lactose. He said only Tylenol 3 did not and told my friend to call the nurse at the hospital to request a new script.

    Reply
  4. 4

    Hap

    At least you, Bruce and Clarence made my day & gave me the “happy feet” for at least until Thursday! What a performance!!

    Reply
    1. 4.1

      Gluten Dude

      The E Street at its finest.

      Reply
  5. 5

    Shana

    I’m in awe that your CVS was helpful for as long as they were. At my Walgreen’s, they’ll pull out the ingredient list, if they have it, and let me look. Of course I can’t pronounce most of the ingredients, let alone know whether they mean gluten or lactose. Count me in for pushing for medication labeling laws!

    Reply
  6. 6

    Musicmidget

    I’m floored. It’s got to be a legal thing. It has to be. That’s all that makes sense. Maybe they could call the manufacturer directly to clear it up? If the manufacturer could document the ingredients for them, maybe…..I dunno. Maybe it’s just time to switch pharmacies.

    If you need any help from us non-blogger folks in the community with the drug labeling law, I’d love to be a part of it. A high school classmate of mine was just elected to the House of Representatives in Tennessee. I could reach out to him once there’s an organized effort. Just a thought. :)

    Reply
  7. 7

    Sheena @ Tea and Biscuits

    I’m actually surprised that they were helpful at all in the first instance, but their response the second time around was singularly unhelpful given that they were doing exactly the same thing that you were which was to look it up on the interwebs, just in different places, it’s not like they had exclusive access to some magic FBI gluten free drug database or anything!
    I’ve never had any success with pharmacies and them knowing whether meds were GF and there are two Celiac’s in our house, I tend to do as you did and check it myself as I don’t really trust them to know what’s GF and what’s not. That said I’ve never been treated as poorly as you have in any pharmacy, that’s terrible and I hope you’ll take your business elsewhere :)

    Reply
    1. 7.1

      DD

      Yeah…if they really aren’t “checking” anyway (looking something up on the web? Really?), I’m not sure you’re any the worse off as far as that service goes. But could wiping your record of celiac have unintended consequences down the road?

      Reply
  8. 8

    Laura

    My Walgreens won’t even look up ingredients for me. The last time I tried, they gave me a paper that pretty much was a “CYA” for Walgreens. I left and went to my Publix where the pharmacist spent more than half an hour calling manufacturers to make sure the medication for my daughter was gluten free.

    Reply
  9. 9

    T. Markley

    I’m really surprised to read this. My CVS, and every one of their pharmacists have always gone above and beyond to find out if my medications are safe. They have even been the ones to spend an hour on hold with the manufacturers to verify for certain. I don’t know if things will change, or if they already have and I just haven’t experienced it yet, but I really hope not. It takes a long time to find a pharmacy you can trust. At least it did for me. Especially when you’re so sick and vulnerable. I always do my own research, even with the help of my CVS, but gosh, this is really sad.

    Reply
  10. 10

    Kristina

    I have not found one pharmacy actually willing to check for me, nor would I trust them too. Most of the time they are outright rude about it, one pharmacist telling me the small amount wouldn’t matter and then grilled me on my reaction. In the world of generics, compounds and manufacturers change frequently. Before I fill anything I find out what brand generics they have for that medication and then call the companies myself. Much safer and sets my mind at ease.

    Reply
  11. 11

    Julia

    I don’t rely on the gf website…maybe I’m paranoid, but I don’t know how often the list is updated. I just call the drug manufacturer the same way I call a food company and ask them directly. Let’s all do that and maybe it will bug them enough to do something about the labeling! (Of course my method doesn’t work in evenings or weekends and Murphy’s Law says that’s when you’ll need the prescription. Ugh!)

    Reply
  12. 12

    T. Markley

    I guess there was a cutoff for number of characters because it didn’t post the last part of my comment. I wanted to tell you that meditating is a great tool for celiac sufferers, and anyone with chronic pain or illness. Just stick to the “science” of it, in my opinion and forget about the woo-woo stuff that you find out there. Focus on how you’re breathing. Be mindful of your thoughts and emotions, actually let yourself feel them. Capture negative thoughts and toss them out. Replace them with a positive thought as soon as you can. Be grateful for every good thing, big or small, etc. It actually helped me to get off of an anxiety med a couple years after I was diagnosed with celiac disease. Best of luck and many blessings to you and your family, Mr. Dude. ☺

    Reply
  13. 13

    Ilene

    Wow….how ridiculous and unprofessional of CVS — at least that’s my opinion. I avoid gluten by choice because it aggravates my arthritis. But I am also lactose intolerant. I check the label of every med, vitamin, supplement, and if it doesn’t say it on the package, I call the company. Did not even know there was a website to check on, so thank you for that info. Hope you’re feeling better.

    Reply
  14. 14

    Anne

    In 16 years of being dxd celiac, I have never found a pharmacist who would research the gluten issue to my satisfaction. If they call the manufacturer I don’t trust their rehash of the answer so I research it myself. Now that I am Medicare age, it seems they care even less. And doctors don’t seem to understand why I don’t want to take drugs!

    Reply
  15. 15

    Sally

    I’m sorry, what an awful experience. I have been to two CVS near me, and both call the manufacturers to find GF info. In fact, one pharmacist actually told me that although they can use this list, he knows there’s a lot more to it, that companies change their sourcing and formulas all the time, and he would be happy to call as well on any OTC vitamins or meds I pick up in the store.
    (This is the CVS I go back to every time now)

    Reply
  16. 16

    Pamela Wahl

    CVS pharmacy has gone into the toilet and flushed itself down the drain. When I was first diagnosed in the late 90s they were still a compound pharmacy and were willing to literally make safe meds for me. As the years have progressed they did a complete 180 and don’t even call a damn manufacturer. They even lied about it to my face and glutened me with a drug for 2 solid years. So my symptoms for Celiac had come back, and the migraines were unbearable. My doctor and I spent a year trying to find the cause, and it turned out the be the meds. They’ve since fired the pharmacist who I had at my local CVS and now, same thing with gluten dude, they won’t even acknowledge Celiac. I was furious but didn’t want to deal with this problem anymore, so now I stick with Target pharmacy. Every pharmacist there either checks that online list, or will get on the phone with the manufacturer to double check.

    Apparently the key is to ALWAYS get the prescribing doctor to write “CELIAC: MUST BE GLUTEN FREE” right on the Rx script. But even that won’t work at CVS. I pray for the day we get pharmaceutical labeling laws.

    Reply
  17. 17

    SuzB

    I teach meditation online on a sliding scale donation basis using Google Hangouts.

    If anyone wants to start a weekly group, let me know!

    Also, I have NEVER had a pharmacist even read the dispense as written notes, and even a compounding pharmacy messed me up with the capsules they use. :P

    Reply
  18. 18

    Lauren

    CVS can suck it! They told me they were “too busy” to check if my meds were GF after my diagnosis. I have not spent a penny there since!

    We need to work for labeling laws!

    Reply
  19. 19

    Catherine

    I’m pretty sure they have a god complex. They are the same drugstore chain that decided they wouldn’t sell cigarettes anymore because they are “all about promoting health”. Is smoking bad for you? Sure. But it’s about personal choice. If you do your research and wanna take a medication, you should be able to. If you want to buy cigarettes, go ahead. If they don’t want to sell cigarettes, that’s their choice and that’s fine, but it seems more about patronizing control when combined with your story. “CVS, Foulkes said, sees its future as an alternative to the doctor’s office. There are 26,000 pharmacists and nurse practitioners counseling customers about how to control their high cholesterol, diabetes and high blood pressure.” http://www.usatoday.com/story/news/nation/2014/02/05/cvs-will-no-longer-sell-tobacco-products/5207853/

    See? They know more than you. And want to play doctor, not just supplier.

    Reply
    1. 19.1

      SuzB

      It’s not a bad business strategy. It is a disruptive innovation in a time when healthcare spending is going up and there is a population bubble of boomers at an age where they need increasing amounts of care. They are motivated by reducing their costs, and the drug stores want to fill that need.

      That said, I agree that no one needs the lecture! :)

      Reply
      1. 19.1.1

        Catherine

        Like I said, it’s their business and they can do whatever they want for whatever reasons as far as I’m concerned. But they do seem to be coming from the “we know better than you” crowd.

        Reply
  20. 20

    Small Adventures Big Life

    Have you heard of 4-7-8 breathing? Inhale through your nose for 4 counts. Hold the breath for 7 counts. Exhale out of your mouth for 8 counts. Do this 4 times. Another great breathing technique is alternate nostril breathing. You can Google it. I usually start my meditation with one of these techniques. It gives me something to focus on outside of my thoughts. It also helps me calm down and relax. If I am having trouble “not thinking” I just continue to focus on the 4-7-8 breathing or alternate nostril breathing. Let me know if you try it!

    Reply
    1. 20.1

      SuzB

      This breathing will influence your stress/calm levels by telling the amygdala that you are not in any immediate danger as well as starting a virtuous stress hormone circle going.

      Breath is a great neuro-self-hack. However, a word of caution – this breathing technique you’ve described can change the oxygen levels in your blood leading to dizziness and other issues. My suggestion is to go carefully, be seated, and stop if you feel lightheaded. :) I use a similar exercise in my class in weeks 5 or 6, once we are really settled in.

      Reply
    2. 20.2

      Gluten Dude

      Funny…I just read about that 2 days ago and have been using it at bedtime. Sometimes I forget to exhale and I fall right asleep ;)

      Reply
      1. 20.2.1

        Betsy in Michigan

        So here’s the place to share that since I started taking yoga 3x a week last fall (instead of twice), I find that whenever I can’t fall asleep, or wake up in the middle of the night, I just pretend I’m in final yoga relaxation (shavasana or somesuch) and I’m out like a light!

        Reply
  21. 21

    Becky

    My local CVS will not even check for gluten in the first place. They told me that was up to me. If it was up to me, I wouldn’t get my drugs there but sometimes I have no choice. As far as glutenfreedrugs.com goes – I’ve emailed him a couple of times about a drug not listed and he gets back to me sometimes within minutes. Maybe if you get that drug listed, it could solve your problem. But what an astounding situation!

    Reply
  22. 22

    Toni

    ive heard great things about Costco pharmacists.

    Reply
  23. 23

    Monica

    I hate CVS but because tricare and Walgreens have been in a pricing dispute for the last few years, I’m kind of stuck if I want decent hours. Mine refuses to check any of my meds at all. They are rude and obnoxious all the time.

    Reply
    1. 23.1

      Thetxlady

      Tricare has an amazing online ship to your door pharmacy, mom has been on it several years & is the only reason she stays in stock most time (they auto ship). Will call & ask companies name. Thank you for your service

      Reply
      1. 23.1.1

        Gluten Dude

        Please do…thanks. And let me know if they ship illegal drugs as well. ;)

        Reply
  24. 24

    Emily J

    Walgreens is similar. The head pharmacist told me it was not his responsibility to check for gluten in my medications. I now go to a small town pharmacy that takes FOREVER to fill prescriptions, but has never even frowned when I’ve asked about gluten content let alone told me to find out myself.

    Reply
  25. 25

    Amy

    Count me in to help with labeling laws.

    As for the doctor writing indications on the script, be wary. The doctor can write it, but both the pharmacy and the pharmacy benefit management (PBM) company that is contracted by your insurer are in the middle. The PBM controls which drugs are reimbursed for your benefit plan, and on which ‘tier’ they live, controlling your copayment and coinsurance amounts. So you have at least two levels of corporate policies focused on cost in between you and your doctor. And whether or not the insurance company and/or the PBM can or would acknowledge a celiac diagnosis, and its implications for your prescription, is pretty much unknown.

    Reply
  26. 26

    Penny

    Target pharmacy calls each manufacturer for me prior to filling a prescription! I may just be lucky and have a pharmacist/staff that rocks but I am hopeful for you!

    Reply
  27. 27

    Cookie's Mom

    I agree with Ivan’s points up there ^^^ about liability, and I get why the pharmacist did what he did. Harsh, yes, but I get it. Could you appeal to the glutenfreedrugs.com people to add the missing meds?

    On the topic of yoga, I feel your distraction. I’ve been meditating regularly(ish) for about two years now, and it’s a huge help from a stress- and inflammation-reducing POV. (If you want to know what it was like the first time I tried yoga, you can read about that un-zen-like experience here: http://cookieschronicles.blogspot.ca/2011/09/how-to-achieve-state-of-deep-relaxation.html. Wouldn’t normally post links to my stuff, but I think you’ll find it amusing.)

    Reply
    1. 27.1

      Cookie's Mom

      Posted the wrong link in any case. Sigh. Can I blame it on gluten? This is the one I meant: http://cookieschronicles.blogspot.ca/2011/07/meditating-mama-i-take-first-step.html

      You can feel free to delete all of this after you’ve seen them.

      I’m going back to bed now….. ;)

      Reply
      1. 27.1.1

        Gluten Dude

        Sweet dreams…

        Reply
  28. 28

    Beth

    That’s ridiculous and unreal. And they are supposed to be “promoting health.” If I were you, I’d sit down and write a nice email to a few CVS executives letting them know they are putting people at risk, and that through your influence in the celiac community, you will be spreading the word about their poor customer service practices.

    Reply
  29. 29

    Michelle ~ My Gluten-free Kitchen

    What a pain! I definitely suggest shopping around for pharmacists more willing to work with you – most likely not part of a big chain like that. The pharmacists at my local grocery store have been AMAZING! Any new meds I get, they check on glutenfreedrugs.com, another website AND they always call the manufacturer to confirm all ingredients. If the manufacturer does the blanket “we don’t test for gluten but these are all of the ingredients” then they’ll write down and have me personally review the ingredient list to confirm OR they’ll find a different manufacturer and get that one in. Further, once we’ve got me on a certain brand, they won’t switch it. They’ll do their best to always order in that one that has already been checked.
    Also, another tip. I’ve found that Steven, the pharmacist that runs glutenfreedrugs.com is super helpful. If there is a medication you’ve been prescribed that isn’t on the list, shoot him an email (glutenfreedrugs@gmail.com) and he’ll get back to you in just a couple days at most. He then adds the info to his site as well.
    Having a good relationship with your pharmacist is I think a valuable part of good medical care. Keep looking until you find one that cares about YOU!

    Reply
  30. 30

    Laura

    I use Fairview specialty pharmacy and the reason why is that they get food allergies and intolerances and they don’t rely on some stupid internet list to see if a drug is safe for me – they actually research and check the ingredients of each and every drug I am on and make sure that no allergens are in the active or inactive ingredients. They know the drug manufacturers and which drugs contain what ingredients. It took me a long time going around in circles with the big box pharmacies before I found Fairview. Every time I call I speak to a person who cares about my needs and understands it is her job to protect me as a patient from fillers that will make me sick. I would forget CVS and Walgreens while you are at it and try to find a pharmacy that has people willing to do their jobs. What CVS did should make the news for medical malpractice. I would report it to FAAN and all the other major allergy organizations. They have power and can work for change and your personal experience is an example of why drug labeling laws are necessary.

    Reply
  31. 31

    Cathy

    I filled several new prescriptions yesterday at CVS. The pharmacist never heard of glutenfreedrugs.com! One of the prescriptions was not on the list (I stood at the pharmacy looking it up on my phone). The pharmacist looked at the ingredient list and declared it GF. When I got home I called the manufacturer and was told they cannot guarantee that it is GF. Unfortunately we need to make these phone calls to protect ourselves.

    Reply
  32. 32

    Gretchen

    Glutenfreedrugs.com has this note on their home page:
    “Congressman Tim Ryan, Ohio (D) and Congresswoman Nita Lowrey, New York (D) are co-sponsoring a bill, Gluten in Medication Indentification Act (HR 4972) in May. This bill will require labeling which will make it easier to identify gluten in pharmaceutical products. Please contact your Congressperson and encourage them to support the bill.”

    Write your congressman and reference HR 4972. You can make it short and sweet, but tell them your opinion.

    Reply
  33. 33

    Cheryl

    Sound to me like they are diagnosing you and practicing medicine without a license. It is not up to them to decide what disease you have or don’t have. Their limit is to dispense medications.

    Reply
  34. 34

    Meagan

    That’s just awful! Could you maybe try a different CVS or some other pharmacy? Reading through the comments, it sounds like the pharmacies all handle gluten free a little different. My CVS has always contacted the manufacturer for me as well as given me the contact info. I’ve gotten to know and trust the pharmacist but always call myself just to be safe. CVS usually gets back to me within a week but they always let me know same day for time sensitive prescriptions like antibiotics. I also check the list you mentioned but I’m not sure how much I can rely on it. One of my prescriptions the pharmacist told me it may or may not be safe depending on which manufacturer they decided to use at the time (my Dr asked for the generic) and that I would have to check every time I got a refill. (I said screw it and paid my ridiculous brand name copay. Not worth the risk).

    Reply
    1. 34.1

      el Hefe

      FDA knows about the generics problem. Also, the mail order problem. Also, the toothpaste and cough syrup problem. Also, the homeopathic drug ‘unintended result’ hilarity.

      Now will the do anything about it?

      Reply
    2. 34.2

      Gluten Dude

      This is precisely why we need the labeling laws…pronto.

      Reply
      1. 34.2.1

        el Hefe

        Please see my email from earlier today

        Reply
  35. 35

    el Hefe

    Wouldn’t it be grand if drug products were all GF? Then the pharmacists could concentrate on dealing oxy.

    Reply
  36. 36

    Kerri

    Wow, I am sorry Dude, maybe it’s time to switch pharmacies! I am lucky that here in my small town my pharmacist will call them directly if it’s not on the list, while I’m sitting there, and even hand me the phone if I have more questions, but I guess that is the advantage of the small town pharmacy. I would love love love, there to be a labeling law for prescriptions, it just makes perfect sense! Not just for us celiacs, but also for those with severe allergies.

    Reply
  37. 37

    Miss Dee Meanor

    This information is easy for a pharmacist to obtain. My daughter is a pharmacist (Doctorate) and has checked on medications for me…especially many of the generics. Once (at CVS ironically) they said they couldn’t tell me if an antibiotic was gluten-free and passed an information sheet from the drug company containing chemical information and diagrams so could look it up. (I was the only customer there at the time.) There was no way I could decipher that sheet unless I was a chemistry savant. I went to the car in tears, called my daughter in frustration, and in less than five minutes she had contacted the company and called me back letting me know it was safe. I went back inside and told the CVS pharmacist that FYI the drug was gluten-free. They smiled and said they would fill the prescription and I just smiled back and told them they had lost my business. It’s a sad day when the customer of someone who is there to look after your health has to check on their own medications in order to remain safe.

    Reply
    1. 37.1

      Gluten Dude

      Welcome to customer service, 21st century style. When every friggin industry is taken over by the conglomerates, they lose that “something” that makes me want to support them. Stepping off my soap box now.

      Reply
  38. 38

    Rachel

    CVS in Dallas refused to check Tamiflu for gluten last year for my then 3 year old who is anaphylactic to wheat and barley. I refused to pay for the meds until I had an answer as to their safety. They made me stand there and make the call on my cell. When I refused to move from the check-out line they closed the register I was at and opened the one next to me. Haven’t been back to CVS since… and never will…

    Reply
  39. 39

    el Hefe

    I stopped going to my local CVS after repeatedly seeing the manager degrade employees. Maybe this crap filters down.

    Reply
  40. 40

    Patty

    I am uncertain today, why noone even mentions an NDC code, or knows how to look up their own medicine other than glutenfreedrugs. I also don’t get why I’ve had to train four pharmacists on the how to… to only get a new one who is clueless. Anyway, there are two databases to look up, one a government one, and one not. You look it up by NDC code to get the specific one, as all drugs are batch oriented, alot like OTC ones, and then you find the prescribing data sheet and review the inactives with a GF Ingredient app. I just posted this in my month or two old, FB group (Gluten Free Groove) as well, when your article made it in as a post a bit ago. This has given me alot more options honestly, and I hope to share it with you. Can I also suggest you put up the bill to sponsor for the medical gluten free ingredients bill that has stalled to get others to actually go and support it easier! Thanks…
    Database 1:
    http://dailymed.nlm.nih.gov/dailymed/index.cfm
    Database 2:
    http://www.rxlist.com/drugs/alpha_a.htm
    I then use the following app, or a few others to review the inactives:
    https://play.google.com/store/apps/details?id=com.applicationstudios.glutenfreeguide
    If all that fails, you still have a shot by getting the pharmacy sheet from the pharmacist for the item itself, the inactives are listed below the chemical symbols, makeup of the drug itself. It that also fails then you call the company, which the phone number for is on that sheet!
    Hope that helps!
    Patty Hicks, Gluten Free group owner at Gluten Free Groove (www.facebook.com/groups/glutenfreegroove)

    Reply
  41. 41

    Donna

    How can someone with power over your health be so complacent? I am so glad to be living in Australia. this is absolutely disgusting how can your pharmacists even call themselves professionals? but I suppose that is just the tip of the iceberg, it all comes back to labelling, the only certain thing you have to rely on is what is on the packaging. aren’t medicines controlled and approved by one government body? why does a pharmacist have to go to a webpage to check out medicine? is there a basic standard for the pharmacy guild? what is going on in America?

    Reply
    1. 41.1

      Gluten Dude

      “What’s going on in America?” Where do I even begin?!

      Reply
      1. 41.1.1
  42. 42

    Deb

    From that website …

    “Updated 12/16/2014

    This website is authored and maintained by a clinical pharmacist as a public service, receiving no compensation whatsoever for providing this information. Information for this website is obtained from a number of sources, including personal contact with the manufacturers and input from other individuals who contact manufacturers. The information is continually updated as it is obtained.

    This site is for informational purposes only. Please note that a reasonable attempt is made to provide accurate information. The webmaster is not responsible for any error contained within. All persons should interpret the information with caution and should seek medical advice when necessary.”

    So, my first question is, why is a pharmacy giving you assurances that they are giving you gluten free drugs when all they are doing is looking at this list? And, my second question is, why aren’t you GLAD you found out that they aren’t actually verifying the gluten status of your medication directly from the manufacturers themselves?? That is the ONLY way to keep yourself updated about medications. I have never had a pharmacy even OFFER to check gluten status of my scripts. They hand me the drug insert and then I tell them whether or not I can buy it, often after I have called the manufacturer to verify gluten status. You should be angry that so many people with Celiac might be given wrong information because someone who is trying to be nice may not have been able to update their list yet some pharmacies are, apparently, using said list as a “go to” for all things gluten free in the drug world.

    I learned a long time ago (15 years now) that if you want to know if something is gluten free, figure it out yourself. Even other Celiac’s can be wrong about gluten status of products, and they are a part of who is giving information to the list at that website. So, be glad you found out how they are checking your drugs for gluten status and start doing it yourself from now on. People need to remember that information being on the internet isn’t a guarantee that said information is 100% fact. Do you know how many people say they are positive something is gf when they don’t even know that “natural flavors” on an ingredient list could mean a gluten containing grain? Do you realize that some people still think that manufacturers must label a product if it contains barley and rye and not just wheat? To be 100% gluten free, you just can’t count on others for your info. There are no real rules to this gluten free game! Half the time, it is a freaking free for all! (Guess the rant part should have gone somewhere else … sorry).

    I am 100% on board with the prescription laws for gluten status, and we all should contact our Congressional representatives to have them support HR 4972 (Gluten in Medication Identification Act), although with the present Congress, it is doubtful that it will get anywhere unless the entire GF community comes together BIG time. I have been fighting for labeling laws in meds for over 12 years. I welcome all additional support.

    Reply
  43. 43

    Ellen

    I can’t stand CVS. CVS/Caremark took over our prescription drug plan a few years ago. And thus began the misery, starting with them denying coverage for a much-needed medication I’d been on for years (without it, I’m pretty much bed-bound).

    They coerce us into getting our prescriptions from CVS pharmacy by making it much more expensive anywhere else. Still, my husband and I only get our most expensive name-brand drugs there. I would NEVER trust them for my generics. In addition to celiac, I have multiple food allergies and am allergic to some inert pharmaceutical ingredients (we’re talking throat and tongue swelling… very sick). Every refill with a new brand or a new prescription feels like Russian Roulette.

    Thankfully, we have a lovely small independent pharmacy near us. They appreciate our business and have never been rude or nasty. They will call manufacturers for me. They will reorder things from different companies if they have to. They really care about keeping me safe and well. In contrast, at CVS I’m lucky if they’ll retrieve the insert from the drug in question and throw it at me over the counter (while looking irritated I’d asked). I’m actually very surprised they were ever that helpful to you.

    In the wider scope of things, it’s always so reassuring when you call a manufacturer and they say they can’t vouch for the ingredients since they don’t really know what they are getting from their suppliers (I’m sure we’ve all heard this one.) It is well beyond time for accurate labeling of our medications.

    Reply
    1. 43.1

      Gluten Dude

      Common theme here: No one likes CVS.

      Reply
  44. 44

    Tyler & Ashlee's Mommy (Kati)

    I dropped CVS a long time ago (although I applaud them for their efforts in not selling cigarettes). I go to Walgreens. The pharmacists are WAY better than their techs, but they at least try…for my daughter with Celiac. Last time the pharmacist went out of his way to check on zythromax for my daughter and then ended up reading me this long rant that Walgreens wanted him to read and then he goes “that’s talking out both ends isn’t it?” and laughed. I still looked it up on the Internet, which is what my 5 year old always says – mommy, is it gluten-free? Check your phone! She’s already got it figured out.

    Reply
  45. 45

    Kim

    Sounds crazy. Doesn’t the pharmacist have a real drug reference book?? They usually do. An old fashioned medical book should list ingredients. Maybe you are better off checking them on your own anyway after dealing with them. Legally can they actually hange your medical record and take Celiac off? Only a doctor should be doing that.

    Reply
  46. 46

    silmeria

    I personally have never liked CVS, most of the ones in my area are craptastic in service across the board. Few other bones I have to pick with this company who calls themselves a wellness center.
    One it was a great idea to ban cigarettes, but yet you sell NRT therapy, when it is own can foster addiction to nicotine. Two they continue to sell alcohol,which can contribute to driving under the influence, and contains sugar that can contribute to obesity. With the mention of sugars, they sell candy and soda’s,that has sugar that a lot of folks are addicted to and promotes obesity. I find their practice with gluten and gluten free product knowledge is inexcusable, Target has under it’s up and up label several medications that are labeled gluten free, so what is cvs’s excuse? I am really irked at how hypocritical that company is. But this post here is the icing on the cake, er no nail in the coffin on why I will not ever enter the doors of a CVS again.

    Reply
  47. 47

    KV

    It never occurred to me that a pharmacy would check to see if a medication was gluten free. When I tell my doctor I need a drug that doesn’t contain gluten, he looks at me like I’m stupid and tells me the pharmacist will know if it’s gluten free or not.

    Then the pharmacist (I go to Walgreens) looks at me like I’m stupid and I end up asking them to write down the name of the medication and the name of the manufacturer (another dirty look) and I call the manufacturer myself before I give them the green light to fill it.

    For the record, my doctor has a copy of my blood tests from three years ago in addition to my biopsy results and the records from my Endoscopy that show I was diagnosed with Celiac Disease at that time. He ignores that and references recent blood work from after I had been completely gluten free for multiple years and makes notes in my records that say things like, “Patient claims to have Celiac Disease even though her test results do not show it.” Last time I told him I needed a gluten free antibiotic, he looked at me like I was stupid and told me my records say I don’t have any allergies.

    I know…find a new doctor. But I assume most doctors are clueless about Celiac and I’m better with the devil I know. My Gastroenterologist isn’t much better. If I tell her about symptoms I’m still having, she just throws drugs at me and rushes me out of her office without bothering to hear me out.

    Reply
  48. 48

    Deanna

    I have had my own HORRIBLE experiences with pharmacies/ pharmacists when trying to verify if meds are gluten free. Mainly, I am told “it’s just too much work to look into this”. So, it always takes me no less than 8 hrs to get my meds verified, and I have even printed off the online resources and provided them directly to the pharmacies. As a nurse, I am so frustrated bc I simply couldn’t ignore this issue for a patient, but why can a pharmacist? I am so ready to take this before congress bc things MUST change!!!

    Reply
    1. 48.1

      DD

      Sounds like a business opportunity to me. Any would-be freelance meds-checkers out there?

      Reply
  49. 49

    jill

    Just to put an extra lament in here. I am currently researching what my night-guard is made of. But another thing I’ve had to grind my teeth about. . . My drugstore- Bartell’s, a small Seattle chain, has a record of me being Celiac, and I asked, “Is this safe for me” every time I filled a new script. However I came across this little article.

    http://www.thyroidpharmacist.com/blog/is-your-medication-gluten-free

    Thyroid disease happens to be rampant among Celiacs. & quite a few of us take thyroid meds. Guess what? Most aren’t gluten free. Mine wasn’t and I was unknowlingly taking gluten for about three years after my Doc’s office was no longer allowed to dispense WestPure Throid. Please read the article and the conversations following, if you are on Thyroid drugs. I hope that my recent Ttg test results of ” 2″ indicates that I am now on the right stuff now. Lannet’s Levothyroxine (generic synthroid) & Liothyroinine sod (generic cytomel .)

    Also, from another article by a pharmacist-

    http://glutenfreeinsd.com/PDFs/PlogstedArticle.pdf there is this.

    “Other common terms include pregelatinized
    starch and sodium starch glycolate. Both products are
    starches derived from corn, wheat, potato, or rice,
    however, they have been chemically treated or
    processed. Despite manipulation, some gluten can
    remain, although it is unlikely.
    There are also the four “Dex-ingredients” derived
    from starch (dextrans, dextrose, dextrates, dextrins).
    Dextrans come from corn and potato starch; dextrose
    comes from corn. These Dex-ingredients are not a problem
    for CD patients. Dextrates and Dextrins can come
    from any starch source so a call to the manufacturer is
    the only way to know if it contains gluten.”

    Reply
    1. 49.1

      Deb

      Yep. Was on Synthroid up until about a year ago. Then found out it could have gluten, after a pharmacist told me it was totally gluten free, by calling the manufacturer. Was told they won’t guarantee no cross contamination. My hands stopped swelling about 3 months after I got off it.

      Reply
    2. 49.2

      Sharon

      Sodium starch glycolate is usually from potato starch. I know this because I react to potato starch and all nightshade foods. It’s even harder to find out if a med has an ingredient derived from potatoes than it is to find out about gluten. “Do potatoes have gluten?” is what I heard from on drug manufacturer. “um, no…”

      Reply
  50. 50

    Pharmacist Steve

    Just remember at CVS their motto is “health is everything” and Walgreen’s is “be well” .. but – IMO – both – mottos have more to do with their bottom line than any individual’s health.. Keep spending your money there and they will continue to cultivate their bottom line while telling you how important your health is to them…

    Reply
  51. 51

    Kayla Naphan

    Last time I had to take to take any form of pill I asked the Loblaws “Drugstore Pharmacy” pharmacist to check for gluten, he asked me to pick it up a bit later so he could look into it. He looked so into when I picked the RX up he said “There is absolutely NO gluten in this prescription, although unfortunately I can’t be 100% sure about the plastic bottle, I apologize.” Have been going there for all prescriptions since!

    Reply
  52. 52

    Mandy from Aus

    I’m Australian and a RN- over here it would be professional negligence for a pharmacist to NOT check a coeliac ‘s medication for gluten. We don’t tolerate that shit.
    I had a patient in my ward who was gluten intolerant- and I had to double check meds before administering them. Myself. If I give someone with an allergy a med containing that allergen- or a celiac gluten- my nursing registration is potentially on the line.
    Doesn’t matter if the doc prescribed them- it’s still my responsibility to administer a safe drug.
    Why aren’t these pharmacists held responsible? Or is it just up to you to sue them? You can’t sue quite so easily here- and we don’t. But our state run health care holds our practitioners totally responsible.

    I could rant on and on- so unprofessional of them.

    Reply
  53. 53

    Lorre Hopkins

    I’m ready to band together!! This is my major pet peeve that these inactive fillers aren’t listed. I also hate it that they feel generics are identical in spite of different fillers. Count me in!! We all need to write to our Congressmen, or get a petition started. This is an area that desperately needs change.

    Reply
  54. 54

    GAJulie

    I did write my Congressman and here is his response:
    Thank you for contacting me to express your approval for the Gluten in Medicine Disclosure Act of 2015 (H.R. 3648). I appreciate your input on this important matter.

    First, I want to congratulate you on the success of your online support group that spreads information about celiac disease, gluten sensitivity, and other gluten-related issues. I understand the importance of a strict gluten-free diet for many Americans and access to gluten-free medicine for someone with Celiac Disease. Although the chance of taking medication containing gluten is incredibly small, it is not a risk that someone with Celiac Disease can afford to take.

    The Food Allergen Labeling Consumer Protection Act of 2004 required food labels to list information concerning the item’s content of wheat and other common allergens. However, no similar requirement exists for medication labels. According to a database managed by the National Institute of Health, more than 70,000 pharmaceutical products or dosage forms containing some form of gluten.

    Pharmacists are perfectly trained and equipped to deal with this issue, undergoing extensive education in the use of drugs, illness prevention, and multi-drug interactions. As medical professionals, part of their job is to educate consumers and patients about the most appropriate treatment options for specific diseases and conditions. Pharmacists are on the frontlines of this issue, and could effectively educate and advise those with Celiac Disease or gluten intolerance about gluten-free medication without needing the federal government to intervene.

    Rep. Tim Ryan introduced the Gluten in Medicine Disclosure Act of 2015 to address difficulties consumers might have in knowing whether there is gluten in certain pharmaceuticals. The Gluten in Medicine Disclosure Act of 2015 would prohibit the sale of pharmaceutical drugs derived from grains or starch-containing ingredients, except a polyol, unless the label contains a statement identifying the source of these ingredients. Rest assured that I will keep your thoughts in mind should this piece of legislation come to a vote on the House floor.

    I am committed to the health of all Americans, and share your desire to protect consumers from unintentionally ingesting allergens in their medications. However, I believe this can be effectively carried out by your local pharmacist and have concerns about this legislation opening the door to the federal government overregulating the ingredients of prescription drugs. You can count on my continued support for those with Celiac Disease as well as those who have gluten-related health issues.

    Again, thank you for sharing your perspective with me. Please continue keeping me informed of the issues that matter to you.

    Sincerely,

    Doug Collins
    Member of Congress

    Unfortunately, my small local pharmacy will only give me the name of company that provides them with their generic drugs that my insurance company will accept. I have to find the phone number and call. Some do not have a phone number listed. Some are in India and I never hear back from them. I plan to call all the pharmacies in my Congressman’s home town and ask if they can tell me if there is gluten in my prescriptions and then list off every drug I take. I will write down their responses and send them to my Congressman and ask him what he suggests now. Any other ideas of how to deal with this? #FRUSTRATED

    Reply
  55. 55

    Jeanne

    Just found this site. My CVS told me they can’t look up my meds because they don’t have internet access. I had to move to the side and look up my meds for them. Perhaps you know about this cold medicine (I haven’t read all the posts), it’s called Scottusin and CVS dye free ibuprofen are safe.

    Reply
  56. 56

    melanie s

    My Walgreens has always told me they couldn’t check. May vary state to state? Regardless…they *always* tell me when I get a new manufacturer for generics and give me the the phone number. I call and check with the manufacturer themselves. Yes, it’s a PITA. But that has worked really well for me. And the pharmacist sat down and worked out a time-table for my many meds (I have lupus and thyroid issues) so I wouldn’t mess up the efficacy of my meds. Spent almost 20 minutes with me.

    I’ve found the GF Drug site to be fairly useless (for me). :/

    Reply
  57. 57

    Cat

    That is crazy! I’m sorry you went through this. I love our local CVS, they are always very kind and have no problem explaining things. No one seems unhappy to be there. Last fall, they saved my daughter’s life. A stupid dentist over prescribed an antibiotic medication to my kid for a tooth infection. I stood there as the dental assistant asked the doctor if she was sure. She said yes. I knew something was wrong but figured, well, if it wasn’t okay they wouldn’t put it through, yeah? I’m no doctor. The CVS refused to fill it. No option. They said it was too high of a dose. They couldn’t reach the dentist office to speak with them. Took my daughter to her PCP the next day and he prescribed the correct dose. I have not needed medication for quite some time, since before my dx, but I will ask them about checking for gluten, see what they say. Thanks for bringing awareness to this very real problem!

    Reply

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