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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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KikiB

Finding A Pharmacy And Pharmacist That Will Help

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I'm so frustrated at the process of having prescriptions filled.  It seems like it's all on me to research online (can't always find information), tell the Pharmacy which manufacturer they have to order from.  I have always used Ralph's pharmacy and they couldn't be more clueless about the gluten issue.  When they order from the manufacturer that is not their norm, they turn around and charge me their out of pocket costs over my co-pay.

 

I just spent 45 minutes on the phone with my insurance company -- also completely clueless.  Brought me to tears.

 

Every time I get sick, it takes me almost a week to get a prescription filled.  Even when I was in the hospital in December and they wanted to give me some medication, they didn't know whether or not it was gluten free.

 

Are there any mainstream pharmacies that help people with gluten free prescriptions?  It's certainly not Ralphs.

 

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I have little experience filling prescriptions, but the ones I did have filled it was 'they shouldn't have gluten, but there's no guarantee'. Any pharmacist worth their pay should call the drug company to verify if there's gluten...at the very least the company *should* know if gluten is going to be a purposeful ingredient.

 

}:-(

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I rarely fill any prescriptions but my viewpoint may be different than many.  I feel it is up to us to find out what is gluten-free or not because you cannot rely on people who do not have Celiac Disease to know what questions to ask.

Pharmacists only fill prescriptions and are trained to know what medications have cross reactions with other meds......they know as little about food intolerances as most of the population.  The few times I have needed an antibiotic or anti-viral, I call the company or ask to see the info sheet that comes with all meds to the pharmacy.  With time, you can learn to read the ingredients list and know what is safe.  I have also learned that gluten is not as prevalent as many would have you believe.  When I do fill something, I write down what works for me and then request that anti-biotic the next time I need one but luckily, since going gluten-free, I rarely ever need any meds.  I know this isn't much help to you, but

please don't rely on insurance or pharmacists, unless they have celiac themselves.  You can always post here to see if others know gluten-free status on a medication.

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Pharmacists are very busy people and have a lot of work they are doing, they hardly have time to call every manufacturer for every person who comes in with some special need. I have never once thought that this burden should be on them, for two reasons. The first is that, quite simple, they don't have the time. The second is that unless they also have celiac or a gluten problem they don't know what to ask the manufacturer and will just screw up and make me sick.

 

Here is what I do, and it has never been a problem. I call or go to the pharmacy with my prescription, on paper, do not ever let a doctor fax or phone in a prescription. Then, I ask what manufacturer they would fill it with and for that manufacturer's phone number. (Assuming I don't already have the phone number, I swear sometimes I think half my contacts are pharmaceutical companies! :lol:) I then contact the manufacturer. If the manufacturer assures me it is safe, I fill. If not, I move on to a different pharmacy. There is no rule about how you have to use a single pharmacy, and the idea is absurd. I do let my pharmacists know that because of multiple allergies that I have to use other pharmacies and what other drugs I am taking for the sake of safety.

 

Additionally, of course they will charge you what it costs extra. Why wouldn't they? If I ran a business I would do exactly the same thing. They already have suppliers, they already have the drugs available, and now here comes this person who says they needs a certain brand and suddenly instead of paying a certain price for a certain number of pills because they are buying in bulk, they are paying many times that price to buy a limited supply from outside their network of suppliers. That money has to come from somewhere, and naturally it will come from the person paying for the pills. This sort of thing is exactly why I use multiple pharmacies. You can save yourself the buttload of money by simply calling around, seeing what manufacturer each pharmacy in town uses, and then getting on the horn to each of them until you see what is safe.

 

As a last note, if you are getting prescriptions that you refill regularly, always, and I mean always, check to make sure the manufacturer hasn't changed between refills. This is as important as reading every label of everything you buy, every time you buy it.

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I have little experience filling prescriptions, but the ones I did have filled it was 'they shouldn't have gluten, but there's no guarantee'. Any pharmacist worth their pay should call the drug company to verify if there's gluten...at the very least the company *should* know if gluten is going to be a purposeful ingredient.

 

}:-(

 

Thanks Cavernio.  That's how I feel about it.  I have an out of town friend with Celiac and her pharmacist always helps her with prescriptions. 

 

I rarely fill any prescriptions but my viewpoint may be different than many.  I feel it is up to us to find out what is gluten-free or not because you cannot rely on people who do not have Celiac Disease to know what questions to ask.

Pharmacists only fill prescriptions and are trained to know what medications have cross reactions with other meds......they know as little about food intolerances as most of the population.  The few times I have needed an antibiotic or anti-viral, I call the company or ask to see the info sheet that comes with all meds to the pharmacy.  With time, you can learn to read the ingredients list and know what is safe.  I have also learned that gluten is not as prevalent as many would have you believe.  When I do fill something, I write down what works for me and then request that anti-biotic the next time I need one but luckily, since going gluten-free, I rarely ever need any meds.  I know this isn't much help to you, but

please don't rely on insurance or pharmacists, unless they have celiac themselves.  You can always post here to see if others know gluten-free status on a medication.

 

So far I have done all the footwork myself, but it's not easy.  I have several health issues, so I do take a lot of medication and sometimes it takes days for a manufacturer to call me back with the information.  Not all manufacturers have live people answer the phone that know the information.  And a surprising amount of my medication does contain gluten depending on the manufacturer.  I think it should be outlawed in medication. 

 

Right now I'm supposed to be taking an antibiotic for Lyme Disease, but still waiting for the medication from the right manufacturer.

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I know it can take a while for call backs and it can be frustrating but it's the reality that we live with. Many meds do not actually contain gluten but you will not get that guarantee from any company, unless they specifically cater to celiacs.

It's all about liability.  Same for food products.  People expect guarantees that something is 100% gluten-free and it very well may be but most companies will not state that because there are too many people with nothing better to do than sue.

 

They cannot outlaw gluten in meds because there are other food intolerances out there and then those people would be complaining and the cost of meds would be even higher than they already are. There are more reactions from mingling medications than there are from food intolerances. But a simple statement saying there are no gluten ingredients in the product and disclosure over whether or not they use shared lines would be helpful.  Truth be told, the majority of the worry comes from corn because corn is used more as a filler than wheat......at least from my limited experience with prescriptions is concerned.  I have yet to find an antibiotic which contains gluten but I tend to stick with the ones I know work well.  I do know that the Israeli company, Teva, has gluten-free meds and are pretty good about disclosure.

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I agree that Teva is good, they always answer the phone when I call too. I've been told a few times that I have called Apotex that they are a gluten free manufacturer. That makes me pretty comfortable and I have decided to call them no more than once a year now, if that. They may even be the company I recall having that listed on their website. There are some companies you may call that have a recording that say something to the effect of "we don't answer questions about ingredients such as gluten or lactose in our products." My immediate thought was well screw you too, and I hung up. I guess I am spoiled by having more than a dozen pharmacies within a 10 minute drive, and way over double that if I drive 15 minutes. I grew up in a small town though and had at least half a dozen though, who would each have likely used different manufacturers for each different drug. Do call around, get manufacturer info, then start calling manufacturers. I just go with the first one that tells me they are safe after that, calling in order of pharmacy preference.

 

No manufacturer, with the exception of Apotex, has ever made a true gluten free claim. They say they don't add gluten but don't test for it, the basic CYA stuff. Mostly because they don't want to be sued if there is CC from somewhere. If we use some common sense though, the likelyhood of CC isn't very high. They are manufacturing a wide variety of drugs, many of which could be deadly if mixed or taken by the wrong person. They work hard to prevent CC.

 

I guess I could have pointed out the reason I do all this myself. Very early on I asked a pharmcist for the manufacturer's info. She asked why, I told her I needed to call to see if it contained gluten. She flipped the box over, read the ingredients and looked me straight in the eye and said in all seriousness "gluten isn't on the ingredient list." I was like are you freakin serious? I just told her calmly that it wouldn't be listed that way as an ingredient and I would need to call them. This is the level of cluelessness we deal with when we deal with other people. Do you want to trust someone who thinks gluten would be on the side of the box to check your meds for you?

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Great post, Addy, and I couldn't agree with you more. I learned the same way when a pharmacist behaved like that with me.  She seemd all annoyed that I would waste her precious time asking such silly questions.  I even made her take the medication BACK, after it was filled, because I just could not verify that the med was even close to being gluten-free.   It was a newer version of an old drug....an anti-viral.  Anti-virals are time sensitive as far as taking them so I was pressed for time.  I ended up shoving it in her face and got my doctor to call in for the older version of the drug because the company was more willing to help me with what I needed to know.  That's when I learned that the only pharmacist's who could be trusted are the ones with celiac themselves.

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