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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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Medication
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8 posts in this topic

I'm taking my first prescription drugs since being diagnosed, nitrofurantoin for a UTI. The drug only has no gluten added, but it's not necessarily gluten free. I didn't know what to do, the pharmacist was stupidly saying that there's cross contamination in everything and there's always a risk, (I am not eating any manufactured food where the company doesn't inform me it's gluten free anymore) and I specifically got prescribed the antibiotic that is supposed to be localized in effect so I shouldn't have to worry about my IBS acting up, so I just decided to get the prescription as is.

I've read that some people get meds specifically made for them or something, but that didn't seem to be an option at all.

I don't know how to approach this in the future; I'm experiencing what I believe are some side effects of the drug but there's a slight possibility it's a gluten reaction instead/as well as.

What do you do for one-time mediaction? What about long-term medicaton? What would you have done in my specific situation, where the pharmacist wasn't giving you specific options or being helpful? She wanted me to tell her if I had any gluten problems to the medication so that I could tell her. I'm not a guinea pig! I'm taking this drug to feel better, not maybe get sicker. Furthermore I still don't think I have any noticeable gluten response, just like a lot of celiacs

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I would take it. Sounds like they don't test for gluten so they won't commit.

Sure there could be a risk of cc but with a medication, I would think its tiny. Very few meds seem to really have gluten in them. Even if they made a med with gluten on the same machinery as they made this one, they would clean it. I would think that a drug company would have to clean better than a potato chip company. They can't risk any drug residue getting into another medicine.

Some people with an extreme allergy to corn have to get meds made for them. Or maybe if the only versions of this drug have gluten added and there was no other choice, you could get it made for you. Regular chain pharmacies usually don't "make" drugs.

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"The drug only has no gluten added, but it's not necessarily gluten free."

That's a CYA statement. I'd take it.

richard

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I would take it, no question.

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Out of curiosity, you say the pharmacist wasn't being helpful or giving you options, were you relying on the pharmacist for your information about if the medication was gluten free or not? Unless you are using a small private pharmacy with a friendly, helpful and knowledgeable pharmacist this should never be the case. Before you give a pharmacy your prescription you should show it to them and ask what company manufactures what they will fill that with and get the phone number. Then call the manufacturer. (If the manufacture is Sun and you need it right away, find a different pharmacy to fill at because unless someone else has been able to get an allergy statement from them or find a US phone number, they are located outside the US and you won't be able to just call to get the info you need.)

Why? Here are a few things that have happened to me.

P: why do you need to know the manufacturer?

Me: I need to know if it's gluten free

P: (looks at bottle) it doesn't say it has gluten in it

Me: <_< I'll call anyway

P: it doesn't LIST wheat as an ingredient, just give me your prescription so I can fill it

P: none of these ingredients look like the sort of thing that would have gluten in it so it's probably safe to take

Me: well I can't risk my health and life on probably so I'll just take the name of the manufacturer and their number please

Many of these experiences have been met with much eyerolling and glaring as if I'm just some random fad follower who saw some celebrity go gluten free. As if I'd even think to check my prescriptions if that were me.... It's been my experiences that pharmacists while part of the "medical community" (and I include them very very loosely) don't take our disease at all seriously and don't have the time to worry about you. We aren't people, we're pill bottles to fill and insurance to bill. It is our responsibility to call and make sure our pills our safe.

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Corn is the filler that most pills have. Karen is right - if I didn't have trouble with corn I wouldn't have my medications made at a compounding pharmacy. I'm lucky - there are two pharmacies in my town. One has the type of pharmacists that you speak of. Totally uncooperative. But the other one has caring people who get to know their customers. When I needed an antibiotic a while back and the conpounding pharmacy in Rapid City was out of the ingredients so couldn't get them for a couple of days, my doc prescibed a couple days worth of the corn filled ones. My pharmacist said, "But you can't take these! They're full of corn!" He remembered me and that I have a corn intolerance. I don't know if he realizes what a boost that was to my confidence in him, but it sure is nice knowing I can really trust that pharmacy.

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Have the physician write the script specifying that it needs to be gluten free, and substitutions can be made to select the gluten free version equivalent. Ask the doctor if you can call him/her back if the pharmacy can't find something.

Tell the pharmacist that you have an allergy and that he/she needs to check for the allergen, by either contacting the manufacturer themselves, or giving you the phone number, (you will likely get the number of the distributor, at first, who will want to know the batch number) if they do not cooperate, you will take your business elsewhere and file a complaint with the state licensing board.

While not technically correct, the word allergy will get their attention.

Don't let these rude *****s try to not do their jobs. THIS IS THEIR JOB, checking for drug interactions and other possible side effects from the scripts they dispense. I don't know about your state, but here, they must offer a patient "consult" when dispensing a script, and I take it. There has been one place so far that tried to weasel out of it, they don't get my business anymore. At another (former) HMO which dispenses their own scripts at their own pharmacy in- house, this behavior of not wanting to check things and making one stand in line for hours while desperately ill, then having to make sure the next script wasn't going to kill me right on site, ( I have other allergies) has earned them my permanent scorn. I have slightly above average communication skills, I can't imagine what the regular person goes through, having experienced trying to get it through their thick skulls that I am telling them don't give me certain chemicals and proteins, which is supposed to be in their computerized records anyway. I am not doing this to ruin their day, I am doing this so the idiots don't kill me just because they were in some big da**ed frantic hurry.

I also like to try to scout the drug's gluten free status out on the internet before approaching the pharmacy, if this is possible, because then I can find out who the manufacturer is, and there are blogs on the internet that discuss gluten free drug lists, while their lists may not be up to date, at least it is a starting point and you can see if gluten would be a possible ingredient with the last version.

With long-term medication, the gluten free status would be crucial.

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Actually, one of the pharmacists at my Group Health Pharmacy told me that gluten is not uncommon in pills. It is used as a binding agent. It is not an issue in gelcaps and capsules, but in pills, always check. One of my prescriptions contained gluten, and it took a week and a half to get something else into my hands. I was not a happy camper for the duration, being off my med for that long. I ended up using the brand name drug, which I had to get filled at a regular pharmacy, as Group Health uses generics whenever possible. Every pharmacy in town used the same generic as GH did, because it was the most economical. There was another generic that was gluten free, but no one had it. To wait for a special order would have kept me off the med for longer, so I elected to pay more and go with the brand name. Group Health has a big notation on the top of my record that I have Celiac Disease, and that they cannot dispense anything to me that contains gluten. Doctors don't know the gluten status of drugs, so my PCP worked with the head pharmacist to get me back on something.

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