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

Medication


cavernio

Recommended Posts

cavernio Enthusiast

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


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

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.

lovegrov Collaborator

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

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

richard

jerseyangel Proficient

I would take it, no question.

Adalaide Mentor

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.

bartfull Rising Star

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.

Takala Enthusiast

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.


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



Celiac.com Sponsor (A8-M):



Ruby's Mom Newbie

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.

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. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

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

    • Total Members
      132,846
    • Most Online (within 30 mins)
      7,748

    Fultonn
    Newest Member
    Fultonn
    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

    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.