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. - cristiana replied to emzie's topic in Related Issues & Disorders
      1

      Stomach hurts with movement

    2. - emzie posted a topic in Related Issues & Disorders
      1

      Stomach hurts with movement

    3. - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      3

      Shingles - Could It Be Related to Gluten/ Celiac

    4. 0

      NCA Tennessee/Vanderbilt – Parents & Caregivers of Children with Celiac Virtual Meeting

    5. 0

      NCA Tennessee/Vanderbilt – Parents & Caregivers of Children with Celiac Virtual Meeting


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,451
    • Most Online (within 30 mins)
      7,748

    emzie
    Newest Member
    emzie
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Hi @emzie and welcome to the forum. Perhaps could be residual inflammation and bloating that is causing sensitivity in that area.  I was diagnosed with coeliac disease in 2013 and I remember some years ago my sister telling me around that time that she had a lady in her church, also a coeliac, who  had real pain when she turned her torso in a certain direction whilst doing exercises, but otherwise was responding well to the gluten-free diet. As far as I know is still the picture of health. I often end up with pain in various parts of my gut if I eat too much rich food or certain types of fibre (for some reasons walnuts make my gut hurt, and rice cakes!) and and as a rule, the pain usually hangs around for a number of days, maybe up to a week.   When I bend over or turn, I can feel it.  I think this is actually due to my other diagnosis of IBS, for years I thought I had a rumbling appendix but I think it must have just been IBS.  Reading the experiences of other sufferers, it seems quite typical.  Sensitized gut, build up of gas - it stands to reason that the extra pressure of turning can increase the pain. When I am glutened I get a burning, gnawing pain in my stomach on and off for some days - it isn't constant, but it can take up a few hours of the day.  I believe this to be gastritis, but it seems to hurt irrespective of movement.   Anyway, you are doing the right thing to seek a professional opinion, though, so do let us know how you get on.   Meanwhile, might I suggest you drink peppermint tea, or try slices of fresh ginger in hot water? A lot of IBS sufferers say the former is very helpful in relieving cramps, etc, and the latter is very soothing on the stomach. Cristiana
    • emzie
      Hi! One of the usual symptoms I have with a gluten flare up has deviated a bit and I thought I'd search for advice/opinions here. Also to see if anyone goes through similar stuff. Monday all of a sudden I got really bad pain in my stomach (centre, right under the chest, where the duodenum would be located). I ended up having to throw up for 2 hours, my body was trying to get rid of something from all sides and it was just horrible. Since then I havent been nauseous anymore at all, but the pain has stayed and it always worsens the moment i start moving. The more I move the more it hurts, and when i rest longer it seems to dissapear (no movement). I've had this before, but years ago I think around when I first got diagnosed with coeliac, where each time I moved, my stomach would hurt, to the point where I went to the ER because doctors got freaked out. That only lasted 1 night though, and Now it's already wednesday, so 3 days since then, but the pain persists and remains leveled. it doesn't get crazy intense, but it's still uncomfortable to the point I cant really go out because Im afraid itll turn into a giant flare up again. I couldn't think of where I could possibly have been glutened at this bad of a level and why it hasn't passed yet. I went to the GP, and as long as I have no fever and the pain isnt insane then its fine which I havent had yet. Tomorrow im also seeing a gastroenterologist specialized in IBS and coeliac for the first time finally in years, but I thought I'd ask on here anyway because it still hasnt dissapeared. It also hurts when someone presses on it. Maybe it's just really inflamed/irritated. I'm just frustrated because I'm missing out on my uni lectures and I do a sports bachelor, so I can't get behind on stuff & next to that i'm also going to go to the beach with my boyfriend's family this weekend: ( 
    • Flash1970
      Hi. So sorry to hear about your shingles. There is a lidocaine cream that you can get at Walmart that will help numb the pain.  That's what I used for mine. It can't be put near your eyes or in your ears. I hope your doctor gave you valacyclovir which is an antiviral.  It does lessen the symptoms. If it is in your eyes,  see an ophthalmologist.  They have an antiviral eye drop that can be prescribed.  Shingles in the eye could cause blindness.  I was unsure whether you have celiac or not.  If you do,  follow the diet.  I believe that extra stress on your body does affect everything. Shingles can recur. If you start getting the warning signs of nerves tingling,  see the dr and start taking the valacyclovir to prevent a breakout. If I sound technical,  I am a retired pharmacist. 
    • Scott Adams
      You are right to be proactive, as research does indicate that individuals with celiac disease can have a higher predisposition to enamel defects, cavities, and periodontal issues, even with excellent oral hygiene. While many people with celiac successfully undergo orthodontic treatment without complication, your caution is valid. It may be beneficial to seek a consultation with an orthodontist who is familiar with managing patients with autoimmune conditions or who is willing to collaborate with your daughter's gastroenterologist or a periodontist. They can perform a thorough assessment of her current oral health, discuss your specific concerns about recession and decay, and create a tailored hygiene plan. This second opinion could provide a clearer risk-benefit analysis, helping you decide if addressing the cosmetic concern of the lower teeth is worth the potential risks for your daughter, especially if they are not currently affecting function or her confidence. 
    • Scott Adams
      This is an older article, but still helpful:  
×
×
  • 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.