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. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

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

    • Total Members
      133,024
    • Most Online (within 30 mins)
      7,748

    Sunset Blue
    Newest Member
    Sunset Blue
    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

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.