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

Need Advice About Medication


Lindsay630

Recommended Posts

Lindsay630 Rookie

Hi Everyone,

I haven't been on in a while, but need your help now....I was given a RX for Zofran from my PCP. She wrote on the RX Please only substitute IF no gluten components, pt has Celiac. Well I went to pick up RX and the generic has gluten. So I assume they have the original (non Generic), they do BUT it is $800.00 That is for about 1 months worth! NO WAY can I afford that. I called my insurance and the representative told me I was acting like a spoiled brat and should just take what they will give me "you will be Fine". I still filed the appeal, but it will take 6-8 weeks for them to make a decision. What makes me the most angry is that it isn't even an MD that reviews the appeal its a Pharmacy Tech! Yea they know more than an MD right? Has anyone ever dealt with this? Any advice? Thanks so much for any and all help!

Lindsay


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Call your doctors office. Many times another med can be substituted and also on occasion an office will have sample packets that they can give you.

Takala Enthusiast

Call the doctor's office is right. The doctor's are trying to fob this off on the patients and letting them wrangle with the pharmacies and the insurance companies, but it is their job to write the prescription in a way that it is clear that the script has to be filled without it containing the allergen.

Your insurance is trying to rip you off. Don't let them. You must contact the doctor's office immediately.

You can also file a complaint with your state's attorney general's office about the insurance company refusing to fill a script as written by your doctor.

That's right, I said "allergen." That is the word I use I use when dealing with dimb bulbs in the pharmacy technician world. I tell them I am allergic to wheat, rye, barley, AND the proteins and starches made from such, and I cannot take anything with that in it. This is because the word "allergy" is understood, while they may not recognize the significance of "gluten intolerance" or "celiac." Or they may pretend to not recognize it. If they do not know, THEY need to let me talk to the pharmacist and ask, or they need to contact the manufacturer and find out.

While technically, I comprehend that I do not have an "allergy," but an auto immune reaction, for the intents of how they are perceiving the ingredients, that's how they have to look at it. Pharmacy techs may not realize or care that my auto immune reaction is not an upset stomach, but neurological reactions and a flare up that may make it impossible for me to drive.

The last time I went to get a script filled the idiotic pharmacy technician at the drop off had no idea what I was talking about, and was pulling this "uh, I think you'll be fine" routine, so I asked her to let me consult the pharmacist as this was an allergy and we had to check with the manufacturer. The PHARMACIST does not know for sure and tries the same routine, at which point I said we need to contact the manufacturer, who is it, she says she doesn't know and opens the package and there is NO manufacturer nor country of origin listed. (at this point I am getting annoyed, and you don't want to see that. I don't get mad, but I am not a pushover.) She says she will get the tech to give me the name of the product distributor. The snotty little tech finally gets the name of the distributor, and I call them on the cell phone because they cannot be bothered- they refuse to do this. The product distributor tells me they need the official store number of the store. I try asking the counter clerk, who can see me doing this, and get told to go away as they are too busy. Nice customer service, eh ? I give the store's address to the distributor, and he finds the manufacturer (finally) and gives me their number. He also checks the ingredient list on this particular item, and says he thinks I am fine, but that I should call the manufacturer and make sure.

I call the number for the name of the manufacturer. Which is in a different time zone, and I get an answering machine saying they are closed until the next day.

At this point I don't want to get a script filled with this store, and I am going to go home and try this the next day at a different place closer to where I live as I don't want to ***** around with these idiots who are selling Rx drugs that they don't even have labeled on the box as to the country of origin and the manufacturer, and who are acting annoyed that I need to know this because they won't look. And I will be able to get to my computer and look it up faster now that I have not only the product name, but manufacturer and point of origin.

It goes better at the second store.

This was not the fault of the doctor, he wrote it as "fill this in a form that does not have the allergens" and said to call him if the pharmacy balked, but it was later in the day.

Loey Rising Star

Hi Everyone,

I haven't been on in a while, but need your help now....I was given a RX for Zofran from my PCP. She wrote on the RX Please only substitute IF no gluten components, pt has Celiac. Well I went to pick up RX and the generic has gluten. So I assume they have the original (non Generic), they do BUT it is $800.00 That is for about 1 months worth! NO WAY can I afford that. I called my insurance and the representative told me I was acting like a spoiled brat and should just take what they will give me "you will be Fine". I still filed the appeal, but it will take 6-8 weeks for them to make a decision. What makes me the most angry is that it isn't even an MD that reviews the appeal its a Pharmacy Tech! Yea they know more than an MD right? Has anyone ever dealt with this? Any advice? Thanks so much for any and all help!

Lindsay

Sometimes the pharmaceutical companies that make the product will give it to you. It would be worth checking into. I know AstraZeneca does that when a patient can't afford to pay for their prescription.

Loey

SGWhiskers Collaborator

I agree, talk to the doctor's office and get some samples to start you out. Usually there are more than one manufacturer of generics and you can shop around from pharmacy to pharmacy to see which ones don't have gluten. I know it is a pain, but I've been able to locate gluten-free versions of generics that way. I actually was lucky enough to have my regular pharmacy do the research for me one time. If you are stuck with one pharmacy chain, you could have them order a generic version that is gluten-free if you two can work together to find it.

I also like the idea of just subbing in another medication if possible.

The insurance company is ethically wrong and I've been in your situation before. Fortunately, my pharmacist and I were able to find generic alternatives with some research. It may be that the alternative you come up with is an injectable or something that will cost the insurance company more to fill in the long run. I kind of hope so.

Oh, also check different forms of the medication. I had one med I took that had one of my allergens in the liquid and tablet form, but not the pediatric chewable. I was given a script for a large dose of the pediatric chewable instead.

Also, have your doctor call the insurance company directly. I got that same med approved because the doc knew how to work within the insuranc system. Otherwise, they wanted me to pay for all of it out of pocket.

K8ling Enthusiast

My zofran is generic and is gluten-free... I haven't had a problem with it.

Lindsay630 Rookie

Thanks everyone. After over 3 hours on the phone, my insurance company approved it! I can't believe they finally caved. I got a representative who understood celiac. I am so disappointed in the US healthcare system. Thanks again for all of your advice.

Lindsay


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



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Hmart replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    2. - trents replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      10

      Help I’m cross contaminating myself,

    4. - DebJ14 replied to Jhona's topic in Introduce Yourself / Share Stuff
      30

      Does anyone here also have Afib

    5. - Hmart posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,927
    • Most Online (within 30 mins)
      7,748

    Lindafink
    Newest Member
    Lindafink
    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

    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
    • DebJ14
      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
    • Hmart
      The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative.  I have gone gluten free. In week 1 I had a flare-up that was similar to my original symptoms. I got more careful/serious. Now at the end of week 2 I had another flare-up. These symptoms seem to get more intense. My questions:  1. How do I know if I have celiac and not something else? 2. Are these symptoms what others experience from gluten?  When I have a flare-up it’s completely debilitating. Can’t sleep, can’t eat, can’t move. Body just shakes. I have lost 10 pounds since going gluten free in the last two weeks.
×
×
  • 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.