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 Emergency Help Regarding Generic Medication


suzyq63

Recommended Posts

suzyq63 Apprentice

Thanks to our health insurance company, my daughter with celiac may have to switch to a generic seizure medication. The insurance company messed up and now she is due to run out of her meds tomorrow morning! I called CVS to find out which manufacturer they use for the generic of topamax (topiramate). I called the company and they said they do not use the term gluten free; they don't do end-of-line testing. They state that "we do not add gluten". The starches they use are corn, rice, or potato. Alcohols are synthetic. So now I'm not sure what to do. We are hoping to get a prior authorization through today so she can continue with the name brand; without prior authorization the insurance will not cover the name brand at all now. The name brand is super expensive; the insurance is paying $1600 per month. There is no way we can pay out of pocket for the name brand.

Would you consider this generic safe? There are 17 different manufacturers of topiramate, but Mylan is the company used by CVS. What do you do about generics? Do you research to find out all manufacturers and then call every one of them and then find a pharmacy that will use whoever will verify they're gluten free?

Paula


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



Celiac.com Sponsor (A8-M):



suzyq63 Apprentice

I may have answered my own question. I decided to call the manufacturer of the name brand to ask them about their gluten-free status. They will only say that they do not use and wheat, rye, barley, spelt, etc. in their manufacturing process. They do not test at the end. So I guess that the generic is equivalent to the name brand as far as gluten-free goes. I'm not sure of its efficacy for seizure control since every patient is different.

Paula

jerseyangel Proficient

Thanks to our health insurance company, my daughter with celiac may have to switch to a generic seizure medication. The insurance company messed up and now she is due to run out of her meds tomorrow morning! I called CVS to find out which manufacturer they use for the generic of topamax (topiramate). I called the company and they said they do not use the term gluten free; they don't do end-of-line testing. They state that "we do not add gluten". The starches they use are corn, rice, or potato. Alcohols are synthetic. So now I'm not sure what to do. We are hoping to get a prior authorization through today so she can continue with the name brand; without prior authorization the insurance will not cover the name brand at all now. The name brand is super expensive; the insurance is paying $1600 per month. There is no way we can pay out of pocket for the name brand.

Would you consider this generic safe? There are 17 different manufacturers of topiramate, but Mylan is the company used by CVS. What do you do about generics? Do you research to find out all manufacturers and then call every one of them and then find a pharmacy that will use whoever will verify they're gluten free?

Paula

Hi Paula, I would feel very comfortable using the generic. I take a Mylan med daily for my blood pressure.

kareng Grand Master

There statement is what we here call a CYA statement (Cover your A :ph34r::ph34r: ). They don't add anything that has gluten. Because they don't test for it, they feel legally unable to say its gluten-free. I would take it if I needed it .

suzyq63 Apprentice

Thanks. I do feel better about using a generic, at least as far as celiac is concerned. I'm still nervous to switch her to a generic due to having such excellent seizure control with the name brand. I'd really hate to lose control. But there's not much more I can do now; we're at the mercy of the insurance company. I should find out later today or tomorrow morning which medication she'll be taking.

Paula

lizajane Rookie

i take 2 mylan medications and one more med that may or may not be from mylan. did they happen to say that ALL their meds are made without gluten ingredients? i am trying to locate my phone to call, but can't find it (cell phone.) i have been feeling "off" for the past month or two and was blaming it on thyroid. but i am feeling some mild gluten-y symptoms and am worried it is the meds.

tarnalberry Community Regular

Some generics are more different from brand names, some are more similar. They do all contain the same active ingredient, but the binders may end up causing them slightly different affectivities. More likely, a switch (either way) will bring up side effects that sthe other one didn't. I happily switched to generic topomax when I was still on it. (But they made the generic available all of two months before I got off of it. :) )


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



Celiac.com Sponsor (A8-M):



Roda Rising Star

I take two prescriptons by mylan also and I got the same response. I haven't had any problems with them. Good luck.

suzyq63 Apprentice

Thank you. I only asked about topiramate, so I don't know about any other meds made by Mylan. In the end, we got the prior authorization for name-brand topamax and were able to fill it late this afternoon. I now have to seriously consider if we want to try the generic in the near future. The price for the name-brand went up again (my copay is still the same though). The pills are just over $10 per pill and Alison takes 6 pills per day. That price is utterly ridiculous! Unfortunately, the generic is often not exactly the same as the name brand when it comes to seizures, so it's a tough decision.

Paula

Chrissyb Enthusiast

I have taken the very medication for years and have had no problems what so ever. I took the name brand before it went generic and thankful when it did cost was a lot less.

  • 2 years later...
kjenn81 Newbie

Does anyone know if this information is still accurate? I was just prescribed topiramate (long story, migraines, mini-stroke, jerk neurologist), and my pharmacist and I are both looking for a manufacturer we can use.

Adalaide Mentor

There are many generic manufacturers of topiramate. You will want to ask your pharmacy what brand they will fill your prescription with and then call the company to ask if is gluten free. If you're doing a ramp up period, you'll want to remember to check both doses, both the smaller dose and the regular dose you'll be taking since the information for them can be different.

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. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    2. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Alarming

    4. - Maggieinsc commented on Scott Adams's article in Winter 2026 Issue
      5

      Celiac Disease and Longevity: Can Treatment and Healing Improve Long-Term Survival?

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

    • Total Members
      133,318
    • Most Online (within 30 mins)
      7,748

    direne
    Newest Member
    direne
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
    • xxnonamexx
      Thanks for the info. I have been taking the ones you recommended but when I saw this I was curious if it was something else to add to the journey Thank  
    • Jane07
      I used to be able to get the Rivera yougut i havent been able to get it lately. I like getting it did say it did say gluten free. I just looking for a good yogurt that gluten free that i can add some fruit and nuts to any suggestion would be helpful  thanks
×
×
  • 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.