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

2 Different Answers About A Medication And Gluten


KnightRobby

Recommended Posts

KnightRobby Enthusiast

I called the manufacturer of a medication that I am taking. The rep called me back and said that they couldn't deny or confirm that there was gluten in the medication. So, this isn't a good thing to me of course.

On the other hand, my doctor calls and asks. She speaks to someone who says it doesn't have gluten. I tell her that I was told they didn't know and couldn't confirm/deny. I found it to be odd we received 2 different answers. The thing that bothers me is that her answer immediately overid mine. She wasn't curious as to why we received 2 different answers, though I trust her, I feel like she was being incredibly lazy.

I'm calling Monday, but at this point I have no idea if this medication has gluten or not. It is not listed on the Gluten Free medication list.

Does anyone know if there is an updated list anywhere? Not knowing whether or not this medication is harmful is very frustrating.


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



Celiac.com Sponsor (A8-M):



Juliebove Rising Star

Who did you speak to? Chances are that you spoke to two different people. Often if you speak to two different people, you'll get two different answers. If the person I am speaking to doesn't have an answer, I will ask for a supervisor. Not that I can be assured that they have the right answer mind you. Some people will sound authoratative and given you an answer even when it's wrong. Me? I'd rather say I don't know if I really don't. But I will also try to find out for sure.

KnightRobby Enthusiast

I spoke to someone, my doctor spoke with another person. It's ridiculous that they came up with 2 different answers for one simple question. You are right though; I definitely need to speak with a supervisor at this point. But it makes me worried about some other medicines and if these answers are really answers.

Anyone else have trouble with getting a straight answer about gluten and medicine...or just food?

VeggieGal Contributor

You could try emailing the company and explaining the situation and that you received two different answers from them. That way you may get something back in writing. It maybe that it doesnt contain gluten but its made in a company that has gluten in other meds and therefore a chance of cross contamination and therefore they are legally bound not to specify it as gluten free.

If you don't get a reply, follow it up with a phonecall to a manager as mentioned. I've had same issues with my levothyroxine meds. In the end I had to go online and type in glutenfree thyroxine to bring a list up. Good luck

1desperateladysaved Proficient

I had a company that absolutely could not tell me if corn was in their product. However, they solumnly warned me that they could not guarantee the product was corn free. I read between the lines; there was corn in it.

Adalaide Mentor

There has been at least one occasion on which I have called a company about a drug and been told that they consider their product gluten free in the same breath she told me that an ingredient in it is sourced from wheat. The medication is on the gluten free drug list. I call every manufacturer, every time.

This is the simple reason I never fill a prescription without verification it is safe first, and hopefully you haven't yet either. Call other pharmacies in the area, find out who their manufacturer is and arm yourself with the phone number for all of those manufacturers for Monday morning. While emailing is useful, if you need a prescription soon it is a waste of time when you can just get someone on the phone in minutes rather than wait days for a response.

VeggieGal Contributor

While emailing is useful, if you need a prescription soon it is a waste of time when you can just get someone on the phone in minutes rather than wait days for a response.

The problem is, you can't always get someone on the phone straight away. I kept getting passed from pillar to post and given insuffient information. Maybe i was lucky after i sent an email because the relevant person phoned me almost straight away and confirmed it all in writing afterwards so I could show my GP. I was very impressed with them (Mercury Pharma) because they also got me to complete a survey with them as they were/are doing a study/research on Celiac disease and Levothyroxine medication as they believe there is a connection. It actually felt good not to be counted as just a number but my history/health and views were taken into account. Sometimes it pays to be patient and get the correct information ...frustrating at times I know.


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



Celiac.com Sponsor (A8-M):



Adalaide Mentor

I'm not sure how things may be different in England, but here in the US we pretty much get handed a piece of paper by our doctor and sent on our way to choose our own pharmacy and get our prescription filled. Our doctor really has nothing to do with anything at that point besides authorizing refills if needed. Most don't really give a crap what is in our pills. Also, with the number of manufacturers that are in the US it is very easy to get a human on the phone from half a dozen manufacturers in 30-60 minutes depending on the time of day. I have so many manufacturer's numbers in my contact list of my cell phone you'd think I'm a pharmacist. :lol:

I do agree though that getting the correct information is absolutely vital. We can't risk taking something that could make us horridly ill from gluten. At this point I am quite accustomed to hearing the "but we can't make guarantees" and "we don't actually test for gluten" and other such statements from manufacturers, but I would be alarmed at getting two different answers from the same company. A third call may be in order, and be sure to make it yourself. Nothing against your doctor but no matter how much you trust her, unless she also has celiac she has no clue what she needs to be asking these people and you do.

psawyer Proficient

"we can not guarantee" usually means that, while the ingredient is not intentionally present, no testing is done for possible contamination on materials purchased from third parties. That is the reality.

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. - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

    2. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    3. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

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

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
    • Wheatwacked
      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.