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

Pharmaceutical Companies


Moondanse

Recommended Posts

Moondanse Explorer

I've been making phone calls to the different pharmaceutical companies since I got sick from my nasal spray.

I'm getting frustrated with the difficulty involved in determining if a medication is safe. It really is absolutely absurd that we have to do this. If you call the pharmacy, or mine at least, you are told that unless it's marked gluten-free they can't help you out. Give me a break. There has got to be a better way. I can't go by the lists out there, because they listed my nasal spray (Nasonex) as safe and it was not.

So, I'd like to know what your thoughts are about Allegra, Allegra-D and generic fexofenadine 180? I called Sanofi-Aventis and they said that they cannot certify that it is gluten free due to cross contamination issues. They said that the starch that they use is corn and that it is subject to change. However, the man I spoke with said that he has not known it to change. I use one of the variations of this product every day. So far, I really haven't noticed any problems though.

I'm just paranoid right now. I've been sick for well over a week, so I'm starting to get concerned that something else is causing the problem. It's probably more likely that my system is having a tough time recovering. I used the nasal spray for ten days before I determined that it was the culprit. But, enough is enough. My stomach is so sick and I look like I'm four months pregnant. I hate this. I'm feeling for frustrated, angry, sad, tired, etc, etc, etc.

I tried to find out about Trazadone and Watson Pharma told me that they cannot certify it as gluten-free. Then the guy said there were no starches listed in the ingredient list.

I have a whole medicine cabinet full of things. I had a really tough time trying to even get in contact with the pharmaceutical company for Hyoscyamine, which a lot of us use. The company listed on my bottle is Amide, but they've been acquired by another company. It took me about 45 minutes to even figure that out. Then I got dumped in to a voicemail. ARGH!!!

Who knows. If any of you know anything about any of these drugs, please let me know.

Thank you for letting me vent.

Kelli


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



Celiac.com Sponsor (A8-M):



angel-jd1 Community Regular

Moondanse-

I personally feel it isn't the pharmacy's responsibility to call the companies for us and find out the gluten free status. As you have found, it takes time, time that those people don't have. Also, I am not a person who likes to get 2nd hand information. I would rather call the company myself and speak with them myself. That way I am the one hearing exactly what is being said. I can then ask any questions I may have about what they said. I can ask about shared production lines etc.

When I call I usually ask for a pharmacist or chemist at the company. Sometimes you DO get the voicemail, leave a message, but then go ahead and call them again later if they don't return the call.

Most of the companies aren't going to "certify" it is gluten free. That is just asking for someone to sue them. They usually say something like "we don't add any gluten ingredents to ______"

All I can tell you is that you have to keep making those calls. You are doing the right thing by trying to figure out what meds are safe for you!! Hang in there......:)

-Jessica :rolleyes:

I've been making phone calls to the different pharmaceutical companies since I got sick from my nasal spray.

I'm getting frustrated with the difficulty involved in determining if a medication is safe. It really is absolutely absurd that we have to do this. If you call the pharmacy, or mine at least, you are told that unless it's marked gluten-free they can't help you out. Give me a break. There has got to be a better way. I can't go by the lists out there, because they listed my nasal spray (Nasonex) as safe and it was not.

So, I'd like to know what your thoughts are about Allegra, Allegra-D and generic fexofenadine 180? I called Sanofi-Aventis and they said that they cannot certify that it is gluten free due to cross contamination issues. They said that the starch that they use is corn and that it is subject to change. However, the man I spoke with said that he has not known it to change. I use one of the variations of this product every day. So far, I really haven't noticed any problems though.

I'm just paranoid right now. I've been sick for well over a week, so I'm starting to get concerned that something else is causing the problem. It's probably more likely that my system is having a tough time recovering. I used the nasal spray for ten days before I determined that it was the culprit. But, enough is enough. My stomach is so sick and I look like I'm four months pregnant. I hate this. I'm feeling for frustrated, angry, sad, tired, etc, etc, etc.

I tried to find out about Trazadone and Watson Pharma told me that they cannot certify it as gluten-free. Then the guy said there were no starches listed in the ingredient list.

I have a whole medicine cabinet full of things. I had a really tough time trying to even get in contact with the pharmaceutical company for Hyoscyamine, which a lot of us use. The company listed on my bottle is Amide, but they've been acquired by another company. It took me about 45 minutes to even figure that out. Then I got dumped in to a voicemail. ARGH!!!

Who knows. If any of you know anything about any of these drugs, please let me know.

Thank you for letting me vent.

Kelli

Moondanse Explorer
Moondanse-

I personally feel it isn't the pharmacy's responsibility to call the companies for us and find out the gluten free status. As you have found, it takes time, time that those people don't have. Also, I am not a person who likes to get 2nd hand information. I would rather call the company myself and speak with them myself. That way I am the one hearing exactly what is being said. I can then ask any questions I may have about what they said. I can ask about shared production lines etc.

When I call I usually ask for a pharmacist or chemist at the company. Sometimes you DO get the voicemail, leave a message, but then go ahead and call them again later if they don't return the call.

Most of the companies aren't going to "certify" it is gluten free. That is just asking for someone to sue them. They usually say something like "we don't add any gluten ingredents to ______"

All I can tell you is that you have to keep making those calls. You are doing the right thing by trying to figure out what meds are safe for you!! Hang in there......:)

-Jessica :rolleyes:

Jessica, you are right. I really was just venting. I had a terrible day and I'm aggravated with myself, and in general, that my nasal spray made me sick. Everything I eat seems to be aggravating my symptoms even more.

The long and short of it is I just want to feel better. I don't understand people who cheat, it's just not worth all of this. I've been recovering for a full week now and it still isn't out of my system. It's just bothering me even more than usual that we have such obstacles in front of us with regard to everything and anything we put on or in our body. I have faith that one of these days everything will be labled so people with Celiac will not have to jump through hoops to function.

In the meantime, thanks for allowing me to vent :P

debmidge Rising Star

I agree it's so frustrating, especially if you get your prescriptions changed or need something new....

angel-jd1 Community Regular
Jessica, you are right. I really was just venting. I had a terrible day and I'm aggravated with myself, and in general, that my nasal spray made me sick. Everything I eat seems to be aggravating my symptoms even more.

The long and short of it is I just want to feel better. I don't understand people who cheat, it's just not worth all of this. I've been recovering for a full week now and it still isn't out of my system. It's just bothering me even more than usual that we have such obstacles in front of us with regard to everything and anything we put on or in our body. I have faith that one of these days everything will be labled so people with Celiac will not have to jump through hoops to function.

In the meantime, thanks for allowing me to vent :P

It IS frustrating and there is absolutely nothing wrong with a little venting!! ;) Keep up the good work, everything will be fine!!

-Jessica :rolleyes:

mouth Enthusiast
I've been making phone calls to the different pharmaceutical companies since I got sick from my nasal spray.

I'm getting frustrated with the difficulty involved in determining if a medication is safe. It really is absolutely absurd that we have to do this. If you call the pharmacy, or mine at least, you are told that unless it's marked gluten-free they can't help you out. Give me a break. There has got to be a better way. I can't go by the lists out there, because they listed my nasal spray (Nasonex) as safe and it was not.

So, I'd like to know what your thoughts are about Allegra, Allegra-D and generic fexofenadine 180? I called Sanofi-Aventis and they said that they cannot certify that it is gluten free due to cross contamination issues. They said that the starch that they use is corn and that it is subject to change. However, the man I spoke with said that he has not known it to change. I use one of the variations of this product every day. So far, I really haven't noticed any problems though.

I'm just paranoid right now. I've been sick for well over a week, so I'm starting to get concerned that something else is causing the problem. It's probably more likely that my system is having a tough time recovering. I used the nasal spray for ten days before I determined that it was the culprit. But, enough is enough. My stomach is so sick and I look like I'm four months pregnant. I hate this. I'm feeling for frustrated, angry, sad, tired, etc, etc, etc.

I tried to find out about Trazadone and Watson Pharma told me that they cannot certify it as gluten-free. Then the guy said there were no starches listed in the ingredient list.

I have a whole medicine cabinet full of things. I had a really tough time trying to even get in contact with the pharmaceutical company for Hyoscyamine, which a lot of us use. The company listed on my bottle is Amide, but they've been acquired by another company. It took me about 45 minutes to even figure that out. Then I got dumped in to a voicemail. ARGH!!!

Who knows. If any of you know anything about any of these drugs, please let me know.

Thank you for letting me vent.

Kelli

Dear Kelly

That is strange, because sanofi aventis was 1 of the first companies I had to call for my daughter. They snail mailed me a list of safe products. The letter i got says it is important ot point out that our suppliers may change the source of any inactive ingredient without our knowledge. therefore, we cannot guarantee that our products will not contain any of the below listed ingredients in the future. the list following lists are gluten corn products and potato products. Allegra Tablets and Allegra_D Tablets (12 hr) are on the list. So as of when I got the list they were safe.

Maybe I'll email them again. Nasacort AQ is gluten-free. My daughter uses it.. and has been for a couple of years. If you want send me a letter with your email address and i will scan it and email it to yo if you want.

Good luck and feel better.

Lynn

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. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

    2. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

    3. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

    4. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

    5. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748

    Tony White
    Newest Member
    Tony White
    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

    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
×
×
  • 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.