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

Nasonex Not Gluten-free


ArtGirl

Recommended Posts

ArtGirl Enthusiast

Yesterday I was given a sample of Nasonex from the doctor for treating a sinus infection. Nothing in the ingredients list looked bad to me. So, I used it.

Bad choice. Am sick this morning and it feels a lot like a glutening.

So, (hindsight being so much better than foresight) I did a search on this forum for Nasonex. Found a 2007 thread and, sure enough, it is NOT GLUTEN FREE!

Here's the link if you want to read what they said...

Open Original Shared Link

The manufacturer, when asked, said that they do use gluten ingredients in the formulation. I'm not going to call them because my gut reaction - pun intended :D - is enough to confirm this.

The poster did say that Nasacort AQ is gluten-free (at least, at the time of the post). I think I'll check with them first if the doctor switches me to that.


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

I took Nasacort AQ up until about a month ago, and it was fine. I'm now on the generac for Flonase, which also seems to be ok.

I called Roxane Labs (the makers of the generic Flonase) and they refused to give me any ingredient information. My pharmacist also called and they wouldn't give it to her either--telling her to refer to the ingredient list on the package insert. The ingredient list matches Flonase exactly, so I gave it a try and have been fine with it.

I would like to tell Roxane where they can stick it, but my insurance company has a terrible prescription program and I'd have to pay full price for a brand name. <_< I have ETD, so I need the spray.

missy'smom Collaborator

Thank you for posting this. DS takes it for his allergies. He seems to think it helps but he doesn't sound like it helps enough. I wonder if it is wheat or barley that is the source of gluten. Ds reacted to wheat. I didn't even think to check on it because it's a nasal spray! I did check on the tablets he was prescribed. I'm going to call them, that way I can say that I verified it myself when we go in for the next check up with the allergist.

ArtGirl Enthusiast

Glad to be of help. That's why I started the thread, since the other one was no longer active being a year old.

When you do contact Schering about the Nasonex, would you post their reply in this thread. Thanks.

missy'smom Collaborator

Just talked with them and they gave the same resonse that everyone got. CYA . The operator has his statement to read and that's all he knows or can find out(not to knock him-that's all the company gives him). When I asked about if it was due to potential CC or gluten ingredients or sources of ingedients changing(ie. switching from corn to wheat) he said all of the above. I did ask if the gluten was potentially from wheat or barley and he couldn't say. It's interesting listening to the ingredient list, it makes you wonder if you really want to be putting that stuff in your body! Along with the starch(corn), there was another ingredient that is sometimes derived from plant seeds and when questioed about whether those could be gluten containing seeds the response was a CYA "yeah".

ArtGirl Enthusiast

It's my guess that the cellulose and citric acid would be a corn source, but could be from other grains. I suspect that they use whatever's the cheaper source at any given time, hense the "changing formula" statement that someone got from them last year.

Jodie2DQ2 Apprentice

I have been using this all summer because I looked and it was on the gluten free meds website.(www.glutenfreemeds.com) Why would it be on the list? Does whoever creates that list even verify it before putting a list like that together. I have relied on it alot for medicines. Now I guess I know better! Very frustrating! Jodie


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

I find it almost astonishing that any company would put top allergens in a product aimed at relieving allergies :o:huh:<_<:rolleyes: But when you see all the junk they put in meds, it gets sorta expected after awhile. Then they tell people not to trust herbal remedies!

A Google search for Open Original Shared Link turns up tons of stuff.

RiceGuy Collaborator
I have been using this all summer because I looked and it was on the gluten free meds website.(www.glutenfreemeds.com) Why would it be on the list? Does whoever creates that list even verify it before putting a list like that together. I have relied on it alot for medicines. Now I guess I know better! Very frustrating! Jodie

That's a sort of "portal" site, most likely because someone acquired the domain name, but didn't pay their bill. If a site like that gets enough hits, the registrar keeps it active with more-or-less generic stuff, just to take advantage of the traffic. I'd have to guess the content is generated automatically. It really isn't maintained by anyone. Nobody checks or verifies anything on it.

jerseyangel Proficient
I find it almost astonishing that any company would put top allergens in a product aimed at relieving allergies :o:huh:<_<:rolleyes:

I heartily agree! Boggles the mind!

As far as the drug lists are concerned, I never use them myself. I call and verify one way or the other. I've found things on the lists to be outdated, and I only have checked on a couple of things.

Lists of any sort are subject to change.

ArtGirl Enthusiast

Along with making my own inquiries, I also rely on others' experiences as relayed in this forum. (Just wish I had checked here first before using the spray!)

OFF TOPIC.... I just noticed RiceGuy's signature statement

A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies

LOL :D:D:lol::D:P

lovegrov Collaborator
That's a sort of "portal" site, most likely because someone acquired the domain name, but didn't pay their bill. If a site like that gets enough hits, the registrar keeps it active with more-or-less generic stuff, just to take advantage of the traffic. I'd have to guess the content is generated automatically. It really isn't maintained by anyone. Nobody checks or verifies anything on it.

At least as of recently that site was maintained by a pharmacist named Steve Plogsted. So where did you get your information about nobody checked anything?

RiceGuy Collaborator
At least as of recently that site was maintained by a pharmacist named Steve Plogsted. So where did you get your information about nobody checked anything?

It's pretty simple to tell such a site. For one, just look at where all the links refer to:

searchportal.information.com

Then, each link has an absolutely huge query in it, so it's basically going to another site to searching for stuff. So it in itself doesn't have any verifiable info. Only predefined search links, probably based on the domain name or whatever the site was intended to be when it was "real".

Additionally, all the lists of links - left, top, and main body of the page, are basically the same things.

Finally, the lower set of searches are just "popular" searches, and not even related to gluten-free anything.

There are a lot of sites like this, which as I said, tends to happen when a site goes under financially.

Looking it up, I found that the site is kept online by Open Original Shared Link, which is a domain name holding company. The blurb on their home page basically says it all.

lovegrov Collaborator

I was unaware that Plogsted has stopped taking care of it.

lovegrov Collaborator

Oops, I wasn't paying close attention. I was talking about glutenfreedrugs.com, not glutenfreemeds.com. Yes, glutenfreemeds obviously is not actually being taken care of by anybody. However, Nasonex is listed as gluten-free at glutenfreedrugs as well.

richard

Jodie2DQ2 Apprentice

I am sorry. It is www.glutenfreedrugs.com that I have the list for medications and such. And yes Nasonex is on there. Jodie

RiceGuy Collaborator
Oops, I wasn't paying close attention. I was talking about glutenfreedrugs.com, not glutenfreemeds.com. Yes, glutenfreemeds obviously is not actually being taken care of by anybody. However, Nasonex is listed as gluten-free at glutenfreedrugs as well.

richard

OK. That can explain a lot. If enough people mistakenly type in the wrong address, the site gets enough hits, and that's all they care about. There are domain names which are purposely misspelled to take advantage of typos too.

happygirl Collaborator
I am sorry. It is www.glutenfreedrugs.com that I have the list for medications and such. And yes Nasonex is on there. Jodie

The pharmacist who maintains the page has his contact info on there. Contact him with what you have learned.

Its hard to keep up with it - it may have been gluten free when he verified it.

  • 2 weeks later...
Lukalovescats Rookie

I spoke with someone from Nasonex today. What they told me is that they don't add any gluten and the ingredients they use don't contain gluten. That being said.... the ingredients come from other places and they have no guarantee of cross contamination from those sources. So they won't state that their products are gluten free. Most likely you won't get a reaction, however, I've had a reaction from a product that was manufactured on equipment that processed wheat.

ArtGirl Enthusiast
Most likely you won't get a reaction....

However, I did get a reaction. Apparently the incidence of cross contamination is real and probable with this product.

Lukalovescats Rookie

Right there with you. We won't be using it in our house anymore. I'm getting so tired of playing Russian Roulette with food and meds. Try to be so carefu, but....

Mtndog Collaborator

This makes me so mad!!! I just posted about Provigil having gluten too. what can we do to either get drug companies to stop using allergens or at least disclose that they contain gluten so you don't take it. If foods have to be labeled with allergens, why not drugs ESPECIALLY?

If anyone has any ideas about this, let me know.

ArtGirl Enthusiast
. I'm getting so tired of playing Russian Roulette with food and meds. Try to be so carefu, but....

That's why I've come to rely more and more on this forum. Some are really good with research and post their findings. Others find out the hard way (like me with this product) and also post their results.

I don't know how celiacs managed before the internet and these kind of resources. Made a LOT of phone calls, I expect.

  • 6 months later...
hermitgirl Contributor

When I called last month they said that the polysorbate 80 is made with wheat, and though they claim there is "no detectable amount of gluten in their product" they do not claim that nasacort aq is gluten free.

jerseyangel Proficient
When I called last month they said that the polysorbate 80 is made with wheat, and though they claim there is "no detectable amount of gluten in their product" they do not claim that nasacort aq is gluten free.

Makes perfect sense to me <_< Maybe a year or so (?) before I went gluten-free, my doctor at the time prescribed Nasonex for me and it caused pain under my ribs. At the time, I thought how odd that a nasal spray should cause that type of side effect. :unsure::rolleyes:

I even told my doctor about it, of course she had no idea why this would happen :blink: , but switched me to something else.

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. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

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

    • Total Members
      132,859
    • Most Online (within 30 mins)
      7,748

    Santa Don
    Newest Member
    Santa Don
    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

    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.