NeuroTalk Support Groups - Anyone else see this?

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- - Anyone else see this? (https://www.neurotalk.org/gluten-sensitivity-celiac-disease/2995-else.html)

Anyone else see this?

From Clan Thompson newsletter:

Quote:

Hi, I just tried to get information from GlaxoSmithKline on whether their product Flonase is gluten free and was told they could not give that information out to consumers, only to healthcare professionals. So today I went to my pcp to help me find a gf allergy medication. She said she couldn't help me out with that as she has no idea what I'm talking about. Then she asked me if I really thought that the tiny amount of gluten present in just one pill would affect me (she was insisting that amount ingested is no big deal). Lastly, she told me that Flonase is not taken orally therefore, it does not matter if gluten is in it, because it won't be going into my digestive track.

First, it's just disturbing that GSK will not give out gluten info to consumers and that I'm left having to rely on a PCP who really knows very little about celiac disease! But my main question is can a small amount of gluten in a medication (just one pill) cause a reaction? And secondly, is the information my pcp provided about Flonase erroneous (that medication taken through the nose would not cause a gluten reaction)?

I left my doctors office today feeling like a hypochondriac and at the same time wondering whether this woman really knows anything about celiac disease! Thanks, Chantal

Dear Chantal, After doubling over in abdominal pain for 24 hours after trying a digestive enzyme given to me by a dentist not knowing it had barley malt enzyme in it, the answer is yes!! GSK is out of line in not dealing with consumers, and yes any route into the body to react with the immune system: inhaled into lungs, nose, eaten, or on skin or scalp can cause gluten reactions.

We have to accept that the medical profession is dreadfully behind the understanding of these issues.

I would like to see you pursue a dietary regimen that might indeed be less mucus forming or immune stimulating that itself might obviate the need for flonase. This is how I got off that medicine. Be conscious about what foods seem to cause nasal congestion and try to limit or avoid them. generally they are dairy, grains, some nuts, and legumes, among few others.

Good luck. Dr. Ken Fine

Good grief! They won't tell you?

Yeah, that's about as ludicrous of an answer as I can imagine.

:confused: :confused: :confused:

Rachel

Thats when the words "potentially fatal allergy" come in handy. :D (even if its an exageration) You should read my commentary on getting corn andgluten free tylenol. :D

I get a lot of "ask your dr" and then from my dr "Just call around."

I also once got a "How did you get this number?" (it was for medical professionals only, LOL, but hey...they got me connected to someone who could answer my question right away.)

I've heard that the new labelling laws do not extend to medicine. And that pharmaceutical companies get more leeway for proprietary formulas, but, I can't verify that.

Well, if they don't want to be bothered, then they should be providing a resource with the information.

At least we have figured this out at the dentist. She just doesn't use "product" on my daughter's teeth.

Cara

Flonase ingredients

I got curious, since I use Flonase myself, and looked around on the internet. I found the ingredients pretty quickly:

http://dailymed.nlm.nih.gov/dailymed...fo.cfm?id=1283

Quote:

FLONASE Nasal Spray, 50 mcg is an aqueous suspension of microfine fluticasone propionate for topical administration to the nasal mucosa by means of a metering, atomizing spray pump. FLONASE Nasal Spray also contains microcrystalline cellulose and carboxymethylcellulose sodium, dextrose, 0.02% w/w benzalkonium chloride, polysorbate 80, and 0.25% w/w phenylethyl alcohol, and has a pH between 5 and 7.

It doesn't look like there is any gluten in it.

Getting one bad answer from a customer service representative doesn't surprise me. I figure I just need to find the right person to talk to.

Anyways, it doesn't look like it's top secret information.

Claire

Dextrose is one ingredient that may be made of wheat. This site mentions that the although there may be wheat protein in the dextrose , it is within the 200ppm codex guideline.

The "safe" amount of gluten is still being debated.

http://www.efsa.europa.eu/en/science...nions/681.html

What the ingredients are actually made of may be "secret".
Anne

microcrystalline cellulose can also be made from wheat (or corn, or any fibrous plant) although originally it was made from trees.

I wanted to contribute something valid to this thread but I can't.:o

I did, however, want to say that I'm aghast and appalled at this behaviour from a medical company that is supposed to be selling us something to keep us healthy! :eek: :mad:

Quote:

Originally Posted by mistofviolets (Post 21765)

microcrystalline cellulose can also be made from wheat (or corn, or any fibrous plant) although originally it was made from trees.

I'd like to see a reference of this. I did a quick search on the internet, and found microcrystalline cellulose to be made of wood or cotton fiber. Here are a couple of websites I found:

http://www.nbent.com/details.htm

http://www.aapspharmscitech.org/view.asp?art=pt030211

And from Frontier's website:

Quote:

Microcrystalline cellulose - Microcrystalline cellulose is naturally occurring cellulose that has been purified. It is found in fruits and vegetables. Commercially produced MCC is isolated from wood pulp, since this is the most economical source. The cellulose is washed, filtered, re-slurried and then spray-dried into its final form. It is considered a safe, stable ingredient and is used extensively in the pharmaceuticals and in foods. At Frontier, we use it in some products such as chili powder, salt and seasoning mixes as an anti-caking agent.

It seems that most dextrose is made from corn. So, if you have a corn allergy, you might have a problem. Here's an interesting website with an opinion on dextrose derived from wheat and it's affect on those with celiac disease:

http://www.efsa.europa.eu/en/science...nions/681.html

Oops :o ! It's the same reference that Anne provided. This is specific to the one company in Europe that proposed to use wheat derived dextrose in their products. It's not to say that wheat derived dextrose is used in Flonase.

I found it on the Food Safety Risk Analysis Clearinghouse website from the University of Maryland. More interesting stuff here.

Anyways, I think the real problem comes down to pharmaceutical labelling laws. The food allergy labelling should apply to prescription drugs as well!

Claire

try "some sinus tips", instead of Flonase:

Hi All,

My husband once tried Flonase, and he found it VERY IRRITATING. He stopped using the Flonase very soon after he had first tried it. Then, years later, he came out positive, on Dr. Fine's EnteroLab stool sample testing for gluten sensitivity.

In between his trying the Flonase, and his discovering that he is (non-Celiac) gluten sensitive, I came up with "some sinus tips", which I had mostly found from a good book called "Sinus Survival" by Dr. Robert Ivker.

I put these (some sinus tips) into my website, (Can't Breathe? Suspect Vocal Cord Dysfunction!) on webpage 10. Scroll down to see Appendix A, on webpage 10, at http://cantbreathesuspectvcd.com/page10.html

If these sinus tips help anyone to be able to get off the Flonase (my tips are drug-free), then they won't have to worry about whether there is or isn't gluten in this particular product!

Below the sinus tips, you'll see Appendix B (some gastric reflux tips), where I try to tell people about food protein sensitivities (gluten, casein, corn, soy, etc.), and below this, are some ergonomics tips (which, like with the other tips, I also learned from other people).

At a VCD/vocal cord dysfunction conference in Denver (sponsored by Nat'l Jewish Medical & Research Center), that I attended, one of the speakers said that he thinks most sinus problems come from GASTRIC REFLUX problems. And, gluten sensitivity & other food protein sensitivities, CAN AND DO produce gastric reflux!

So, in my opinion, and from my own experiences (and others' too), I believe that by finding and eliminating foods that one is sensitive to, the reflux should lessen, and this should improve one's sinus conditions.

And, by removing bad things in the air that are also irritating the sinuses, this should also decrease the supposed "need" for Flonase, etc.

And, a good ENT may also find other problems that need to be addressed, regarding sinus problems.

However, I also agree with what everyone else wrote, and to me, it's sickening that these mega drug companies won't come clean, and tell anyone who asks, about exactly what's in their products, and exactly what the sources of their ingredients, etc. are!

Carol
http://cantbreathesuspectvcd.com