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This Is Insanity!


Betty Boop

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Betty Boop Rookie

I've just spent four hours trying to find a gluten-free shampoo and gluten-free makeup.

I am blown away by all that we celiacs have to do to find out if things are gluten-free!!!

I spoke to the FDA today and asked if there is anything we can do to speed up the process of getting all products (food, beauty products, soaps, lotions, etc.) labeled.

It is unfathomable to me that each one of us has to call multiple companies each day to find out what ingredients are contained in the item we either have or are thinking of buying. Talk about re-inventing the wheel! :blink:

Somehow, we need to change this. CELIACS UNITE! How do get the FDA to require allergy labeling? I know the FDA can't agree on what "gluten-free" means, but they could at least require all companies to list all ingredients that contain all allergens for us.

I'm sure it will all be in place in 20 years, but we need something to happen--yesterday.

Maybe all of us should call the FDA and ask what's being done. You know what they say...the SQUEAKY WHEEL GETS THE GREASE? ;)

Here's the number of the FDA:

1-888-463-6332

GOOD LUCK! :)


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ravenwoodglass Mentor

I would be happy if they just clearly labeled food. Rye, barley and oats need to be declared on a label even if they are in small amounts and don't even get me started on gluten in script and otc meds and supplements.

Meanwhile, Garneir Nutritioneste, Suave and Dove will clearly label gluten in their products. Giovanni and Burt's Bees are good if you are into organics. There are others of course.

If you do a board search there is a a couple long threads on gluten free cosmetics that will guide you.

Sweetea888 Newbie

I've just spent four hours trying to find a gluten-free shampoo and gluten-free makeup.

I am blown away by all that we celiacs have to do to find out if things are gluten-free!!!

I spoke to the FDA today and asked if there is anything we can do to speed up the process of getting all products (food, beauty products, soaps, lotions, etc.) labeled.

It is unfathomable to me that each one of us has to call multiple companies each day to find out what ingredients are contained in the item we either have or are thinking of buying. Talk about re-inventing the wheel! :blink:

Somehow, we need to change this. CELIACS UNITE! How do get the FDA to require allergy labeling? I know the FDA can't agree on what "gluten-free" means, but they could at least require all companies to list all ingredients that contain all allergens for us.

I'm sure it will all be in place in 20 years, but we need something to happen--yesterday.

Maybe all of us should call the FDA and ask what's being done. You know what they say...the SQUEAKY WHEEL GETS THE GREASE? ;)

Here's the number of the FDA:

1-888-463-6332

GOOD LUCK! :)

All the Aussie products are gluten free, and they are pretty much available everywhere.

Yup Apprentice

All the Aussie products are gluten free, and they are pretty much available everywhere.

Mary Kay for Makeup and the the girls at the MAC counter have a handy book they check into to see if the makeup is gluten free.

Gemini Experienced
I've just spent four hours trying to find a gluten-free shampoo and gluten-free makeup.

I am blown away by all that we celiacs have to do to find out if things are gluten-free!!!

I spoke to the FDA today and asked if there is anything we can do to speed up the process of getting all products (food, beauty products, soaps, lotions, etc.) labeled.

It is unfathomable to me that each one of us has to call multiple companies each day to find out what ingredients are contained in the item we either have or are thinking of buying. Talk about re-inventing the wheel! :blink:

Somehow, we need to change this. CELIACS UNITE! How do get the FDA to require allergy labeling? I know the FDA can't agree on what "gluten-free" means, but they could at least require all companies to list all ingredients that contain all allergens for us.

I'm sure it will all be in place in 20 years, but we need something to happen--yesterday.

Maybe all of us should call the FDA and ask what's being done. You know what they say...the SQUEAKY WHEEL GETS THE GREASE? ;)

I can honestly say I have had no problems figuring food out but am a cook so know food and the ingredients. I also eat almost no processed foods so that makes it so much easier. Make-up I do not screen as it cannot be absorbed through the skin. Lipstick is easy...there are many companies out there, once you start looking, which offer gluten-free lipstick and balms. Hand lotion was easy also or maybe I just lucked out!

For the few times I have had to take meds for anything, and that's rare, this was the area that needs fixing. If you have to take meds on an emergency basis, that could present a problem, unless a doctor is good enough to agree to inject the medication and then you don't have to worry about gluten. I have found that most of the meds I inquired about were gluten-free but it took a little homework to find that out.

Don't rely on the FDA for much of anything....they put a stranglehold on many things and push through the meds that are money makers, which end up being recalled because they kill people. :blink:

You will not be an expert at first but this all becomes pretty routine after a short while...if you put some work into it at first. There is a learning curve to living gluten-free successfully but it can be done. You'll get there and the frustration will diminish.

chasbari Apprentice

I can honestly say I have had no problems figuring food out but am a cook so know food and the ingredients. I also eat almost no processed foods so that makes it so much easier. Make-up I do not screen as it cannot be absorbed through the skin. Lipstick is easy...there are many companies out there, once you start looking, which offer gluten-free lipstick and balms. Hand lotion was easy also or maybe I just lucked out!

I am going to gently disagree on the make-up..especially if you are in the company of other celiacs who might be inclined to show any affection. I cannot get my wife to understand that if I want to give her a kiss on the cheek or whatever that any soap, shampoo or make-up she uses IS an issue for me.. not just lipstick. I have encountered problems with this.. just trying to add a different perspective. Also.. with my need to use stage make-up I know it is hard to avoid all mucosal membrane contact when dealing with putting on base and eye makeup. That pesky make-up seems to be able to wander everywhere it wasn't intended to go.

Gemini Experienced

I am going to gently disagree on the make-up..especially if you are in the company of other celiacs who might be inclined to show any affection. I cannot get my wife to understand that if I want to give her a kiss on the cheek or whatever that any soap, shampoo or make-up she uses IS an issue for me.. not just lipstick. I have encountered problems with this.. just trying to add a different perspective. Also.. with my need to use stage make-up I know it is hard to avoid all mucosal membrane contact when dealing with putting on base and eye makeup. That pesky make-up seems to be able to wander everywhere it wasn't intended to go.

I have no problems with a difference of opinion as this is a choice issue totally and people have different situations which may pose unique problems.

Most of the population does not wear stage make-up, which is much heavier than make-up people wear on an everyday basis. I have no experience with it so cannot make a comment other than to say that you have to do what works for you.

I routinely kiss other people on the cheek in the course of life and have never, ever had an issue with this. I am about as sensitive a celiac as they come and will become ill from minor CC yet make-up has never caused a problem. You really need to ingest it into your gut to cause a reaction so for those that have reported reactions, I would think that runs more in the line of a contact allergy, which would cause a reaction in small amounts. You would have to swallow make-up for a celiac reaction to occur so I can't imagine people are eating that much make-up off of a persons face! As far as soap is concerned, do people not rinse their faces well? Every celiac expert I have read information from states you do not have to use gluten-free soap, unless you have an allergy, because you rinse it off and don't swallow it. I never screen soap when out in a public restroom, or at home for that matter, and have never been remotely glutened by this practice as I rinse well with water. Ditto for washing dishes.

My point is that people need to use common sense and learn how the Celiac disease process works. This is the only way you will have the knowledge of living gluten-free successfully and not become ill all the time. I am not saying you aren't having reactions but when people tell me they have reactions from merely kissing someone's cheek, sounds more like an allergic reaction and this shouldn't be confused with an intolerance type reaction. People are different but a celiac reaction only occurs one way....if it doesn't get into your GI tract (mouth included), then you won't get sick that way. I would be

more concerned about regularly eating quantities of make-up than I would about becoming glutened. There are many people who suffer from allergies to make-up and it's not always a reaction to gluten either. I think if someone wants to go completely gluten-free, that's fine by me. Everyone is free to do whatever they want but those who are new to this disease need the correct information. Sometimes if you tell someone they will have a reaction if they wear non-gluten-free make-up, that'll stick in their head and they will expect a reaction to occur, when in fact, unless they ingest some, it won't. No need to create fear where it's not warranted. They need to learn to be careful, not overly fearful of having celiac disease.


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Betty Boop Rookie

Thanks so much, y'all. Great ideas. B)

BethM55 Enthusiast

I would suspect lip products and toothpastes need to be gluten-free, since they are often ingested. I just emailed the Desert Essence company, as I use their toothpaste and lip balm. If and when they reply, I'll post it here.

chasbari Apprentice

I have no problems with a difference of opinion as this is a choice issue totally and people have different situations which may pose unique problems.

Most of the population does not wear stage make-up, which is much heavier than make-up people wear on an everyday basis. I have no experience with it so cannot make a comment other than to say that you have to do what works for you.

I routinely kiss other people on the cheek in the course of life and have never, ever had an issue with this. I am about as sensitive a celiac as they come and will become ill from minor CC yet make-up has never caused a problem. You really need to ingest it into your gut to cause a reaction so for those that have reported reactions, I would think that runs more in the line of a contact allergy, which would cause a reaction in small amounts. You would have to swallow make-up for a celiac reaction to occur so I can't imagine people are eating that much make-up off of a persons face! As far as soap is concerned, do people not rinse their faces well? Every celiac expert I have read information from states you do not have to use gluten-free soap, unless you have an allergy, because you rinse it off and don't swallow it. I never screen soap when out in a public restroom, or at home for that matter, and have never been remotely glutened by this practice as I rinse well with water. Ditto for washing dishes.

My point is that people need to use common sense and learn how the Celiac disease process works. This is the only way you will have the knowledge of living gluten-free successfully and not become ill all the time. I am not saying you aren't having reactions but when people tell me they have reactions from merely kissing someone's cheek, sounds more like an allergic reaction and this shouldn't be confused with an intolerance type reaction. People are different but a celiac reaction only occurs one way....if it doesn't get into your GI tract (mouth included), then you won't get sick that way. I would be

more concerned about regularly eating quantities of make-up than I would about becoming glutened. There are many people who suffer from allergies to make-up and it's not always a reaction to gluten either. I think if someone wants to go completely gluten-free, that's fine by me. Everyone is free to do whatever they want but those who are new to this disease need the correct information. Sometimes if you tell someone they will have a reaction if they wear non-gluten-free make-up, that'll stick in their head and they will expect a reaction to occur, when in fact, unless they ingest some, it won't. No need to create fear where it's not warranted. They need to learn to be careful, not overly fearful of having celiac disease.

My common sense plus daily experience lets me know exactly how the disease "works." That plus lots of education in nutrition, physiology, reading here and daily observation. I know the difference between an allergen and a trigger for an autoimmune response. Been dealing with it my whole life. Some are more sensitive and react differently than others. I am sure glad you have it all figured out.

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