Losing It Over Toiletries

[Lisa16]

Maybe you saw my recent posts on cosmetics and toiletries. I didn't think about them until my fifth month of gluten-free-- mostly b/c I was hearing things like "you can't absorb it through the skin. Don't worry."

Then I used a lipgloss with tocopherol and got dh blisters on my arm (worse case yet) and started writing companies and throwing away products. I threw away my centrum vitamins and went through everything that could conceivably cause a reaction-- even nail polish.

I started feeling even better and what I took to be "post-gluten-free healing D that will eventually resolve" went away completely. Before my dx, I always felt like I had a swirling black hole where my stomach should be. That feeling is now gone and I can feel my strength returning.

But I really had a kind of breakdown over the toiletries.

Out of over 40 companies, maybe only half responded and many of those responses were wrong or I got a run around. I discovered there is a big difference being a product not having any obvious gluten ingredients and that product actually being gluten free. I discovered that food and cosmetics/toiletries are regulated differently in terms of how the ingredients must list. Maltodextrin/ dextrin is not necessarily wheat free in toiletries, for example. Starch sources don't have to be specifiied.

I bought a gluten-free hypo-allergenic cream (Weleda) that other celiacs apparently can use and got a rash. I ordered a bottle of shampoo (and other products) from a company (Caudalie) that stated, unequivocally, that all of their products were gluten-free only to find wheat protein clearly listed in the ingredients. Now I distrust products from both companies. It is really frustrating.

So here's where the coping bit comes in. I am feeling very unsafe. If it might be in the alcohol (that seems to be the case with the Weleda cream despite the "distillation takes it out" claim) or if the company doesn't even know what gluten is, then what are you supposed to do???? It is a catch 22. You cannot try a product (or even a particular tube of something, say-- even when you have used it before)without risking a reaction and my reactions can be bad. And even if somebody else can use that product, perhaps I cannot.

I actually get to feeling like the gluten is everywhere and that I cannot avoid it. It is really overwhelming. I feel like I cannot get away from it and that world is suddenly quite hazardous and I don't like feeling this way at all. It seems almost like a kind of paranoia (or at least hyper-vigilance) and despair.

It is so much easier with the food. But I also want to have clean hair with a nice finish and clear skin, fewer wrinkles, soft hands and pretty nails. Is that too much to ask? But it seems like I might have to compromise or give some of those things up. Honestly, I am not having luck with some of the natural products at all. And some of the supermarket shampoos are so heavily perfumed or such heavy formulations. I just can't seem to get it right.

Lisa

[YoloGx]

Maybe you saw my recent posts on cosmetics and toiletries. I didn't think about them until my fifth month of gluten-free-- mostly b/c I was hearing things like "you can't absorb it through the skin. Don't worry."

Then I used a lipgloss with tocopherol and got dh blisters on my arm (worse case yet) and started writing companies and throwing away products. I threw away my centrum vitamins and went through everything that could conceivably cause a reaction-- even nail polish.

I started feeling even better and what I took to be "post-gluten-free healing D that will eventually resolve" went away completely. Before my dx, I always felt like I had a swirling black hole where my stomach should be. That feeling is now gone and I can feel my strength returning.

But I really had a kind of breakdown over the toiletries.

Out of over 40 companies, maybe only half responded and many of those responses were wrong or I got a run around. I discovered there is a big difference being a product not having any obvious gluten ingredients and that product actually being gluten free. I discovered that food and cosmetics/toiletries are regulated differently in terms of how the ingredients must list. Maltodextrin/ dextrin is not necessarily wheat free in toiletries, for example. Starch sources don't have to be specifiied.

I bought a gluten-free hypo-allergenic cream (Weleda) that other celiacs apparently can use and got a rash. I ordered a bottle of shampoo (and other products) from a company (Caudalie) that stated, unequivocally, that all of their products were gluten-free only to find wheat protein clearly listed in the ingredients. Now I distrust products from both companies. It is really frustrating.

So here's where the coping bit comes in. I am feeling very unsafe. If it might be in the alcohol (that seems to be the case with the Weleda cream despite the "distillation takes it out" claim) or if the company doesn't even know what gluten is, then what are you supposed to do???? It is a catch 22. You cannot try a product (or even a particular tube of something, say-- even when you have used it before)without risking a reaction and my reactions can be bad. And even if somebody else can use that product, perhaps I cannot.

I actually get to feeling like the gluten is everywhere and that I cannot avoid it. It is really overwhelming. I feel like I cannot get away from it and that world is suddenly quite hazardous and I don't like feeling this way at all. It seems almost like a kind of paranoia (or at least hyper-vigilance) and despair.

It is so much easier with the food. But I also want to have clean hair with a nice finish and clear skin, fewer wrinkles, soft hands and pretty nails. Is that too much to ask? But it seems like I might have to compromise or give some of those things up. Honestly, I am not having luck with some of the natural products at all. And some of the supermarket shampoos are so heavily perfumed or such heavy formulations. I just can't seem to get it right.

Lisa

I relate with your frustration. I recently got rid of my creams and soaps that have vitamin E in them and once again notice an improvement. I am discovering that the headaches that have plagued me for many years seem to be almost entirely gluten related even though chiropractic and yoga has also helped counteract them. The inflammation seems to be gluten caused. Ditto with a skin condition I have had and long wondered what caused it.

Fortunately I have found Desert Essence Organics Hair Care is Gluten Free as is their Organics Body Care Hand and Body Lotion. Their Jojoba oil is nice too like for around the eyes and on the lips.

I have found there are a number of soaps that are just fine too--even Trader Joe's Tea Tree Soap and Kirk's original Coco Castile Soap. It seems the simpler the formula the better.

As far as cosmetics go, I have thrown everything out and started using the Afterglow Cosmetics advertised here on Celiac.com with no problems thus far. You have to order their cosmetics online, however its no big deal. The owner of that company apparently has celiac too.

I haven't tried to use any nail polish. I wonder about that since I had noticed even years ago nail polish generally negatively affected me.

Hope this helps.

Bea

[RiceGuy]

I kinda know what you mean, as I've resorted to use my gluten-free shampoo for laundry soap. Even the detergents which are known to be gluten-free generally have all sorts of stuff that I seem to react to. Forget dryer sheets - I'll take a few static-electric shocks over getting sick for days on end.

Anyway, here are some companies that do make some decent gluten-free stuff.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I'm sure other members will have some great recommendations for you too.

[babysteps]

I am sensitive to "fragrance", not sure if that's gluten-related (wheat often used in fragrance processing), or just another quirk of mine...

at any rate, DHS (made by person & covey) makes a gluten-free, fragrance-free shampoo & conditioner that helped me a lot (the shampoo is even dye free; the conditioner has coloring)

Kirkman labs has a gluten-free shampoo & conditioner, but not sure if is fragrance free.

There must be other fragrance free hair products out there...I stopped when I found DHS 'cause that worked for me.

Good luck on rooting out the last few contaminants from your toiletries!

[rpf1007]

It is frustrating. I was looking for spray leave-in conditioner just yesterday and there was only one that didn't have some kind of wheat protein. I was glad I found one...but it is so annoying!

[YoloGx]

I kinda know what you mean, as I've resorted to use my gluten-free shampoo for laundry soap. Even the detergents which are known to be gluten-free generally have all sorts of stuff that I seem to react to. Forget dryer sheets - I'll take a few static-electric shocks over getting sick for days on end.

Anyway, here are some companies that do make some decent gluten-free stuff.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I'm sure other members will have some great recommendations for you too.

I threw out my Kiss My Face products due to the vitamin E. Was I wrong here? Seems to have helped me in any case to get rid of it. Sad but true since otherwise they are quite nice creams and soaps.

[babysteps]

It is frustrating. I was looking for spray leave-in conditioner just yesterday and there was only one that didn't have some kind of wheat protein. I was glad I found one...but it is so annoying!

would you mind sharing the brand?

And is there any fragrance in it?

Thanks!

I haven't been using a leave-in conditioner since going gluten-free, but summer is coming and it would be nice

or I will consider diluting my regular (fragr free, gluten-free) conditioner and putting it in a spray bottle...

[jerseyangel]

I am sensitive to "fragrance", not sure if that's gluten-related (wheat often used in fragrance processing), or just another quirk of mine...

I'm finding that after almost 3 years gluten-free this is the case for me too. I used to be able to use Dove or Garnier, but as of late they cause tention-type headaches and a general feeling of being unwell. I have switched to California Baby shampoo and those symptoms resolved almost immediately.

I threw out my Kiss My Face products due to the vitamin E. Was I wrong here?

No, I don't think you were wrong. I've contacted a few companies, some high end, some organic that use excellent ingredients and so many times they have no idea where the vitamin E is sourced. To be fair, Burt's Bee's will say their's comes from soy, but they seem to be the exception.

I avoid tocopherols and now am on the hunt for fragrence free/gluten-free products. Pretty soon I'll be down to water only

[Death-Cab-Doll]

Wow, Lisa. You just saved me a lot of time by writing this post. This is EXACTLY what I have been dealing with lately and it is SO FRUSTRATING! I actually had a company call me back and say, "we can not say for sure if our product is Gluten-Free because the Citric Acid may have traces of corn." Huh? Do you even know what gluten is???

Anyway, I just had to tell you that I am right there with you and I have been doing my research and plan to make a list very soon. Not a food list but a list of cosmetics, lotions, shampoos, soaps, dish detergents, etc... that are "safe".

Overwhelmed in California,

Melanie

Maybe you saw my recent posts on cosmetics and toiletries. I didn't think about them until my fifth month of gluten-free-- mostly b/c I was hearing things like "you can't absorb it through the skin. Don't worry."

Then I used a lipgloss with tocopherol and got dh blisters on my arm (worse case yet) and started writing companies and throwing away products. I threw away my centrum vitamins and went through everything that could conceivably cause a reaction-- even nail polish.

I started feeling even better and what I took to be "post-gluten-free healing D that will eventually resolve" went away completely. Before my dx, I always felt like I had a swirling black hole where my stomach should be. That feeling is now gone and I can feel my strength returning.

But I really had a kind of breakdown over the toiletries.

Out of over 40 companies, maybe only half responded and many of those responses were wrong or I got a run around. I discovered there is a big difference being a product not having any obvious gluten ingredients and that product actually being gluten free. I discovered that food and cosmetics/toiletries are regulated differently in terms of how the ingredients must list. Maltodextrin/ dextrin is not necessarily wheat free in toiletries, for example. Starch sources don't have to be specifiied.

I bought a gluten-free hypo-allergenic cream (Weleda) that other celiacs apparently can use and got a rash. I ordered a bottle of shampoo (and other products) from a company (Caudalie) that stated, unequivocally, that all of their products were gluten-free only to find wheat protein clearly listed in the ingredients. Now I distrust products from both companies. It is really frustrating.

So here's where the coping bit comes in. I am feeling very unsafe. If it might be in the alcohol (that seems to be the case with the Weleda cream despite the "distillation takes it out" claim) or if the company doesn't even know what gluten is, then what are you supposed to do???? It is a catch 22. You cannot try a product (or even a particular tube of something, say-- even when you have used it before)without risking a reaction and my reactions can be bad. And even if somebody else can use that product, perhaps I cannot.

I actually get to feeling like the gluten is everywhere and that I cannot avoid it. It is really overwhelming. I feel like I cannot get away from it and that world is suddenly quite hazardous and I don't like feeling this way at all. It seems almost like a kind of paranoia (or at least hyper-vigilance) and despair.

It is so much easier with the food. But I also want to have clean hair with a nice finish and clear skin, fewer wrinkles, soft hands and pretty nails. Is that too much to ask? But it seems like I might have to compromise or give some of those things up. Honestly, I am not having luck with some of the natural products at all. And some of the supermarket shampoos are so heavily perfumed or such heavy formulations. I just can't seem to get it right.

Lisa

[jerseyangel]

Here is a company I like very much--I use their bar soap and moisturizer. Just re-ordered the soap, and thought I'd share

Open Original Shared Link

This company is also very good. I like their hand cream, facial moisturizer, lip products and mascara--

Open Original Shared Link

[Lisa16]

Thank you for the links and product suggestions. I will check out and try each and every one. I appreciate the people on the forum so much-- it is very moving to see the support and empathy here. I do not know what I would do without you.

Some fragrances are so powerful that they provoke a migraine in me-- the part about the fragrance processing is extremely interesting. I am going to look into that some more-- I think it explains some topical reactions too. And dryer sheets? I never could use them, even before. No fabric softener either. And dry cleaning fluid? Hah! I once got so sick from that that I never did dry cleaning again. It was like a burn (a chemical burn, I guess).

Oh yes-- I threw out the leave in conditioner too-- the hairpsray and the volumizing mousse. And everything with vitamin e that I could find. I scoured the shelves in the health food stores and supermarkets. I went to Sephora and Ulta. I talked to my haridresser-- everything she had contained gluten. Everything. I wrote the Skinstore (I got bupkis back, BTW.) I dropped over a hundred dollars, only to throw/ give things away again. I too seem to be more even sensitive since going gluten free-- or maybe I am just more aware, now that I no longer have the swirling black hole instead of a stomach.

It is heartening to realize that we are not alone in our experiences of this disease and its aftermath.

I am not going to give up on this. We all deserve this information and we all deserve to have nice products that do a good job without making us sick. We have certainly suffered enough this time around!

Melanie-- I will happily add my list to yours. Keep up the good fight!

I will keep writing to these companies and posting the answers I get here.

Lisa

[rpf1007]

I found Pantene Pro V leave in conditioner spray. I'm honestly not sure about the fragrance though. I'm at work..I'll have to check when I get home.

[trcn]

I found Pantene Pro V leave in conditioner spray. I'm honestly not sure about the fragrance though. I'm at work..I'll have to check when I get home.

"Enjoy" conditioning spray (only in salons... you'd have to find a salon near you) is gluten free. Also their hairsprays (I use and am very sensitive to gluten in hair products).

ALL Giovanni hair products (sold at Whole Foods) are gluten free. The 50/50 shampoo and conditioner are what I use and my scalp and hair are on the mend in a huge way!

Good luck.

Tracy

[RiceGuy]

I threw out my Kiss My Face products due to the vitamin E. Was I wrong here? Seems to have helped me in any case to get rid of it. Sad but true since otherwise they are quite nice creams and soaps.

I don't know, but the soap I use doesn't have any vitamin E added. It's just three ingredients - no fragrance.

The ingredients are:

Saponified Olive Oil, water, Sodium Chloride.

But other stuff they make do have various ingredients which might be questionable. I only use their pure olive oil soap.

[Takala]

You don't have to use a "shampoo" as a shampoo, for example, if you find a liquid body wash that's safe or even a bar soap that works, you can use that while searching for the perfect "shampoo."

For hair conditioning, I always use apple cider vinegar diluted with water 1 part vinegar, 7 parts water. You can pour it in a plastic cup and then pour it over your clean rinsed hair in the shower (don't rinse it out) or you can put it in a spray bottle and spritz it on your hair after you've towel dried.

This corrects the pH of the hair from the alkaline soap and detangles it and makes it softer. A very simple thing that works very well.

If that is not enough, put a tiny dab (like half a pea for shorter hair, pea sized for longer) of coconut oil in your palm, spread it around, and then rub your hand over your wet hair and leave it in. You can also use coconut oil as a moisturizer.

Once I stopped eating wheat my thinning hair came back again, which was a nice surprise, and it stopped being so dry and brittle, which was even better. ( I don't blow dry my hair as we live in a dry climate anyway, if I am in a huge hurry, I might just blow dry a minute on the underside to fluff it up and hasten air drying.)

You can also try using aloe jel on your hair for moisture. There is also pure shea butter which would be used like the coconut oil.

[gabby]

Lemon juice conditioner:

-use a plastic juice jug or large empty water bottle

-just before having a shower, cut a large fresh lemon in half. Put one half in the fridge. Squeeze the juice out of the other half, and strain out the pulp. Add the juice to the jug or water bottle and fill with very warm water. Then shake it all up.

-have your shower and wash your hair. Then rinse your hair and body thoroughly with water. Turn off the water.

-Take the lemon mixture and slowly pour over your hair, making sure to work it in. Also let the lemon water go all over your body to help soften your skin.

Do not rinse it off. Towel dry yourself and your hair as usual.

As for hand creams and lip gloss: I don't have the links, but if you do a google search on cocoa butter hand cream homemade recipe, and cocoa butter lip gloss recipe, you'll come up with all sorts of neat things to make where you control the ingredients.

Good luck!

[gabby]

Forgot to add: if you don't like the chocolatey smell of cocoa butter, you can substitute avocado butter or coconut butter.