Soaps, Shampoo, And Other Personal Care Products

[radgirl]

This may sound ignorant, but what is the purpose of watching for gluten in our personal care products like shampoo, conditioner, soap, etc....? It is because we may ingest the gluten proteins? Can someone please explain this to me.

[lfij]

This may sound ignorant, but what is the purpose of watching for gluten in our personal care products like shampoo, conditioner, soap, etc....? It is because we may ingest the gluten proteins? Can someone please explain this to me.

ok, if you have DH, there is a purpose, but if you just have regular old celiac, unless you are going to ingest a product, i.e. playdough, hand lotion, hand soap, you don't really have to worry. Some people are paranoid. It is a personal choice. I don't have DH, and i don't drink my shampoo, so i dont' worry about it. but, things like lipstick and foundation that could easily get in your mouth should be looked into, i.e. some chapsticks have wheat germ oil in it. But, really, with just plain celiac, if you're not going to digest it, it doesn't matter. and now, you've opened up the floodgates bc there are two conflicting views on this one lol. And, nothing you ask on here is ignorant bc everyone on here has probably asked the same question before you! (I sure have!)

[Guest Doll]

I personally don't drink my shampoo!

[darlindeb25]

Ok, I do not drink my shampoo either, I do however, wash my hair in the shower. It is very rare when a person can wash their hair and rinse it without getting some water on their lips and even in their mouth. Oops, you could have just glutened yourself! Conditioners always are telling us how good they will make our hair feel and how can they do that? By staying in our hair and if they stay in our hair, then when we brush our hair, or even touch our hair throughout the day, then yup, we have gluten on our hand and can potentially touch something we will eat. Same thing goes for lotions, we put them on our skin, so anytime we touch that skin, it's on our hands and therefore a possible chance of getting to our mouth. It's not about being paranoid, it's about being safe.

I went gluten-free 7 yrs ago. In the beginning, I didn't think about the things I didn't eat. It is true, all celiacs are not alike, there are different levels of the "just how much bothers who" or maybe it's just the fact that some of us do not always know we have been glutened. After 2 yrs of being gluten-free, I then developed a skin intolerance too. If wheat touches my skin now, it's an instant burn, 5 yrs ago, it was hives.

Some people are paranoid. It is a personal choice. I don't have DH, and i don't drink my shampoo, so i dont' worry about it.

It is a personal choice, yet hardly from being paranoid. It all comes down to how safe you want to feel--I am not taking any chances.

[ravenwoodglass]

Ok, I do not drink my shampoo either, I do however, wash my hair in the shower. It is very rare when a person can wash their hair and rinse it without getting some water on their lips and even in their mouth. Oops, you could have just glutened yourself! Conditioners always are telling us how good they will make our hair feel and how can they do that? By staying in our hair and if they stay in our hair, then when we brush our hair, or even touch our hair throughout the day, then yup, we have gluten on our hand and can potentially touch something we will eat. Same thing goes for lotions, we put them on our skin, so anytime we touch that skin, it's on our hands and therefore a possible chance of getting to our mouth. It's not about being paranoid, it's about being safe.

I went gluten-free 7 yrs ago. In the beginning, I didn't think about the things I didn't eat. It is true, all celiacs are not alike, there are different levels of the "just how much bothers who" or maybe it's just the fact that some of us do not always know we have been glutened. After 2 yrs of being gluten-free, I then developed a skin intolerance too. If wheat touches my skin now, it's an instant burn, 5 yrs ago, it was hives.

It is a personal choice, yet hardly from being paranoid. It all comes down to how safe you want to feel--I am not taking any chances.

I totally agree with this. In addition gluten can be absorbed by and effect mucus membranes this includes in the mouth, eyes, nose and for us ladies the 'personal areas'. Some countries will use a gluten suppository and then biopsy the rectal tissue 3 hours later to diagnose us and there is currently a form of testing that would be done by using the mucous membranes in the mouth that is in the works. In light of this and the fact that Celiac is an autoimmune reaction and thus can be systemic not only gut it is a very good thing to be 'paranoid'. I consider myself lucky to have DH and severe neuro symptoms when glutened, this became most obvious once I had cleared ALL gluten out of my personal products as well as foods. For me the reaction is obvious and far from being paranoid.

[kbtoyssni]

Some people are paranoid.

I wouldn't consider myself paranoid I think of it as one more risk, one more opportunity for me to accidentally ingest gluten. And this is a risk I can easily avoid. I'm going to save my risks for things like restaurants.

I'm a huge hair twirler so I know if there were gluten in my shampoo, I'd get it on my hands during the day. I'm also eat most of the day so there's a high likelyhood that I'm going to eat right after I touch my hair and I don't always wash my hands if I'm just snacking at my desk.

[radgirl]

Thank you everyone for your posts. I will post more soon. Great insight!

[jerseyangel]

I've been gluten-free for 2 years now, and am very sensitive. I would not describe myself as paranoid just because I don't want to be ill.

I have definately been glutened by sunscreen. I have also gotten sick by lip products that contained vitamin E (not all vit E is from wheat, but it can be, and I've found that some companies have no idea where theirs comes from). I eat very carefully, prepare all of my own foods and never eat out.

I was undiagnosed (actually, continually misdiagnosed) and ill for over 20 years. After finally being diagnosed, I discovered several other intolerances. We're all different and come to this with different situations.

There is no way I would use personal products that contained gluten. Why would I want to bathe in or slather myself with the very thing that sets off an autoimmune reaction. True, you have to ingest it, but since a molecule seems to do it for me, there's a very good chance enough will make it to my mouth for me to cause a problem.

In other words, when I shower, I do not want to have to be careful not to gluten myself.

I also agree with what Ravenwood said--I don't think everything there is to know about this has been discovered yet. All I know is what makes me sick, and I do whatever I can to avoid it.

What others do is their business. I'm not a doctor, a scientist, or an expert of any kind. I share what works for me--much of it learned through trial and error.

[sunshinen]

I didn't believe I had to watch my shampoo. Until I switched brands (from one that turned out to be gluten free anyway). I started getting sick again and could not figure out what it was. Finally I realized the timing was consistent with when I had switched shampoos. I went back to the old brand and got better. Being stubborn, I tried the new shampoo again a few weeks into feeling better... and got sick again.

Sigh.... the longer I am on this diet, the more I learn that I am one of the ultra sensitive types. I don't always react that day, but when little bits sneak in in some way, I start to feel fatigued and achy again. I get stricter with something I thought was just others being paranoid or more sensitive than I would be (wishful thinking), and I start to feel better. Some people apparently are not that sensitive. I'm happy for them. Others of us have learned the hard way that we have to be way more careful than we first believed.

The first year for me was largely one big lesson-learned after another. For me, I gotta live ridiculously careful of gluten. This is MUCH better than living sick and miserable and putting myself at risk for cancer and other autoimmune conditions. The difference in my quality of life is night and day. It is such a hassle. I HATE being high-maintenance, especially about food and shopping. But it is definitely worth it for how much better I feel when I pay attention to every stupid little detail than when I eat strictly gluten-free but don't worry about all the other stuff. The cross contamination and other stuff adds up fast to me feeling sick again. When I'm careful, ultra extraordinarily careful, I feel spectacular.

[lfij]

I totally agree with this. In addition gluten can be absorbed by and effect mucus membranes this includes in the mouth, eyes, nose and for us ladies the 'personal areas'. Some countries will use a gluten suppository and then biopsy the rectal tissue 3 hours later to diagnose us and there is currently a form of testing that would be done by using the mucous membranes in the mouth that is in the works. In light of this and the fact that Celiac is an autoimmune reaction and thus can be systemic not only gut it is a very good thing to be 'paranoid'. I consider myself lucky to have DH and severe neuro symptoms when glutened, this became most obvious once I had cleared ALL gluten out of my personal products as well as foods. For me the reaction is obvious and far from being paranoid.

you have to digest gluten to be glutened. you are right about your nose and mouth, bc you can ingest things and they will possibly make it down to your gut. However, i strongly doubt your reproductive system is connected to your digestive system.

[loraleena]

Ok here is a question I haven't seen asked before. I am using a all natural unbleached maxi pad. After reading the back it talked about using some form of wheat pulp for absorbency. Could this be a problem. I don't have DH.

[angel-jd1]

Ok, I do not drink my shampoo either, I do however, wash my hair in the shower. It is very rare when a person can wash their hair and rinse it without getting some water on their lips and even in their mouth. Oops, you could have just glutened yourself! Conditioners always are telling us how good they will make our hair feel and how can they do that? By staying in our hair and if they stay in our hair, then when we brush our hair, or even touch our hair throughout the day, then yup, we have gluten on our hand and can potentially touch something we will eat. Same thing goes for lotions, we put them on our skin, so anytime we touch that skin, it's on our hands and therefore a possible chance of getting to our mouth. It's not about being paranoid, it's about being safe.

I went gluten-free 7 yrs ago. In the beginning, I didn't think about the things I didn't eat. It is true, all celiacs are not alike, there are different levels of the "just how much bothers who" or maybe it's just the fact that some of us do not always know we have been glutened. After 2 yrs of being gluten-free, I then developed a skin intolerance too. If wheat touches my skin now, it's an instant burn, 5 yrs ago, it was hives.

It is a personal choice, yet hardly from being paranoid. It all comes down to how safe you want to feel--I am not taking any chances.

I also do not drink my shampoo. I also do not consider myself "paranoid" because I choose to use gluten safe personal care products. I look at it as "why add another hazard" when I could just use things that are safe and eliminate any question or chance of getting glutened.

I know that I have longer finger nails....lotions and such can easily get under them and hide. If I then go to eat something..hands in mouth....BAM...it's a glutening. Why risk it?

In the shower.......I don't drink the soap or shampoo....however water does get into my mouth occasionally or even the occasional stray soap bubble....BAM....a glutening. Why risk it?

To me, it just isn't worth wondering if my soap or shampoo "got me". I just use gluten free and don't have to worry about that sort of thing.

As far as mucous membranes go............I know that many medications are given where mucous membranes can absorb them. For example, if you for some reason can not take your birth control orally (like you are puking up a storm) you can insert it vaginally and it will be absorbed that way. Obviously the mucous membranes are not directly connected to our small intestines, however until there is further research on the subject saying that there is 100% no risk of any complications(unless someone can provide me with some current research) I think I will stray away from gluten containing things even around my mucous membranes. (ie..no gluten around the hoohaa )Why risk it?

This is my opinion

-Jessica

[lfij]

I also do not drink my shampoo. I also do not consider myself "paranoid" because I choose to use gluten safe personal care products. I look at it as "why add another hazard" when I could just use things that are safe and eliminate any question or chance of getting glutened.

I know that I have longer finger nails....lotions and such can easily get under them and hide. If I then go to eat something..hands in mouth....BAM...it's a glutening. Why risk it?

In the shower.......I don't drink the soap or shampoo....however water does get into my mouth occasionally or even the occasional stray soap bubble....BAM....a glutening. Why risk it?

To me, it just isn't worth wondering if my soap or shampoo "got me". I just use gluten free and don't have to worry about that sort of thing.

As far as mucous membranes go............I know that many medications are given where mucous membranes can absorb them. For example, if you for some reason can not take your birth control orally (like you are puking up a storm) you can insert it vaginally and it will be absorbed that way. Obviously the mucous membranes are not directly connected to our small intestines, however until there is further research on the subject saying that there is 100% no risk of any complications(unless someone can provide me with some current research) I think I will stray away from gluten containing things even around my mucous membranes. (ie..no gluten around the hoohaa )Why risk it?

This is my opinion

-Jessica

well, my gluten free living magazine says as of now they don't see how things absorbed from your skin can get into your digestive tract, and has stopped advertising gluten-free shampoo to stop the confusion, but again, personal choice but this woman should hear both sides of the story. and, you put it in a better way than i did. Lol I hear kristen chenowith say that word on ellen but i wasn't exactly sure what the propper forum word for that was =-D

[angel-jd1]

well, my gluten free living magazine says as of now they don't see how things absorbed from your skin can get into your digestive tract, and has stopped advertising gluten-free shampoo to stop the confusion, but again, personal choice but this woman should hear both sides of the story. and, you put it in a better way than i did. Lol I hear kristen chenowith say that word on ellen but i wasn't exactly sure what the propper forum word for that was =-D

I laugh and laugh every time they show that clip "and you've got to breathe....from your hoohaa"

[ravenwoodglass]

you have to digest gluten to be glutened. you are right about your nose and mouth, bc you can ingest things and they will possibly make it down to your gut. However, i strongly doubt your reproductive system is connected to your digestive system.

I have DH and the use of gluten containing feminine products will give me very painful rashes and blisters. While the absorption through the mucous membranes may not effect the gut they will produce an antibody reaction and those of us who are subject to the neuro or joint effects of gluten can have symptoms result from mucous membrane contact.

[lfij]

I have DH and the use of gluten containing feminine products will give me very painful rashes and blisters. While the absorption through the mucous membranes may not effect the gut they will produce an antibody reaction and those of us who are subject to the neuro or joint effects of gluten can have symptoms result from mucous membrane contact.

no, you're wrong about the joint pain and that if you have no DH and it is not digested. just fyi.

[jerseyangel]

no, you're wrong about the joint pain and that if you have no DH and it is not digested. just fyi.

Ravenwood has been dealing with this for a long time. She is very aware of what brings on her joint pain. Not everyone has strictly GI issues--I have terrible anxiety, depression and brain fog when glutened.

It has been shown that contact with mucus membranes can trigger the immune reaction.

[Judyin Philly]

dito Patti

This is me too

Years of trial and error has proven this to me.

Of course this is JUST my personal opinion based on my bodies responces and I don't argue with my body anymore. It knows itself better than I do.

I just have learned to listen to it.

Judy

[lfij]

I have DH and the use of gluten containing feminine products will give me very painful rashes and blisters. While the absorption through the mucous membranes may not effect the gut they will produce an antibody reaction and those of us who are subject to the neuro or joint effects of gluten can have symptoms result from mucous membrane contact.

i really think you're mistaken, however, i'll drop it. i choose to not be so paranoid as i don't have DH and i don't believe i can digest things from my "hoo ha" as earlier stated lol. I do have joint problems when i digest gluten, actually from something else as well, and gluten only affects people with non dh celiac if it is DIGESTED. you may want to go back to your doctor if you are having joint pain from not ingesting gluten. just a suggestion.

[gfpaperdoll]

there seems to be a couple of people on here or the same person that takes it upon themselves to tell others what they are feeling etc. It is my personal opinion that their words will come back to bite them in the fanny !!!

I have gotten so sensitive to gluten that I cannot use any shampoo that has gluten or I get sores in my head & I do not have DH. I am still having bumps in my head from going to the beauty shop a few weeks ago & forgot to take my shampoo & cream rinse. I thought oh, no big deal what could it hurt, my head will be bent back etc. Well let me tell you these bumps are hurting & they are disgusting. I will not be forgetting my shampoo again.

Yep, I tell ya there is a lot that medical science does not know. & I have a lot of medical people in the family, friends etc.

& yes who would think that ME, a normal person, would be so darn sensitive that I cannot eat my own homemade stuff with the replacement gluten free flours. I can see how some people do not believe this stuff, but just wait like some of you said, things change.

I give thanks most everyday that I live alone, because then I do not have to worry about anyone bringing gluten into my house - my gluten free sanctuary. If some multi millionaire prince knelt down on my doorstep the first thing I would say is "are you gluten free?"

We should be here for each other & not have to have people tell us that what we feel is not correct according to their dogma. So to all of you I offer my apologies to anyone that has someone do that to them, it is just not right. But you know maybe they got gluttened & are not thinking straight & are in pain & forgot their manners.

[Judyin Philly]

I have gotten so sensitive to gluten that I cannot use any shampoo that has gluten or I get sores in my head & I do not have DH. I am still having bumps in my head from going to the beauty shop a few weeks ago & forgot to take my shampoo & cream rinse. I thought oh, no big deal what could it hurt, my head will be bent back etc. Well let me tell you these bumps are hurting & they are disgusting. I will not be forgetting my shampoo again.

USING CAPS ONLY SO YOU CAN TELL I'M COMMENTING ON THIS gluten-free, PAPERDOLL..SAVING TIME HERE..PLEASE FORGIVE...THE CAPS..

OK THIS HAPPENED TO ME..MY HEAD ITCHED SO MUCH THAT MY HUBBY COMMENTED AT THE DINNER TABLE...'DID YOU GET FLEAS AT THE BEAUTY SHOP?' tHE SCABES WERE THERE FOR 2 WEEKS AND MY SCALP ACTUALLY HURT.

If some multi millionaire prince knelt down on my doorstep the first thing I would say is "are you gluten free?"

WHAT A RIOT AND GREAT SENCE OF HUMOR YOU HAVE

We should be here for each other & not have to have people tell us that what we feel is not correct according to their dogma. So to all of you I offer my apologies to anyone that has someone do that to them, it is just not right. But you know maybe they got gluttened & are not thinking straight & are in pain & forgot their manners.

LET'S HOPE THAT THIS IS THE CASE.

IT'S HARD ENOUGH TO SURVIVE IN THE 'REAL' WORLD. I COME HERE FOR SUPPORT OR AT LEAST SOME RESPECT FOR MY DIFFERING PERSONAL OPINION.

I'M PERSONALLY DONE WITH THIS THREAD. THERE IS NOTHING MORE POSITIVE THAT I CAN ADD.

I HOPE SOME FOLKS WILL GET VALIDATION FROM YOURS AND MY POSTS.

JUDY

[darlindeb25]

I agree TOTALLY!!!!! I have been gluten-free for 7 yrs this month. The longer I am gluten-free, the more things effect me. It doesn't seem fair, yet it is a fact of my life. People ask me HOW I can have a problem with all grains--HOW DO I KNOW, I AM THE LUCKY ONE???? It's not something I wanted in my life either, yet it happened to me. My sister is a celiac too and she can eat anything except gluten, why do I have to be the guinea pig?

I do not have DH. Yet if gluten touches my skin, I react. After 2 yrs of gluten-free, I would break out in hives from wheat, after 3 yrs, oats made me itch, then corn too--now, if any of it touches me, it's an instant burning sensation, which stays with me for the better part of a day. Granted, this reaction is not being glutened, or is it, at any rate, it is a serious reaction, no matter what.

I too have joint pain, small fiber neuropathy and yes, I do believe that years and years of undiagnosed celiac disease brought this all on, so now, not only must I deal with a gluten-free life, I also must deal with a multitude of medical problems caused by the malabsorption caused by the mis-diagnosis.

The medical community does not know enough about celiac disease, they really only know one way that most will agree on a diagnosis and that's sad. Just because a doctor did not see flatten villi or test in the proper area, a person is denied a diagnosis and goes on thinking celiac is crossed off the slate and to be honest, the doctor missed the problem.

[radgirl]

The medical community does not know enough about celiac disease, they really only know one way that most will agree on a diagnosis and that's sad. Just because a doctor did not see flatten villi or test in the proper area, a person is denied a diagnosis and goes on thinking celiac is crossed off the slate and to be honest, the doctor missed the problem.

I agree with you here 100%. As far as I'm concerned the medical community doesn't know enough about any medical issue anymore. They are more concerned about the red tape and insurance issues to really pay attention to the medical problems of their patients. If a person doesn't meet all 10 requirements, but has 7 of the symptoms, they are automatically denied a proper diagnosis. Even if you meet all the requirements and everything says you have "X" you are still looked at as a fool and it's all in your head. It's when you are on your deathbed that they finally go, "oops, we were wrong" and even then, that is rare. Pardon my vent.

[jmd3]

well, my gluten free living magazine says as of now they don't see how things absorbed from your skin can get into your digestive tract, and has stopped advertising gluten-free shampoo to stop the confusion, but again, personal choice but this woman should hear both sides of the story. and, you put it in a better way than i did. Lol I hear kristen chenowith say that word on ellen but i wasn't exactly sure what the propper forum word for that was =-D

That is a joke!

If I have a cut, and I would use a gluten soap, or lotion...I get a severe allergic reation to my skin...it gets a large reddened swell area, hurts badly, can't scab and does not heal, continues to get larger and larger. It takes a long time to heal. Will not use anything that is not Gluten Free in or on me! The cut could be as minor as a paper cut, a small scrape, or even a bug bite.

I have other symptoms as well too, not all in the GI tract.

Celiac can destroy whatever organ that it wants to....mine was destroying brain tissue.

So again, no gluten in or on me on purpose.

[gfpaperdoll]

Forgot to add about the afore mentioned magazine, (there are two on the market that I know of) I find both magazines worthless with their tripe & I am not renewing. Actually everytime I read someone's mis-informed article it just raises my blood pressure. To anyone that is thinking about subscribing I would say forget it, I found it a waste of money.