Shampoo And Conditioner

[sandsurfgirl]

Oh please. Blood work is wrong All. THE. TIME. There are scores of people on here whose blood work was negative but had life changing effects from the diet. You have to eat a ton of gluten when you do a gluten challenge. Why? Because the blood work isn't so accurate or sensitive.

I only came up positive on one of the 5 blood tests yet I was bedridden and felt like I was going to die. It took me 6 months to start feeling great and now I am literally a different person.

Gemini, your blood work being fine does not mean you aren't getting any contamination from your beauty products. It's just too small an amount to show up.

And Dr. Green ONLY believes you have celiac if you come up positive on the endoscopy, another test fraught with false negatives and problems. So I'm not so in love with him either.

The medical community has been misdiagnosing us forever and still continues to do so. Read the stories on here of idiot doctors. So yes, if they are saying shampoos etc are fine, then yes the entire medical community is wrong. WHEN have they been right about us? You show me when, because I can show you a lot of suffering due to the entire medical community's ignorance, including my own suffering. A whole 40 years worth.

You can do whatever you want, but I know for a fact that I have been glutened by beauty products and I made marked improvement when I made the switch.

I think it's laughable to say that "people make this harder than it should be." Laughable. It's hard. Period. Gluten is everywhere. Teeny amounts can make us sick. That is a ridiculous statement probably made by people who do not have this disease themselves.

[ravenwoodglass]

The bottom line is that you have to ingest a certain amount of gluten for a reaction to occur and it was somewhere around a 1/4 of a teaspoon.

Then why do we have to injest 4 slices of bread a day for a period 2 to 3 months to have even a remote chance of accurate blood test or biopsy? With your thinking couldn't we just eat a 1/4 teaspoon before testing?

What about those of us who react to CC from just a crumb in butter? If at least 1/4 teaspoon is needed to be injested why do medical professionals tell us to have our own toaster and not to share condiments?

You do what you feel is safe for you. I'm happy for you that you have such great blood work. I had great blood work also. Over and over again as my children watched me die.

There is an excellent way to tell if we are getting gluten that is IMHO even more reliable than the blood tests and that is our bodies reaction. IMHO that is the best test and those of us who do react to small amounts are in misery when we do. Will we get a positive on a blood test taken after a small amount of CC, of course not, that is why we have to challenge for months for those tests to have a chance of being accurate.

[jerseyangel]

As an aside, each time I see a new gastro, (I move frequently) the first thing they order is the Celiac Panel--even though I've been gluten-free for over 5 years. I had the blood drawn after 3 years gluten-free--in the middle of a gluten reacion where I felt awful but the blood work was fine--"normal" as it were....

But, my liver enzymes go up when I've been glutened--proven twice by bloodwork and determined by a gastro after a full workup.

I don't think the medical community knows everything there is to know about Celiac--how can it when a decent percentage of doctors know next to nothing about it and don't even think to consider it. I also think that "experts" like Dr. Green (whose book I own and liked) have the facts "up to the minute" but in a case like Celiac where there really hasn't been much interest, I feel there is still a lot "they" don't know.

Shampoo and conditioner is a hot button topic as I said--I can not use products with gluten myself, but I would not ridicule those who can and do--on the contrary, I'm glad for them. It's a personal choice but I use gluten-free products not because I have a lack of knowledge about Celaic but because I want to avoid the nasty reaction.

I had a very hard time in the beginning reading that I "should" be able to tolerate many things that I just can't. Is mine or anyone else's experience invalid because we are not "textbook" Celiacs? I've read reams of studies and literature from the best in the field--plus logged in hundreds of hours here. To imply that the very sensitive are just plain uninformed or have to necessarily be suffering from something else is frankly hurtful to me.

We all should share our experiences--the more sensitive and non sensitive alike because you never know who is reading here and who will be helped or encouraged by what we say. Maybe I'm wrong, but I don't consider sharing what has helped to be passing along wrong information--people read and then take what they want away from it. When I first started, I thought it was unnecessary to switch out my topicals and didn't--until it was clear that they were bothering me.

Lately, I've been experimenting with shampoo bars. They have very few ingredients but are tricky at first and need to be followed by a vinegar rinse. If there was any question before as to hair products getting into my mouth, that has gone by the wayside for me because of the vinegar taste that lingers for a while after I rinse. That is one taste that is unmistakable!

[sandsurfgirl]

Then why do we have to injest 4 slices of bread a day for a period 2 to 3 months to have even a remote chance of accurate blood test or biopsy? With your thinking couldn't we just eat a 1/4 teaspoon before testing?

What about those of us who react to CC from just a crumb in butter? If at least 1/4 teaspoon is needed to be injested why do medical professionals tell us to have our own toaster and not to share condiments?

You do what you feel is safe for you. I'm happy for you that you have such great blood work. I had great blood work also. Over and over again as my children watched me die.

There is an excellent way to tell if we are getting gluten that is IMHO even more reliable than the blood tests and that is our bodies reaction. IMHO that is the best test and those of us who do react to small amounts are in misery when we do. Will we get a positive on a blood test taken after a small amount of CC, of course not, that is why we have to challenge for months for those tests to have a chance of being accurate.

EXACTLY!!!!! My son has violent reactions to gluten- vomiting, coughing, D, bloody noses. He was gluten light but still eating quite a bit out of the home. His bloodwork was negative. The blood tests are NOT very accurate. They just aren't.

Here's an interesting list that have happened to me and others on this board. No way was anything but trace amounts involved in these circumstances

Glutened by kissing (happened to me.)

Glutened by hubby eating bread and using the same steering wheel (a female trucker on this board)

Glutened by someone using the pasta collander for gluten pasta and then not scrubbing it to death. (happened to me)

Glutened by a knife spread on bread and stuck into a condiment container.

Glutened by the toaster

Glutened by a wooden spoon used for gluten pasta and then not scrubbed (happened to me)

Glutened by the computer keyboard.

And my very favorite. Sorry very TMI. I read several threads about this on here. Glutened by swallowing a man's... ahem... during oral you know what. Apparently if he is a gluten eater trace amounts get into that bodily fluid and can make a celiac sick. Apparently there were some studies done according to an old thread I read. Perfect excuse girls!!!

[oceangirl]

Ditto for all the ways you mentioned, Sandsurfgirl, and thank you again, Patti, for reminding people that it is hurtful to be told you are essentially not informed if you have sensitivity to topicals. The level of intelligence and the amount of research the average contributor to this board does continues to both astonish me and give me hope for mankind. (People will continue to know how to read and discuss, something I worry about...) This board has been so helpful over the years and I am so thankful for it; I glean from others' experiences whatever I can and what does not apply to me may apply to others. Strident righteousness about one's own experience as opposed to others doesn't seem to do a lot of good.

And Patti, I don't know what a shampoo bar is, very curious, but as a brunette I've rinsed with vinegar (1/8 or so cup apple cider in a full glass of water and leave it in) since I was a teenager and people still ask how my hair is so shiny and soft. Not bad for an old lady! And cheap, too! Plus, I clean everything in the house with vinegar.

Take care all,

lisa

[kayo]

The best part of this forum is that everyone gets to share their experiences which are extremely helpful. We all have different levels of symptoms, healing and reactions.

That said, Gemini, your posts are incredibly insulting and condescending. While you have a very interesting viewpoint it's getting lost on me when you say things that suggest the rest of us aren't using common sense or our brains.

I appreciate your experience but not the insults.

Disappointed,

Kayo

[jerseyangel]

And Patti, I don't know what a shampoo bar is, very curious

Lisa--I've been using the Olive Babassu Shampoo Bar. I'm allergic to coconut, and it's next to impossible to find a shampoo without coconut-derived ingredients. This one is very simple and unscented. It lathers nicely and I'm happy with it so far.

They are not a gluten-free company, so anyone browsing needs to read the ingredients on the various products.

Open Original Shared Link

[oceangirl]

Thank you, Patti!

lisa

[BethM55]

Gemini that is absolutely NOT true that good quality shampoos do not contain wheat. I am a total products snob and I have literally like 10 bottles of products in my shower. Nearly EVERY high quality salon product contains wheat because if you're not celiac it's good for your hair. Redken, Aveda, ABBA, Paul Mitchell, Purology the most expensive high quality producct around, the list goes on- ALL of them contain wheat in some form. I spent TWO HOURS reading shampoo and conditioner labels and taking notes at a beauty supply. My hairdresser of 15 years and I spent a ton of time while my color was processing looking at everything. Wheat wheat wheat is in it all.

The only salon quality hair products that have a large choice of shampoo and conditioners that don't contain wheat are Enjoy and Biolage by Matrix. There is only ONE Redken line that has no wheat. I literally cried over Redken Blonde Glam because I love it so much. Redkens' new anti aging line has no wheat or gluten.

I don't see how you can say people don't get how this works if they avoid wheat and gluten containing beauty products. It gets in your mouth. Period. You cannot shower without it running down your face and getting to your lips. It's not paranoia. It's a fact. Try putting food coloring in your shampoo and see where it ends up. Conditioner is meant to stay on the hair and not all rinse out. It stays on the skin. Lotions get on your food and all over your house.

It's just a fact.

Believe me I was SO resistant to this idea. I am a ridiculous product queen. I had to throw out about $200 worth of product and/or give it away. My bathroom looks like a mini Ulta. I know my beauty products! LOL

Bare Minerals and Benefit are good make up choices. H2O Plus is great! I have great skin and I've been using it for 10 years. I haven't found anything with wheat or other gluten ingredients in H2O Plus yet. I swear by it. I'm 40 and I owe my skin to those products.

I have a question for the Product Maven! I use Aveda Be Curly leave in styling product, as it's the only thing I've found that works for my curly hair. But it has (gack!) wheat protein in it! Now, I'm not super sensitive, am gluten intolerant rather than true celiac. But, I'd love to find another product to use, and not have that wheat protein in my life. Do you have any suggestions for a light weight leave in conditioner with light hold for very curly hair?

Thanks, Beth.

[sandsurfgirl]

I have a question for the Product Maven! I use Aveda Be Curly leave in styling product, as it's the only thing I've found that works for my curly hair. But it has (gack!) wheat protein in it! Now, I'm not super sensitive, am gluten intolerant rather than true celiac. But, I'd love to find another product to use, and not have that wheat protein in my life. Do you have any suggestions for a light weight leave in conditioner with light hold for very curly hair?

Thanks, Beth.

Try Biosilk leave in treatment silk therapy. Open Original Shared Link

Not their shampoo and conditioner. I think they have wheat. They sell biosilk all over the place. Sometimes Costco has it. Salons always have it.

[sandsurfgirl]

Ditto for all the ways you mentioned, Sandsurfgirl, and thank you again, Patti, for reminding people that it is hurtful to be told you are essentially not informed if you have sensitivity to topicals. The level of intelligence and the amount of research the average contributor to this board does continues to both astonish me and give me hope for mankind. (People will continue to know how to read and discuss, something I worry about...) This board has been so helpful over the years and I am so thankful for it; I glean from others' experiences whatever I can and what does not apply to me may apply to others. Strident righteousness about one's own experience as opposed to others doesn't seem to do a lot of good.

And Patti, I don't know what a shampoo bar is, very curious, but as a brunette I've rinsed with vinegar (1/8 or so cup apple cider in a full glass of water and leave it in) since I was a teenager and people still ask how my hair is so shiny and soft. Not bad for an old lady! And cheap, too! Plus, I clean everything in the house with vinegar.

Take care all,

lisa

www.vinegartips.com has all sorts of beauty and cleaning product used for vingar. Love it! Never tried it on my hair.

[ravenwoodglass]

www.vinegartips.com has all sorts of beauty and cleaning product used for vingar. Love it! Never tried it on my hair.

I used apple cider vinegar for years for a rinse. Put about a quarter cup in a one cup measure and fill the rest with water. It's all I used as a child cause Mom used bar soap on our hair and she liked it cause it removed all the soap residue. Leaves the hair nice and shiney and doesn't leave a vinegary smell like you might think it would.