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Guest j_mommy

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What do you mean by 100% gluten free? Everything that I read on this board indicates that is an impossible goal.

You don't know how many days in a row I avoided eating gluten yet you are able to say that I'm somehow being less gluten-free than anyone else.

The ironic part is that GPF went into great detail about how he figured out that what worked for him yet he seems to think there is something wrong with other people doing the same thing.

Tim, nobody said that you ATE gluten, but that you WILL get some gluten if you don't change your personal care items to gluten-free ones, and will use your old toaster.

It is true that it isn't possible to avoid all gluten all of the time. But it IS possible to avoid it most of the time, if you are careful.

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The word is: hydroxpropyltrimonum and oops, I lied, not 26 letters, it's only 20.

Thank you!! :)

I found this word in the ingredients of my body wash, as part of the phrase "Guar hydroxypropyltrimonium chloride" and I am hoping that in this instance maybe it is from guar gum instead of wheat. I will call the co. tomorrow and check.

EDIT: hey this is kind of neat, I found a website where you can search pretty much anything as an ingredient in a bunch of different product categories.

http://householdproducts.nlm.nih.gov/ingredients.htm

It says 'enter chemical name' but you can type in Wheat, Oats, etc.

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Since my husband has celiac I make sure that my make up and hair and shower gels are gluten free. I wouldn't want him to have to restrict himself from touching or kissing me and I don't want to leave gluten residue in the shower/tub area. Why take the chance? And yes, he did have DH as a symptom for years and we didn't know ......doctor thought it was psorasis. Since the "inedibles" are now gluten-free he no longer has the DH spots.

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What do you mean by 100% gluten free? Everything that I read on this board indicates that is an impossible goal.

You don't know how many days in a row I avoided eating gluten yet you are able to say that I'm somehow being less gluten-free than anyone else.

The ironic part is that GPF went into great detail about how he figured out that what worked for him yet he seems to think there is something wrong with other people doing the same thing.

Tim its possible if you don't eat out. It is just VERY restrictive...

Most of my diet is cooked from scratch from fresh ... in any case and alsways has been with the exception of food I buy outside.

Its not that I am saying its wrong... I am just saying that I went down a gluten-free path that others are taking and I got to the end already, found it to be a dead end and found the other path to go to that mysterious far away place called health.

Its not just me, quite a few others have been down the same path and discovered although the place at the end was better than where they came from its far from where they wanted to be.

The problem is its experiential ... its like there are 30 people who have all been to the same place followed the sign and got back. We might have all been there and seen that but some people have to see the dead end for themselves. I personally am very stubborn, people actually told me what I'm telling you now and I didn't believe them so it may be that you need to see this yourself too. If somehow I could bottle my experience so I could give it to you I'd love to save you the same journey...

In many way's therefore I'm saying try what I suggest, not what I did.. because I wish I had listened to people earlier.

However if you are as stubborn as I am then you can test the road yourself.... if you don't find the way out at the end you can remember where we are :D

I'm largely just trying to save you taking that road because it seems so attractive at first... its like a big highway compared to the tiny path you have to follow 100% gluten-free... and your first steps down it seem great because all is an improvement at first.

I think the real problem is non of us really know where we are going...

We set out on a journey to better health without realising many of the symptoms we have are actually symptoms because we have lived with them so long and they built-up gradually.

Imagine for a moment, we all live in a valley...over generations this valley has been subjected to earthquakes, plagues and various nasty stuff... the small amount of soil is exhausted and we are all deficient in nutrients but its OUR valley...

One of the earthquakes affects our river... and this makes moving critical...

Suddenly it all changes... we get diagnosed and told the climate is all wrong and for our health we need to move elsewhere...

Some people take the obvious route... the one to the next valley that has fresh soil ... but is unfortunately still plagued with the same eathquakes, plagues etc. but we don;t realise there are places without earthquakes and plagues... and whatever else.

Some of us set off and retrace out steps and follow the harder path over the mountain ... we didn't consider it initially because the mountain looks so big and we have no idea what is at the other side or how far it is.

Well we made that journey ... and we found a world without earthquakes, plagues and with abundant water and fertile soil.

We also tried the nearest valley....

What is really difficult to explain is that the illness you get for the flies in this near valley and our original one just doesn't exist in the valley beyond the mountains. That's hard to accept because your father's generation put up with it, as did that of his father etc. those pesky flies are just part of life...

The reason I think some people here are reacting in the way they are is because once you have actually been to that new valley and lived there and realise not everywhere has earthquakes, plagues etc. but the way it perhaps feels is they get back and someone is telling the people who are starting to ask questions like "Isn't there something better" that no, everywhere has earthquakes, plagues and pesky flies that carry disease. ...and the earthquakes aren'tt THAT frequent...

The thing is that event the infrequent earthquakes have long reaching effects... a simple earthquake can flatten houses that need a lot of time to be rebuilt... people die and rot into the water supply and cause more disease... etc.

We are suggesting that many of the mini earthquakes (micro glutening) actualy do a lot of damage, its just not visible but they cause damage to the foundations, they weaken the structires so that when the next big one comes they are less able to stand up to it. And once the structures collapse those pesky flies start breeding even more thus spreading the annoying non-fatal disease.

So we are trying to say "its not true, there are places without earthquakes and plagues but you need to cross the mountain and the mountain isn't really so hard, indeed so many of us have now crossed it the path is better marked and easier"

You don't *need* to put up with this ....

Once we found our valley and reaped its rewards we got stronger.. some of us now journey outside and take a few risks on an infrequent basis ... we try and minimise risk but we KNOW we have our safe valley to go back to .. we now resist the bug carried by the pesky flies and if we start suffering it we retreat back to our safe valley...

The safe valley is really nice .... but we haven't been there so long... we concentrated at first on necessities .. so we still have to build our bowling alley and golf courses... so we take little trips outside ...(call this eating out, trying new things) ..BUT we know we already have our place in our own Eldarado where our gold is complete gluten-free...

Right now we don't know but it seems like that disease carried by those flies actually causes long term damage that is cumulative... it certainly looks that way but we are still in the phase of just finding that loiving without it is so much nicer.

In the meantime in the real world eating out gluten-free is getting better slowly ... we are finding places we can be fairly safe... and when we make a mistake we are not stuck in the initial valley, we have our safe one to go back to and lick our wounds.

You don't know how many days in a row I avoided eating gluten yet you are able to say that I'm somehow being less gluten-free than anyone else.

What you said was....

My doctor and I discussed this and we decided that the solution is avoid eating gluten, to be careful but not obsessive about cross contamination (I didn't buy new cookware or a new toaster)

So it follows you were not 100% gluten-free... if you used the toaster then you definately were not 100% gluten-free...

However, yes this requires some extrapolation ... if you deliberatly posted that to mis-lead us then you could have not mentioned you didn't USE the toaster, you just didn't throw it away..(But I don't think you said that to mislead us). equally your personal care products (that sounds funny 2 guys :D) might by chance not contain any gluten (its certainly a lot easier in the products guy's choose anyway) but when you say "not to be obsessive about CC " that really makes it very likely you were geting SOME gluten ... however its very hard to be definitive of course...

The bottom line is as many of us found we can detect in ourselves the small amounts from CC and we know unless we are obsessive then we get CC. The only difference is we recognise it ...

It's a strange debate really, because there are so many conflicting findings, and with the exception of a group of people on this board who say you HAVE to get rid of your gluten-containing shampoo, I haven't found a doctor or book or celiac expert anywhere else who says that's a necessary thing to do. That being said, I personally do try to avoid gluten-containing shampoos and what not, simply because it makes me feel better (psychologically) to do so

Yes, even if it is partly psychological does it matter ?

I really find my gluten-free safe haven to be just that.... when I do venture out too far and I do get glutened I know I have stocks of things at home that I know are gluten-free and free of CC. (To an obsessive amount)

I haven't found a doctor or book or celiac expert anywhere else who says that's a necessary thing to do.

There are quite a few MD's who support a gluten free diet meaning gluten free.

You can find plenty just looking through here:

http://jccglutenfree.googlepages.com/halloffame

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I realize that I can learn from others experience - that's the main reason I visit this site. But, I also know that everyone has different levels of sensitivity and different reactions. I have read lots of annecdotal evidence that people were is some level of "denial" about how gluten-free they need to be. I've never read anyone's story where they were being tested regularly for antibodies to see how much gluten they are encountering during their specific routine.

I do use the same toaster. It hasn't had gluten products in it for eight months. I know there is some risk - that probably explains why my levels were still elevated at the first re-test. I do use the same pots/pans. They are also "gluten free" for about the same amount of time. My wife eats what I cook so it is not an issue for continual contamination. When we go out she gets her normal gluten products.

Both Chrissy and I clearly stated that what we are doing might not be the solution for everyone. Some of the responses here went beyond the level of sharing alternate experiences to telling us that we were absolutely wrong.

Bottom line for me is that I have a medical doctor whom I trust monitoring my diet with lab tests and I am not going to ignore that in favor of some stranger on the internet. This is not just someone saying "a little won't hurt". This is someone saying "even a little will hurt but I want an objective measure of how much I accidentally get with a certain lifestyle". I'll adjust based on those results.

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I realize that I can learn from others experience - that's the main reason I visit this site. But, I also know that everyone has different levels of sensitivity and different reactions. I have read lots of annecdotal evidence that people were is some level of "denial" about how gluten-free they need to be. I've never read anyone's story where they were being tested regularly for antibodies to see how much gluten they are encountering during their specific routine.

I do use the same toaster. It hasn't had gluten products in it for eight months. I know there is some risk - that probably explains why my levels were still elevated at the first re-test. I do use the same pots/pans. They are also "gluten free" for about the same amount of time. My wife eats what I cook so it is not an issue for continual contamination. When we go out she gets her normal gluten products.

Both Chrissy and I clearly stated that what we are doing might not be the solution for everyone. Some of the responses here went beyond the level of sharing alternate experiences to telling us that we were absolutely wrong.

Bottom line for me is that I have a medical doctor whom I trust monitoring my diet with lab tests and I am not going to ignore that in favor of some stranger on the internet. This is not just someone saying "a little won't hurt". This is someone saying "even a little will hurt but I want an objective measure of how much I accidentally get with a certain lifestyle". I'll adjust based on those results.

Tim, I follow..:D

I wasn't one of the ones "condeming" was i?

What would be really useful is someone doing proper blood monitoring AND going 100% gluten-free...

Nothing is certain with celiac disease... that's for sure :D but I'd actually tihnk if the antibodies are not there then that's really the best measure of something to measure.

I think some of the objection comes from whether the blood tests are actually going to measure the associatyed conditions such as thyroid and neuro ?

I think its likely that it all basically starts with antibodies... but really the whole thing is so wrapped in cause and effect and which is which?

However... as for. ....

Bottom line for me is that I have a medical doctor whom I trust monitoring my diet with lab tests and I am not going to ignore that in favor of some stranger on the internet.

I'm not sure anyone is asking you to ignore them...? (as such) ...

What people are (I think) trying to say is unless you and the doctor are celiacs that have tried 100% gluten-free... its really hard to tell..

The longer term effects similarly are unknown... my feeling is if your anyibodies are down below "normal" then no long term damage is happening...? However I think there is a caveat in that once you have been "damaged" to a certain extent before starting the diet perhaps a small amount might then do more damage???

Both Chrissy and I clearly stated that what we are doing might not be the solution for everyone. Some of the responses here went beyond the level of sharing alternate experiences to telling us that we were absolutely wrong.

I can see why.... but in reality from the perspective of some of the others you are implying their experiences are wrong ???

It doesn't seem like this probably to you but its all part of that "tell".... that I didn't beleive in until I discovered it...

So people probably take what you and chrissey say and at some level equate it to well meaning relatives who say "a single slice can't hurt" ... or indeed well meaning MD's who say the same thing....

The whole experiential thing makes a huige difference, its just not easy to transfer experience :D

Stupid example.... you call the company just serviced your car and tell them they didn't change the oil and the guy on the other end says Yep.. its ticked off on the sheet....

Your on the phone with the dip-stick in your hand coated in near tar .... and perhaps you also drained a few fluid ounces as well.

The problem is whatever the EXPERT on the other end say's your experiential evidence even as an amatuer is you have a cup with some oil looks like it hasn't been changed in years... and the guy has a tick on a box....and also a tick for a new filter and they can't replace the filter without changing the oil???

He can argue till he's blue in the face but your not going to believe him since you drained off the oil and its thick....

Lets face it you get frustrated eventually...

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The word is: hydroxpropyltrimonum and oops, I lied, not 26 letters, it's only 20.

I looked it up, I can't see where it says it's a wheat derivative...can you tell me where you found that (I'm looking at my shampoo bottle that has this, hadn't known what it was....)...

How do you find out what ingredients ARE wheat and what aren't????

THANKS!!!

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basically, what it all comes down to, is you have to do what works for you. as of the LAST antibody test----i believe that all of our girls antibody levels were normal. (some of the earlier tests were the one's that were NEARLY normal) our girls don't have thyroid or neuro problems. we choose not to be celiac "zealots"-----and our girls are healthy with the way we are choosing to handle things. i guess i should mention that we do make sure to read the ingredients on lip gloss. if my girls should start to have some new problems, we would probably start to look more closely at personal care products.

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hi there, im getting more carefull with skin creams as i have very sensative skin and get rashes, and swelling in my hands, but my husband and 4 kids eat normal food and i dont expect them to completely change their diets for me. i have my own cupboard for my groceries, i have my own toaster, cutting board and knives and few other kitchen utensils. we share pots and pans as we use the stainless steel type and they come clean nicely with no residues. i still prepare the meals for the rest of the family i even share cloths i just rinse between wiping down their stuff and mine. maybe to some this may seem terrible but i dont expect 5 other people to totally adjust for me when im capable of doing most of it. dont get me wrong, my hubby wont eat mcdonalds in front of me becuase he knows that i miss it, and he is willing to try my food, as well i do make lots of gluten-free meals for the family and he likes them fine. but he likes normal bread as do my kids and at almost five dollars a loaf for gluten-free bread there is no way that we could afford it for every body. every family operates differently and as long as your getting better i dont see the problem.

phew thats my rant!

i am totally checking all my lipsticks out now too as this to me could be such an easy way to accidently get glutened. what about lip balms?

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