Unedible Products

[Guest j_mommy]

I would like some opinions!!!

I'm newly diagnosed and every dr I've talked to says I do not need to worry about products I'm not ingesting. I work in the healthcare field and deal with Dr's other than my own and they all say that. Do I just have to wait and see how they affect me or do alot of people have problems with unedible products(ie shampoo, soap ect!) Please let me know what you all think!!!! Thanks

[Ursa Major]

Well, that just shows how ignorant about celiac disease most people in the health field are. If you wash your hands with soap that has wheat germ oil in it, and then eat with your fingers.......glutened. If you wash your hair with shampoo that has gluten, and you get some into your mouth during washing, or touch your hair frequently, same thing. If you use lipstick that contains gluten (and many do) it is inevitable that you ingest some of it while eating. You use lotion containing gluten........ laundry detergent...... whatever...... if you touch it and don't wash your hands a million times a day, you will gluten yourself. Toothpaste that contains gluten is self-evident.

Also, in addition to those problems, I found that gluten containing shampoo and conditioner would make my scalp unbearably itchy and caused rashes on my scalp. When I used soap that had wheat germ oil, I used to have burning eyes a lot, because of rubbing my eyes.

Also, watch for medications and vitamins that contain gluten, a lot of them do.

You also need to buy a new toaster, as you can't get those clean enough to not cause you to get glutened when toasting gluten-free bread.

[gfp]

I would like some opinions!!!

I'm newly diagnosed and every dr I've talked to says I do not need to worry about products I'm not ingesting. I work in the healthcare field and deal with Dr's other than my own and they all say that. Do I just have to wait and see how they affect me or do alot of people have problems with unedible products(ie shampoo, soap ect!) Please let me know what you all think!!!! Thanks

Well other than the fact many people do react topically as ursa mentioned there is ingesting and accidentally ingesting.

Its practically impossible IMHO to wash your hair "normally" and not ingest "some" shampoo. Sire if you make a special effort and keep your lips firmly closed (not that easy under a shower) and don't breath any up your nose ... but its a daily activity... half the time one we do half asleep... and thinking about other things...

And if you have long hair and it gets in your mouth ...

The same goes for soaps etc. if your washing your hands in soaps containing some gluten at some point your going to touch something goes in your mouth, be it a pen or food...

The way I look at it many toxins are not dangerous unless ingested but that doesn't mean I'm going to shower in them!

[darlindeb25]

I react to wheat, oats, and soy on my skin, usually breaking out in hives. It definitely matters. I work for a doctor who insists I do not know what I am talking about, of course, he doesn't live celiac disease, so he can SAY anything he wants.

Last week I tried a new liquid bath soap, St. Ives. A few years back I had used one of their lotions and was fine, yet when I read the ingredients, I missed that 26 letter word meaning WHEAT. The minute that soap touched my cheeks, I knew it was trouble. I could not get it off fast enough and the burning lasted for some time. 7 years and I am still learning lessons. Sometimes you get sloppy with ingredients, you begin to feel safe with the products you purchase and BAM, it reminds you immediately.

[ravenwoodglass]

Doctors in this country are so ......... well you can fill in the blank.

You do need to avoid gluten in non food items. If you choose not to, well they make more money cause you'll keep coming back every couple of months to figure out what else is wrong with you -cause your hair is starting to fall out, whoops better test that thyroid, your still exhausted, well you must have CFS or maybe we better draw 12 tubes of blood to see what is causing it, your joints hurt, you must have arthritis here have a script for celebrex, your getting heartburn still, here have a script for an acid blocker you can stay on the rest of your life, heck I could go forever.

As far as celiac disease is concerned most doctors are less than worthless, they are deadly.

[Tim-n-VA]

There are subtle and major differences in how all of us react to gluten. At some level you have to figure out what works for you. 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) and monitor antibodies via blood tests. Over the 8 months my levels have dropped from over 100 to 9 to 3. I see him again this week and we will evaluate and adjust.

The point isn't to ignore those other factors but to somehow find what works for you. If your medical/financial situation doesn't allow for frequent lab work, you'll have to adjust. Symptoms alone aren't generally sufficient to say there isn't a problem but are a good indicator that there is an issue. At the same time, without strict controls (as in formal studies), you don't always know if you got mild food poisoning from spoiled shrimp or accidental gluten from shampoo. Obviously just an example but we are constantly eating, drinking, breathing, etc. and anything entering your body has the potential to carry things that make you sick.

[jerseyangel]

When I was first diagnosed (before I found this board), I had never heard that I should avoid topical gluten. I strictly, as much as I knew how to at the point, avoided gluten in my diet, but continued to use the shampoos, etc. I had been using.

I was constanly having diareah in the afternoons. When I was told to "read the labels" and stop using products containing gluten, I realized that the hair gel I was using (as well as the conditioner and some make up) contained wheat proteins.

I also have a habit of biting at my fingernails--one day it dawned on me that I was glutening myself after applying my hair gel and only quickly rinsing my hands. I was nervously nibbling at my finger nails, not to mention preparing my foods.

When I replaced my products with gluten-free ones, I noticed a difference quickly--no more daily afternoon D!

The point is to reduce your risk as much as possible. To literally slather onto your body a product that contains gluten is not going to accomplish that--it will find it's way into your mouth, and it only takes a minute amount to trigger the immune response.

Even if you don't *feel* symptoms, the damage is still occuring.

[chrissy]

we do not worry about non-edible products. we have our girls antibody levels tested on a regular basis----and their levels have returned to normal or nearly normal. maybe we are not using any products that contain gluten----we really don't worry about this issue and it has worked for us---blood work proves it. this approach probably doesn't work for everyone.

[ravenwoodglass]

At the same time, without strict controls (as in formal studies), you don't always know if you got mild food poisoning from spoiled shrimp or accidental gluten from shampoo. Obviously just an example but we are constantly eating, drinking, breathing, etc. and anything entering your body has the potential to carry things that make you sick.

I am afraid I have to disagree with this as a blanket statement for all.

Everyone in my family has 'tells' with gluten that do not show up with a virus or food poisoning. For us one of those 'tells' is a deep depression that hits within 24 hours and lifts suddenly after 72 along with a rash that will come within 48. Gluten is also the only thing that will give 2 of us a migraine. Once someone has been gluten-free for a bit it is often quite easy to tell that it was gluten that did it.

[Tim-n-VA]

Please read my full message, especially the part about each of us needing to find what works for us. I don't know why anyone would try to take what I said as a blanket statement.

[Ursa Major]

I disagree strongly with those who think that personal care products are not an issue. Maybe the exposure isn't enough to damage your villi to the point of showing antibodies in your blood. But at the same time, it may be doing damage elsewhere.

We can't help but be glutened at times, it is completely unavoidable in this gluten filled world. Why not try to minimize the exposure by being as careful as possible by avoiding anything that contains gluten as much as we can?

We all know that some people don't have overt symptoms when glutened, or when ingesting small amounts of gluten. If you want to take the risk, that is your choice entirely. But it would be better if you wouldn't tell newcomers that non-food items are not an issue.

[Nantzie]

A "tell" is a good way to put it. Getting glutened for me is such a specific group of reactions that it's pretty easy to tell it from food poisoning or anything else.

Last week I got really sick, but I only got D. So I knew it wasn't gluten. It took me a while to figure out what it was that did it to me, and then finally figured out that it was a specific package of cheese (don't have dairy issues) that must have gone bad.

I was one of the ones who was hanging on to a few products (I still miss my old conditioner...). In the end, with all the other reasons during a day that I have to wash my hands, I decided it wasn't worth worrying about. Because I was definitely getting sick from it.

Pretty hair isn't very useful when all you want to do is curl up on the couch with the drapes closed.

Nancy

[gfp]

There are subtle and major differences in how all of us react to gluten. At some level you have to figure out what works for you. 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) and monitor antibodies via blood tests. Over the 8 months my levels have dropped from over 100 to 9 to 3. I see him again this week and we will evaluate and adjust.

The point isn't to ignore those other factors but to somehow find what works for you. If your medical/financial situation doesn't allow for frequent lab work, you'll have to adjust. Symptoms alone aren't generally sufficient to say there isn't a problem but are a good indicator that there is an issue. At the same time, without strict controls (as in formal studies), you don't always know if you got mild food poisoning from spoiled shrimp or accidental gluten from shampoo. Obviously just an example but we are constantly eating, drinking, breathing, etc. and anything entering your body has the potential to carry things that make you sick.

Tim, this all sounds logical... I'm not faulting the logic...

The problem is you have never actually been 100% gluten-free and that "tell" is highly subjective and personal but it really happens.

Its not something you can explain to someone who hasn't experienced it...because words just don't describe it.

I started off with your attitude, indeed I decided I was going to be OK on oats and just needed to avoid the big stuff.

I did get much better but I kept having mystery "gluten like" experiences...

On the whole I felt much better all round but I kept having the odd bout of diarrea. At this point I hadn't linked other sysptoms to gluten but they included depression, migranes, joint pain,some peripheral loss of feeling and what we call brain fog.

My GP put the D down to IBS... and it was still something happening more than once a month...we didn't rerun any tests but I would guess that my antibodies were down near normal...

I specifically remember the night I though screw this... it followed a very embarassing incident in a bar waiting for the toilet and it was the end of a totally crap week where I had been feeling sicker and sicker...

I threw away my underwear, returned home to clean myself up and got in the shower and grabbed the shower gel I'd been using all week since my supply ran out and I ended up using an old present from an aunt.

I was really upset and then reading the bottle I read "enriched with wheat protein"...

That was it for me.... up to that time I had tried sharing a kitchen and stuff as well. This made me decide to go the whole hog.

After about a week I felt better than ever and continued improving for 2-3 months... my joint pain I'd put down to older age ... and loss of feeling to probably something I broke as a kid... migranes I hadn't actually realised I could not have...

Now if I do get glutened, even CC I can tell because I just feel different...

So it is not something I think anyone can explain to you unless you try it...

[Nantzie]

I think it's worth it for anyone on the gluten-free diet to go 100% at least for a trial period. That's the only way you'll ever be able to completely tell how gluten effects you. If you don't find that it improves things, then it's your choice how you choose to do all of this. But for most of us, the improvements are so significant that it's worth the extra effort 10 times over.

When I first started all of this I thought everybody here was WAY too concerned about second-hand gluten, shampoo, new cutting boards and toasters, etc. I knew that some people were hypersensitive, but I figured the majority of the people who were pushing this thought process were just jumping on a bandwagon.

Now I know from experience that it's true. I never would have believed it if I hadn't experienced it myself.

Nancy

[hathor]

Oops, I thought you were asking about some of the gluten-free products I've tried

One type of cracker (tasted like cardboard) I left outside for any animals. Days went by and they weren't touched.

Sorry, I couldn't resist when I saw the title!

[Nantzie]

Oops, I thought you were asking about some of the gluten-free products I've tried

One type of cracker (tasted like cardboard) I left outside for any animals. Days went by and they weren't touched.

Sorry, I couldn't resist when I saw the title!

That's always a bad sign...

Nancy

[Byte Me]

...that 26 letter word meaning WHEAT...

ok, I'm sorta feeling dumb here. what is this word???

[chrissy]

"Maybe the exposure isn't enough to damage your villi to the point of showing antibodies in your blood."

my girls had negative biopsies, but they had positive blood work, so we know that our girls show antibodies to gluten exposure----whether or not they show villi damage.

it appears that maybe you didn't read my post thoroughly------i stated that "maybe we are not using any products that contain gluten" and "this approach probably does not work for everyone"

the poster said,"please let me know what you all think."------not "please only reply if you think that all the docs i know are wrong."

[Nancym]

I would like some opinions!!!

I'm newly diagnosed and every dr I've talked to says I do not need to worry about products I'm not ingesting.

How many of these doctors actually have celiac disease?

[Guest j_mommy]

Thanks to all of you for your help!!! I'm new to all this and it's hard to always know what to do! And in one of your post I read :How many DR's have celiac?" I haven't met one yet and NONE of mine are...so in the end how would they really know! But you guys brought up a bunch of valis points and thank you!

[gfp]

the poster said,"please let me know what you all think."------not "please only reply if you think that all the docs i know are wrong."

But that aside... you say "nearly normal"... and equally that you don't know if that contains non-edible products with gluten or not.

However as has been said on the rest of this thread by several people the problem is your opinion doesn't actually mean anything in this context. In the same way that Tim's or the Dr's doesn't because until you actually go personally 100% gluten-free for several months the difference between "normal" and "nearly-normal" isn't possible to tell.

I think the bottom line is noone really knows what level causes what damage....

I'd put it like something vague like sencond hand smoke....

The actual evidence for 2nd hand smoke causing damage is pretty sketchy... especially in lower quantities...

In fact the evidence for smoking is only that it greatly increases the likelyhood of a lot of nasty diseases... but noone can really say if your chance is increased a lot if you had 1 per day or 5 or 20... merely that overall some people smoke 100 a day for 100 yrs of their life and never seem to suffer the worse complications and some people are almost never exposed to even 2nd hand smoke and still manage to get lung cancer at 20...

Many of the compications for celiac disease are not direct.. that is other things can provoke them too... celiac disease is a contributing factor but not the only one...

So for me do I avoid all 2nd hand smoke? No... I go to plenty of bars thick with it and come home reeking...

However if I had kids I wouldn't expose them to 2nd hand smoke at home because that is something which is regular and all of these things are just increasing the likelyhood of complications so something you do often or everyday even in small amounts can still have along term deterious effect..

I think in the absense of evidence for the long term affects of slight glutening I find it preferable not to take a risk or more accurately increase that risk... so in the same way as passive smoking... if Im out in a resto I'll wash my hands with thier soap so long as its not clearly containing gluten.. but for home I choose products that don't contain gluten.

Its not like its actually any more trouble... once you find the brand its just picking that one up instead of another.

Nor is my soap expensive... its just a normal brand soap... and the same for shampoo and other products.

Why take the risk? All it takes if reading a few labels...

If someone does research this and I find in 20yrs I was wrong, its really no big deal...

Its the same price, same convenience... its not like having to find gluten-free bread...

[Ursa Major]

"Maybe the exposure isn't enough to damage your villi to the point of showing antibodies in your blood."

my girls had negative biopsies, but they had positive blood work, so we know that our girls show antibodies to gluten exposure----whether or not they show villi damage.

it appears that maybe you didn't read my post thoroughly------i stated that "maybe we are not using any products that contain gluten" and "this approach probably does not work for everyone"

the poster said,"please let me know what you all think."------not "please only reply if you think that all the docs i know are wrong."

Chrissy, you have been on this board long enough to realize that those negative biopsies might not mean a thing. It is too easy to miss the damaged spots, unless you take 100 biopsies! And even then you could miss the damage. So, they might have had villi damage, and it was missed. I guess you'll never know.

And I agree with gfp on this one. Since your girls were never 100% gluten-free, how do you know they couldn't do even better? Unless you make your whole house gluten-free, and replace their personal care products with carefully selected gluten-free ones, you'll never find out if maybe your approach doesn't really work for them, either.

And actually, all the docs I know ARE wrong on this issue, and so is her doctor. And you have the right to your opinion, of course. And I have the right to point out that it might be better if people wouldn't follow your example.

[Mango04]

I hate to say it but there is a psychological aspect to all this too. When I tell myself "okay, I'm getting rid of all my gluten-containing inedible products and I'm going to do everything in my power to avoid every speck of gluten, and when I do this I will feel better"....well, I do feel better. Whether it was the mental power of confidently telling myself I'm going to feel better or the actual avoidance of minute amounts of gluten that did it...who knows. It's about finding a balance in your life I think. For some people, having to obsess over every possible minute source of gluten has a negative impact in and of itself. I think for others that feeling of control has a positive impact. Everyone just has to experiment and find what works for them.

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

[Tim-n-VA]

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.

[darlindeb25]

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