gfp

Okay. So while I was looking up info on celiac disease, I realized that almost every site i've referred to, it explains that it predominately affects White Europeans. What bothered me the most is that I am half African American and half European, and I still managed to get this disease. Hehehe. So much for that. But what has really been bugging me is that there is so few support groups, sites, or anything that raises the awareness of celiac disease in African Americans and other race groups for that matter.

I would have never even known about this disease if my boyfriend didn't suggest that I might have had it. I would have never gotten tested. My twin brother was diagnosed with Chrons Disease 5 years ago, I think he has Celiac disease. Infact, I think everyone in my family has it. But when I tried to explain to them that they might have it, they kept telling me that this was my problem and to not include them. And that they personally think the disease doesn't even exhist.

This is not only affecting me but I feel its affecting African Americans pretty negatively. What do you think?

Its 2 issues ...

The first is quite common, that is for some reason families sometimes get all defensive over celiac disease because its genetic. Its almost like some 'guilt thing' which is obviously silly but happens all the same.

As for the racial genetic side ? I guess it is fairly uncommon ... in most things I tend to think that trying to 'promote' a certain disease or anything else for any specific racial group is best only if that group are at particular risk, not the inverse ??? Without trying to sound blazee' about it we would end up with the East Asian American Diabetics, Latin American Cardiac arhythmia Society etc. hen really these things are best looked at and publicized as a whole not split into subgroups etc. ???

As for it affecting African Americas negatively then what about Africans? This in itself is lots of subgroups ...

Would you have a Massai awareness group and a Xosa Group ?? Probably not .. so I'm just saying this to highlight that it is best to only make special awareness groups in at risk populations or the overall awareness ends up diluted?

If you are in USA you could be violating some obsure, but new FDA law. You need to talk to a lawyer.

Not all pills are created equal: some are Class C which are narcotics - even a mild narcotic like Ambien or Xanax and the C's could post a higher risk for you to have legal troubles. I'd recommend fake pills until you chat with a lawyer. I don't think police would have the correct answer on this one and any answer they give, after you've been arrested the judge would amonish you for not getting an attorney's advice as police cannot take the place of an attorney... At least with the attorney, if he gave you the "ok" and you still got arrested you can sue the attorney for bad advice: you can't sue the police.

I know I am sending the issue into the "extreme case scenario" but stranger things have happened. Remember that expression: The road to hell is paved with good intentions.

Pretty much my feeling ....

Although from my perspective the chance of being found guilty of some obscure FDA law is unlikely BUT the pure cost and hassle of having to deal with it, pay an attorney and go through the process is what I would find offputting.

It always seems to be the "easy examples" which are targetted ...

As a UK judge told the guy he just found guilty last year.. he was extremely sorry to be finding him guilty and thought it was completely unproductive but ....

What did the guy do? Threw some personal post into a public trash bin?

As the judge said, he thought we were meant to be encouraging people to use trash cans not throw litter on the street... yet some busybody went through the trash and found addressed envelopes ....

Is this stupid? IMHO its worse than that but that just seems to be the way of making examples of those with good intentions to try and scare those who habitually have bad ones.

Thanks for all the replies.

After thinking about it some more I think I really need to use the actual pills. I think what I am going to do is have my local frame shop encase it in a box frame, if I should ever decide to show it. When I worked with youth and we had cases or displays of illegal drugs that is what they did. Maybe check with my local PD to be sure. I don't usually show my work, other than glass.

I do most of my art for me, and I never ever sell my paintings. This one in particular deals with the years and years and years of testing and meds thrown at me. Most did more harm than good. Too many of us are all to familiar with that scenario. I still have a hard time dealing with the anger and the sadness of all those lost years and hope that I can resolve some of those feelings.

But as they say, without pain there would be no art.

I'll post them as I get them finished.

GFP, I would love a link to that exhibit if you can find one.

Again thanks all for your input, it is appretiated.

I'll see if I can get over this weekend, its only around the corner.

If its at home then I don't see a problems but I would be very careful about any public showing.

The real problem (from my perspective) is this is the sort of stupid thing that legal systems like to make an example of. They can't touch the criminals dealing illegal drugs but they can make an example of a harmless piece of self expression. Your name in the paper associated with a lot of legal costs might not be the release you are seeking... I'm not saying it would happen .. just if someone has a bee in their bonnet this sort of thing can be very hard to make disappear.

All you need is someone who has a bee in their bonnet (someone who's kid picked up disguarded pharmaceuticals) who's life now revolves around being a busybody on this to make a big fuss....

So keep it at home would be my advice

Quite honestly I would use subsitutes ....

Reason.. someone will be offended, someone will complain if its seen in public.

At least you cover yourself this way...

As it happens the British Museum has a huge expo of pills as art!!

Will try and get you a photo ...

This statement in itself is nuts! McDonalds does serve many millions per day, but not in any one restuarant, the millions is in all of their restuarants. We have the same risk of contamination in any restuarant as we do in MickyD's. The risk comes from the people we must trust, who are handling the food, not the place in which we are eating. I find it difficult to trust anyone.

The two are not the same, the statement is false because McDo say's the fries are safe yet its an impossibility ..

A single resto might say "they make every effort" and they may well but with thousands of resto's a blancket statement like "our fries are safe" is just wrong ...

Even a single resto its pretty hard (and like you i would still be wary) but as a sweeping statement for a whole chain its just misleading... or telling people what they want to hear.

I was watching the news the other day when they were anouncing the increase in the price of flour. I watched this man in some bagel shop in NYC run his naked hand, meaning no glove, through his flour, now that was disgusting.

Well not sure disgusting is the word (after all its only ourselves a 'small minority as they keep saying' find wheat distasteful) but it illustrates the problem. Its treated as a harmless substance ... and even my friends/relatives find it hard ... so to me any kitchen using flour is pretty much a very high risk.... more so than pre-prepped fast food but pre-prepped fastfood does still come a close second ....

Well, McDonald's does state that there is wheat protein included in the fries ingredients, but they also (did, at one point) claim that the gluten itself is processed out and that the fries are safe. Now, I have no idea what analysis you're talking about, whether or not a 3rd party did a gluten assay. But a lot of people on this board eat McDonald's fries, apparently without symptom, or did at the time we discussed this a numer of months ago. If there is someone who claims they are gluten free, it is probably based on that information, and it is most likely that they were not paid to do so. Not sure where you got that idea.

There is a long a short version, long version I guess a search on McDonalds fries will find!

Short version, the analysis itself is available, I've linked to it several times. (I Also worked half my life in analytical labs).

If you read the summary you get the idea the oil is gluten-free and CF. If you read it all very carefully then you realise (if you are used to reading analytical reports) that they are only talking about the ELISA test in the summary and later on the RAST test is +ve for both gluten and casein.

Before you get to this PDF following McDo's links is a statement by someone in the GIG of America (or something like that) saying the fries are 'safe' . This is where the name sounds familiar with.

However ...whomever quoted this ... must have given permission to McDO ... to use there name... did they just do it for free?

The question of how much is too much one not easily resolved ...

Many also report problems with McDo fries... and others don't....

The variables are too many to resolve... but are some people more sensitive or less sensitive? Is it only exterior symptoms?? Does a 100% gluten-free diet make you react more violently?

Is it possible many of those eating the fries without problem are not really 100% gluten-free?

This last one is not really a question but rhetoric. IMHO ANYONE who thinks McDo fries are consistently gluten-free is not gluten-free. Its almost a definition... forgetting the oil its seems impossible that McDo could consistently make anything gluten-free due to cross contamination... or come to that more or less any resto but especially 'fast food'.

Unless a resto has special areas and policies its just impossible to be consistent... and fast food is more given to slips than individually prepared food.

Since McDo serves however many million portions of fries per day then a huge amount must be contaminated, its just stats.

Wow--really? What did they pay her to say?

It depends if its the same person.

I seem to remember a Shauna who said McDonalds fries were gluten free even when the analysis say's they are not. However it might not be the same one, hence the question. (which is a question)

I guess that I'm lucky. I have always loved to cook and I've had no difficulty adapting many of my favourite recipes. So I haven't found the switch to gluten free to hard. The hardest part for me has been training my family so that they don't cc me.

That's exactly how I feel about it really. I hardly have anything I eat (excepting Pasta) that isn't just as easy gluten-free. I say hardly, there are a few things which just don't work well but these are really few and far between.

However on the other side eating gluten-free has actually opened me to cooking things I might not otherwise have tried or discovered.

Eating out ... is the real problem and mostly the inability to just buy a sandwich or take-away when on the go or with friends etc.

Is this the same Shauna who is paid by McDonnalds to lie?

It just seems that for most of us, there is so much more effort and care involved in planning & preparing those meals, by necessity, and add to that a feeling of anxiety if there are not things readily available when you are hungry that it often takes the joy out of it.

No extra effort involved ...

I never used tins, packets etc. and little has changed in preparing my own meals with the exception of Pasta.

Eating out and snacks are a different way of life but cooking at home is no easier nor harder. Everything in my kitchen is gluten-free, most products I buy are naturally gluten-free and most has barely changed. Some sauces need adapting but thats about it...

You are the only other person I've heard say that... I used to feel the same way.

strange I said the same thing above...

However, like I say if the house was burning down you'd suddenly find you forgot about it and carried on breathing...

The same for falling asleep but its not the easiest thing...

Being aware you will not stop breathing is a big help... distract yourself however you an, be it a TV (not my choice) or reading a book etc. but basically theless you think about it the easier it is.

That's right, if you go to the Bob's Red Mill website and read their story (I have checked out their whole site) you would find that their gluten-free products are made in a different facility from the gluten items. So, if it says gluten-free, it is just that.

That's OK and the best they can do and avoids CC in the mill but it doesn't help with the field itself or the bulk transport... this is pot luck...

My thoughts on this are that Rice is good because it doesn't grown in the same environment as wheat (or barley/rye) ... and quinoa is good for the same reasons but other grains can be contaminated in the field by outliers... when crops are rotated or just mother nature (birds etc.) bringing in seeds as nature intended (poop).

The risks are smallest in areas with mono-agroculture but this is (unluckily for us) usually the most chemically enhanced. The same goes for transport, the more the transporters carry in terms of diversity the greater chance of CC.

I agree that with mixes, there are a lot of possibilities other than gluten that could cause a problem.

I totally agree, the more in a mix the bigger the chance of one product being CC'd.

Frankly its ridiculous your parents are not willing to discuss the celiac situation.

If you were a child with diabetes would they be 'too embarassed' to tell them not to give you candy?

though if I make a big deal out of it, they would probably accomodate me to some extent.

So guessing your parents do love you (though Parents sometimes have a funny way of showing it) I am guessing they don't really understand the seriousness of the condition and its consequences.

Sometimes its VERY hard to convince them. For some reasons(s) close family and old friends are often the ones hardest to get to accept celiac disease.

Usually as you mention its those who have seen us eating wheat before ... and it is to an extent our fault (not entirely) but we tend because of the symptoms bot to actually say about them.

Parents can also (for some reason) be funny about genetic diseases ... like they knew or had a choice?? but sometimes they have some guilt thing about who passed on the genes and perhaps a worry about siblings or themselves. Whatever the reason it certainly doesn't help.

The complications of celiac disease can be quite scary ... and sharing a kitchen with people less than 100% committed is asking for problems and a gluten-free kitchen is really the safest... but it sounds worrying they are unable to tell house guests there daughter has a 'allergy to wheat' because this makes it sound like they are not really committed?

Hi. I am 28 and just diagnosed with Celiacs. I've been reading up on the disease and have met with a nutritionist, so I'm getting over the shock. My concern is cross-contamination as I live with my gluten-eating girlfriend. The books I'm reading seem to think I shouldn't be anywhere near anything that once came in contact with gluten. I shouldn't even buy "gluten-free products" that "are made in a facility that processes wheat".

This has my brain spinning. How can I actually avoid contamination and is it actually that serious of a concern?

Yes and No....

Firstly its not REALLY difficult, it's just practice. Its like jumping in a stick-shift car the first time (presuming you drive). At first it seems a bewildering amount of things to balance and do at the same time but soon it becomes second nature.

Secondly if you cook at home then its really not that hard to eat 100% gluten-free. Obviously a few things like (normal) Pizza are out but there is a whole load of things you can eat which just don't contain gluten.

CC is important and the easiest way is just not to have gluten in the kitchen/house. If your gluten-free wants/misses gluten then the easiest is to eat it outside the house. If you do then the amount of detail can make your head spin, ie. kitchen cloths, dishwashers etc. etc. but if you kep gluten out of the kitchen then this gets a LOT simpler.

Try contacting them....

In reality they can't guarantee gluten-free... companies that say they can are probably lying because stuff can always happen they miss or can't control. (I suppose if they charged $20 a mix its possible but given the way it grows and is transported its hard to be 100%)

To me its more how they respond and how much effort they make. If they ask you to send it in its a good sign, you might be asked to send in the bag etc.

At least if they do this they are serious... I guess if not then they are not?

oops: Forgot to say...

It could be all sorts of things, it might not be gluten, could be a tummy bug? It might be another intolerance (soy?) and it could be CC. You could have some lost gluten somewhere in the house like a hoover?? or it could be something you touched? Someones pet you handled eating gluten etc. etc.

This is one of the most frustrating things for me when I'm SURE I couldn't be glutened but am...

My Dr. thought I had asthma .. until they had me blow in the tube thing...

Anyway this may or may not be appropriate and the important thing is to find out exactly what your dealing with.

For me it turned out to be a combination of things...

1/ I get a Casein reaction which nearly killed me once by blocking my airways with literally glue. However even lesser times it makes breathing labored because of the mucus and stuff.. It seems to be a combination type allergy (the french don't refer to hay-fever but 'allergies') which I find more apt for me at least.. since I react to car fumes etc. far more than clean pollen ...

2/ Opening the window etc makes it sound more allergy like ???

3/ The third and killer was acid reflux... this can literally parallise your lungs when the acid from your stomach gets into the lungs...I actually had an inhaler at one point because it can be really severe.

You don't really have to concentrate on breathing, however much it feels like it does ... (unless you have an asthma attack)... I've been down the same road and its a catch-22 ...like once you start thinking about actually breathing you suddenly can't help it... but if something dramatic happened and your mind switched over you would probably just forget and your body do it naturally... Knowing you can distract yourself from this might help .... especially since you seem to get this at night ..it probably affects your sleep (it did me) ... I almost worried if I fell asleep I'd forget to breath...

A simple way to look at this is:

Negative biopsy ... means pretty much nothing unless you have been really hammering the gluten for a long time and know they took lots and lots of samples etc. and even then its never definitive.

Negative blood tests ... this depends largely on 'negative' ...

Firstly AgA tests could mean you are AgA deficient hence false neg.

Then there are degrees of negative ...

I don't really think that the boundaries are so easily defined ... what is 'normal' for instance is based on taking a random population and comparing to those with positive biopsy ... BUT this assumes in every paper I have seen that the normal incidence of celiac is 1:5000 or so... (i.e. negligible) and that biopsies are definitive.

Since we know normal incidence is between 1:200 and 1:300 this means that a large proportion of those classed as control were actually celaics, indeed 10x as many as 1:xxxx .. and at the same time many of the negative biopsies were also false negatives (who knows how many) ...

So if the take the numbers as being based on a normal population having a very tiny 1:5000 chance of having celiac this skews the numbers immensely. So say your result is 12-13 its hard to say exactly what this means.

Also ... no-one seems to know if a little bit more means a little worse or what... If the average is 10 then is 11 as bad as 20??? Who knows???

This is all well and good and playing with numbers ... but in the end do people go up or down with blood tests?? I mean say you eat the same amount of gluten each day over a year would the blood tests be consistent or up and down??

Might you get a 9 one day and 15 two weeks later or would it be still 9??? Also, say you get say 11 keep eating gluten might it be 14 after a year and maybe 18 three years later ??? I.E. does it get worse and worse???

All these questions are as far as I know pretty much unanswered ... in other words its totally possible that if you go over a threshold and keep eating gluten it will get worse and worse... it seems rather possible... so should we take the risk??

My personal belief is when playing with your health then take the cautious route.

gfp - I want to try the crepes. I can't have egg, but am interested that you can still make a crepe without egg.

Yep just buckwheat flour, water and salt....

Make sure you leave it stand for about 20 mins... but the actual consistency is just trial and error...

For 20 mins it bubbles a bit.... if you use it like this you get holes in the crepes ...

I use a big huge cup and fill it about 1/4 full with buckwheat flour then add water slowly ... I never really measure... but its just a batter with no eggs and needs to be thin enough to spread quickly...

Get the pan quite hot (I use butter and before it starts to brown)... then just add it and spread abouts. It takes some practice to get the temp correct and sometimes its best to throw the 1st one...

For the filling ... savoury works a lot better for buckwheat...

Buckwheat is incredibly heavy .. if you use it in 'normal baking' then combine it with a light flour (like rice flour) .. Real buckwheat crepes however are really simple and easy ... I mix by eye until its reasonably fluid, just buckwheat flour, water and optionally salt and optionally an egg.. (if yuou add the egg you'll need less water).

Ideal for savory crepes like ham and cheese etc.

Steve, I clearly remember when you went to your brother's wedding (if I recall correctly) and being glutened by your mother with codex bread to the point where you weren't rational and swore you'd never stay at your mother's house again.

And now you have chosen to poison yourself with that same stuff, and wondering why you aren't well?

Its not actually the same stuff, the bread ive been getting is wheat free as well as gluten-free...

The main problem is all the other things I've been living on... where gluten free can mean CODEX or real gluten-free...

I got to a point where I really had to start eating something, indeed my new years resolution was to eat at least once everyday .. I was eating so little...

its not really deliberate either... I just don't feel like eating .think I'll feel more like it later.. then next thing its bedtime...

As for your tooth: If your current dentist is an insensitive moron who can't understand why you gag, find another one who is more understanding!

It's quite difficult here... those jokes about English teeth are not unfounded

I had a root canal done a year and a half ago. I am so terrified of the dentist, due to some bad experiences I've had, plus being almost impossible to freeze properly, that I needed anesthesia as well. They can do something that is not complete anesthesia (I don't remember the proper name), where a nurse/anesthetist comes into the dentist's office (as opposed to the hospital, where it becomes prohibitively expensive) and puts an IV in. She puts you out enough that you can't feel a thing, but still respond to the doctor's commands, as in, "Open wide" or whatever. But you really don't remember a thing when you wake.

Actually, that scares me much more... (Its a pretty much religious thing for me... strange as that may sound coming from me...)

I really view loosing memories as ... well pretty much loosing me... I know that sounds strange but its pretty much a core belief of mine that we are the sum of our memories, good and bad... last year was a REALLY bad year for me... I lost or 'had stolen 'all my memories for a long time... or that is how it still feels.. I am still finding it hard to forgive the person...

I think the change in diet is a likely culprit. For me, I know GMO corn will do me in, so I have to always make sure it's organic (non-GMO) corn. Basically I try to verify organic status of all my foods.

The possibility of gluten sneaking in sounds reasonable, especially given the CODEX rules. I'd never accept that, but that's me. You know your own sensitivity best.

HTH

Yeah, I have to agree and regardless of the sinus issues ... The problem with the CODEX stuff is you don't know what is and what isn't gluten-free (in the real way)... so some things don't say gluten-free but seem OK, others say gluten-free but you don't know etc.

I take Claritin and use a steroid nasal spray when really needed, but I find that using a Neti Pot helps fabulously. I do it every day--it's part of my morning routine--like brushing my teeth. I do 1/4 teaspoon sea salt to a cup of lukewarm water. One you find the posture that's right for you, it is actually relaxing.

Well that's two votes for salt, plus my mom.... = 3

Also previously I had a "homeopathic spray" which was basically salt water with a silver suspension and since the silver is unlikely to really do anything the salt water was probably the reason.

Add to this swimming in the sea in Mexico cleared it up ....

I completely understand the sensitive gag reflex--got that, too. I will admit that I hate going to the dentist--I try and breathe through the visit, and mentally put myself in a different place. Would speaking to the dentist about your apprehension do any good?

Last time I tried this the dentist just told me how it was all in my head...!!!

I really don't care if it is....

Being perfectly honest the other side of this is me potentially having a panic attack and what damage I would do to someone who I feel is suffocating me.... other than being strapped down as well ???

I wouldn't worry about it ---- (as long as you're not eating your shampoo)

The problem is you can't really help eating SOME shampoo.

Even if you don't get some on your lips in the shower (which is pretty hard to achieve) its all over your skin so next time you put your finger in your mouth etc.

akJenny

Just to make you feel better.... I was using some shampoo and getting sicker and sicker...

Forget the labels ... when I did actually read the bottle it was right on the front "Enriched with Pure wheat protein" ... talk about not reading the Large print

edit oops I don't mean forget reading the labels... I meant Forget me being that smart to read small print as it as actually writte on the front in big letters!

Since last October I have had really bad sinus' ... and I'm not sure if this is due to change of diet and more risks or allergy or something else.

Basically I always had dodgy sinus' .. but to different degrees and depending how 100% gluten-free I am it seems to be better and worse...

Patient History ... (LOL) I watch too much House

I moved to London last Oct ... At the time I had been through quite some stuff over a relationship and was in a pretty big mess health wise, lost about 30% of my bodyweight over a period of months etc. (starting off from pretty much at the lower end of OK to start with)... so I was critically underweight, no interest in even eating and depressed.

The move I thought would get me out of this... and equally Paris which had been turned somewhat sour by the end to the relationship.

Ooops...

Well the work didn't turn out as planned .(long and irregular hours, no lunch break etc.).. and indeed forced me to change my diet from what had been (prior to the breakup) based on fresh food, prepared from scratch and almost no specialist gluten-free products to eating 'gluten-free products' on a regular basis.

I think partly I knew I had to eat something ... so I started buying the gluten-free products (which in the UK means <200ppm gluten).

On one hand I got back to a reasonable weight... but now I have constant sinus problems...

I mean real constant ... other than 2 weeks in Mexico when they just cleared up at XMAS I literally vomit each morning with the mucus in my stomach and have to clear them out... sometimes its infected (bright yellow) and sometimes its clear... but its pretty much always there...

Just to add a little info, if I use an allergy spray its much better ...

My thoughts are:

1/ I'm getting micro-glutened by some of the products. This always makes my other allergies worse.

2/ Its something environmental (air fresheners used at work? mould at home?)

3/ I also randomly lost half a tooth (which I thought was diet + poor care over years + I never got my wisdom teeth out so the teeth are crushed) but its a big hole (on the inside) and keeps getting infected ...

SO I wonder if the infection is jumping from the tooth to sinus? with the allergies not helping?

Unfortunately one major reason for my lack of dental care is I have a really bad gag reaction and its 100x worse with the sinus problems. I simply can't sit in the dentists chair while they work on it... and its next to impossible to get a full general anesthetic here.

Any thoughts appreciated ....I'm really getting to the end of my tether vomiting each morning...

I agree with this 100% I also have been having trouble sleeping since going gluten free. I used to have to sleep 11-12 hours. Really! I'd go to bed about 10:00-11:00pm and wake up about 10:00 am. After going gluten free I found myself staying up until 2:00 am and still waking up at 10:00am!

Articles I've read suggest you can graudually change your wake-up time. Every 4 days, set your alarm for 10-15 minutes earlier and head to be 10-15 earlier and eventually you'll be waking up at a decent time. I'm in the process of trying it now. I'll let you know how it goes.

Also, in addition to melatonin, plain old magnesium taken in the evening can help relax you and fall asleep. The effect is subtle, it's not like taking a sleeping pill, but it helps.

So how is it going ....

Of course this works best for the "trouble falling asleep insomnia", less for the "waking up in the middle of the night can't get back to sleep kind".

Every 4 days, set your alarm for 10-15 minutes earlier and head to be 10-15 earlier and eventually you'll be waking up at a decent time.

I'm not sure if this is always as effective... I find the shock treatment works half because I'm so damned tired... and half because of when I got up... (well half and half is a guess)

So the 10-15 minutes is probably 'less' effective? but I'd be interested to find out because its obviously a nicer way to do it...

However my problem now is usually that the wake up times get skewed by work (I often end up working till 5-6AM or worse I'm on 24 hour callout) and then I have to really be firm...

This really sucks because I still have to be in work by 9AM... and it totally messes up my sleep patterns.

The only thing saves me at all tends to be making sure I'm still up by 9AM at weekends ...(and it can be damned hard)

Here's to you GFP!

I raise the next shot of vanilla to you in a toast. May both your pants and your car seat remain unsullied! And may you always have a bathroom close at hand! And may you never need it desperately.

Somehow I think you won't.

And here's to caution and here's to taking chances for time to time. And here's to not eating cardborad bread every damn day.

I really do appreciate the information from all of you. I have learned a lot-- and not just about distillation.

Sincerest thanks.

ooh no toast ..

Actually, try as I might to be 100% gluten-free I often find the need to rush to a loo, though far less frequently than before.

And the reason is every so often I do take chances, be it a new product or eating out ...

The most valuable thing I can pass on about this is I have a 100% gluten-free home (with the exception of when I try a new product). The upshot is if I do test something and react I can pretty much isolate what caused it..

I wish I could say I did this from the beginning because I lost a year of my life (effectively).

The problem is often CC. Even though an individual chance is small we are in an environment filled with a toxin. Sandwiches and other toxin carrying foods are ... pretty popular so we are always in environments where people drop crumbs, touch objects we touch etc. Of course each chance is very small but we take hundreds each day...

This is where I find being 100% gluten-free at home most useful. One of the most stressful parts of that year plus was not knowing WHERE/WHEN/HOW. Always give yourself 2-3 days really sure before testing something new. (It took me a while to learn this)

One mistake I made is that I find after a glutening I can be sick for a few weeks... Not all the time .. more in waves so on my bodies timescale 4-5 hrs later I get the 1st signs and 8-12 I'm stuck in a loo.. but after this I get the odd needing the loo quick for the week... then 2nd week and 3rd week I get occasional needing the loo etc. Until i realised this I had great problems identifying the actual cause...because it all got mixed up. This made it hard to know if it was the new food or just a random episode from an older glutening.

GFP... That was a lovely way to use a lot of detail (accurate though it may be) to confuse people who won't follow it, and in the end, doesn't make for a good, practical, applied answer in the real world. In a lab, maybe, but not in the real world. (I may not have your qualifications, by I think my BS in applied physics with a focus on p-chem allows me to speak with some intelligence on the subject.)

That's really the problem because its one of those subjects that unless you want to dive all the way in makes it real hard to explain... from a applied physics POV like wave vs photon theory...

The thing is wave theory actually works in a lot of cases to give a reasonable approximation of observation yet we know its not correct and in some areas it just doesn't work at all.. say single photon diffraction.

The bottom line is we are left with either a simple model or the "current most realistic model" .. but as with everything even close to quantum theory the "current most realistic model" has so little to do with the simple model as to make it inaccessible to anyone without the math and a good deal of study.

Is there ever a single molecule of gluten in product of distillation? Sure. But we know that, as much as we bandy about "zero-tolerance", that toxicity really is dose dependent. ...

My problem here is just that it does not fit observation. I'm quite happy to use wave theory for conventional optics (as you know I'm a keen photographer) .. because it fits observation. However when talking about digital sensors I have to think in terms of photons ... because it fits observations.

The distilled wheat alcohol debate is just that it doesn't fit observation. I know I have reacted on occasion to what I could only pin down to grain distilled alcohol (and it could be something else) .. and others here have had similar reactions ... (and others not) Was it not for this observation then I'd be happy with the simple theory... but at the moment we have two alternatives..

1/ Myself and several others are getting false positives (that is each time we tried we had CC from somewhere else)

2/ We don't know that glutened feeling (but I think we do)

3/ Sometimes it might be possible it is actually the grain alcohol.

So in a way its a matter of what we bet.... I'd put $10 that testing a random bottle would be negative but would I bet my health? The problem from my perspective is perhaps the way I classify foods and drinks.

I tend to be far more a creature of habit post diagnosis than pre. That is I stick to the same brands (mostly) and products that I feel safe with. Reading this board I get the impression others tend towards the same....

So from my perspective, if I allow myself to think all distilled alcohol is safe then I'll probably end up drinking the same thing 2-3 times a week... I already did this with quite a few foods and medicines... that is prior to new labelling laws I already had a bunch of stuff which should have been safe but after the new laws actually disclosed gluten...

Truly having a handful of molecules - and I'm not talking about a single crumb here, I literally mean a handful of molecules - may or may not be noticed by our system.

True but this is what I mean above... if we consume these foods/drinks as habits then a small amount MAY be something that builds up...

Secondly though is the affinity of prolamines for alcohol over water and how this might affect "delivery" ...

I did NOT get sick (I would have by now with certainty. I react fast.) Grateful point to Ahearn!

Therefore I am going to consider this vanilla safe for me. I will try the vinegars too-- one shot at a time. They taste better to me than scotch any old day anyway! rolleyes.gif I guess that is all I can say. Maybe that shot of vanilla would have done somebody else in.... maybe the next bottle from a different batch will get me.

But it begs the question, how much do we really know about this disease if all of us have different experiences and the medical literature is contradictory? Perhaps there is more to this than blindly following strict laundry lists. Perhaps every once in awhile you have to take that experimental leap of faith and take the proverbial shot of vanilla.

Your father did give you the scientific method.... much as you might think 'suck n see' is not scientific that is really the basis of the scientific method.... 1/ observe .. 2/ test ...

The only point to consider (and I'm sure your father will give feedback specifically on distillation) is if the process is consistent. Or in really simple terms does the Mexican vanilla always use the same source of alcohol.

Some of this stuff is easier than others to quantify...

For instance take dextrine and malto dextrine ... In the US 100% are made from corn... no other facilities exist to make them so unless they buy from abroad these are always going to be safe in the US.

In Europe however lots are made from wheat.... (and lots are not) ... so a manufacturer may use one source in one facility and another in a different one or may switch sources as prices fluctuate. Thus quite simply the US stuff is safe because their are no other domestic suppliers and one isn't likely to just spring up or imports suddenly become economically more attractive (as we are basically talking about the waste product anyway)

medical literature is contradictory

1/ We are all individuals ... two people can react completely differently to the same thing....

Back in my early gluten-free days I still had really bad acid reflux... and I got esomeprazole (Nexium) it worked really well except I was the damned poster child for side effects ... the leaflet lists em.. I got em .. then I got given the generic omeprazole and the side effects were minimal ??? My mom was exactly the same ... but then hardly surprising if its genetic...

2/ Who is funding the study.... we mightest well continue with Nexium since AstraZenaca then funded studies saying its previous (but now unprotected by patent) omeprazole was less effective...

Almost all scientific study tends towards a bias.. if the same water is analysed for a consumer or the supplier the tests can be quite different depending if you want to find something or not find something but equally in the wording of the results.

A 'classic' celiac disease one is the MacDonalds statement (print it and show your pop) which starts off saying that the ELISA tests proved negative for gluten and casein.... though this may be true if you read the WHOLE document it later says the RAST tests were both positive.... (just one line near the bottom). Most people reading it will take the "executive summary" to mean it has no measurable gluten...

However ..what do the results mean? Well its probably a tiny amount as as Tarnalberry said earlier.about grain alcohol.is it anywhere near enough to cause a reaction??? (I don't know) ... and as others point out its pretty moot anyway ... since as with most fast food places the chance of CC is probably much higher than the chance of reacting to the traces of gluten...

What I find interesting is the fact the previous statement said they were destroyed by the process ... and obviously that's not quite true???

We also have global politics and all sorts of other economic influences. The EU accepts 200ppm as gluten free, Australia has zero tolerance... I'm sure there is a reason or several but obviously its confusing. Australia is one of the toughest countries for exporting food to.... and doubtless there is an element of protectionism... (and I don't blame em) ...

Much as I sympathise with Richards commute (I have a 15 min walk) .. I would quite honestly prefer to do his commute without worrying about my pants and car seat!

I am not one to debate gfp ( blink.gif do I look stupid? wink.gif ) I suppose that the bottom line, as Pop said, is a personal choice. And, it's obvious here that many have different levels of sensitivity; although,

It is a subject I worked on specifically in a research lab... I hardly expect Joe and Jane Doe to know this...

I have never seen any Celiac organization that does not consider distilled products safe.

Australia I believe...