gfp

I couldn't agree more. And for me, if I eat bad, I feel bad, which means there is THAT much more of a chance that I am NOT going to do ANY housework. It becomes a vicious cycle.

I know exactly what you mean ...

The worse I eat the less motivated I am to do anything else ... and things start to back-up.

And I don't think her doctor purposely treats her like a guinea pig, he is just ignorant, but he means well.

Probably, but to me this is a question (in general) would a Dr. be so lax about a potentially damaging test if they were performing it on themselves or their mother or daughter?

Most people who had biopsies did not get sick from them. My concern is, that she shouldn't be glutening herself for nothing beforehand.

I don't think gfpaperdoll meant the biopsy itself, more the gluten needed.

My concern is still what if its negative after a week (as is likely) .. when to stop?

Its not about the dr. selling stuff, for me its when do we stop ? Meline has already tried gluten, gotton sick ... so if the biopsy is negative what does it mean? Unfortunately inmany cases it means either 1/ the Dr will not diagnose celiac or 2/ The doctor will keep testing ...

The largest chance after 1 week by a long way is a negative ... but this negative doesn't prove anything ...

.......I don't know kbtoyssni....To tell you the truth he believes that he can confirm celiac even with 2 days of gluten.....I think I will try it....

Then he's an ass!

Even if you eat gluten for 6 months it can't guarantee the biopsy will be positive.

I think the fist explanation makes more sense ..

but he wants to see the damage in my villy)

So I would carefully consider this... Why does he want to see damage?

What you want to ask yourself is what if its not positive after a week? Will you continue until it is?

I read one case study where a Dr. took a 7 year old child and repeatedly subjected them to a gluten challenge.

The result was that he eventually got a positive biopsy from a 14 yr old teenager !!!

Some poor kid lost 7 yrs of their life to experimentation by a mad doctor who was just using the kid for experiments.

This makes my blood boil ...

Do you think your Dr. would poision himself just so he could see the damage?

Next time you see him take in a bottle of caustic soda and tell him you'll take the biopsy when he drinks the caustic.

If he asks why tell him you're curious and you want to see the damage it does to his digestive system!

Try to remember that no one will remember if your house was clean everyday or if you kept up with the laundry but your two year old will remember how it felt to play with you, to read with you, walk and talk with you.

Well sometimes they do .. but so what!

I'm not the tidiest person naturally but I am busy at work and have little time BUT one thing I always do is COOK.

I might end up making a mess cooking and not get round to clearing it up that night if I'm really tired out but ... I always try and cook and always try and make something healthy.

We are what we eat as the saying goes ... IMHO we are not how much time we spend vacuuming, ironing etc.

For me I put eating and my health ABOVE these .... if people remember what the heck... so I didn't vacuum but at least I'm well.

Weight gain has many reasons....

For a ex-undiagnosed celiac one main one is the empty calories.

Prior to a gluten-free diet we ate and didn't really adsorb calories but also we didn't adsorb nutrients, minerals etc.

When your body needs nutrients it just makes you feel "hungry" ... it can't say eat more iron or eat more potassium ... (although it can do weird things with cravings) .. but overall it just wants MORE ...

Now your gut is healing you are adsorbing both but you may have a backlog of nutrients to catch up on that you are deficient in. Hence you feel hungry...

Add to this that now every calorie counts ... you are now actually adsorbing those calories...

My advice is to identify what your missing .. (you can do testing or you can guess from cravings... however this isn't always the best) .. So the best i think is eat nutrient rich foods ... people say "cutting out carbs works for me" because most sources of carbs are poor in nutrients... (there can be other reasons too)

On top of this going gluten-free we also miss out on things like Vit E from wholegrain... etc. and it is easy to fall into a trap about eating things specially made as gluten-free. Most of the 'gluten-free' products are very poor nutritionally ...

I still eat carbs (rice and pots) but I rarely eat gluten-free pasta etc. rice and pots are also fairly nutrient poor...

So as someone else said, we tend to have histories of eating what we like and not gaining weight and this can lead us to believe what is "normal for us" based on when we were maladsorbing.

Concentrate on fresh fruit, vegetables, meat and fish ... preferably lean but the main thing is make sure you are getting the nutrients so you don't feel like snacking.... I rarely snack... mainly because almost anything gluten-free and easy is usually poor nutritionally so I try and wait and eat properly.

This comment really encapsulated what I've been thinking this week, and it's brought me full circle: GFP, you've made me realize I've been way to cocky about this issue of risk-taking. I'm relatively new to this and was so happy with my initial improvement, I think I just got over-confident. I've been doing great, gotten my family on board, etc.--but also, for the last week, I've been taking more risks, grabbing a Starbucks latte one afternoon, going out to eat twice later in the week, etc. I've even gone so far as to preach to other newbies that this isn't so hard, that it's not as bad as they think, that this is easy to do if you know what you're doing, etc. But now reality is setting in. After the latte, my neck and head started hurting; after the 2 meals out, my neck and head are feeling worse, and it's been a few days now. Even though I was "so careful" about what I ate, the simple act of getting food out was risky, you're right.

So to those of you to whom I've preached: I'm sorry, I was too proud! In my own defense, my motives were good. I wanted to encourage you to stick with this and not give up. But the comments of GFP and the others here are wiser than anything I've said elsewhere -- it does take constant attention and care not to get accidentally sickened, and risky behavior is just as bad as intentionally eating gluten (even pizza!)

Ellen

Ellen, a little pride is not such a bad thing, specially if it helps us to keep focused ... however when it gets to the point you get coky with yourself then its lost that value (in my humble opinion)

Its all to easy to con ourselves and .... well I found out like you... I'm flattered by your comment but it wouldn't be honest of me not to point out I did just as you have done

This is why my sig is what it is ... mankind will willingly believe what mankind wishes to believe ...

So my view now is quite simple, its just stats... and yep stats can suck but they can also be objective ...

Unfortunately the gluten damage equation has too many unknowns to be easily solved but it raises a lot of questions...

My personal belief (backed up by plenty of fact but also conjecture) is that frequent glutening is worse than occaisional...

What we know is it causes an immune response .. our body works overtime stressing the thyroid and gut... (even if you have no symptoms outwards) we also know anti-body production carries on for quite a while after the gluten is expelled and that it can take a day or soto get expelled...

Equally our villi become incrementally damaged ... if we then eat more gluten before they are repaired they just do the 3 steps forwards and 2 back ... worse as they become damaged our ability to absorb nutrients becomes worse and worse and hence our bodies resources to self-repair become worse.

The way I see it if I gluten myself once a week I'm continually stressing my body. Villi are damaged and don't get the chance to heal... and the very process of healing is what causes cancer (again stats, every tome a cell divides we risk it niot doing so correctly and this carries the risk of cancer)

How about once a month ?? I honestly don't know .... I can say from exprience once a week and you're on a downwards spiral... once a month??? and once a year... well I think this is plently of time to recover...

However I don't KNOW... and it might be once in 2 months does no real damage or once in 6 months...

On another side I don't find the amount of gluten makes any difference ... or if it does its minor and masked by other factors... One huge factor is ... already being glutened... and general health, sleep.. you name it...

So sometimes (and I mean sometimes like once or twice a year max) if I get accidentally glutened I might go the rest of the day glutened .. I can't say its not bad BUT I suspect its no worse and probably not so harmful as getting glutened once or twice a month... I usually only do this on vacation when I'm forced to eat out....

So what works for me is minimising risk.... fast food is way at the top ... its the way its prepared and the fact its usually done 'fast' ... if I'm doing really well I might risk a meal with friends where I know the chef or owner... even this can cause slips... if that happens I get super strict... like no coffee's out etc. because I know if I get glutened again it will knock me harder ...

Thank you for understanding gfp. Like I said I don't have a diagnosis so I don't know that eating the pizza did any damage to me. I am choosing to be on the diet against what doctors and tests are tellng me. I guess I shouldn't have said I would cheat if I had a diagnosis but no symptoms because I don't think I would. Of course I would want to be around for my kids and my husband. What I really meant was it is easier not to eat something when there is an obvious adverse reaction.

It might be easier with an obvious reaction but like Ursa say's it comes eventually ..

The big reason for me is that when I was diagnosed I had done somuch damage it took a long time to even feel half normal (and I'd half forgotten what half normal was)

The odd mistake and you take a step back but keep going anf you end up taking 2 steps back for every 3 steps forwards as the damage is worse..(and the body can't repair because its not getting the nutrients). not only that you face doing irrepairable damage.

I always got sick in around 30 minutes before the diet and in the first few months of trying the diet when I accidentaly ate something I shouldn't have. Was I wrong? Pizza was the one thing that always made me sick before.

This is where you stand to put yourself back to ...

Try thinking how far you have come... instead of thinking about the one off think about how you were as a whole..

OK, we had scare tactics, sarcasm and more ... so I'll roll it all into one (no malice meant)

If you cross the road without looking one time does that make it OK?

However mainly, as Ursa said ... these reactions can take time from a hour to a week ...

I personally find no correlation with what I get glutened or nor how much ...

One thing I wil say though is I haven't seen any evidence that a whole pizza does more damage than some CC (perhaps it does, I just can't find it)

As for eating the Pizza ?

Well many people here take risks ... the pizza is a sure thing but plenty of people eat out or buy pre-prepared food. Any-time you eat out is a risk, obviously some pleaces more than others. So if someone eats out once a month and gets glutened say 10% of the time then is this worse than eating a pizza once a year?

Some will argue that deliberatly doing it isn't the same as taking a risk but really it is. If the chance is 1:10 and you do it once a month for a year then its pretty much as certainty as eating the pizza.

Plenty will preach about not deliberatly eating gluten then eat McDo's fries which categorically contain gluten ... not to mention a huge risk of CC.

Eitherway, I hope it was worth it

If you make a seperate post requesting anyone who has a Dr. even half close to you then someone might be able to help out.

Once you see a UK Dr. who agrees and puts it on your records then the other Dr.'s are not likely to disagree.

You can request an emergency Dr. and say you are visiting to get an appointment ...

With a bit of luck you might find a Dr. willing to put celiac disease on your records without putting you through eating gluten for a test.

Unfortunately getting a half decent GP is somewhat pot-luck (as you will doubtless have realised).

I know its hard to get a GP but you are probably better to try and find one already educated.

If your GP doesn't know the basics and doesn't know you need to be eating gluten for a positive blood test then convincing him/her might be an upward struggle.

They didn't listen the first time so going back and saying "these people on an internet message board said" is unlikely to change that ...( in my experience )

They have sent you for test without reading about the test... it doesn't seem they are likely to want to read up ??

It seems you have enough on your plate without trying to reeducate your GP ?

I can understand the depression and the fear--what I can't understand is how the boyfriend let it go so long before he called for help.

Well I guess when she say's 'maybe tomorrow' he's more worried about possibly traumatising her and forcing the issue.

I know its a long time but she was presumably pretty depressed and it can be very hard to choose the moment to 'betray' that person's trust.

Retrospectively with 20/20 hindsight he probably knows he should have done it earlier but when exactly is a difficult question ?

1 Week ? 1 month ?

Having lived with someone manically depressed I know its very hard to make that betrayal ... (as they see it) .. at some point you have to decide for them they are not fit to make the descision about calling in help but in the end it has two outcomes .. they may be committed for their own safety (and involuntary pscychiatric treatment is hardly the most effective and can push them over the edge) or they might come round.

I had to walk away from my ex ... I took the step of informing her parents (which she will never forgive me for) but as someone told me here (no names) she has to make that descision to get help by herself or die.

This guy will get a lot of flack for being put into an impossible situation ... which I'm sure he now realises he could have handled better but after 1 month he had no idea it would go on for 2 years...

IBS is the number one misdiagnosis for Celiac. It is a garbage can diagnosis for when the doc does not know why you are having stomach issues.

I have yet to see a decent definition of IBS. It seems to shift with the seasons and moon cycles as far as I can tell.

I think its just an acronym doctors use for I'm Bamboozled Sorry ...

I think most cases it just means they don't have a clue and won't admit it. Calling it something makes it sound like they know what it is I guess.

I'm with the others that a primary reason for non improvement after an initial stage is often due to other intolerances than gluten.

I would also hazard a guess that many cases of IBS wil turn out to be other food intolerances noone has come up with a test for yet.

one related aspect to consider is the gluten-free diet can make us change what we eat quite significantly. Certain 'food's' such as Soya should probably never be eaten as a source of actual food but we get classed with the 'healthfood' freaks who will eat anytihng unconventional so long as it sounds exotic and we end up eating more of it just because its easier to buy gluten-free that way in a sort of catch-22.

I'm not fanatical about not eating Soya but I do try and limit it to an absolute minimum, likewise I TRY and limit my diary intake

Hey Again Folks

Firstly, gee let me say I hope I posted this question to the correct category of forum????

I am wondering, if I do "reintroduce dairy using Lactaid etc meds" and it turns out I am actually NOT lactose intolerant, can/will the meds either harm me, or LORD FORBID "worsen/effect my symptoms"?

I do know that once in the distant past I'd tried taking a product called BEANO (enzmes for digestion) and I had an extreme cramping etc attack lasted 2 days from it... now because of course I already do have all these ongoing symptom troubles, I am a tad leary that if I take the Lactaid and it somehow is disagreeable with me that I will NOT be able to distinguish at all in fact that it's the Lactaid rather than Celiac itself? ANY info, suggestions MUCHLY appreciated... I really would like to have a bit of "butter" on my currently PLAIN everything, but am terrified to in case I am truly lactose intolerant also, I do so much want to get better and fear doing anything to PROLONG the healing process I've begun!

Everyone over the age of 5 is lactose intolerant. We were never designed to drink milk once we are weaned. We find eating monkey brains repulsive, many far eastern cultures consider drinking a cows milk just as digusting ... Personally, I love cheese but hey ... I eat it because I like it not because i think its good for me.

Quite if lactade can hurt is another matter? But probably not so much as the milk in the first place.

It really depends what you call trouble....

I tend to view all resto's as risky, its just a fact of life....

You seem to be doing everything correct but remember you are dealing mainly with people on minimum wage who might lack motivation from time to time.

My advice is never to expect too much. Its frustrating but less so than looking forwards to eating something and turning up and just loosing confidence. Often its "no problem" then 2 minutes later "would you like some bread" .. etc.

I've found the worse thing is when you wait and wait and your absolutely starving, then you end up taking risks you wouldn't otherwise have taken.

I tend to find its best to find 2-3 places that you feel a good vibe regarding confidence, then keep going back and tip like crazy when they make a big effort or remember something ....

Try and be positive, if you are steered away from something be positive you didn't risk it... sometimes hard when its the item on the menu you really want... or when the waiter(ress) suddenly suggests more bread? but that doesn't always mean they were not on the ball when talking to the kitchen...

I always try and talk to the kitchen myself, when possible but its sometimes hard and then I try and get a floor supervisor and ask them. London is terrible for getting to talk to the kitchen's and the floor staff often don't speak English which doesn't help ... A couple of weeks ago I ended up asking for the supervisor because the waitress didn't speak English beyond "You want drink something" and finally got the supervisor who spoke better English but I still ended up speaking in Italian .. (at which point she suddenly got the point ... "oh celiachia .. si" ... After this she ran off to the kitchen and communicated in whatever language they shared (probably sign) but I ended up OK

Anyway, that probably doesn't apply to you but it just shows that things often don't do as expected but the outcome can be OK. I was lucky to get an Italian ... probably better than finding an English speaking waiter/ress (not that its really possible in London) ..

I did however find one place where all the staff seem well trained, I was told I can't have the fries ... well it would be easy to be dissapointed (since its a grill) but instead I convinced myself I'm over the moon finding somewhere understands CC.

For every bit of advice there are examples of the opposite ... phoning in advance is good but often the staff will be different when you arrive... etc.

I honestly think being flexible and have a backup so you can walk away if they just seem to not get it is the best...

Finally .. take advice from others and stick together. Sometimes I find myself just leaving the sald because they added some unknown dressing... but uless you make a point the next celiac will get the same.

Sometimes I think we are our own worst enemy when it comes to awareness ?? How many of my bad experiences are due to someone before me and how many after me got poor awareness because I didn't speak up?

It appears many autistic children have their level of autism reduced when Gluten-free/C-F ...

Many of my friends can tell from my mood/level of disassociation when I'm glutened so as a mom I would think you have to go with your 'feeling'.

You might check poop but its hardly definitive ... and you might se if other children have a virus or tummy upset but other than that your mothers instincts are probably as accurate as anything that can be quickly achieved.

(If you get blood tests then chance is its over before you get results .. so its a bit of a non issue since by this time he will or will not have passed on a tummy bug.

HearHear!!!! Scientific research is also usually backed by the very people trying to make a buck by having said research turn out for their best bottom dollar. Current medical scientific research tells my whole gang to eat wheat to our heart's content because we have no medical scientific reason to avoid it despite severe sickness and undeniable positive results from a gluten-free diet. The only research that might change that has not been published yet or examined by other scientist yet so thus it is unknown.

While it is nice to know that today's research claims it is safe, in 50 years will they say the same as technology becomes better???

And if you are allergic to wheat, would you still react?? If so then it still has enough wheat to cause someone a problem. And thus still trip autoimmune reactions.

Stacie

This is the bottom line ....

The 200ppm limit was set by the food industry, not based on scientific study.

The food industry itself then paid for the studies saying celiacs were no worse off on 200ppm than a 'normal' gluten-free diet.

This in itself is fundamentally flawed... it took 50 yrs to 'prove' smoking causes cancer ... and this was in the face of a lot of evidence because its so easy to fix a clinical trial.

You can start by pre-screening candidates ... the ones you worry about you throw out. So in the case of a gluten-free test you just make sure those on a gluten-free diet have no idea about hidden gluten or cross contamination....

Its hardly difficult, most of us comiong here had no idea until we found this board!

Then you say '200ppm limit' .. again fine this doesn't mean the test sample are eating 200ppm, just they are eating something with 'some gluten' which of course can be controlled specifically. 200ppm was not the limit for testing, it was the limit for testing my ELISA tests, GC-MS could for the last 20 yrs detect <1ppm. Its just more expensive but hey, if your doing a study you do one set of tests to determine its VERY LOW and a seperate set of qualitative tests to say 'its present'

The tobacco industry used this type of leveraged testing successfully for 50 yrs.

Really, you have to wonder why their testing is even considered valid?

You got excellent answers so far so I'll just add.

I think its very important to realise just how we cope and put up with symptoms for years.

In many cases we only actually notice symptoms when they go away because we adjust and learn to live with them.

In the case of chronic pain our bodies get flooded with endorphins and our bodies get practiced at producing them.

Chronic pain is however a symptom, not a disease in itself. Hence we alleviate the symptom while allowing the disease to either get better or worse on its own.

In the same way many of the effects of celiac disease we get used to dealing with.... and there is also a part of this which is 'Im just getting older' or 'everyone must feel like this'.

When we go 100% gluten-free our bodies also loose the practice at removing the toxins and handling them, just like a 40 a day smoker can process the toxins and still feel OK ...

Then when we slip up our bodies have lost this practice ...

However the IMPORTANT thing in this is the 40 a day smoker might feel oK but that doesn't mean they are not doing damage!

They will probably even find they have symptoms they didnt realise if they quit.

Gluten can be the same ... Im sure there are plenty of people who go mostly gluten-free and say they are fine ... and I would through experience say they are probably not as fine as they could be. Having done this myself and other on the board I experienced a great improvement going gluten-free. It was just nagging things kept bothering me but otherwise I was so much better.

Then one day ... after one too many slips and nagging I went the whole way ...

I dicovered lots of symptoms over the next weeks and months. The improvement wasn't so drastic or quick as the gluten to gluten-lite ... but it was far more complete. I went from migranes 1 a month to 1 a year.. for instance.

"Latent" simply means hidden. Not everyone with celiac disease presents with visible symptoms, but the fact that you test positive for the antibodies means you have it.

It is possible that the disease is still early and damage is not yet sufficient to be noticeable. It is also possible to have a negative biopsy simply because the damage is is parts of the intestine, and the samples came from undamaged locations.

You should definitely stay on the gluten-free diet.

Can't fault anything psawer said ...

I would go further though as darlingdeb said

I have heard of "latent celiac" before and I truly feel a doctor is doing the patient wrong by telling them not to worry because it's just "latent celiac"!

This reeks of "Do this until you damage yourself then we will take you seriously"

Its akin to someone seeking help for alcoholism and having a liver biopsy within 'acceptable' norms.

Despite the fact they tell the Dr. they are drinking 3 bottles of hard liquor a day the Dr. turns round and say's but your biopsy is normal .. come back when you have damaged your liver.

I can only presume you went to the doctor for a reason and were tested for a reason....

Antibodies came back positive ... regardless of what we CALL it you're reacting so why wait until the damage is obvious???

Meanwhile you are stressing your thyroid and immune system and possibly doing neurological damage ...

Many of us are happier (less depresssive/reclusive) gluten-free regardless of other symptoms...

This in itself offsets the inconvenience ....

Not long ago 200ppm (the lowest detection limit for cheap testing) was considered safe.

Now cheap testing goes to 20 or 5 ppm ...

For many years current scientific research could make no definitive statement that smoking causes cancer.

I would say when people make their descision that current scientific research is not the last word...

I am certainly unaware of any long term studies on this (and there hasn't even been time) ... but I would be more worried what future scientific research will say when long term studies have been made.

I reside in Ontario but grew up with my family in England.My family believed themselves to be true English.Recently we found out that we are of Irish decent through my fathers side the same side that has passed on Celiacs to me.There is some belief that Celiacs originate from Ireland.Whats your background?

Please consider this to be a bit of fun.

As you yourself mentioned ....your family considered themselves to be of English blood .... but there is no such thing. Nor Irish nor any other racial group (except Icelandic and perhaps a few very weird tribes like Kalahari Bushmen).

Almost all racial groups are mixed through centuries of rape, infidelity and people simply wishing to change their name because of discrimination. My Maternal great grandfaher was one of them ...

From random screening 1:25 presumed fathers is not the biological father of the child they presume is theirs. (And this is with today's access to birth control), in the past without birth control one can only assume this to be higher. This is random testing .. amongst those asking for paternity tests the number is 1:7

This isn't such a big secret .... but its something Americans tend to fixate on (in my experience) due to their status of being almost completely an immigrant nation so I guess everyone wants to come from somewhere. Its also fun that 'English' means little if you were conceived in England in the 1940's ... close to an American base.

If you go to Ireland and do genetics studies its soon apparent that there is a huge influence of 'English' blood through systematic rape under occupation. There is a lot of Spanish blood in the south due to many Spanards being washed ashore in the Armada. There is a huge amount of Viking blood following 400 years of rape and pillage ... etc. etc.

... and of course Ireland wasn't uninhabited before the Celts ...

So its a bit of fun but for some reason many DR's and researchers like to jump on this .. which I feel completely misses the point.

The reason I am a bit against this is some people on this board have been told point blank by their Dr. they don't have celiac disease because they are from a particular racial group .. the Dr. hasn't even tested.

my idiot dermatologist took mine right in the middle of the rash and then told me I definitely didn't have DH)

This just illustrates how unreliable testing can be when the people taking the tests don't know what they are doing.

The same goes for blood tests and biopsy and tsting children in general.

Its not a black and white test even if sampled correctly. Its about levels above 'normal'.

Many things can influence the tests ... and like any other of this type is someone with a result of 19.5 sicker than someone with 20.5 if the 'normal high range is 20. Perhaps the same two people sampled a day later would have reversed results. Is one positive and the other negative?

Secondly, if you stick to the diet then the numbers SHOULD go down. This doesn't mean you are cured.. it means its under control ...

By the time many of us actually get a test ... we have already tried everything, celiac disease is like that! Its the last thing the Dr. tests for in many cases and many of us already noticed we feel bad eating wheat so we either cut it out or reduced it ourselves.

When you add to this the random element of how experienced the person taking the sample or blood is and lack of advice that we must eat gluten for a period before testing then it really adds a random element.

So its worth repeating Ursa

A negative test can absolutely NEVER rule out celiac disease

Quite honestly it varies so much....

I don't even think it has to do with how much .... indeed it seems totally random how long it takes and how long it lasts...

I'm sure quite a lot of things influence it like general health and being tired or not etc. but the best rule is there seems to be no general rule.

LONG TERM DIGESTIVE PROBLEMS AND POSSIBLY RELATED IRRATIONAL BOUTS OF ANXIETY, PANIC, AND PARANOIA-LIKE THOUGHTS. HAS ANYONE ON THE FORUM NOTICED A SIGNIFICANT CHANGE IN MENTAL HEALTH AFTER DISCONTINUING GLUTEN?

Yes ... Yes and Yes. = Short answer....

Long answer is follow aikiducky's advice above....

Gluten 15,

I'd watch it with the Rice Dream if I were you. I used it for a few months when I first went gluten-free and thought I was just fine, too. Then my reactions started returning and it took me awhile to find out that that .002% (or whatever it is) of barley was getting to me after all. (I didn't know it was in there at the time.) Personally, I wouldn't touch any product deliberately with any gluten. My recent Frito poisoning being a perfect example. I think it can catch up with you. Just a thought...

lisa

I had similar experiences with "low-gluten" ... it's almost so subtle but seems to build up.

I do wonder how the people are going to be doing in twenty years time who are eating "gluten free" wheat starch regularly. I don't know if there are any really long term studies about the effects of that yet.

Me too. I know it affects me but how will it affect me long term??

I'm not sure that's so likely, as I heard that it's much more expensive for the manufacturer to process out the gluten fot gluten-free flour. When I was in the UK a few months back it seemed to me that all of the gluten-free bread in the shops (that I saw) was wheat free also and that only prescription gluten-free bread was wheat derived.

This is largely because of the weird 'definition' in the CODEX.

The weird part is that naturally gluten free isn't allowed to be called gluten free. The rest of the complexity seems to come from this sticking point....

I think the original idea was that things labelled gluten-free are basically specifically manufactured as gluten free but because as you say its next to impossible to economically get the gluten under 20ppm they left in the 20 and 200 ppm limits.

Of course time has moved on.... most of us prefer wheat FREE/Gluten FREE .. but we are still left with some old definition ...

The original 200ppm limit was also just arbitrary. It happened to be the limit at the time for the cheapest testing that could be used for screening not based on health issues.

The food industry then made studies on the effect of this limit ... so that is subtly different to determining a 'harmless' limit.

One common thing is regardless of toxin it seems limits keep going down and down as more is understood.

Back when I was young asbestos (for example) was considered harmless then slightly toxic and carcinogenic and now its pretty much zero tolerance. I don't expect the effect of gluten is going to be any different to this model and as more is understood and known the 'safe' limits will be moved down....

Meanwhile ....

Okay, I misunderstood you then. Yes, it has barley malt. They are now declaring it gluten-free, because the gluten is below 20ppm. But obviously, it really isn't 100% gluten-free.

I just found here today that in Europe (where the 20ppm originated) they would not call it gluten-free, but would rather say, "Suitable for a gluten-free diet". If they say 'Gluten Free', it is 100% gluten-free.

I wished they would do the same thing in America, it would make things easier. Here in Canada the Rice Dream doesn't say it is gluten-free, because here they can't say that if it isn't 100% gluten-free.

Personally, because there are several kinds of rice milk, I would choose one that is 100% gluten-free above one that isn't. Because who knows, over time it may do damage, even if you don't have obvious reactions. But of course, it is a matter of individual choice.

Unless this happened and i didn't notice then I don't think its so clear.

So far as I know the Codex didn't change and the definition in the Codex is pretty confusing.

(Don't shoot the messenger here..I agree this is crazy)

Rice Milk can't be called gluten free UNLESS they add gluten. Because ... it can only be called gluten-free IF it has gluten removed or an ingredient with gluten removed (below 20ppm) added!!!

It can be called naturally gluten free ... or they can add barley malt <20ppm and then call it gluten-free.

Please don't shoot me.... this is how its written not what I agree with.

The bottom line problem is ... its technically illegal (as the UK signs up to the Codex which is voluntary) to label as gluten-free but they can use 'naturally free of gluten' or 'suitable for coeliacs' which have no 'legal definition'.

On the other hand if the food itself is naturally gluten (like flour) then they can say gluten-free if its 100% gluten-free.

Because so many 'complex' products are neither 'usually' with gluten or without (say mustard) these all fall into a black hole.

Because of this the 'suitable for coeliacs' label has arisen but it similarly means nothing. That is some manufacturers use it as a catch-all and others probably make every effort and then some. Those who I trust actually use wheat free and barley free etc. on the labels!!

At the end of the day quite a few manufacturers are actually making lots of efforts but its almost an uphill battle for them because of the way the codex is written. Several supermarket chains flouted the law for several years by labelling gluten-free on own-brands when it was actually gluten-free..(hence technically illegal to label gluten-free).. so I actually was quite pleased with this (its not like they were really going to get in trouble but all the same I appreciated the effort)

I hope I'm wrong and this has changed but .... with Coeliac UK interfering and lobbying it seems unlikely.