gfp

Not to go completely off-topic, but...

I wish to know who is responsible for starting this false belief. Sure, people did die more often from relatively survivable diseases, but also from wars, etc, not to mention horrendous plagues. But in the case of many diseases it was mostly due to ignorance, poor hygiene, etc.

A few examples:

Open Original Shared Link lived to over 70

Open Original Shared Link lived to over 70

Open Original Shared Link lived to over 77

I'm no historian, and I don't know the names of very many people from past centuries, but these surely aren't the only people to have lived to such age.

----------End of Detour--------------------

Pliny lived to 80 and was so obese he had to be carried ... but these are exceptions not average life expectancies.

People had 10-12 Children and 2-3 lived ... many many people died in infancy.

I have a family tree on my father's side back to 1218... his cousin was a professional genealogist when you look back at the lives even 200 years ago its incredible the amount of children dying.

This is just the first google on life expectancy tudor ... Open Original Shared Link

So yes some people lived longer ...

Life in Tudor Britain was harsh - the average life expectancy was just 35 years.

So the chance is you or I would not be here. Indeed statistically we would likely never have been born since our grandparents or parents would have died...

The reason I feel so strongly about this is having worked in third world countries with limited supplies of vaccines and antibiotics. I have seen mothers who have walked for several days to get their child to a real doctor ... and this was entirely preventable.

We take these things for granted ....

Poor hygine and sanitation don't help but lack of antibiotics and vaccines is what causes many plagues... when something treatable by 20c worth of antibiotocs gets loose and there is no medicine to stop it spreading. In other words it turns a local disease into something that spreads uncontrollably i.e. "plague".

So IMHO its so easy to knock antibiotics, and some people now seem to regard them as some sort of "Evil" ... but without them our "civilised" lives would be significantly shorter on average.

p.s. I chose Tudor times because people were largely agrarian. In other words they were not crowded into cities with poor sanitation.

all information I have read so far says that once gluten intolerance causing celiac is triggered then it is never fully gone. I do find it interesting that bacteria could be responsible, but I doubt the study has gone on long enough to see if the gluten reaction does not come back eventually. I wonder if in more years these people "cured" by antibiotics get a gluten reaction that occurs after another trigger sets off gluten intolerance. Their genes have not changed, so the risk is still there.

Teenagers often go into remission, but then gluten reactions eventually come back. I believe this might of happened to me.

I agree with you gfp about the definition of celiac not being set. My doctor is willing to diagnose me on diet. For me, I speak only for myself, celiac is one aspect of gluten intolerance. It is one symptom. for everyone who is gluten intolerant to be considered celiac, the definition of celiac would have to be gluten intolerance and not villi damage caused by gluten intolerance. I do NOT know if I have damaged villi cause I have never had a biopsy. I do know I had GI symptoms that are gone. But, I also had mental problems. Trust me, wanting to die is a serious symptom to me. Even if I was never going to get villi damage, I will NEVER eat gluten again because of the emotional symptoms it causes me. It is just as life threatening to be depressed(and my life is blessed except for this).

An opinion question here: If someone does have not have villi damage and hypothetically never will(play along with me here) do they run a higher risk of the same cancers?

I would cure myself if I could. Maybe it works in non celiac gene gluten intolerant people. I wonder what those people in the studies genes were Obviously way more research needs to be done.

Taking the last question last ..

An opinion question here: If someone does have not have villi damage and hypothetically never will(play along with me here) do they run a higher risk of the same cancers?

Its a two parter ....

1/ Increased Cancer Risk of the digestive system is partly a direct result of villi being destroyed or more accurately new villi being grown. Cancer (from my understanding) is caused at cell mitosis (division). So the more the villi are forced to divide cells to regrow increases the chance of one of those being mutant and causing cancer. (Simplistic view).

Our body has many many cell types, those designed to die and replicate have a sounder "code" than those not. For instance the cells of the stomach lining are designed to be continually killed and replaced over a short timeframe hence their mitosis is more reliable.

2/ External influences .. so environmental influences also play a part. For instance we continually make new skin cells but the risk of cancer increases when we get sunburn. So presence of an antagonist (gluten) may act as an accelerator?

3/ Genetics .. exerts a strong control. Are those at risk of celiac disease also genetically pre-disposed to certain cancers and does this overlap?

There are a lot of ? here .. because its not researched from that standpoint..hence me hammering on about the criteria for diagnosis. Because the current "golden standard" is worse than meaningless (since complete destruction of villi can occur without any gluten/celiac disease) the whole genetics side is skewed and we can't say by how much.

I do NOT know if I have damaged villi cause I have never had a biopsy.

Exactly and even if you did ... then what would either a positive or negative really mean?

Or to really throw the cat amongst the pigeons ... what if you had both positive and negative ?????

But, I also had mental problems.

The problem as I keep repeating (sorry) is that a neurologist would have completely different criteria for defining celiac disease than a GI.

I personally think the clear definition is the auto-immune response, not allergy response (IgE) ... BUT the problem is that in order for each study to be taken 'seriously' the IgA and IgG positives have to be verified against biopsy.

Somehow we are cutting out this group .. those with +ve blood and auto immune response and no or little villi damage... hence all the stats are just skewed and even firther we actually miss out on a huge thing...!

Its continually implied depression is caused by maladsorbtion (only) ... and the whole group of those with villi but positive blood tests that prove it is somewhat more complicated are ruled out because they don't have +ve biopsy.

As you and I are very aware ... feeling like crap when we eat gluten is a lot lot worse than having D or cramps.

Like you I never went as far as the biopsy because I went gluten-free after the blood tests and nothing on the face of the earth will make me go back to feeling like that!

In the U.S. the Fair Labor Standards Act mandates a half hour lunch (off the clock - you are free to go where you want and do what you want) if you work 6 hours or more. You are not required to take it but it is required to be offered. Most employers require you to take it because there is really no other way to prove to an auditor later that it was in fact offered. Non-compliance can result in hefty fines.

It's good to know that in the UK there is a similar law. Of course convincing your employer that compliance is cheaper and easier in the long run than non-compliance could get ugly, but stick to your guns. Here in the USA, what you describe would be called a "hostile work environment" which is another no-no.

Thanks, like you say its the 'getting ugly part'. We recently had to put in a bid for some Olympics related work which involves a whole set of "heath and safety" compliance, non of which we do of course but perhaps it would provide a vehicle to bring this in?

I know companies before (I didn't work in the UK for many years) insisted on Lunch breaks (as you say) but H&S is completely ignored at my company... we are expected to do long (stupidly long) hours... at one point I worked 1 week with perhaps 2-3 hours sleep per day and 2-3 times to eat anything at all.

Following this week I actually passed out ... thankfully at home and thankfully not alone .. but I just passed out from stood up and came round apparently 2-3 minutes later.

The problem is everything is put on us... any problems and we are expected to take care of them. At one point we were working at a client site and the manager offered us food after we had worked all through 1 day and 1 night and most of the next day with no breaks. It was declined on our behalf and we were then told if we were not allowed to eat or take a break until the job was finished. I realise this sounds far fetched but that was what we were told...

When we said we needed sleep that night we were told we were obviously "not dedicated" and I asked what time we had to turn up.. (This was at 4am) .. I was told "We start work at 9am, Ill leave it up to you...."

The more I explain this the more I wonder what the heck I'm doing!

Lunch has never been easy at work, the owner will often make snide comments if we take lunch but not allout ban us taking it. (Snide comments like Your obviously not commited to the company)

Regardless of this he takes lunch!

Now we have a new regime ... he has decided lunch is unhealthy ... and decided breakfast is not (some thing makes me think due to his wife criticising his waistline) so now he has gone out and provided us with breakfast...

Well, if you call mixed cereals, biscuits and stuff as 'breakfast', he even bought me free-from cakes and biscuits.

Today I missed lunch (again) .. its at least 3 days a week even trying to schedule it in I'll get told to do something immediately just as I'm about to take lunch, today it was by phone ..

So he waltzes back into the office at 4PM (doubtless having had lunch himself) and asks if everyone got breakfast...

I retorted I'd rather be able to take lunch to which I was told lunch is unhealthy...

The net result of this is I can no longer even buy my own lunch from Sainsburys and use the kitchenette safely... I long ago gave up trying to actually take a lunch break ... now I can't eve bring my own stuff and eat safely at my desk.

Interesting topic .....

If you were diagnosed with celiac how do you know it's "classic celiac" or "gluten intolerance?"

I am now confused and thinking these are 2 separate issues.

My husband's "celiac" symptoms did not emerge until he had to do a couple of courses

of antibiotic (he had a blood infection). During the final week of antibiotic his non-stop

diarrhea started and here we are to today........ could this resultant "candida" do this

to him? that's what I am picking up in this topic. By the way, prior to this episode and since

then he has never needed antibiotic (only once in 1992) - I on the other hand am on

antibiotic about every year to year and a half for strep throat.

I'd love to "turn back the hands of time" on this disease and find a resolution for

all those who have celiac and gluten intolerance.

There is always occams razor.

It could be that antibiotics allowed a yeast infection that ....

.... or it could be that he had a blood infection that proved very tough (your wording is final week of antibiotics indicating a long course) and that the blood infection was what tipped the balance.

I highly doubt that all four of my boys - who have a positive reaction off of gluten - including my 2 year old contracted a bacteria already!

I'm not quite sure what you are saying here? Are you in some way saying your children were born without bacteria? If this was the case they would be dead.

The average human has 10x the number of bacterial cells in their body than human cells, it beggars belief you think your children were born with none?

I had them tested for bacteria including H Pylori because we had this in the family before and none were positive at all.

Again, I'm not certain what your implying... are you trying to say you had your children tested for every one of the billions of species? you obviously realise that each test is specific or you would not have written "including h. pylori" but your claim again beggars belief and is an impossibility.

Even supposing you found a MD willing to do hard jail time to subject your children to a barrage of countless tests there simply isn't time in an average human life to test for every known species of bactria, let alone the billions of unknown ones.

Research has proven that people with DQ2.2 have a response to gluten, but that it does not usually pass the threshold to cause celiac.

Going back to what I posted earlier, this depends on how we define celiac.

The person eventually gets the villi damage after say 20 years. This is celiac too.

Or it was celiac all along and just one symptom did not manifest itself strongly enough.

I can't accept that one person is celiac and another not based on where a sample is taken or when or who examines it?

Imagine you get a biopsy and its marginal and your classed non celiac, who is to say a month later it would not be positive or a different sample point would have been positive or a different person looking at the slide?

To take it the other way, what if the person then goes gluten-free and gets a biopsy after a year that is negative? Are they no longer celiac?

To my mind the person that eventually gets villi damage has probably been suffering countless other symptoms for most of those 20 years... regardless of if they hold a positive biopsy or not if they are suffering an auto immune reaction then calling it a different disease based on the villi are not quite being destroyed faster than they repair seems completely wrong.

Surely one is a progression, a more advanced or critical state than the former but still the same disease?

To put it another way, if you get bubonic plague you don't get the postules until late in the disease.. but when they come this doesn't suddenly mean that is when you got the disease, just the last stages of the disease? You had the disease all along, you were just waiting for one symptom that indicates a certain stage of that disease.

Well, I don't want to be "that guy" on these boards, but I do want to say that there is a line that I am willing to cross when it comes to eating. Yes, I am sure it is better to eat from the farm directly and never have chemicals and yada yado. However, I do realize that I do not live on a farm, nor do I have the time or money to pretend like I do. I eat as much as I can in its basic form (carrots as carrots, not canned or mixed and so on), but I cannot live my life without the "bad stuff (processed)" coming into play here and there. One of my pet peeves with this disease is that I am lumped into this "hippie" catagory because I need to modify my diet. It doesn't help it any when I constantly have to have huge labels on my food that say "made in Blueberry Farms by the indigenous Awapoo tribe with only soy ingredients powered by cow poo furnaces". I just want a damn box of mac and cheese that won't give me chronic stomach pains. Do I believe we should eat better foods - yes. Is there a guy running around at 95 years old that has eaten nothing but Big Macs for 30 years - yes (I actually just read about him). The conflicting advice comes from those who believe they know better and those who do know better. Sometimes the truth that "it really doesn't matter" doesn't match up with the "perfect world" lifestyle.

Sorry, that was my rant for the day. Little edgy I guess.

Hey rant away and i don't think your "That Guy" (and you made me laugh)

However you might feel better about it if you realise that you don't choose Mac n Cheese but are given it.

Much as you i do feel a bit of resentment that I have to buy "hippy food" grown by people who eschew all artificial fertilisers except when growing cannabis?

Spot the irony? Super transmutated hydroponic sensemila grown in artificial light is ... well perfectly ok but a bit of pesticide on the veggies to stop them being full of grubs is not? There is no need for the gluten-free products to be

But, seriously stop for a minute and think...convenience food isn't new... if you were popping down to the forum 2000 years ago you could grab a whole load of easy snacks or grab some to take back after. Sure we had no fridges so we had to do it daily but then there were 1001 places you could go.

Now we have a predominance of supermarkets we must travel to with a necessity of long shelf lives so they give us the products they can stick in a box and leave on the shelves.

Or another way to look at it, so perhaps Subway isn't great for us (understatement time) but its convenient as easy and tasty?

I seriously do find it disturbing having to shop with people who think a little crystal is going to change their health, these people are obviously mentally ill and yet the same shop caters for freaks who think putting a metal pyramid on your head and holding a bit of quartz is going to have health benefits??

On the other hand I share the supermarkets and fast food places with people that think belief in some supernatural force is going to somehow help?

Just because one is more mainstream than the other doesn't make it any less disturbing for me.

On the other hand.... it totally pisses me that I can't get fresh gluten-free bread not some plastic sealed cardboard that tastes marginally unlike cardboard (I guess that's the taste of the plastic and additives?) Why ? Because Fresh bread tastes a damn site better than the sliced loaf crap... I can't eat either but if I could once again eat bread I'll say this... NO MORE SLICED LASTS 21 DAYS on the counter bread ever...

/rant mode off

With all due respect to people who are having sucess with food combining, I think it is a faulty concept. Early man didn't have the luxury of food combining. They had to eat what they had access to when they had access to it. Food combining is just another misguided attempt to find out what is making us ill. It's one thing if celiac is having success with food combining while his intestines are healing. But an undiagnosed celiac? Food combining isn't going to help them one darn bit.

I feel quite the opposite about this, Paleolithic man had little option but food combine (or more accurately de-combine).

Prior to the invention of wheat and portable starchy foods man had to follow the herds ... in the good times you kill a deer or large bovine and eat nothing else, in the lean times you grub about for roots and tubers ... the odd magot or ant.. without fire and the means to preserve it meat or fish would quickly spoil so it as eaten immediately, paleolithic man didn't go hunting down the tubers to make a 'fire free casserole'... without fire rice is or wheat ancestors were inedible and yet this is what man ate for hundreds of thousands of years.

We can see the same today in omnivores... bears (lets forget panda's for now since they are not even close to omniverous) will eat meat and fish when they can to the exclusion of everything else. They might eat tubers or almost anything they can get their paws on in desperate times (absense of meat) but give a grizzly the salmon migrating up the river and it will not be looking for some starchy tubers to go with it or look for a nice head of a brasica like brocolli or lettuce.

Popping back to Panda's, they are so far from omniverous they are at the brink of extinction.... sure man doesn't help but they deserve to be extinct (from natures POV) because they specialised to far. Practically all omnivores I can think of will eat meat as a first resort to the total exclusion of everything else until they are forced to forage for roots and tubers.

Practically every starchy counter-meal in the human diet over the last 12,000 years or so is due to fire and agriculture. Raw potatoes, raw rice and raw wheat are all indigestible by humans ...

Im with Mom23 now. I eat simply and after you get used to it, you actually hate the processed stuff. Your tastes change to eat more natural foods. They really taste good if you give them a chance. Once your brain detoxes from all of the artificial taste stimulants like MSG, Natural Flavor, Artificial Flavor, etc. you will find you enjoy whole simple foods.

......

It really is ALL about ATTITUDE. If you can find a way to be positive, the lights will come on and you will not only heal your body and feel better physically, but you will also feel awesome mentally!

Shay

This is really true.... we learn to like certain foods and dislike others. Some people will never like cilantro or quinoa sure, but everyone can teach their body not to react by cravings for junk food. Junk food is a drug.. no different to tobacco in many way's yet millions of people who thought they could NEVER EVER quit smoking do so every year! Like quiting smoking.. it starts off seemingly impossible, the hardest pat comes first and the body slowly detoxes ..

This process can take some time BUT each day you get further is one less day you have to repeat... slip and you almost start at the beginning...

After you have quit smoking and got rid of the toxins a cigarette tastes like .... well putting something distinctly disgusting in your mouth ... the same gos for the artificial flavor enhancers etc.

Gluten itself is an exorphin, that is it attaches to the bodies endorphin receptors like opiates. However unlike opiates it doesn't fit very well and damages them. This can lead to the body temporarily loosing its ability to self regulate mood. Morphine deriviatives cause withdrawal because the body has become accustomed to having the endorphin receptors filled artificially and hence withdraws its own production (OK this is vastly simplified) whereas gluten is different, it damages them but the body still produces it, it just binds less effectively.

Withdrawal from gluten can be unpleasant.. but not as unpleasant as opiate withdrawal. The trick though is to take every day at a time and count every day as one day closer.

Everyone is promising you it gets easier and it DOES..... but you need to take those steps yourself and achieve them yourself. This doesn't mean everyone here is not there for you but only you can make the first step and then the second...

I'm not really arguing with anything you said here, just adding really....

I agree that Celiac may have multiple triggers...whatever the trigger may be its more than likely something which places stress on the immune system.

There is definately a genetic component to Celiac....we know that for sure. Personally, I do not believe that a gluten intolerance in those who are not genetically susceptible can ever develop into full blown Celiac. It either is or it isnt...you either have a genetic predisposition or you dont.

Again this ALL hinges on the definition of celiac. We have a sort of catch-22 diagnostically because no clear definition exists that is accepted by all 'experts'. (and I put experts in quotes deliberatly)

As I said earlier, the GI has one definition and the neurologist another and the geneticist another....

I think we agree that there are multiple ways to get total villous atrophy WHILST reacting to gluten... BUT that the reaction may be a different reaction.

To take your statement ....

I'm sure it would be a different story if I were carrying a DQ2 or a DQ8.

The percentage of people who have non-celiac gluten intolerance is far greater than those who have Celiac. There are also MANY conditions which can lead to a gluten intolerance. In those people who are not genetically susceptible gluten can cause symptoms but without the genetic predisposition they will not develop Celiac Disease.

I agree with you but ... many GI's do not... hence the problem of definition and without a definition the research just doesn't get done.

quoting you out of order ....

I may get an immune response now....but its not an autoimmune response...and there is no damage to my villi. There is no gene which needs to be "switched off"....because no gene was ever "switched on".

That is really the point I'm trying to make... the definition of it being an autoimmune disease is to me the over riding factor. Lots of things can damage villi and lots can cause an allergic or other reaction to gluten. Just having the two together does not make it celiac disease UNLESS there is an auto immune response.

Going back to your order ...

In most cases of non-celiac gluten sensitivity there are underlying issues that are contributing to the onset of food intolerances. When those underlying issues are diagnosed and treated the gluten sensitivity can (and often does) resolve.

To me it is absolutely fundamental that the biopsy is NOT used as a diagnostic golden test. It is almost immaterial IMHO, if someone is producing antibodies then they are causing damage regardless of it it can be seen on their biopsy or not...

I'm hoping for your sake that your intolerance did not cause the associated neuropathy ... or adrenal/thyriod related problems but obviously those who are producing antibodies are at risk, even if the villi APPEAR normal.

Further, others are diagnosed as having celiac disease when they don't have the genes ... or even anti-bodies... thus making the whole research a mess.

Others with antibodies receive negative biopsies and are classed as non-celiac.. thus making an even bigger mess of the statistics!

So back to the bacteria ...

Many have the genes but never trigger celiac disease ??? Its hard to tell because of the mess I just described.... Just because someone has no villi and show improvement on a gluten-free diet doesn't make it the same illness ... so perhaps those who are diagnosed and don't have the genes are the ones who get negative blood tests??

Its also somewhat likely there are other possible genes but again the research is clouded ...

So on the other end I am not entirely convinced that even if you have the genetics eliminating the trigger AND time cannot at least reverse the immediate auto immune response to a crumb... I'm not even saying we can chug down a beer and pizza... but perhaps the immune system can be de-sensitised enough not to react.

The basis of the auto immune response is learned and mis identification of a 'harmless protein fragment' as a malign invader. Yet our response to REAL malign invaders does actually diminish over time... (If not we wouldn't need boosters for Tetanus) ...

The bodies immune system is not an on or off but a series of escalations. Its like a war where our bodies learn an attack and then pre-emptively wait and prepare for that attack: except we misinterpreted a harmless action as an attack. Immune response goes through numerous stages... initially just fever to try and "sweat out" a bactria or virus whilst the immune system does the manufacturing of the "big guns" and "precision strike weapons" ...

Often that's all that was needed (although humans having such a low temp it rarely does much except make us feel ill) or the bacteria is killed on its own.by the bodies natural processes or the body adds to natural processes (stomach acid is nasty ...) ... all the time the big guns and precision strike weapons are being manufactured based on intelligence. The "Final Stage" are the precision smart bombs.. the ones which are designed to seek and destroy a certain target autonomously.... and in the nornal course of things these are usually unneeded .. (We pick up millions of mildly harmful bacteria all the time and the other defense mechanisms cope) ...

However for the celiac these targetted missles are always being produced, the factories never quite shut down and the blue prints are kept in high alert.

These are the ones latch onto our villi... target the gluten and keep coming..

Hence reducing the alert state could give some relief... with time the readyness steps down....

There is however one huge catch!

I doubt anyone on this board is 100% gluten free..... Its not possible because of our environment .. try as we might we must pickup bits when we use a door handle someone has just used eating a sandwich or breath in airborne flour etc. etc. so our body keeps getting reminders and the high alert never quite steps down.

A little more time now...

What I tried to express in the earlier post is that the whole immune system is a mixture of genetic and learned response.

It is in many ways a parallel to the nature vs nurture debate for psychology.

There are undoubtedly elements of both but no clear distinction of which is dominant.

Additionally, we have a vague definition of celiac disease. It can be stated as "only biopsy proven" at one end and "response to diet" at the other. A GI specialist might define it in terms of villi destruction whereas a neurologist may use completely different criteria as far as what they are treating.

How do you know that you don't have celiac disease?

In other words some people do not have the recognised genes YET still have celiac disease by biopsy criteria... others have the genes and do not develop celiac disease... etc. from my perspective it would appear a simpler definition is the production of gluten specific antibodies... yet this doubtless would not be agreed with by some GI's...

This debate in many ways reminds me of the h. pylori debate... Over 90% of Dr's were absolutely certain that bacteria were not the cause of ulcers... indeed those that did believe this were ridiculed... yet today it is common knowledge even to non trained people and yet this was only 15 years ago! (or less)...

Ulcers affected far more people than celiac disease, even of 100% of celiac disease was diagnosed yet the sum knowledge up to 15 or less years ago was they were stress related and nothing could be done except limiting acid production.

I find it extremely plausible that celiac disease is an interaction of several factors, some chance and some genetic and some dietary. It may even have multiple independent causes (not a single bacteria) which affect different people differently as one small part of the whole.

But the autoimmune disease is caused by a triggered gene. From the studies I've read, it's the celiac genes which produce the immune molecules that recognize gluten as a foreign substance. They would have to no longer be produced (the gene turned off) to turn off the autoimmune condition.

This assumes its a two player game ... i.e. gene and gluten. This may be the case but perhaps its not.

Instead .. what if its a complex series of circumstances ...Medicine really doesn't seem to understand celiac disease.

So many people may be genetically pre-disposed to a heart attack.. but the same person (or identical twins) living different lives one may have one the other not.

Who knows why, perhaps one did a lot of sport in their youth or doesn't like red meat ?? or ... but its not just one thing its the sum of everything.

The twins meet up on a public bus and one gets off and has caught the flu the other didn't ?

Genetics doubtless plays a role but how pre-determined is that role?

Immune systems are complex, they are partly genetic but also partly learned.

Perhaps bacteria infection is a part of this trigger but several other conditions need to be met. Some/Most/Many ?? people can meet all the conditions but their genetics say no... others say yes ?? but reversing some of the conditions may stop the trigger again.

IF someone has a nonceliac gluten intolerance that is caused by a bacteria then sure antibiotics would be a 'cure'. But true celiac is a genetic differnence that causes an autoimmune reaction in the body. It is not caused by bacteria but by eating a diet that we are not genetically adapted to. Our immune system recognizes gluten as a poison and in it's attempt to rid our bodies of the substance is what causes the reaction. I personally don't think that long term antibiotic use is going to be found to be a 'cure'.

I'm kinda with CarlaB on this....

What causes celiac disease? We know there are genetic pre-dispositions but there must be more...

The thing is it might not be a single thing .... it could be a variety of bacteria that do some damage and causes a trigger... and that in the genetically pre-disposed people this reaction is worse.

So gluten might never be very good for us... or indeed very good for anyone but perhaps if these bacteria are removed we might have a fighting chance of not being half killed by the odd stray breadcrumb....???

You have gotten some great advice already but I am going to give you a bit of a different take on this event. You have been VERY ill. It does not sound like they have kicked you out permanently, you stated that it is for 2 semesters. This tells me you are welcome back after that point. Could you perhaps use that 2 semester break to get your health back? That way you can return fresh, healthy and able to give the course work your full attention? This may not be a bad thing and may allow you to learn and achieve higher grades and knowledge when you return. Perhaps you could get things set up so that your return will be firmly in place when your health is a bit better.

This went through my head too. Perhaps the hard work will be better directed in this direction ??

Did you do that on purpose???

hehe .... nope but thanks ...

I agree!! McDonalds is not gluten-free friendly.

That is really the reality....

I would rather stop at a gas station and get some Doritos, and a Hershy bar, than go to McHeartattack and ask for the Big Breakfast, minus the egg, hashbrowns and biscuit.

The bummer is (pun slightly intended) ... whenever I'm pushed to convenience food is absolutely the wrong time to get hit by a bout of 'D' ...

Its never pleasant but stuck on a plane, train or in the car brings a whole new meaning to 'roadside stops'.

Well I'm not sure where you are so its hard to be more specific...

In general I see you are going to have to do some work to get this across to the father ... and I guess you are understandably worried about time she spends with her biological father ...

There seem to be two avenues..

1/ Get a MD to make sure that the father doesn't get to see the kid alone until he can demonstrate he understands and is able to feed her safely.

2/ A bit of gentle persuasion ...

I honestly think the latter is best in almost every way...

Forcing someone on stuff like this is likely a lost cause... her father is being misadvised .. what's to stop him saying everything is cool then ignoring it on the basis of his friend?

Its almost like forcing a drink driver to seek help or an addict to go to rehab ... this might sometimes work but in 90% of cases its atted, say the right things and leave and life goes on as it was. People rarely react well to being forced into things so this leaves the second option....

As an idea off the top of my head ... and you will need to be the one doing the work here (unfair as that may be) ... you need to find out.. and if your dd is going to memphis get a meeting arranged... I'm sure if you make a post on here "Looking for celiac disease aware MD in Memphis" you'll get some good responses.

I hope this helps, you really are between a rock and hard place and its not fair you need to do all the work but obviously your a caring mom and that's how the cards land sometimes.

Well this is perfectly normal.

First off I am the first to admit what I miss is the convenience!

However given time you will really stop missing specific foods so much.

In the same way you find you just miss out aisles at the supermarket ... but the mixed in situation is a pain!

Imagine you don't like seafood.... you just miss that section without thinking... often its convenient they are grouped together, it gives a whole section you can miss...

The gluten thing is like this... sometimes you have time and look for new things but often you just have a mental or even physical list of what you can have...

with some time and practice it really becomes less arduous and just normal.

I often compare it to the first time I had a driving lesson in a stick shift car.

After 5 mins your thinking WTF... how can I balance this clutch with the gas and look in the mirror and do the signals all at the same time....

After you have driven a stick shift for some time you don't even think about these things its automatic.

Being gluten free is pretty like this... it seems overwhelming... it seems next to impossible and not worth it but it just gets easier and easier until its second nature.

You can take an east route and say hey I'll learn to drive in a auto... but frankly... after a couple of lessons the difference is neither here nor there except if you learn in a stick shift you can always hire/buy either...

Getting to know the products takes a bit of time and seems overwhelming at first but stick at it and you soon start to feel like its easy. The same for learning to cook your own gluten-free stuff... I find it easier to cook my own than find something safe...

please keep this thread going, and any one else with thoughts please chime in.

i cant swap my dd over to the diet until after her colonoscopy and biopsy, scheduled for june 14.

we live a very busy life right now, so eating out is sadly a regular for us.

all the tips/links/ideas you can share are most appreciated.

All eating out is a risk.... fast food is always the biggest because of the way its prepared.

McDo vs burger king vs .... I just don't think holds any weight.

All of these companies at corporate level don't give two hoots about you or dd. McDo gets a lot of stick .. well because its McDo's... but it doesn't mean the others are not as bad...

McDo's (et al) do not sell a dining experience, they sell a 'product'. That product is just a product... and "guns don't kill people"...

In other words Winchester sell guns and bullets... its what they make. From their perspective what people do with hose products is down to the people that buy them but thier livelyhood depends on the maxim, guns don't kill people.

This doesn't make them evil... just human and self interested. The same director working for Ford or GM might be saying car's don't kill people drunk drivers do and its the breweries, pubs etc, to blame whilst saying but guns are a different matter and you can't compare a vehical with a product designed to kill someone.

McDo have a lot of money... and they seek to mislead but they are only effective because they are so big and people don't want to believe.

Your individual McDo or Wendy's is however managed by real people.... they can and often do care... but they still have deliberatly misleading corporate information.

These corporate companies are just doing what corporate companies do, protecting their market and creating shareholder value. They are not 'bad' or 'good', simply what they are...

So they change the salad, some people get sick? That's it... when people work for a corporation (and I have) you are two different people.. the one at work, doing a job and the one outside work. If you allow them to overlap you will mess up your career.... and hence ability to feed your family. (bottom line)

So what Im saying is having written scientific and analytical reports for corporations my JOB was to write those to give the impression something is safe (when perhaps it is not). The bottom line is the whole fast food environment is unsafe... but corporations can publish reports saying item X is safe ... and this simply detracts attention from the overall picture... FAST FOOD KITCHENS are not SAFE.

These companies have HUGE PR dept and budgets. What is presented is what we are meant to see. If corporation X feel it is to their advantage to be seen to be 'green' or helping kids in Africa they will make all effort to appear to be green or helping kids in Africa but they don't CARE... they only CARE what we think...

At one point in my life I was writing reports to give the impression climate change is nothing to do with man. I didn't believe this the evidence to the contrary is overwhelming but my JOB was to write those reports so it appeared this way. (While at home and outside work I would do my part). In the same way my boss also had the same opinion...

We like to think of corporations as 'people', hence the face of Ronald of the personalisation of Wendy's but corporations are simply financial assets, they have no feelingnor responsibility outside of making money for their shareholders.

I reread my own post and it sounds more irritated than I meant for it to. I've actually been feeling great, so I have little to complain about. Sorry, all.

Hey .. it sounded spot on to me!

Let me rant my own ....

1/ If it doesn't look like food don't eat it...

(Tins, packets don't look like food... A carrot, chicken looks like food to me)

2/ Too much of anything is bad for you

Almonds a great/Almonds are bad... ?? Some almonds are part of a diet are probably good

Water/wine/coconut oil ...and dare I say soya?

I have come to the conclusion that any 'miracle food' is probably just as bad for you as good, especially eaten in excess.... all the advice, eat lots of "XXXX" is rubbish because by virtue of <insert miracle food> having such a strong positive effect n one thing it probably has a strong negative effect on another.

Gorillas are largely vegetarian .. but they are not adverse to a protein boost (ants). They certainly eat more than just bananas!

I would like to read that article as well. However, I would never want to start eating glutenous foods again and try to stay away from all grains as in unsprouted form they are not healthy for any of us. I don't think I would wreck my general health and gut flora by taking antibiotics long term so that I could go eat at Mc Donalds with my friends. Also, you have to think of the implications of taking the antibiotics at all--that would seriously impair your immune system.

Without antibiotics you would pretty likely not be here.

Are antibiotics overused? Yes but they are not some evil entity (as others have suggested on this forum).

Antibiotics along with vaccinations are what allows our average life expectancy to be something over our 30's.

Much as they are overused they are critical for many life saving reasons from post operative recovery to killer diseases.

I try and avoid antibiotics but not pathologically. I recently had to have a very strong and long course to the point it made me ill for 2 weeks and needed complimentary anti-fungals. This however was in no small part to me refusing the last 3 far more gentle courses my GP had tried to get me to take.

Its not easy and its a balance but I made the wrong choice in that instance perhaps, or perhaps the milder dose would have been ineffective?

Yeah I'll have to go back to Regina and get that proof..not even sure WHERE I have that information.

I plan to keep raising this issue with the government.

The lady who TOLD ME to reduce my course load is the one who sent this letter!

I was on probation, but since I didn't take 5 classes she said didn't have to increase it in just one semester, and would have 2.

If anybody wants a copy of my appeal letter let me know!

~ Lisa ~

Lisa, as Fiddle-Faddle pointed out be meticulous with spelling and grammar. You need to get at least one other person, preferably several to read it before you send it.

I agree also that you must not sound "whiny", this is not about feelings it is about fact as YOU present it.

However: You are fighting a bureaucratic system, they do not CARE they are simply following a set of rules/procedures in a manner that creates the least amount of work for them. You on the other hand have everything to win/lose. This is overwhelmingly to your advantage if you keep to facts.

Unless you offend this bureaucrat they have nothing to gain or lose from you continuing, receiving your grants and getting on with life except the extra work it might entail. The more you create extra paperwork for them in denying you this the more likely they will decide its easier to just give you a pass or find another way through that doesn't increase their workload.

If you offend this person or write something that will implicate they did not do their job correctly then they will fight and they will start to care about the outcome. Unless you offend them then they have no reason to care other than the amount of work it entails.

Be careful about going public because this will automatically put them on the defensive. Also even though they may be wrong this will then escalate and their superior may decide its easier to defend them that say they were wrong...

Keep in mind, this person has no malice against YOU. They are not involved other than you are one of thousands of people in a system. Make it as simple as possible for them to help and require (in a nice work) a lot of paperwork for them to not help. Wear them down with paperwork and at some point the chance is they will just see its less work to actually help you!

Best of luck

Yeah I'll have to go back to Regina and get that proof..not even sure WHERE I have that information.

Ask for it. Make it clear you have it but its in Regina. Keep asking for paperwork in an official way... it creates work for them.

It is their job to keep the paperwork .. not yours (though strongly in your interest).

"Thank you for your letter, I am currently not in Regina but XXXXX and do not have access to my paperwork relating to this. Please could you forward me the letter you sent in XXXX in order I can include this in the appeal I have been advised to submit."

This is non-personal, you are not blaming the administrator, you are not saying you lost the paperwork, but you are not currently with it.. and the appeal implies this will create more and more work for them ???

Hi,

I was told last time I'm not supposed to post things like that or my own web site but they did say it was ok to refer you to my profile which lists the website. On the site you can scroll down to the rant section and find the produce mixing letter, or just send me email from the message section with your email. My real name is Ken Love.

take care

ken is correct, its board rules... but nothing stops me posting it ... (since I'm nothing to do with it)

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So true. And if I didn't have to change my whole life around because of a dire health issue, I would still be eating out most of the time or eating prepared food (albeit from the food co-op). I certainly wouldn't be reading every label or walking around with my own condiments or paying more for food.

Maybe you can help me understand the REVERSE ??? (In all seriousness)

I really have a problem believing someone doesn't know how pasta is made .... don't get me wrong I know lots of people don't, I just don't understand how they can have got to a certain age and not asked?

I know I am a foody... but I have always wanted to know what is in food from a very early age... I cannot undertstand how anyone can put something in their mouth without asking? (Yet I know most/many) people do?

I sometimes wonder if as a kid I had 'suspicions' certain foods made me ill? I realise its me that is 'not normal' but I can't quite rationalise the normal...???

That is a tough one!

your DD's father's friend is obviously in denial.... of course he/she should know better and perhaps at the back of his/her mind they do but I don't see any easy way's around this.

My sig is a very old quote from Julius Cesar... It says "Man(kind) will willingly beleive what they want to beleive"

You are not fighting against a logical arguament here.

Apologies in advance folks .... (please lets not turn this into a religious debate just because this is the easiest way for me to explain it)

The way I see this (as an atheist) is like religion... Chistianity, Jiudaism and Islam can't all be right.... nor can each sect of each religion YET each one does beleive it is correct regardless of evidence to the contrary. The point is that one person can try and confront another wih 'evidence' but the other person will dismiss that evidence as heresay, false or irrelevant or a wrong interpretation.

Scholars have spent 1000 years debating just there 'big three' .. no conclusive answers have ever been found yet millions are totally committed and even willing to die for their belief

This MD is in this class. As a MD WITH celiac disease they should be finding out everything... lets face it we do everything we can and we are not MD's...

This doctor friend must be actively trying not to find out.. they are perhaps scared?

Nothing you can say or do will prove otherwise....

(Now the reason I used the analogy above)

You are in the eyes of the MD just a stupid mother. (sorry I am not implying you are but from the POV of the MD) ...

In order for the MD to agree with you they must confront their denial... and they are what they consider to be "the expert" ...

This is like a everyday Christian trying to explain to a Rabbi why they are wrong or a everyday Muslim trying to explain to a Bishop or Cardinal ...

You can't get around the fact they beleive they are trained and have studied and there is nothing an everyday person can do or say that will prove anything to them.

Honestly, this is going nowhere.... forget this friend of the father.... you will not change their mind. (Even if you do the effort will be so out of proportion and your goal is a healthy daughter)

You must bypass this persons influence...

This means finding another MD possibly to confront the father... as you have anuphill battle to be taken as seriously as a MD friend you need some big guns ...

Find a support group etc. that has a MD.. get the father along and get the MD to explain...

This might sound hard work and a lot... but I honstly think it will be FAR FAR EASIER than trying to change the mind of an MD with celiac who is in denial.

This MD has turned celiac disease into a belief system... logical arguaments will not work, endless pages of medical journals will not help.

Your DD's father has 'appointed' this friend as THE EXPERT. Whatever you personally say he will ask the opinion of THE EXPERT and this expert is in denial.

THE EXPERT will reinterpret the medical papers and pull out the parts they WANT. Remember they are not doing this against your daughter or even to support her father .... they are doing this because they REFUSE TO CONFRONT thier own reality.

OK, I just had an idea whilst answering another post.

We can do something huge to help outselves and it can be done for almost nothing if we club together.

For my photography I get postcards printed. For bulk its remarkably cheap....

These are basic size postcard size prices....

100 $24.99

250 $49.99

500 $79.99

1000 $99.99

1500 $129.99

2000 $159.99

2500 $179.99

10000 $499.99

20000 $799.00

If a country could reach 10,000 total this is 0.5c per postcard!

I'm sure its possible to get them printed even cheaper elsewhere, these are prices from Vistaprint.com. There is a vistaprint for most countries... (I use the UK and France ones)

With a bit of thought and planning these could easily be made multi purpose.

They could be used as straight dining cards .... give to the serving staff.

They can be used as send ahead cards .... send them to the resto/hotel before you arrive addressed to the manager/chef...

They can be given to friends to give to resto's or hotels they go to...

The beauty of the last two is that sending one is probably ineffective long term.... if its adressed to say a chef and you say you will be eating on a certain date they will probably bin it afterwards ... BUT ... after they have received more than one it will really start to stick... and at some point a smart chef will stick one up in the kitchen for reference!

A smart hotel or resto manager will also realise that we represent a LOT of custom....

10,000 isn't that much... its 100 people getting 100 cards each... for $5 (plus repostage by whomever receives them so lets estimate about $10 each for 100 postcards)

At 10c a piece we can leave them about, give 5 to a friend who eats out a lot and send them ahead to a resto... then turn up and give them another if they lost it!

OK so this shouldn't be hard for the US to get 100 of you but even UK we should be able to get 10-20 and 10-20 in Austraila etc.??

What do you guys think?