gfp

Philip Morris as in the cigarette company?? I never knew that, interesting. Disturbing...but interesting.

That part I find less disturbing..

The part to worry about is when gaint corps are just making a brandname that caters for a "health segment" of the market.

In-most cases this is simply a marketing ploy, a while back I posted the published minutes from a food industry meeting where several multinationals identified a need for food that is perceived as healthy.. and I highlight that word specifically.

In no case I can think of does a multinational actually care about your health so long as you are well enough to get out of the house and buy thier products off the shelf. They only case about your custom...

The real worry is that these companies are only interested in what is perceived as healthy and catering to fads.

If gluten-free is trendy they will market to it but if that means filling out their product with other alergens then I doubt they think that will influence sales overtly.

In many cases the mutlinationals have lots of spare byproducts to use... often byproducts which are taken out of heaviliy processed foods (or in this case cigarettes).... and whenever they can they will use these byproducts as a product line.

Thus if you produce lots of white bread, process lots of rice to white rice then you have lots of fibre left over to use. A healthfood subsidiary is ideal to get rid of these waste products.... (in the case of Philip Morris this is nicotine gum and similar which in some studies (not the ones paid for by Phillip Morris) is proven to have a higher failure rate than cold turkey)

The same goes equally for food if less transparently...

Soy is in public opinion associated with healthy eating... along with whole grain breads etc. anything based on seaweed or other nice buizzwords....

In general when you read the labels on some so called "health products" it sounds like a list of byproducts... chosen because they sound healthy or even just renaming neutral products like "aqua" instead of just saying water...

One thing disturbs me is that although I'm not anti-soy in general I don't want it making up a significant part of my diet, it seems OK for me but many celiacs including my mother do react badly to it and IMHO eating significant amounts of it is the best way to develop a future intolerence.

But there is no need for everyone to wear tin hats... I think its pretty easy to read the labels and decide... if it contains things you don't know what they are or shouldn't be in the product to start with the chance is they are not going to be good, regardless of the big label saying "Healthy options/alternatives/etc.)

A good example is gluten-free pasta... my usualyl fav is "corn, water" .or vermicelli type "Rice, water" .. if the list gets any longer chance is whatever is added isn't good!

I hope everyone is well and not too hot in this toasty summer! .....Sorry about the giant post!

Nothing about the length of the post its full of useful stuff but don't you think it would be better shared with everyone? Not just antipodeans?

Just my 2c but when I posted about Australia I made the posts here ... but its more useful to everyone if UK posts were made in the UK area etc. ???

gfp, you are so wrong. It is never ok to gluten yourself on purpose. Each time you are glutened causes damage and a setback. When you are accidentally glutened, that is one thing, but doing it to yourself is wrong. You are kidding yourself if you think it doesn't matter, because it does and I truly do not think you should be telling others it is ok. Gluten is poison to us. When you feel the urge to eat gluten, then you need to talk yourself out of it. I have had gluten free pizza that is every bit as good as a pizza full of gluten. You need to realize you CAN'T CHEAT!!!! For your health, you need to change this way of thinking. Please.

perhaps I should have bolded "I'm not recommending this "

Each time you are glutened causes damage and a setback.

Considerable medical opinion (which I disagree with) recommends gluten challenges of months... I don't see how this is justified... but its still the majority of medical opinion... just because you are eating gluten for a biopsy doesn't change any of this...

The bottom line comes down to what damage is being done and how... and I don't see any medical evidence that 1 slice of bread is doing less damage than 1 loaf... it may or it may not but noone seems to be able to answer this question. What I know for myself is I don't feel any worse for eating a whole loaf than I do from eating a single breadcrumb. That doesn't mean the damage is not worse but neither does it disprove it.

What I see plenty of evidence for is that peripheral diseases are not the product of a single dose but of extended periods of stressing the body. Adrenal impairment is not triggered by eating a single slice of bread but by years of stressing the gland. Cancer is not from a single crumb but the repeated and prolonged enforced cell regeneration of the villi. Yes a single cigarette can give you cancer but the chances against it are billions to one. If you don't somke it can still make you ill but the chance of it doiung any long term damage is almost zero.

From all the evidence I can see the biggest dangers of gluten are prolonged exposure. I have to accept I live in a world where being 100% gluten-free is not possible. From time to time I will be accidentally glutened.

I don't go out EVER and think "oh I'll see what happens" if I don't feel safe I will not eat but even so accidents will happen. I love eating out but I minimise this because of the risks, I don't include anything in my everyday diet that introduces a risk but it is simply not possible to spend 3 weeks on vacation eating out without taking risks.

I do not go out and think "ooh if I get glutened I can have pizza tomorrow" I make very effort in every case not to get glutened. I could elect not to go on vacation but then I'm no longer living... I'm existing.

What I see NO EVIDENCE for whatsoever is that 2-3 days of glutening does ANYMORE damage than being accidentally glutened by a single breadcrumb, some CC or accidentally sipping someones beer on a regular basis.

If I get glutened form a breadcrumb I will be ill for 5-6 weeks with the severity and frequency gradually subsiding over this period.

If I get glutened by a whole loaf I will be ill for the same period with the same pattern of diminishing frequency and severity indeed its an alomost exponential pattern... most toxins follow the same pattern whereby they follow a half-life of expulsion each 50% of what remaining taking the same time to be expelled.

In my opinion I am less likely to suffer long term complications from a heavy glutening for 2-3 days once or twice a year than people who take chances on a regualr basis such as eating McDonalds fries...

All the available evidence points towards the long term damage being cumulative over time and being constantly or near constantly glutened so taking a risk every week eating out is likely to mean I'm rarely ever 100% gluten-free... if I get caught out by CC or some contamination only once every 6 weeks my body is ALWAYS fighting and stressing organs and glands.. If I get caught out 1-2 a year my body has a whole load of rest time to recover, my immune system and organs can settle into doing their normal job without being constantly stressed etc.

Of course I could try and only get CC's the same amount, probably it would be BETTER but by how much...????

My opinion having looked at the evidence is that 1-2 episodes a year or 2-3 days presents a much much lower risk than 9-10 episodes a year by taking risks like eating out or sharing a kitchen ....

Plenty people here share kitchens and get ill... plenty eat fast food on a regular basis where contamination is always a risk. Some people even use the same utensils, drink whisky, use shampoo's or take other risks on a regular basis...

It is my considered opinion that these people are risking their long term health far more than someone who eats gluten for 2-3 days only per year.

I truly do not think you should be telling others it is ok.

There are plenty of threads here about McDo's fries, grain alcohol and spirits in general, low gluten wafers which will lead people to believe a little on a regular basis is OK. There are several posts where are simply outright lies such as all distilled alcohol is OK... (which considering some companies actualy say its not because they use wheat derived coloring doesn't even make this a debateable subject... yet they repeat time after time the same old lies and noone ever tells them I truly do not think you should be telling others it is ok. indeed it seems general practice here that they can answer a question with a factually incorrect statement and those whom disagree (by stateing facts and posting links to them) are told not to disagree.... and indeed these people then play a game of replying to every question on alchohol with "All distilled alcohol is safe", refuse to acknoweldge the links safe in the knowledge oif anyone posts contradictory factual information they will be told off. Hence my long absence from this board and its looking like another one now thank-you. (Would you like me to list names?)

The degree of withdsrawal probably varies greatly from individual to individual....

I think the most important part is to regognize it for what it is and realise it goes away.

I actually think that many of the side effects of glutening are actually as much to do with withdrawal as they are poisioning.

My opinion is you can divide the symptoms into direct and indirect .... although in reality when you get down tot he nitty gritty they are almost all indirect since its not the gluten making you ill but your bodies reaction to it.

Much as this doesn't matter 1c when your ILL .. its worth looking into IMHO....

What I have found when accidentally glutened is if I keep it "topped up" I don't actually crash... immediately.

I'm not recommending this but on a few occaisions Ive decided to be hung for the sheep, not the lamb... especially when I've for instance been on vacation in Italy and managed not to get glutened for 2 1/2 weeks and thought screw it, Ive only 3 days left and I can eat real pizza, pasta and drink real beer..... my justificaqtion is I'm goiung to be ill for 2-6 weeks (depending on severity) so x weeks or x weeks+3 days ???

Anyway the thing I found is if I eat a little I can keep goiung (being suitably blocked up with immodium) but that after a maximum of a week I basically crash.... this crash takes perhaps an hour tops to onset... people have literally watched me turn grey-green and wanted to send me to hospital in an ambulance I look that ill.

After this I'm screwed for 2-3 days... and I mean screwed... like not leave the house and for the fiorst day not leave the bed except for my other bedroom (by which I mean the one with the toilet) ... I used to wrap myself in towels to keep warm, now I gave up and Ive a fleece blancket in there for the winter and extended stay parking.

Anyway... prior to the crash as I call it although Im not 100% I'm not so bad as if I just stop...

This is my interpretation anyway....

Firstly mood swings, brain fog etc. is all due to gluten interfering with the bodies own mood regualtors.

Gluten acts on the endorphion receptors which usually accept endorphins which lift your mood.

These are the same receptors that opiates bind to...

However gluten doesn't fit properly, it can damage the receptors thus once it dissapears your body is still unable to effectively regulate your mood because the endorphins don't bind...

What I call direct symptioms are D, fever and flu-like and the like which are the bodies own defenses.. when we get flu our body reacts by raising the temperature and creating antibodies and the creation of antibodies is both draining in itself on the bodies resources and replaces red blood cells which equally fatigues.

Indirect is the killer though.... for me its like being ill with one thing then WHAM ... not only do you have one tiring/fatiguing thing but you are practically stripped of your will to "live" ... I don't mean die... I mean live as in live life actively....

I go from enjoying life to it being something I just want to bypass me until I'm better...no reason to get out of bed, I just want the time to pass....

To give a sporting analogy.... getting glutened is like tripping on the final run to home base on a home run, it really sucks but you can brush yourself off. The after effects or withdrawal are like somebody hitting me with a baseball bat in the head everytime I try and pick myself up to brush myself off. Sometimes I just think screw this I'll just lie in the dust until they get bored and go home!

The gene test will be interesting.

Hope I don't show up as being missing a bunch of chromosome's, or worse

have the genetic makeup of a farm animal...

"We're sorry sir, but we're unable to complete the test as your DNA seems similar

to that of a bovine".

LOL, when I got a blood test on haemoglobin effiency I was told it was like a Llama....

A lot of the question depends on the rest of your diet.

If you drink unpasturised milk, eat unpasturised cheeses especially and raw meats then you are getting pro-biotics.

In most cases processing of food is what removes or kills the pro-biotics hence it depends on what you eat.

Humans developed eating raw eggs, milks and cheeses but the increasing processing of food removes them.

If you have lived without them then they will likely make a difference but whether this is good or bad in the short term isn't easy to determine.

In many cases because of our dependance on processed food our body cannot deal with the pro-biotics as they do their job... because we react more strongly to them than if we had consumed them naturally from birth....

One thing is for sure, infant mortality is lowerer and life expectancy higher in countries that eat raw meats, fish and unpasturised products.

I don't think this is necassarily a direct consequence of this but if it was so bad for you then you would hardly expect not to see higher life expectancy and lower infant mortality since it is usually the old or very young that are said to be at risk!

Thank you all for the helpful tips... I'll definitely try some of the things that have been suggested here.

I'm also starting to think that I'm becoming more sensitive to gluten now than I was in the past. I've read that this often happens, where you react to it more after you've been off it a while. Right? It's just that for a while (maybe a couple months ago) I could literally go weeks and weeks without ever getting a tummy ache, and now it seems to be happening more frequently. I guess I just need to start being EXTRA EXTRA careful with everything.

I think your probably correct and reacting to trace amounts in pans and utensils...

Thank you all for the helpful tips... I'll definitely try some of the things that have been suggested here.

I'm also starting to think that I'm becoming more sensitive to gluten now than I was in the past. I've read that this often happens, where you react to it more after you've been off it a while. Right? It's just that for a while (maybe a couple months ago) I could literally go weeks and weeks without ever getting a tummy ache, and now it seems to be happening more frequently. I guess I just need to start being EXTRA EXTRA careful with everything.

I think your probably correct and reacting to trace amounts in pans and utensils...

The reason for my statement is not to seperate the two issues. I clearly said that *anyone* who is reacting to gluten should remain on the diet. I do not see a difference as far as treatment goes....nor do I see a difference between a biopsy proven celiac vs. serology vs. dietary testing.

Afterall dietary testing would be the most definative test of all...in my opinion. However, when the dietary testing fails to improve symptoms.....one should certainly get a better understanding of how and why they were diagnosed....and determine that it was the correct diagnosis.

For those of us who do not recover or who are still symptomatic... it is best to get all of the details and not make an assumption. You would not make an assumption as to whether or not you have cancer w/out clearly understanding the results,...and equally...you should have a good interpretation of what your bloodtest results mean...with regards to any disease...including Celiac.

I do not have Celiac....but it doesnt mean I can eat gluten....I cant. The cause of my gluten intolerance was not Celiac Disease.....it was leaky gut. Leaky gut which was caused by *other* issues.

So...yes....it is very important when you are not getting better to have a full understanding about all testing (including dietary ones) so that you can move to the next step if need be.

It has nothing to do with seperating or dividing various methods of diagnosis...it has everything to do with having enough knowledge to get the correct diagnosis for yourself...whether it be Celiac (by dietary results, biopsy results or serology results) or something else.

The poster clearly said she had no understanding of her bloodtest results and was unsure of her diagnosis, as she is feeling worse.....I simply answered her questions with regards to that.

Please dont make the assumption that I am categorizing Celiacs into various groups based on diagnosis.....its simply not true. I am not a diagnosed Celiac....I dont even carry a gene but if I want to attend a Celiac support group I feel I have just as much right to do so as someone who is biopsy proven Celiac. In the end....I need to stay on the diet....and I take that very seriously.

Rachel, the whole point I'm making is the definition of Celaic disease is not constant. It changes according to where you are and when you were diagnosed.

Just to illustrate this as yopu said "but if I want to attend a Celiac support group I feel I have just as much right to do so as someone who is biopsy proven Celiac. " unfortunately this is not the case.

Coeliac UK will only admit biiopsy proven celiacs that means if you have no biopsy (or even one from outside the UK) and no support, you will be denied access to their resources etc. and this is a charity. Furthermore they go to lengths to distance themselves from non-diagnosed coeliacs or gluten intolerants, implying the latter are just fad dieters.

On top of this CUK "advise" on who can and cannot receive prescription items for gluten-free bread/flour etc. and also continue to propogate the biopsy as the only test for celiac disease.

If we go back 100 yrs only then by all medical diagnosis at the time you would have been classed a celiac, gene testing, biopsies and serology were not available and hence the disease has been classified according to diagnostics, not the symptoms, prognosis nor response to a gluten-free diet.. The problem with this is we don't really understand celiac disease or gluten intolerance fully... the most specific test based on our current understanding is serology because if you have antibodies then your body is reacting and genes certainly have a major part to play.

However when you say you don't have the gene its more accurate to say you don't have any of the current genes associated with celiac disease. Although the HGP identified some 25,000 genes we still don't know what much if it does.

We are 98.77% identical to a chimpanzee yet that 1.33% makes a huge difference... since we actually uinderstand less than 3% of the genomes functions even in a gross way.

The HGP also discovered that in humans the absolute genes are less important than the total variation induced by gene splicing giving the total proteome and additional modification of DNA by sugars.

Thus at some time in the future it is not impossible that another DNA sequence will be found which can trigger celiac disease and that you might have that sequence.

The value of being diagnosed is only as good as the understanding of the disease as pertains to understanding it.

However because of the way the medical community works pigeon holing a disease with many disparate symptoms based on a single symptom simply exagerates study in one area and not another which itself leads to increased specificity but only in one area.... and this itself leads to good research elsewhere being disguarded.

If we focus only on the biopsy part then this makes the disease the "property" of GI specialists but many of these same GI specialists refuse to accept scientific study from other areas, especially when the testing was not done to their standard. (biopsy).

Thus a lot of good research has been undertaken from everyone from phychiatrists to neurologists and the vast majority of GI specialists refuse to even consider the findings because they argue with the method of diagnosis.

This doesn't help our overall progression of the knowledge of both celiac disease and how it is tied to gluten intolerance nor other associated conditions.

For example there is a good understanding about the ties between glaucoma and diabetes. This would not have been possible if diabetes was not so easy and non invasive to screen for. Was a link was made glaucoma patients were screened for diabetes and it probably saved a lot of lives.

If you take white brain lesions on MRI this has been known about for some time yet the furthest the GI docs ever got to looking into this was to dismiss the testing procedures for screening celaics in the study.

Yes its very important to deterimine illnesses that are non celiac disease in someone who is having problems BUT we don't yet know what celiac disease is. Neither do we have a reliable list of associated conditions because each time someone makes a connection the GI's jump in to protect their turf and dismiss the study as meaningless.

The main problem with this is there are still many MD's who refuse to accept serology as proof, regardless of how exhaustively it is done and regardless if the combined tests have a greater specificity than biopsy.

The process of the biopsy itself is a problem in that as an invasive and expensive process but mainly because anyone who seeks later confirmation of serology for whatever reason can only do so by willingly damaging themselves. This really goes against the "do no harm" ethic of modern medicine for not only is the process of reglutening by definition damaging an important organ but it may never fully recover.

If you compare this to diabetes then it is like denying a patient aid until they can prove chronic renal failure by biopsy.

If you compare screening research and diagnosis a glucose tolerance test is usually used. For screening purposes the 2 hour test is usually the only one used. For diagnosis sometimes a more sensitive test is used but diabetes researchers don't dismiss out of hand te majority of scientific studies that only use the 2hr test.

Currently we have a definition of celiac disease that depends where you live and when you were tested. In the UK you need a biopsy, in Italy a full celiac disease serology panel is sufficient.

However diagnosed incidence in Italy is 1:300 vs 1:>1000 in the UK but screening puts incidence in both populations at 1:100-1:200 .... (this depends how specific the serology is)....

In the same way because Italy accepts serology as diagnosis it is far further along correlating celiac disease with related diseases or expressions/aspects of it and this in turn is relfected in the medical communities familiararity with it and keeping up with research on it...

In the UK most MD's never see a celiac, in Italy most have several in their practice..... but the Italian celiacs would not be accepted as celiacs in the UK.

From just being on this board it is obvious that many aspects of celiac disease are shared with gluten intolerants, even those with -ve biopsy. Unfortunately MD's refuse to recognise these conditions even when 50% of their diagnosed patients are suffering them.

As an example before diagnosis I already underwent a stomach biopsy and lots of tests while my primary symptom was GERD.... the specialist GI told me there was absolutely no connection between the GERD and the excess wind I was experiencing ... further it never occured to them to even screen for celiac.

When my mother was diagnosed she faced the same battle... and it was only at my insistence the GP finally sent serology for testing... which came back positive and then my mother underwent a biopsy to be annunced with total villous atrophy. The same GP had previously referred her to a physciatrist for being a hypochondriac.

At any point in the 5 years it took my mum to be diagnosed a simple and cheap blood test could have solved the problem. So would a biopsy but her MD would have been reluctant to send her for one and she would probably never have got one.

So from my POV it is important to identify everything but the biopsy should never be used as a primary diagnostic symptom. Its usefulness is limited to either identifying the amount of damage to the amout of repair or screening for complications ... if you are already diagnosed and gluten-free then the value of a biopsy is limited to seeing if you are repairing NOT deliberatly trying to cause damage to see if you are still celiac!

The question I would ask is if my mother sticks to her diet and her villi repair totally (which doesn't seem like the case unfortunately) what is the value of deliberatly damaging them again?

Any other use of the biopsy can be useful but its usefulness is limited by deliberatly redamaging the villi.

In the case of people who were diagnosed without biopsy then this leaves an awkward question.... if they feel they should be. As is the case here .. what happens if the biopsy is negative?

You can either keep them on gluten and test again or not, if not then do you declassfy them as celiac? If they are ill from eating the gluten for the challenge but the biopsy is negative or inconclusive do you then tell them to eat gluten?

I once read a medical paper by a Norwegian MD who spent 7 years testing a child until he got a positive biopsy.

I find that monsterous. The paper explains hopw the child was ill each time and each challenge was with more gluten and longer until eventually he got a positive result....

IMHO the MD not only needs to be struck off but given a custodial sentence.

gfp ... I'm not sure what you mean by transport ? Are you saying they transport wheat (gluten) and rice in the same containers from time to time ? That's not good ...

What I mean is that bulk food transport usually takes place in dedicated trucks but only dedicated to food grade. Basically yopu have wet transports and dry ones and meats etc are seperate refrigerated ones.

Huge companies own their own but smaller companies buy from suppliers who ship bulk ingredients, be it rice or wheat.

They don't really wash them very often because that would mean getting the insides of the containers wet and the insides are quite compex since 15T of bulk produce or liquid can't be left to roll about so they tend to just empty them out (mostly) and add the new dry product.

You could have Celiac with additional food intolerance. Dairy should be eliminated in the beginning months while the villi heal. I'm not sure that this is an issue for you...since you are vegetarian??

Have you added anything new into your diet after eliminating gluten?

Or you could just have added another product you ised to eat less of...

Also, I think it would be important to find out the results of your testing. For example....if you were diagnosed based on only having elevated IgG..this would not necessarily mean you have Celiac.

There are other conditions known to cause elevated IgG antibodies. This does mean that your body is reacting to gluten but it doesnt mean that Celiac is the cause. You can be gluten intolerant without having Celiac. If you are not convinced....I would look more into it...starting with the test results.

If your immune system is reacting to gluten for any reason...you should avoid it. If its not Celiac...you may have to keep searching for other causes.

This is really just one definition of celiac, for the majority of the time the condition has been known about (2000 years) we had neither biopsy or blood tests... the invention (or modification) or the biopsy tool for the lower intestine hasn't actually changed the disease, just how some people chose to define it. The point I'm trying to make is it's really not important for the sufferers, the diagnostic golden test is more important for the medical profession to attach a label and ownership. A significant (and increasing) amount of medical opinion of non GI's is that serology is the basis for diagnosis and biopsy is the basis for assesing part of the damage. However as far as the patient of today is concerned (zonulin testing being ongoing) the treatment is the same which is a 100% gluten-free diet....

However a negative aspect of pigeon-holing the disease for the sufferers is that this then allows the incidence of people suffering from "celiac disease" to be under represented. This is amplified by the invasive and self destructiver nature of the biopsy which also discourages people from "official" diagnosis...and the more marginalised we become and the more we can be dismissed as a few fad eaters with only a small proportion having +ve biopsies the less legislation will protect us.

If your test results were positive for anti-gliadin IgA, tTG or EMA.....this would be indicative of Celiac Disease. The tTG and EMA are highly specific for Celiac.

Also, if you were only positive for IgG antibodies....make sure you were tested for IgA deficiency. It should be included in the Celiac Panel...but many times its left out. If you are IgA deficient you will not be able to produce enough IgA to test positive for anti-gliadin IgA...or tTG. So you could have Celiac Disease with only the IgG being positive.

I would love to hear any suggestions! I am at capacity with my abdominal dysfunction at this point especially after 3 months of pure gas.

I have but I doubt you will like it.

Try keeping a sheep or goat inside and you'll see that herbivores pass a lot of gas because they ingest very poor quality protein.

As a vegan you can aim for higher quality proteins BUT being celiac severly limits this..especially your ability to combine different proteins to achieve a mix of higher quality.

The second problem is that many of the higher quality vegan proteins are artificail to some extent, people were never made to derive protein from soy, indeed Indeed the introduction of soy as a cheap protein causes diseases in everything from pigs to parrots.

I'm not rabidly anti-soy... BUT I do try and moderate it because most celiacs or a significant number seem to develop other intolerances and soy is one of them. The last thing I need is another intolerance! so I keep it minimal as a source of protein in my diet... Im not against some nice tofu once in a while or even soja sprouts .. I just try not to rely on them as a protein source which is simple since Im an omnivore.....

Other good sources like various nuts and seeds also carry a intolerance risk....

The simple answer may be to consider this.

The bottom line seems to be some people react better than others to veganism..and also this varies through our life (very few vegans beleive in not giving infants breast milk because this is what a baby is designed to grow on). it might be that you are not the best type for veganism OR the celiac has messed you up and this it preventing it working for you until your body repairs...

Everything Cassiy says is worth rereading!

It can take years to get the villi damaged again once you've healed up. Well, it sounds like your mind is made up. Good luck!

I think there's more than just gluten sensitivity that makes us sick. You've really got to go on an elimination diet and try to narrow it down more. You might need to give up Casein (dairy), corn, hard to say. I don't disagree with having your doctor "look" for other problems but going back on gluten for a biopsy is probably just a waste of time. You won't have been on it long enough to damage the villi most likely.

It might be more than a waste of time....

Inded the MD mighht decide she is not celaic based on that biopsy, even though she didn't have time and from a personal perspective what will it tell you if its negative? Either you need to eat more gluten for longer and then test again or you are going to accept the test even though its invalid?

What I forgot to mention before is if the probelm is from something else then going off a gluten free diet will make this harder for the MD to determine.

I can't think how going on gluten will help identify something other than gluten intolerance but I can think of plenty of ways it can mess up other results and tests.

It must be doubly difficult some days!

My husband is the forgetful one so we live off sticky notes as reminders.

You could get a white board or a bulletin boeard and put it in a prominent place. Put up activities a few days in advance.

Since your boy sounds like he will remember - even ask him to remind you. Kinda like: You know how I can get busy and forget, I really want to do this and not be rushed. Can you remind mommy the night before?" or if you feel he is too young for that, - write it down when you plan the activity. Tell your son that you are doing this to help you remember,. It teaches him that everyone needs help with something - even mommy.

You expressed your fears very well in your post, you have awreness about how you are with regard to remembering things. If you state it clearly as you have done, I would hope a professional would be able to help you and your son with stratgies and see how this is hard for BOTH of you.

....hang in there......

Sandy

hmm... my problem is remembering what Saturday is....

I find weekdays and days of the month very abstract...

The whiteboard willprobably help but I have a theory why....

At least for me I filter out as much "irrelevance" as I can, I find it extremely frustrating when people don't get to the point... and to avoid getting angry I just switch on a filter.... my girfriend often tells me how her day was and then slips in an appointment... and then continues, often talking about colleages I don't know as if I do....

A week later she'ss say "come on were going to be late" and I have noidea what for

This sounds petty perhaps but now she writes her schedule down and embelishes it each morning .. Ill finish at XX time - we are going to XX at YY hrs but I want to be early etc.

This really helps me, it annoys her a little but she's come to realise it annoys her less than not doing it.

Do you think that it would be a good idea to have him watch this movie? Is it the kind of thing that he would identify with and maybe say, "Ah hah" at?

Be real careful ....

I read "The curious incident of the dog..." a novel about an aspie and found it very disturbing...

Its only a tiny book and i read it on a short flight + waiting but it left me feeling very uncomfortable afterwards as when I read it I could see both sides so clearly... I was "observing" what the aspie kid was doing and realising it was not "normal" behavior while at the same time thinking OMG... that is how I would react...

I am peculiar about by books (like I'm just plain peculiar but...) I always keep books.... the only other books I have ever thrown away were VERY VERY badly written books where the authors complete lack of writing ability just made me want to vomit... I hated needful things (all 1500 pages but I didn't throw it away) ..I don't want to name the books for fear of controversy since some people seem to love em...

Let me put it this way, if you borrow a book from me I will hound you to the end of the earth to get it back... I just feel like that about almost all books... I preserve them as a remembrance of the time spent reading and Ill often handle them (told you I was weird)... I can hadle a book and bring back memories not just of reading that book but what happened that week or day... if I read 20 pages then caught a train then 20 more flicking through those pages will bring me pretty much perfect recall of every word that I heard and everything I read and saw inbetween. Its like it opens a box into my archival system...

This was very different .. I thought the book was very well written ...leastwise well written but it left me feeling nauseus...in many ways it was like being Dorian Grey looking at his picture...

sorry that's it for now, recounting the book is giving me cold chills...

I pretty much like all boarding and skateing i'll have to try snow boarding some time.

Well this is my girfriends brother....

scroll down to Thursday, June 01, 2006

finishing 3rd in the world slalom championships

Open Original Shared Link

Hi there,

How does everyone use Immodium around here? Before I found I have celiac disease I had suffered from what I mainly thought was Lactose Intolerance for many years and learned to avoid using Immodium unless I had to go somewhere. My thought had always been that dairy was fermenting in my intestines and the only way to move on was to get it out of my system and not slow it down for another day with Immodium.

I also have the impression that Immodium only delays the inevitable -- D And... once the fermenting dairy was out of my system I was good to go.

So, with that being said, how does that compare to a gluten attack? Is it the same theory where you are just delaying the inevitable, and as long as one is hanging out at home near a bathroom it would be best not to take Immodium and let it all out?

Or -- can I just manage it with Immodium and save myself a lot of pain and anxiety?

Also, I believe I am also fighting IBS (my symptoms have gotten worse again since school started (I am a 40 something full-time student with a family, so it can be stressful to say the least) My Doctor told me that managing IBS with Immodium is fine, that it is not all about getting the gunk 'out of the system' -- but I think I am finding it is hard to tell the difference between glutening and IBS...

Any thoughts on this?

Thanks!

Its a fairly complex question and I don't think there is a simple best answer.

As far as letting it all out, its really not that simple because gluten attaches itself to the body. As with most things the body has different ways of dealing with it both long and short term.

One of the first things that happens when you get a virus is your body identifes that virus and starts to take steps to eradicate it. The long term way is by manufacturing specific antigens for this virus but this takes a while so meanwhile the body does what worked for our ancestoral mammilian cousins which is elevating the body temperature. This works well if your a cat or a horse because their body temp is already quite a bit higher than humans or pigs but for humans its pretty ineffective because our body temp is so low to start with and many of the viri are shared across species.

We still do it though because its programmed in... the other responses programmed in are nausea and diarrea.

Meanwhile the body prepares its real defense which is active and targets the viri...

When you have celaic then the problem is that the body misidentifies the protein as a antigen (a virus or bacteria) and starts to make antigens against it...

Because the gluten attaches to the body the antigens fight this and destroy it but also whatever its attached to...

In reality it is not gluten destroying your villi, it is your own antigens.

Obviously the faster its got rid of the better but if you read many household poisions some of them say "Do not induce vomiting" this is because the substance can do as much damage oin the way out as being handled ...

Immodium is a modified opiate like heroine or coedine but it is engineered not to provide the endorphin stimulant that makes the others addictive.

What it does do is bind tot he endorphin receptors and this in itself then triggers a consitpation... a simple way to look at this is your body doesn't want the stuff to leave your stomach and go through your intestines...

Its a little hard to explain because in many ways its like the body is making complex decisions when its really just following a very smart programme.

One side effect of immodiium I find is it effectively blocks the opiate receptors by binding to them, and because it fits better than gluten it does so preferentially. The problem with gluten is it binds but imperfectly and hence can damage the receptor itself thus causing mood swings and brain fog as the body is looosing the functionality to control this itself...and respond to external stimuli

My 2c is its worth taking (but not the liquid that contains gluten) if only to act as a blocker for the exorphins ( a collective name for proteins that connect to the endorphin receptor and commonly include casein and gluten)

A second important thing is that it is the inefficiency of the gut-blood and blood-brain barriers in celiacs that lead to many of the effects of glutening...

you can search for research on zonulin if you want to understand more...

By slowing down the process of these toxins attaching to the receptors being transmitted across the barriers it gives the barriers time to respond... and in a way by binding the toxins in fibre they are being prevented from interfering as opposed to being blasted through your intestines at supersonic speed...

Hi,

I haven't actually used any protein supplement recently, so I can't answer your question. But can I ask why you want to use protein?

Even body builders only need about 2 g of protein / kg of body weight. Any excess will only be wasted. Most people can get all the protein they need from eating meat, eggs, nuts, and other real foods.

As a guideline (though I am triathlete - which is an endurance, not a power sport) following are guidelines for protein, carbs and fat guidelines, which we look at:-

Carbohydrate : 6 to 10 g/kg body weight per day

Fat : Fat intake should not be restricted: 20

McD's has onion rings and potato wedges???

I guess that's one thing we can be thankful of here in the US.... they don't. =)

Well part of the reason I don't trust McDo's is that deep fried onions rings and potatoe wedges were brought in as a response to govt sponsored advertising campaigns to eat more vegetables and less fries...

These along with salads with more calories than a big mac (in the dressing) were the new "healthy" face of McDonalds ...

It can be argued if you are stupid enough to eat them then you deserve all you get and that governments shouldn't be spending our tax money tryig to educate people to be more healthy... but that's a different discussion....

If you read Open Original Shared Link you see what we are up against....

It seems strange to me that someone would think a deep fried potato wedge or battered onion ring is a heathy option... but then we are talking about the same people who don't know that bread is made from flour... and that flour is made from wheat...

Sometimes I give myself a headache trying to appreciate how people can reach adulthood without realising this, then I remeber an April fool the BBC did

Open Original Shared Link

then I realise, if the same people are told by the government health information that fries are bad and they should eat potatoes instead and more vegetables and onion is a vegetable then lots of people are probably assuming this is healthier????

I find it hard to beleive McDo's marketing are not aware this is deliberatly deceiving people, especially given their track record.

Sometimes companies do change but the changes at McDo's seem merely cosmetic.

The real problem is because its franchised and individual resto's can't choose not to use these fries nor can you expect the individual managers who can be nornal folks like you and I and the spagetti incident people to understand the differences in testing methodology... Well perhaps I can because it was my job...

So for me the problem is an individual resto can never improve on the base... they can only deviate further (like perhaps less cleanliness)... because even the best managed ones are still stuck with the products they are told to sell.

Firstly I think the primary issue is CC.

Before dx I used to regard an onion ring in my fries as a bonus ... and it happened relatively often...

Bearing in mind this is only when they accidentally scoop it up it seems improbable that this isn't happening reasonably frequently and it only takes 1 small part of an onion ring to be in the same oil....

Or it could be the potato wedges or .... its simply not a good environment to prevent CC... and the same places that give people the odd potato wedge or onion ring bonus also say they have dedicated friers...

The second thing to consider is that the Australian policy for gluten-free is gluten free, not no gluten was found. Most EU countires use a 200ppm/20ppm cut-off (it depends on the product)

The testing McDo's did in the US used the least sensitive test possible, what is basically a "screening test".

Wheras these screening tests are good for product control etc. they are not designed to classify or declassfy a product as being gluten free, indeed no single test can do that because it needs a study over different batches and times.

The fact remains however McDo's chose to do the least sensitive test and whereby a small company might do this for financial reasons (LCMS is far more expensive) that arguament doesn't have any relevance in a multi billion $ company...

You should make up your own mind, did McDonalds save a few thousands on proper testing because it was a few thousand more expensive or did they not spend it in order to guarantee a negative test?

In the U.S. the mustard definitely does NOT have gluten.

The mustard might be safe but the problem is I'm not going to take their word for it... because they already designed one test in order to mislead and cause sufficient confusion...

Secondly, as a company they are on court record as directly lying and misleading in statements.

Open Original Shared Link

Hindu vegetarians around the world may wish to take note of the little-publicized fact that McDonald's made no changes in their fries, which are still beef-flavoring saturated. Sure, the oil is vegetable. But make no mistake about it. There is meat in those luscious Golden Arches french fries.

See also Open Original Shared Link for a dicussion on this.

Officials at McDonald's India quickly announced that the vegetarian products served in India did not have any non-vegetarian content (Refer Exhibit I for details).

According to the (London) Times, when faced with accusations that hamburgers were inimical to the country's diet, Den Fujita, the first McDonald's Japan president, declared: "The reason Japanese people are so short and have yellow skins is because they have eaten nothing but fish and rice for 2,000 years. If we eat McDonald

Cottage cheese is VERY high in casein and low in lactose...

July is going to be a fantastic month for us Hp fans. I think I will be desprate for the by the 12th so the movie will be enough to stop me going insane lol. We lucky ducks here in Australia are getting it a day early than the U.S and U.K as opossed to 3-4wks later wich it has been in the past.

Yep but you'll be paying at least double for it Really I couldn't beleive the price of books in Oz... especially novels.

I'm looking forwards tot he final book before I start the last one... so I can read right through...

I think the whole series is very well written and I read it in both English and French...(up to the last book)

Hi Allyson,

Yeah I have been 'scoled' on here too for advertising. It's hard not to put your site up as a link when you have information that you think might help people. But I get it, if the forum did allow that, then the entire place would just be one big spam center. So although I thought it was harsh when it happed to me, I now understand and just play by the rules. Don't think that you were the first :-). Welcome!

-Jay

Yep, this is why I don't post very often....

The fact is I'm not interested in "advertising", neither was Allyson but those are the rules....

The rules changed to allow links in our sigs but that doesn't interest me because the reason I want to post the link is because I have information to share, pure and simple. That information is indexed and linked... so to simply copy/paste isn't a big help...

Secondly, as Allyson said it is simply an expression of who I am.

Zip, nada...After my biopsy I had to get on the internet to find out what Celiac Disease was.

I had a gluten-free at univeristy 15+ yrs ago who's sister had it.... though I'd forgotten the name...

The whole concept is so silly anyway, how can you be allergic to wheat

I appreciate everyones opinion. It was a difficult decision to make but I know myself and I want to be 100% sure that I actually have Celiac (can you tell I am a die-hard pragmatist?). I have done an elimination diet and had other tests done and I am tired of not knowing. If it is something less/more serious I want to know, and I trust this doctor. The good thing is I will NEVER be tempted to cheat after this month! thanks again for your opinions and concerns, I'll keep you 'posted'

Janie, please just stop and consider this....

The biopsy is not 100% accurate, even for long term gluten consumption, neither is it definitive. The biopsy can detect other things (like the big C) etc. but it cannot give a absolute negative for celiac disease and that's if we take a very narrow definition of celiac disease.

Your villi do not dissapear overnight, you don't wake up one morning and they are gone fropm the night before but they are gradually and incrementally destroyed while at the same time fighting back and trying to regrow...

Our villi are detroyed and regrow all the time like every other cell in the body but they are not designed to regrow at this rate.

Imagine celiac disease is like this... your body has spent years fighting back and making new villi (like 3 steps forwards but 2 back) while they are being destroyed such that a biopsy would prove negative then because of age,stress, pregnancy, illness etc. your body gets a setback... then your body is taking 2 steps forwards and 3 back... and the villi are destroyed faster than they can repair.

Anyway... the repair itself is very bad.... the cells are not designed to repliacte that fast and the more they replicate the more the replication can go wrong. One of the things that happens when cell replication goes wrong is cancer.

Your post is intellegently written so the best thing is you answer this for yourself,

So consider the following question .. what do you call someone who is currently damaging their villi almost as fast as they are repaired but not quite? The damage is still being done but its repairing that part....

The bottom line is do you call that person a celiac or not?

The fact is that if they get ill then their body regeneration falls slightly they will tip over the balance but equally they might just get older gradually as the bodies self repair slows down... indeed one of the few definates in life is we get older (or die).

The second problem is that the biopsy is a self defeating test.... as far as celiac disease.

If you define a celiac as someone who has a positive biopsy then if you stop eating gluten, your villi repair then you are only a celaic until you get a negative biopsy. This really doesn't make sense apart from being able to pigeon hole

people/patients. As has been said before you are either celiac or not... the biopsy only measures one phase of this.

By analogy, you are still pregnant before you do a home test and still pregnant until a MD's test... all you got is increased knowledge and certainty of your position but it didn't change the binary state change of +/- ve.

think the key here is that Janie is off gluten and she still isn't getting any better. She feels that she needs to know and I can understand that. It sounds like you have a great doctor. There are several complications that can go along with Celiac and I think it is very smart to look deeper

Respectfully that is not what she said....

I have been gluten-free for about three years after being diagnosed with Celiac. I was diagnosed based on my symptoms (rapid weight loss, anemia, bloating, pain after every meal, etc) and a serum test. The doctor just told me "oh, you don't need a biopsy, this is really no big deal anyway, you just can't eat bread anymore." Needless to say, I educated myself on the disease and was very healthy for 2 1/2 years.

What she is saying is lately she has been ill.

secondly and just as importantly

There are several complications that can go along with Celiac

Yes there are and continuing to eat gluten is the most likely way for these to develop....

Several people here have already offered good advice... and I would urge Janie to consider this.

As I described above we all get older and as we do our bodies regeneration slows.... additionally many of us here find we become increasingly intolerant to gluten the longer we are gluten-free.

As a graphic example... a smoker can smoke 40-60 cigarettes a day ... the amount of toxins is the same as a non smoker but sit a non smoker down with 40-60 cigs and ask them to smoke them in a day ... taking an 18 hour day that's a cigarette every 15-20 mins... the non smoker is likely to vomit long before they finish the first packet yet the smoker does it everyday...

Our bodies have an amazing ability to process out toxins but this doesn't mean the toxins are not causing harm...

The two suggestions so far are that Janie has developed increased sensitivity and/or additional sensitivities.

Both of these are likely and both of these happen... the third thing could be something competely unrelated.

For the increased sensitivity there are several pathways to explore...

These include:

CC, perhaps buying from a different place or eating elsewhere....

something in her "safe list" which is contaminated, many of us tend to develop our fall back gluten-free stuff... for a long time I was eating a brand of tortilla chips... and because they were firmly on my safe list I never considered them when I kept getting ill.

Cosmetics/shampoos or industrial products, something as silly as your workplace changing cleaning products or soap ...

For increased sensitivity as mentioned soy, egg, dairy all seem to develop with a much higher incidence in celiacs.

However one test/solution for both of these is to redefine your meaning of gluten-free.

Go back for 1-2 months to completely 100% safe foods... and in most cases this means making the foods yourself...from ingredients that can't be contaminated. I mean no packets etc. just fresh vegetables, legumes and washed meats/fish...

This is really hard... but you just don't know where contamination can come from... I buy all my meat at a butcher and they recently changed their shop around... unbeknownst to me they changed their prep area and now they have pastires etc. in the same area ... aftewr getting sick I took back a piece of meat with a crumb and asked how its possible... the answer was more or less "who cares its only a bit of pastry".... this is a very respectable butcher... they just don't get it...

At the same time switch cosmetics, shampoos etc. stay away from "debatable" items like liquors etc. and then hopefully you will see the same improvement you made before... if not then something else is wrong if you are 100% certain about your diet and contamination.

I am tired of playing Russian Roulette with gluten ... I got nailed really bad last Saturday from Back to Nature Rice crackers ... At one point the company rep told me that they were gluten free ....

Soooo, does anyone know of a company is gluten free or companies with dedicated lines that NEVER have gluten on them ?

Thanks ... Marcia

Part of the problem is the raw materials and their transport ... for instace even if the line is using 100GF stuff they can still be contaminated in transport...

unfortunately the better quality smaller outfits also suffer from this aspect perhaps worse than huge oners, specially local shops who suply thier own because the transporter for bulk flour,rice etc. is often reused , unfrotunately I found the best way is usually finding a uncontaminated source and then making my own stuff like rice crackers...