gfp

A few months ago I went to a workshop given by an MD who specializes in celiac disease. She herself is celiac. She told us that very few of her patients got better just going gluten free. She claimed that the ones who stuck to the Specific Carbohydrate Diet were the ones who got well.

I myself decided to go on the SCD after very little improvement after 2 mos gluten-free/cf. I have been on the SCD for 3 months and have had a very dramatic improvement.

I think the fact that you are eating tons of rice may be your problem.

Not knocking the diet but it could also be a consequence of following something strict that eliminates CC as well?

I personally found food combining (a gluten-free Hay's diet) works for me and people who try say Atkins seem to also respond well but then Atkins is just a Hay's diet with no carbs ?? (In other words it is a Hay's diet by accident)..

I think all these approaches help and having something like the SCD to follow can make it easier./.

Everyone knows where spaghetti comes from: Open Original Shared Link

Seriously, case in point.....

At least back then spaghetti was considered exotic (honestly....) I think the first time I saw spaghetti was Barbara Streisand cooking it and throwing it on the wall. Well, I'd seen the stuff in the Tin with tomato sauce

I know that because of the Italian Immigrants it was more common in the US back then but even so.... this really does show the level of ignorance of people in what they put in their mouths... ??? It really does perplex me....

She said that eventually we need to know if he is celiac for sure or if it's just an intolerance in case he wants to cheat later in life.

Then surely the time for testing is when he WANTS to cheat ???

I can't understand how any doctor can in good conscience tell a parent to purposely cause damage to their child for a test when the answer is already obvious.

Dr's doing this should be struck off, pure and simple....

We all laugh when House does something like this thinking "Dr.s wouldn't deliberately provoke a condition that may have consequences for the rest of the childs life" yet it happens everyday with Dr's trying to satisfy their curiosity...

The child was ill, you took away gluten and ... hey he's well. He gets a little reflux (and I know it can be scary ...) and the Dr wants to poison him???

Check this: Open Original Shared Link

So Parent: "My son had intense sleepiness, vomiting, convulsive movements and dilated pupils, we removed the laburnum tree in the back garden and he got better.... anyway we were at a friends who has a laburnum and later he was very sleepy and vomited"

Dr. "Well, lets get him eating laburnum seeds for a month and see if he gets worse"

Hey.. what would happen to that MD ???

If you can't for the life of you picture this then put the face of Hugh Lorrie instead of your MD....

Heck, even House would be saying that with deep deep sarcasm ....

In my opinion, parents are doing the right thing when they remove a substance from their children's diet that is causing them harm.

Exactly, if he doesn't have flattened villi then what ?

Will you just encourage him to eat gluten till he's so sick the villi do flatten? Of course not (hence your asking the question) ..

The blood tests tell you all you need to know, especially combined with the response to diet, biopsy's have false negatives ... especially in young kids. Like Fiddle-Faddle said, you stand some chance of provoking something serious.... it might be small but I see no possible value to the biopsy and more importantly the gluten challenge.

Its one thing for the MD to suggest this, he's not the one looking after your son! I very much doubt he would put his own child through this!

Here's a suggested itinerary...

Take that sell out Cynthia Kupper and ask how much McDonalds paid her to lie.

Gluten Intolerance Group (GIG) applauds McDonald

You have gotten a couple of good replies that I agree with whole heartedly. Do give yourself a good strict trial on the diet for at least 6 months. Welcome to the board and feel free to ask any questions you need to. IMHO you have found your answer to your issues. Time will tell, I know it did for me. I never expected to lose anything other than my constant D on the diet and had no idea it would also clear up so many of my autoimmune mediated issues that the doctors had mainly said 'learn to live with it' about.

I agree with everyone else....

A gluten-free diet is not in ANY way harmful, you cannot damage yourself being gluten-free .... BUT not being gluten-free you can...

Meanwhile you have other worries... perhaps founded, perhaps not? However nothing is stopping you going gluten-free...

False +ve serology is rare, false negative biopsy is common ... further you were several weeks gluten-free which means if the damage was just starting to get out of hand then the chance of a positive biopsy decreases while on gluten-free diet... to the point where if you do it well enough for long enough the biopsy should be negative (but you are still celiac)

Go gluten-free and throw in casein free as well and get the blood tests redone.... if they stay high then your Dr. will need to explore further but if they drop you have your answer.

Strange, I have been warning everyone about the CODEX gluten-free for quite a while.

Now it's too late it seems suddenly like this is a new topic?

As I have repeatedly posted the relevant parts of the CODEX and they have been ignored I don't feel inclined to do it again.

The bottom line is the CODEX is written by the food industry (Canada and the US actually getting the majority of votes.)

It is passed by the WHO .. but written by the food industry who present faked biased studies to say that 20ppm does NO MORE HARM than people who SAY they are totally gluten-free. (SAY is bolded, these studies don't actually check)

Well, due to apathy the US has adopted the VOLUNTARY standard that forces (practically) anything labelled gluten-free to had added gluten... so welcome to the lottery.

Thanks for the tips. I do try to explain to my freinds about celiac, but most of the time i end up wanting throw something because all i get are comments like "I'd tell them to stuff it" (them meaning my doctors) and "I'd die if i couldnt eat cookies and pizza"

Nikki, I think its more likely your friend can't help eating cookies and pizza and instead of accepting she has a problem is looking to transfer the 'guilt'.

Good point.

Still, my gut (sorry, didn't intend the bad pun ) says that he's on to something--but I think the potential is probably only for a subset of celiacs/gluten intolerants, not for all, and especially not for those who suffered the typical (of USA) 11 years of severe damage before having been diagnosed.

This boils down to what is celiac disease vs gluten intolerance vs pre-severe vs ....

My theory (which I believe due to its simplicity,personal experience and experience of others here)

We all start off with an intolerance, for many we then repair the damage as fast as its done.

We get ill, pregnant or just plain older and our bodies repairs slow down.

We damage the villi faster than we can repair them...

Things go downhill rapidly, we can't adsorb nutrients, our ability to repair is itself impaired ...

Now to me drinking a few bud-lights or regular small doses are just stressing the system...

Perhaps we can repair that damage but the process of repair and fighting it is itself harmful. Just because the villi look OK (well not perfect but OK) means, to me that they are coping with the problem BUT that this is casing other damage.

You can run your finger against a brick wall and get no damage... once a year you might graze it badly but it repairs...

BUT

Run your finger gently against that brick wall all day... keep going and it will be a mess... sloughing off a few cells is fine so long as its not continuous.

The breakpoint of damage faster than repair needs to be avoided... if someone is 'lucky' enough not to have past it then good but if they continue sooner or later they will pass it then the downward spiral sets in quickly...

I think this is all fascinating, and am very grateful that MJ started this topic. I thinkit is definite "food for research!"

I have often wondered why a colleague of mine who was diagnosed as celiac as a baby, and who is otherwise very strict with her diet, insists that she does not react to soy sauce and Rice Krispies--and her following testing seemed to have proved this. Before I was diagnosed, I had noticed that when in Japan for work (twice, for several weeks), I was PERFECTLY healthy--even though I was consuming soy sauce at every meal (though no other wheat products)--no tummy aches, no reflux, no rashes, no bloating, no mushy poops. I also lost 10 pounds of blubber each time, even though I was eating just as much as usual, and eating tons of rice, to the consternation of my Atkins-dieting colleagues.

Yes, I know soy sauce does not contain barley, it contains wheat, and the discussion is about barley, so please, don't jump on me with posts about soy sauce not containing barley! (And yes, I use San-J wheat-free soy sauce.)

What I'm wondering is, could it have something to do with the fermentation process? Barley malt is fermented, right? And so is the wheat in soy sauce.

Is it possible that there is a subset of celiacs who are undamaged by these fermented grains? Perhaps it's the subset of celiacs who have suffered the least damage before being diagnosed. And perhaps the fermentation process does yield an extremely low final level of gluten.

Obviously, much more research needs to be done for us to find out--but I wouldn't hold my breath waiting for it, as the pharmaceutical industry funds most studies. They're not going to fund anything that doesn't have the potential to make them future $$$.

I must say, I have very mixed thoughts about what MJ is doing. On the one hand, I wouldn't think it worth the risk since there ARE gluten-free beers available. (Then again, I'mnot a beer-drinker, so I honestly can't say I've been there!)

On the other hand, I don't think he is kidding himself. I trust his own intelligence and awareness of his body AND the fact that he has bothered to have repeat testing done.

I think it is totally possible that he might be on to something, but even if he isn't, I do thank him for bringing it up, as I don't think it is a black-and-white issue--and therefore, it merits discussion. Just because many people see it as a black-and-white issue doesn't mean that it IS. I also want to thank everyone who has posted their opinions--that is what this board is for!

At one point I thought I knew quite a bit about Soy Sauce....

Then I fond out how much I didn't know....

If you have a few spare hourse Wikipedia Soy Sauce....

Some have barley and others (mainly non trad have wheat)....

but .. back to the topic

Obviously fermentation does something.... but what?

Also the Soy fermentation is quite different to the Beer fermentation ...

It seems pretty accepted (outside evangelising vegans) that Soy is bad... but fermented soy is OK in small amounts (including Tofu)...

We might consider, is the 'real deal' in Japan different to all but very high end US/European Soy Sauce?

I think some uses specifically germinated barley (we could look into this)...

The actual fermentation is important.... any fermentation is primarily based on the type of yeast and the raw product but speed, temp etc. play a large part.. (as any home brewer will tell you)...

I seem to remember Soy is fermented VERY slowly... (esp the real deal)...

I must say, I have very mixed thoughts about what MJ is doing. On the one hand, I wouldn't think it worth the risk since there ARE gluten-free beers available. (Then again, I'mnot a beer-drinker, so I honestly can't say I've been there!)

On the other hand, I don't think he is kidding himself. I trust his own intelligence and awareness of his body AND the fact that he has bothered to have repeat testing done.

well I didn't see the test results....

There are a LOT of unknowns but the basic unknown is what tests did he get ...

The biopsy is rather pointless as it could just as easily have missed the area... and the amounts are low...

However, for me the biggest unknown is .... What are the long term effects of small amounts of gluten.

Every real clinical trail I have seen has always said "low (CODEX) amounts show no more damage than a gluten-free diet..." but this is meaningless as it means some damage is found.

One has to presume that damage is damage and less damage means the body can keep up the repair process?

However this is a bit like the undiagnosed condition ... pre-event (be it pregnancy, illness or getting older)

Whereby we may be better we are still causing thyroid fatigue and provoking mytosis and increasing cancer risk,

Good morning people,

I'm happy to say I didn't get sick last night. I got a little woozy (but I had already drank a margarita, which is definately gluten-free, though it contains 3X the alcohol of a beer, at least mine do ), got real sleepy, went to bed, slept all night, and woke up somewhat hungover. I don't usually feel that way after drinking tequila or bourbon. But, I didn't have any glutening symptoms, and believe me when I say that unfortunately I have intimate knowledge of glutening symptoms.

I am absolutely shocked! I would have bet anything that a regular beer, even if it is light, would make me deathly ill. Don't think I'd do it again, but it's nice to know I could. I still feel it is a violation of the gluten-free diet. But hell, if I thought I could get away with eating a nice, big, juicy, double cheesburger from my favorite old burger joint, I'd do it in a minute .

I've done my duty in the interest of Celiac science research.

best regards, lm

My personal thoughts are a mix of self experience, others here etc.

One thing I found was that I get neuro symptoms way before gastro when I have trace amounts...

Truth be told, I find the neuro symptoms far worse than the gastro so gar as my happyness is concerned.

One thing I have done when glutened is as we say in England "Might as well be hung for a sheep as for a lamb" .. in other words if I get glutened (you know finding that crouton hidden i the salad) I tend to think what the heck.. give me a beer!

I have noticed the woozyness is far more pronounced.... as are 'hangovers' in the out of it stakes (not particularly headaches but just feeling out of it...

I drink a fair amount ... on occasions a couple of bottles of wine or 8 pints of 6% cider.... but 3-4 pints of regular beer and I feel 'out of it' the next day....

I'd be interested in your observations.....

However as a general warning, I also found that there is a huge difference to my general health and overall mental wellbeing that gets progressively worse on trace amounts..

Its more of a build-up type feeling than the "oh heck ... where's the nearest loo" ... and so consuming a little regularly might IMHO be worse than having a pizza and beer day once a year.... A little all the time and the body is never recovered....

Just my 2c though....

You could try Ghee, it is clarified butter and is gluten and casien free. Do be aware that almost all butter subs do have casien. This applies to many that are termed dairy free so be sure to look for the word casien on the labels if you are avoiding milk protein.

I'd second this.....

Butter subs are usually chemical nightmares.... and usually have a whole load of something bad.... (or taste bland)....

If your low-casein (instead of 100% CF) then butter is low in casein, its mainly fat and water!

I use gluten-free chicken or veg stock cubes in my rice if I wanna jazz it up.... however although I limit my casein I'm not fanatical like with gluten.

Try buying several olive oils... from a heady tuscan vigin to a light one.

You can buy some spice jars and then fill them 2/3 with oils.... to this you can add garlic, bay leaves etc. and make your own flavored ones.

Toasted almond oil, walnut oil etc. are all great for adding flavor....

lighter oil like grapeseed are good to just add flavoring to (like garlic or chilli)....

oops see Jestgar already put some of those.... and I'd also 2nd tahini etc.

its not only NORMAL .... Its a sign you are otherwise doing very well!!!!!!

Your body is adapting to a life without this Toxin ..

Imagine not drinking alcohol for 10 years then drinking a 'normal' amount...

Imagine not drinking coffee then having a double strong caffine packed one....

Imagine after years of living in downtown (??LA/NYC?) you move to the clean countryside and your blocked nose gets better... then you go back for a day.... suddenly the air 'tastes' polluted....your sinus's are not used to it and you get worse than you were when living there.

your body was previously doing its best to cope with a toxin it received everyday....

Your body has now obviously decided it doesn't need to .... its returned to a more normal state.

We all make slips, don't beat yourself up but instead take this as a sign....

1) This is how gluten affects you.

2) You are doing really really well because your body already got rid of it...

If there is documentation that being in the bakery makes you sick then show it to me.

You can be as offended as you like but it will not change the FACTS....

You can believe what you want.... but it will not change facts...

You really sound like you are not going to accept the facts but ....

I'm going to post the FACTS once, if you want to argue then don't bother ... I am not arguing back.

source:

Open Original Shared Link

1)

Air sampling was done in a UK bakery and a flour mill with an eight-stage cascade impactor to determine the size of airborne flour particles. The concentration of captured material was determined by a competitive inhibition radioimmunoassay. Comparison of the different sites revealed that

8.79% and 52.14% of the particles in the bakery dough-brake and roll-production areas had a diameter < or = 6.0 microns, respectively,

and

19.7% of the particles in the flour mill packing area were of this size. We conclude that in dusty areas up to 20% of the airborne flour particles are of a diameter likely to allow them to be deposited in the bronchial airways and alveoli.

2) Everything we breath will end up in one of two places....

Back in the oropharynx or in the lungs...

This process is known as the Mucociliary Escalator

(we once had a med student here who was so ignorant she didn't even know this basic biology)

The cilia of the respiratory epithelium beat in concert cranially, effectively moving secreted mucus containing trapped foreign particles towards toward the oropharynx, for either expectoration or swallowing to the stomach where the acidic pH helps to neutralize foreign material and micro-organisms. This system is collecively known as the mucociliary escalator and serves two functions: to keep the lower respiratory tract sterile, and to prevent mucus accumulation in the lungs.

The mucocilliary escalator is vital for the movement of mucus up the respiratory tract to the pharynx. The mucus layer is biphasic with a serous, sol layer in which the cilia beat and, above this, a viscoelastic or gel layer. Due to the viscous properties of this upper mucous layer, the tips of the cilia catch in the layer, which may contain particulate matter, and drag it cranially toward the oropharynx.

From the oropharynx there are two possibilities: We sneeze or we swallow. (Both being involuntary actions)

(Said med student claimed not to swallow...)

Even if you sneeze you will not get rid of all the particulate matter.some will always end up in the stomach.

According to the study above only 20% reaches the lungs .... the rest is moved by the Cilli back to the oropharynx where we sneeze or swallow.

Not all products by these companies are gluten-free, but you can read their labels and know.

One also has to be aware of the difference in:

Tips about Common Ingredients:

* Food Starch and Modified Food Starch: When listed in the ingredient statement of Kraft products, "food starch" and "modified food starch" often refer to corn starch. Our ingredient suppliers assure us that the corn starch we use in our products does not contain gluten. If a Kraft product uses food starches from a gluten-containing source, such as wheat starch, the source will always be identified in the ingredient statement.

* HVP (Hydrolyzed Vegetable Protein): If a Kraft product uses hydrolyzed vegetable protein, the source will always be identified in the ingredient statement.

* Mustard/Mustard Flour: This ingredient does not contain gluten.

* Vinegar: When listed in the ingredient statement of Kraft products, distilled vinegar is used. According to our ingredient suppliers, the distilled vinegar we use does not contain gluten.

and

Our products are tested to make sure they do not contain gluten.

Whereby it is a great step forwards to list the sources... and that they do deserve recognition for this they are making a deliberate legal disclaimer here. They are in no way claiming the prducts are gluten-free, they are simply saying their suppliers say they are gluten-free.

They do not say where their suppliers are based....

Personally, I could do with a few $$$, If Kraft want I'll set up an office in Mexico and buy US corn starch and supply it to Kraft with said guarantee. I won't test it, why bother ??? Indeed I will take the corn starch they don't buy because it is not gluten-free, I will then just give an assurance it is and sell it with a guarantee. I'll just add $5 a ton....

I'm not saying this is where Kraft get their corn starch .... BUT there is nothing ion thier statement says not!

What I would say is that the specific lack of any statement by Kraft of the source of their starch and/or ANY QC testing by themselves is suspicious.

Many US 'businesses' ALSO buy a different white powder from Mexico (or Columbia)... I very much doubt they accept a purity guarantee at face value! Nope, they have a chemist on hand to sample some of the product on every delivery....

A more legit example: is buying and selling crude.... (something I do know about)....

When companies sell crude it is sold at a standard... YET every single shipment is sampled and tested....

So this white powder that Kraft buy by the ton.... incredible they don't actually test it ??

Lio,

As already mentioned.... you should just try and stay away from processed food and buy fresh.

Millet and sorghum are gluten-free..... the Guinness made in Nigeria uses millet.

there is no need at all to buy special gluten-free food if you can buy your own vegetables and rice...

I posted an idea a LONG time ago.....

There are many sites where you can get printing done.... and VOLUME really makes the cost tiny.

If people wanted to club together then you could get t-shirts and awareness cards (call em postcards).... etc. made up for cents

Apart from the relative cheapensss of bulk.... it would really help awareness to be consistent....

I for one wouldn't mind giving my time .... nor if Scott wanted to add a promotion on the cards ??? for organizing???

We have a LOT of artists here (something to do with celiac disease genes and creativity perhaps)....

All we would need is organisation....

My suggestions:

Postcards (very cheap by the thousands) .... with a awareness message on one half and the other half for us to write "I will be stopping in your Hotel from ... to.... and ......" or similar uses... ladies, keep 10 in your handbag.... and give em out... guys get a handbag (or briefcase perhaps )

X-Mas cards .... (A resident artist does the front.... inside is a celiac/gluten awareness message)

Get organised and these things cost cents... 20,000 for $800 ....

That is if 100 people take 200 each it will cost $8 for 200 postcards.... !!! (thats 4c a piece)

Give em away.... send them in advance to resto's, leave a copy with the manager to put in the kitchen ... give 10 to your mom/spouse/partner... give the kids 20 to give to the teacher at school.....

OK, so maybe I was a little rash in my response to MTNJ. I wasn't aware that light beer is gluten-free. Could someone please cite any study, test results, or link that even suggests light beer made from barely has negligeable gluten. I'm sorry, I thought we were supposed to avoid gluten containing products. Now I learn we try gluten foods that we think are too low to cause harm on an experimental basis and if we don't get sick then it's OK to keep ingesting it.

To prove my remorse, I'm drinking a Miller Lite as I type. I always keep real beer for our guests. They usually like light beer. I've never drank it, preferring regular beer. But, since I can't stand Redbridge, and I've been bad on the forum lately (yes, I know I'm a dick), I'm volunteering to be a human Celiac guinee pig (sp), and for the first time in 20 months am consuming gluten (albeit hopefully minute amounts) on purpose. I will of course report back later and if I get deathly ill I will be cursing all of you (not on the forum of course, as I'm already up to 33% warning thanks to the forum police having no sense of humor).

To Ken70, Mountaineer Josh, and Calicoe, sorry I ruined your black panther party (that's a Forest Gump joke ).

Hey, I said best regards!

lm

Larry, if your going to do that then I would have suggested you get a full celiac panel before and after ....

Do be careful, remember so many side effects are very slow to come on and progressive so we don't notice them.

I wish you all the luck but do be vigilant for the warning signs (like getting a nice buzz on a minimal amount of alcohol....)

As someone said earlier (and I found), if I do drink beer then I get altogether more drunk than a similar amount of gluten-free alcohol...

Watch for increased headaches, any numbness etc.

My personal theory .. gluten is soluble in alcohol (by definition)...

Alcohol may well increase permeability of the BB barrier wrt gliadins... it seems a distinct possibility to me....

Some of my family members also think it is funny to poke fun at cross contamination. They say things like, "What if the clerk touched some gluten two years ago?"

Sometimes I wish poisoning was not such a serious felony!

(except the apparent case of gluten!!!! which can be done with complete immunity)

There are times I would just love to load up someones food with laxative!!!

Lets do a quick straw poll.....

Who would load up a meal with laxative and eat their fair share ... just so the others would actually get it?

L-Glutamine is an essential amino acid. It is not derived from any gluten containing food.

Well it can be derived from almost any source, animal or vegetable.

I would say the important thing is how its derived and how pure it is.

Glutamine is not related to gluten except in the way that say water is related to ice-cream. (In a very broad sense)..

Ice cream contains milk and milk contains water (just like every vegetable and animal) ... but just because you have a diary allergy wouldn't make you allergic to water....

Put another way (trying to be non technical) ... amino acids are basically building blocks for proteins...

Its like having a set of different colored lego.... (on a much smaller scale)...

So the amino acids are made of C-N-H but that's pretty much as irrelevant as the lego being made of plastic

Amino acids stick together in long chains... many of these chains occur in lots of different species... (well mostly its a limited number)

A certain set of these possible tens of thousands of combinations (lets say yellow 4x4 square/blue 4x8/green 8x8/green 8x8 ..etc...) make up a common protein sequence... this protein sequence is common to say wheat, rye and barley....

In lego world this is like say making a generic house ... 4 windows and 1 door on the front ...

If we have enough lego we can make a generic lego town.... but when we build a firestation etc. the generic doesn't work,we invent a new one...

gluten is like the completed house.... with 4 front windows, 4 at the back and a front and rear door, roof and all.

rye is like we take a similar model but we have 6 windows or a double window at the front ... and perhaps barley we have a porch...

oats is a similar looking house but we use a different set of lego for the roof ....

In this context the protein sequences are like the "generic door" or generic windows.... the amino acids are the lego bricks... and the protein is the completed unit....

So stepping back....

Without researching how amino acid suppliments are manufactured I don't know if they are derived from proteins which are broken down by enzymes ... or synthetically produced ...

Neither do I know the purity a preperation need be to be called 'l-glutamine' ...

It is possible that 90% is good enough.... for instance melon flesh (not seeds) contain almost 90% of one single amino acid...

(This was actually a undergrad research project I did nearly 20 yrs ago) potatoes contain nearly exclusively methinonine (from memory) ...

So if 90% is good enough then a dried out melon protein could be 'sold' as a amino acid suppliment...

Further to this amino acids are not harmless suppliments

Changing the bodies amino acid balance can have VERY drastic effects....

pure amino acid suppliments can completely change a metabolism... for better and for worse ....

Although unrelated to gluten and celiac just because they are simple and natural doesn't make them harmless..

Salt is very simple and natural and our body requires it to function and occurs in all our foods but supplimenting it in large quantities can have big effects!

This is completely misleading....

Open Original Shared Link

because glutamine occurs naturally in the body ....

This is complete BS.... or worse.... arsenic also occurs naturally in the body.... indeed we would die without a tiny amount of it but too much soon leads to health problems... (the only natural {sub uranic} element with no known use in the body is mercury ... ) I'm not saying no known health risks for L-Glutamine is incorrect, I'm saying their reasoning is beyond fundamentally flawed and dangerous!!!

phenylalinine (basically splenda) is also a naturally occurring amino acid found naturally in the body....

Small amounts of it can in sensitive people reduce them to morons (medical definition IQ<20)

The reasoning of things in the internet like the above link are EXTREMELY DANGEROUS....

They are the online equivalents of the heathfood shop hippy telling you that "this is whole wheat it's not processed and can't make you ill". just because something is natural or normally found in the body DOES NOT mean its harmless!

I think that after WWII, packaged foods just took off in popularity, you had more working moms, and packaged and convenient foods (like mixes) were seen as a huge help to the homemaker and family in general. And back then, there was more trust of the food companies. (Ironically, since the Pure Food and Drug Act was only signed into law back in the 20s, I believe). People started buying by brand. And after years of cooking from scratch and spending hours in the kitchen, moms welcomed easy-to-make foods like Hamburger Helper and cakes from a box.

Sam, these are my thoughts....

Here in the UK it was a little different because of the rationing during WWII. For distribution reasons etc. many people became accustomed to packaged/tinned etc.

It mainly amazes me that people are simply not interested in what they put into their bodies.. to the degree they don't know how spagetti is made or what the basic raw ingredients are for many dishes.

I'm not even talking about additives here, just the basic raw ingredients in traditional foods.

And I kinda have to agree with pjmaxx on one point: What response, exactly, were you expecting? The people on this forum are rabidly protective of new people, and the statement that "Some people with Celiac can drink lite beer", which is exactly what you said, is guaranteed to cause a stir. Honestly, I think some of the posters were right in that this is the only resource for a lot of people who are new and clueless and it is unfair to mislead them in any way.

This is certainly my primary concern, not that I'm not concerned for Josh ... but there are so many people who will either be.

1) Misinformed by their MD or GI, simply because they have never actually looked at being gluten-free... not for nasty reasons but rather like a judge handing out a sentence... does a judge know what its like to be locked in a Max security facility for 40 years??? Of course not because they didn't try it... inxdeed not even overnight...

Its the Same for many MD's.. they know a gluten-free diet is the correct treatment BUT they never actually tried it... it doesn't come in a bottle that says "take 2 pills after each meal" or "take 1 pill nightly before retiring" ...

2) Referred by a GI to look on the internet because at least thier GI knows they don't have the experience.

3) Someone looking for information by themselves

The first two are usually feeling pretty poorly about themselves and this new diet... what does it mean.. what can I have and what cannot I have???

We have all been here and if its one thing consistently: Its confusing as hell.

We that have been down this road and back have a moral duty to our bretheren ... we are afterall a big family.

IMHO we should all strive to think about what we post and how it may confuse or mislead a newly diagnosed person looking for help and equally comment on people's posts we think may confuse as well.

While I'm concerned about anyone recently diagnosed and newly on the diet reading and

possibly misunderstanding or thinking that they could possibly drink beer made with gluten

products, I thank Josh for posting about this. When he directly consumes gluten, his test

results apparenty come back positive, but those test results remain negative if he restricts

all gluten sources except certain light beers. I find that extremely interesting, - especially

since we do not know what the gluten ppm are of these brands.

While I would strongly caution anyone that is diagnosed with Celiac disease to avoid all

sources of gluten until the gluten ppm is determined and proven to be below what might

be considered safe for most people with Celiac (symptomatic and asymptomatic), and to

be under close medical testing/supervision when introducing the products under the 20

ppm threshhold, I am extremely interested in hearing from anyone with Celiac disease

that has had the same experience as Josh with light beer, and from anyone with Celiac

disease that is following a gluten free diet except for consumption of light beer that has

had a differing experience, ~ and in eventually learning what the gluten ppm is of

those products.

I'm not suggesting or encouraging anyone on a gluten free diet to start consuming anything

that is made from a gluten source, - but I think it would be fascinating to hear from

anyone that has had a similar, or opposite reaction from what Josh describes.

As a cancer survivor, I take risk considerations very seriously, and choose to (almost)

always err on the side of caution, - but that doesn't mean that I automatically assume

or accept that I (or anyone else, including my many doctors) have all of the correct

answers. If my doctors did have all of the correct answers, my brother and I would

have grown out of Celiac disease, and he might still be with us today.

I'm leaving the jury out on light beer until the day that we know what the ppm actually

is on these products. If anyone has any hard evidence, - test proven evidence on these

products, please share. Until we have that, I'm interested in listening to the experiences

of people like Josh, to at least open up discussions about things that we may or may not

have all of the correct answers to.

From WW30's link...

There is no completely solid evidence for or against there being a threshold of gluten consumption below which no harm, or at least no lasting harm, occurs and above which definite harm occurs

From Josh...

For the third straight blood test "check-up" my numbers are great and no sign of gluten entering my system.

After my first celiac panel bloodwork revealed my antibody count was around 275. Also, last year, I had a follow-up endoscopy, while drinking beer regularly, showed no signs of celiac after being on a gluten-free diet for the previous year

As I asked earlier, what antibody count and was a full panel done....

Some before and after numbers (and which) would be informative...

"We do spot-check some of these and have an ELISA test done on them, usually at 10 parts per million. Most companies' products always test below the level of detection of these. There are a few that do not, and a few that have surprised us, like beer. We tested three kinds of lite beer with an ELISA at 10 parts per million and they all came out below level of detection. We tested another product that had barley as a second ingredient, and the company gave us the test and it had been tested with one of the older ELISAs that was only sensitive for the gluten. So, we tested it at 3 parts per million in one that was cross-reactive; 3 parts per million barley, the second ingredient, below level of detection."

ELISA is not a 'serious' test, its a screening test.

To do this properly a full quantitative test would be used.

However, what we come back to is that there is presently no evidence that even trace amounts do not cause harm...

For those who don't experience a reaction (they notice) we don't know what this means ...

What we do know is that when many people here have gone gluten-free 100% they do experience reactions where they hadn't realised before.

Actually, Oats can cause an immune response in about 10% of celiacs. Here are the facts on oats for the Celiac Sprue Association. No one really knows who is and isn't the unlucky one that cannot tolerate oats. That is why it is recommended that oats still be consumed in very small amounts.

Open Original Shared Link

On our own site there are several studies listed regarding the controversy of oats, including the latest one, which also states that barley is only picked up as gluten in one of two commercially available kits for detecting gluten. (just an interesting note) The Celiac Disease Oat Conundrum - found on Celiac.com

Horedin is different to gluten which is different to avenin.

Commercial kits are designed to detect gluten ... some of the ELISA kits will detect horedin as a similar reaction but they are designed to test for gluten.

So yes, it is the same kind of risk. Oats are still considered controversial. Everyone has their own bias, depending on their own comfort level. Many people still eat McDonald's french fries despite the controversy. Misinformation is misinformation.

But I have never said differently, check my posts!

We all know that eating out is an extreme risk. Most of us still do it.

And I still eat out sometimes and take a risk YET I never say it's OK... or not risky...

I would not call this misinformation. He is simply stating his experience. How can that be constued as misinformation.

There is a lot of misinformation on the board, a lot of it is promoted over and over as fact, without anyone jumping on the poster and saying this should not be posted here because it is misinformation.

Actually I got bored of explaining why grain alcohol is not safe, despite being a research scientist who has specifically worked with distillation... but hey ....

I don't eat any gluten from other sources. In fact, I rarely even eat out! I don't eat processed foods either. So, if I were to drink three or four beers a week and remain on a gluten-free diet, I'm guessing I'll die from something else that isn't related to Celiac.

Actually I have seen no studies that say eating (or drinking) less is any better than not....

On the other hand intestinal cancer/thyroid fatigue are not really changed by eating trace amounts...

I have seen no studies on delivery methods.... that is prolamines are by definition soluble in alcohol. Cell walls are not permeable through size, ion exchange is the method of large molecules being passed through stomach/blood and blood/brain barriers.

To my knowledge noone has looked at relative permeability of prolamines in alcohol vs water....

Cancer is caused by mutations of cells during mytosis (about the best fact on cancer)

Thyroid fatigue is caused by the thyroid constantly needing to stimulate antibody production ....

As someone said you can't be "a little pregnant" ..

just as our immune system either detects or does not detect an "invader"

Regarding intestinal cancer.... (not the primary risk but...)

What is the difference between biospy proven celiac disease and gluten intollerance with +ve antibodies and no visible damage?

One theory... (and by occams razor probably the simplest)....

Our villi get repaired....

how?

By cell mytosis

one day we repair faster than we destroy and the next apparently we destroy faster than we repair....

But we are still destroying.... and hence we are still repairing and causing mytosis which itself increases the chance of mutation and cancer.

Oh, I know. Plus celiac is new to the public, as far as awareness, and their generation (born during the Depression) is not as aware of it. My friend just loves to feed people; it's kind of how she shows love. If I give them something i've made, she feels she needs to reciprocate. She *always* has treats for the kids when they go over there, too.

The problem is not even related to gluten,

The problem is that people eat things they have no idea of the ingredients...

Personally I find it incredible that anyone would not realise how to make spaghetti or bread or cookies..

Yet there are (presumably) intelligent people out there (with medical degrees) who just stick anything in their mouth without even caring how its made ....

Beats me but ... I think the generation from the depression were probably the first generation to start this?

I'm sorry...mandatory?? There is no one sitting here to hold my hand and force me to follow the diet, I choose to follow the diet because it makes me feel healthier, I know several people who choose not to follow the diet because of whatever personal reason and they deal with the consequences. So yes, while the treatment remains the same, some people do not noticeably react when they consume gluten. Nothing is mandatory...most people won't immediately die if they eat gluten, they just get sick...and if people want to be sick all the time, that's their decision.

Like I said in my post...just because you're consuming gluten and don't notice a reaction doesn't mean that it isn't doing damage, even if your antibody levels don't jump up.

I think what some of us are trying to say is that "noticeably react" really depends if you are gluten-free or not.

When posting here its good to remember people who have poor or more likely worse than poor advice from a GP or GI will be reading these posts thinking ... ooh I can drink beer...

Its only natural ... however it can be very harmful.

Most GP's and GI's have never actually been gluten-free.... for those with big symptoms they can tell... the worse case is for those who can't.

HOWEVER ... my experience (both personal and of others here) is that MOST of the people say they don't react that then TRY a 100% gluten-free diet then find they actually did react, they just didn't recognise the symptoms.

.and if people want to be sick all the time, that's their decision.

Yes, but lets be sure we give them the best information to base that decision on....

Josh may say he doesn't react .. but I believe its more likely he doesn't recognise the symptoms.

Perhaps Josh is anomalous, (heck we are all anomalous) but perhaps he doesn't react to Barley...

This still doesn't help those reading the post....

We do have a collective responsibility to at least provide the best advice we can and sometimes this means disagreeing with someone.... but not only for them but for newly diagnosed who come here wondering what the heck to do ...