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Still Drinking Regular Beer - No Problems
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104 posts in this topic

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...

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 ...

You said exactly what I was thinking. To people coming here whose doctor has told them to look it up online because that's the best source of info (and that happens A LOT!!), this thread could misinform them. Personally, I LOVE beer, but I'm not risking trying a light beer for the sake of pushing it.

There are varying degrees of sensitivity, not intolerance. For all of us, we ARE gluten intolerant. It is proven that 1/8 tsp of gluten can cause visible damage (DR Green's book). That's a small amount. But we all have varying levels of sensitivity. I am not nearly as sensitive to gluten as others here. Doesn't mean that I can take having Celiac less serious than those who are hyper sensitive. I believe that the same damage that is being done to them is being done to me. So, whether a light beer would make me FEEL sick doesn't matter, it would make me sick.

Celiac can be segmental, so just because damage can't be seen in an EGD doesn't mean there is none. If that was the case, docs wouldn't be pushing the insurance companies to let them use the pill cam more.

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

Yes, exactly what I meant when I used the word mandatory. In order to be completely gluten-free, and therefore have any chance of noticing symptoms when gluten is consumed, one cannot be drinking beer. When one is diagnosed with celiac, to guarantee no neurological or physical damage from gluten, it is mandatory to stay away from beer. No symptoms does not mean no damage.

When I was diagnosed three years ago, I had absolutely no obvious symptoms. I was convinced they had mixed up my test results with someone else's (and I had pronounced villi flattening). After I was truly gluten-free for a few months, I began to get the classic symptoms we all know about when cross-contaminated: cramps, bloating, diarrhea. Kind of a tough trade-off, at times......I used to eat gluten regularly, never had any problems, and now I do have the yucky GI stuff when I consume it accidentally. But I'm a hell of a lot healthier! :)

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

Yep! Precisely...... :)

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All of these same arguments could be made about oats. Some celiacs cannot tolerate oats and will have the same damage to the villi as to wheat. No one can predict who can and can't tolerate the oats. People on this forum regularly eat oats and assume they are safe for them based on their reactions. I know I cannot eat oats based on my reactions, and yes, I tried the certified gluten free oats. So all you oat eaters are taking the same risks you are chiding Josh for.

Furthermore, people are advised here everyday, to forget about the reliability of medical tests and base their diagnosis on their reactions to gluten. Josh is stating his reactions, or lack of reactions and getting reemed for it, even though he is also stating the results of his medical tests, which of course have no validity on this board.

I do not find it inconceivable to think there may be some people who do not react to malt barley.

Lots of things have been put back in our diets that were once considered off limits - vinegar for example.

It is said that the distillation process removes all the gluten in alcohol. However, I definitely react to grain based vodka, but have no problem with potato vodka. So if I have obvious symptoms to this, how many people are having low level ractions and therefore damage, but they don't know it?

I read Josh's post as him simply stating his personal experience and wondering if maybe in the future, it would be found that the levels of these products might be suitable for celiacs. He was asking if others had the same experience, not saying everyone could or should do this.

I don't think he should be attacked for sharing his experience. There were plenty of disclaimers given by those that had also tried it, that they may be an aberration. He also said the key to his success may lie in the fact that he is 100% gluten free in everything else.

I thought this was supposed to be a discussion forum for celiacs. I found his observations interesting. I would have liked to have heard from others who have tried this, but obviously, they would be put down as well, so I doubt we will hear from them.

If we are only concerned with proper information for new people, this board is full of poor advice and statements that need to go away.

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All of these same arguments could be made about oats.

That's actually a different discussion. Barley, along with wheat and rye each contain a protein that causes villi damage in Celiacs. Oats don't. There are some Celiacs who can't tolerate oats, but it doesn't appear to cause damage.

I didn't read anything here in this thread that looked like an attack on Josh--people care and honestly feel, as do I, that consuming any gluten on a continual basis is going to result in damage-- and down the road, complications.

I'm sure there are Celiacs who don't react to barley--or gluten in general. There are "silent Celiacs"--this is most dangerous, in my opinion, because of the lack of symptoms. These people eat gluten with no reaction, often go undiagnosed until they ultimately die due to the years of damage to their systems.

Others have mild reactions and us "lucky ones" who react to the slightest bit of cross contamination. All of us -- no matter what the reaction sustain damage from ingesting gluten.

What an individual chooses to do after weighing the facts is most certainly their own business. I don't want misleading information here for newly diagnosed folks to read when they go looking for facts.

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All of these same arguments could be made about oats. Some celiacs cannot tolerate oats and will have the same damage to the villi as to wheat. No one can predict who can and can't tolerate the oats. People on this forum regularly eat oats and assume they are safe for them based on their reactions. I know I cannot eat oats based on my reactions, and yes, I tried the certified gluten free oats. So all you oat eaters are taking the same risks you are chiding Josh for.

Furthermore, people are advised here everyday, to forget about the reliability of medical tests and base their diagnosis on their reactions to gluten. Josh is stating his reactions, or lack of reactions and getting reemed for it, even though he is also stating the results of his medical tests, which of course have no validity on this board.

I do not find it inconceivable to think there may be some people who do not react to malt barley.

Lots of things have been put back in our diets that were once considered off limits - vinegar for example.

It is said that the distillation process removes all the gluten in alcohol. However, I definitely react to grain based vodka, but have no problem with potato vodka. So if I have obvious symptoms to this, how many people are having low level ractions and therefore damage, but they don't know it?

I read Josh's post as him simply stating his personal experience and wondering if maybe in the future, it would be found that the levels of these products might be suitable for celiacs. He was asking if others had the same experience, not saying everyone could or should do this.

I don't think he should be attacked for sharing his experience. There were plenty of disclaimers given by those that had also tried it, that they may be an aberration. He also said the key to his success may lie in the fact that he is 100% gluten free in everything else.

I thought this was supposed to be a discussion forum for celiacs. I found his observations interesting. I would have liked to have heard from others who have tried this, but obviously, they would be put down as well, so I doubt we will hear from them.

If we are only concerned with proper information for new people, this board is full of poor advice and statements that need to go away.

Precisely. Finally, someone who isn't a zealot that read my post for what it was. It was simply my general observation and MY experience. I did not state that people should leave their homes to go buy any beer. For the twentieth time, I'm saying that if these products were tested, the likelihood that they would be found below the 20 ppm definition would be high. In fact, some research has been done and found that some beers do fall below 20 ppm. In fact, there was a poster last year on this board who tested Corona with a home gluten test and found the levels to be negligible. But, of course, I'm sure most on this board would say, "OH NO! It's not accurate!"

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. Unlike many people on this board, I don't blame Celiac disease for EVERY ache and pain I may have. Some on this board would lead you to believe that this is the most serious illness known to man which is a joke. In the grand scheme of things, we have it pretty good. Go talk to someone with diabetes.

In the future, I'll refrain from coming to this board to simply try and have a civil, educated conversation.

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All of these same arguments could be made about oats. Some celiacs cannot tolerate oats and will have the same damage to the villi as to wheat. No one can predict who can and can't tolerate the oats. People on this forum regularly eat oats and assume they are safe for them based on their reactions. I know I cannot eat oats based on my reactions, and yes, I tried the certified gluten free oats. So all you oat eaters are taking the same risks you are chiding Josh for.

Furthermore, people are advised here everyday, to forget about the reliability of medical tests and base their diagnosis on their reactions to gluten. Josh is stating his reactions, or lack of reactions and getting reemed for it, even though he is also stating the results of his medical tests, which of course have no validity on this board.

I do not find it inconceivable to think there may be some people who do not react to malt barley.

Lots of things have been put back in our diets that were once considered off limits - vinegar for example.

It is said that the distillation process removes all the gluten in alcohol. However, I definitely react to grain based vodka, but have no problem with potato vodka. So if I have obvious symptoms to this, how many people are having low level ractions and therefore damage, but they don't know it?

I read Josh's post as him simply stating his personal experience and wondering if maybe in the future, it would be found that the levels of these products might be suitable for celiacs. He was asking if others had the same experience, not saying everyone could or should do this.

I don't think he should be attacked for sharing his experience. There were plenty of disclaimers given by those that had also tried it, that they may be an aberration. He also said the key to his success may lie in the fact that he is 100% gluten free in everything else.

I thought this was supposed to be a discussion forum for celiacs. I found his observations interesting. I would have liked to have heard from others who have tried this, but obviously, they would be put down as well, so I doubt we will hear from them.

If we are only concerned with proper information for new people, this board is full of poor advice and statements that need to go away.

I wasn't attacking Josh at all. I hope he understands that. I feel it is my responsibility to encourage him to be as gluten free as is possisible, without being obsessive.

When I was diagnosed, some 20 years ago, I was told it was okay to eat rice krispies and corn flakes because studies had shown the small amount of malt seemed to be well tolerated in most celiacs. So I am admitting that I do sometimes eat them with no ill effects whatsoever. My last ttg just came back and it's normal.

I never obsess about the cancer aspect of the whole thing. I was also advised that a celiac has a 20% greater chance of getting cancer than a non celiac. 20% didn't seem that big. I figure there's an 80% chance on my side that I'll die from something else. Just to be alive puts you at risk for something. I can't spend my life being afraid of something that may not happen.

However, this is a celiac board, so I still feel it's my duty to encourage all the celiacs here to do their best to be gluten-free, without being mean and obsessive. I don't approve of being nasty to others about what they eat or don't eat.

I have a shared kitchen and as far as I'm concerned, it's going to stay that way! I'm doing well with the celiac. :) Not the diverticulitis, however. :lol:

neesee

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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.

The Scoop on Oats from the Celiac Sprue Association.

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

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.

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

I think that suggesting someone is not actually a celiac is an attack, as well as telling him basically, he had no business posting what he did because it is misleading.

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.

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http://www.celiac.com/articles/21550/1/Ano...ents/Page1.html

http://www.bmj.com/cgi/content/full/313/7068/1300

http://content.nejm.org/cgi/content/abstra...pe2=tf_ipsecsha

Barley causes damage 100% of the time in Celiacs. Oats do not. I'm aware that there may be those few for whom oats are a problem--but not as many as was once thought.

People eating pure gluten-free oats are not taking the same risk as those who purposely consume barley.

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Josh,

Bottom line is, on this forum, if you admit to biting off the corner of a saltine cracker you'll get the cancer lecture. If you accidentally get glutened at a restaurant, you'll get lots and lots of {{{{{HUGS}}}}}

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I wasn't attacking Josh at all. I hope he understands that. I feel it is my responsibility to encourage him to be as gluten free as is possisible, without being obsessive.

However, this is a celiac board, so I still feel it's my duty to encourage all the celiacs here to do their best to be gluten-free, without being mean and obsessive. I don't approve of being nasty to others about what they eat or don't eat.

Hear, hear. Well said, Neesee. We just need to try our best, and try to help others do the same with this tough diet. Much tougher, by the way and in my experience, than the diabetic diet!

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This is a very interesting topic. We love home brews and micro brews and Mac n Jack but before I knew anything about gluten or intolerances I knew I got sick every time I drank those heavy micro style beers. They are very heavy handed on the grains where as the lighter beers are not.

I have not attempted to try anything but my gluten free beer but this is something I will keep in mind.

Thank you for posting this thread even if it doesn't agree with everyone.

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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.

The Scoop on Oats from the Celiac Sprue Association.

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.

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Mountaineer Josh writes: "You do realize there are varying degrees of the disease right? Look at the literature."

As another person wrote, "just because you don't notice a symptom doesn't mean there isn't one present." Antibodies come, and antibodies go. They're like a snapshot of what's going on with the autoimmune system. So, the IgA tTGA test is a quick, affordable means of determining compliance with the gluten-free diet; but its results are not an absolute certainty. The more expensive upper GI biopsy is the real way to know the effects of celiac disease because it actually examines the destructive effect of the disease where it begins occurring.

As far as the "degree" of a disease goes, I suppose a cancer patient could deliberately expose his body to carcinogens because his disease appears to be in remission and has not (yet) metastasized. Perish the thought!Why, the very notion that it's okay for a celiac to deliberately consume some gluten, especially when gluten-free options are available! <_<

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Josh, some do like civil, educated conversations.

Stick around. :)

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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.

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For Josh and others that may be interested, here is an interesting article on malt barley and celiac disease. There may be a good reason why malted barley might not be causing any overt reaction. This is very interesting a hopefully will be studied further.

Research on barley malt and celiac disease

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First off, I don't reccommend drinking regular beer, and it probably is not the best choice when there are gluten-free beers available after all. Why take the chance?

But I do want to share this quote from the US FDA hearing on food labeling in 2005. Keep in mind this is from 2005 and I don't know if CSA has updated information since then that would contradict what they knew at that time about lite beers. And they didn't say what brands of beer they had tested then, and they could have changed since then too. They (CSA) do publish a list of safe foods, but I don't know if these beers are listed in there, probably not.

http://www.foodsafety.gov/~dms/glutran.html

Consumer Perspective on a Gluten-Free Food Labeling Standard

Mary Schluckebier from the Celiac Sprue Association said:

Quote:

"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."

End quote

So, it seems there are some low levels of gluten in some of the lite beers, but that still doesn't mean they are safe for celiacs. gluten-free beer seems like it would be a safer choice.

Josh, thanks for bringing up an interesting topic! Unfortunately, I have found that I can't drink any beer now, as the yeast in it affects me, even gluten-free beer. Sniff, sniff... :lol:

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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.

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I think that Josh simply likes to drink barley-based "light" beer and doesn't really believe what he's saying. He points out that the fact of distilled vinegar being harmless to celiacs was at one time unknown; but we know it's since been studied by GIG and others and found to be safe for us, so we know we may consume it. But we can't say the same about barley malt in the "light" beer which Josh drinks, hoping it will also be found safe, though he says he doesn't mean to encourage any of us to follow suit. Former USDA research scientist Donald Kasarda made these remarks, to which a resourceful Forum member gave me the hyperlink:

"We know from work described in the scientific literature that relatively small polypeptide chains can still retain activity in celiac disease and we know something about a few sequences that seem to be harmful. But we probably dont [sic] know all the sequences that are harmful and we havent [sic] put our fingers on the common theme that gives rise to the activity in celiac disease. So the question arises as to whether or not the remaining sequences in malted barley are harmful."

( http://www.celiac.com/articles/187/1/Celia...ture/Page1.html )

Kasarda then offers three possible scenarios wherein barley malt, under varying conditions, may or may not be harmful to the celiac. He doesn't rule out the possibility that it could.

Well, I don't think there's truly a lack of civility on the part of those who've questioned Josh's judgment on this particular matter, or any need to apologize to him for doing so.

Now, what kind of responses to this did you really expect to those of us in this Gluten Free Forum, Josh? Condonement of your penchant for drinking "light" barley beer? I don't think so, dude. For the sake of your good health, man, check out New Grist or Red Bridge. These beer brands do cost a lot more than Bud Light; but you may recoup this investment in your good health with the cost in future medical bills you might incur, not to mention the pain and agony of complications--which I, confidently speaking for everyone else, sincerely wish on no one! :(

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There is so much variation from human to human it is hard to generalize.

I'm not sure what "... I definitely have Celiac and I always tested negative..." means considering that celiac overlaps other diseases/conidtions in symptoms, etc. A true wheat allergy could symtomatically be exactly like classic celiac symtoms, test negative on all standard celiac tests and still allow someone to consume gluten in the form of barley or rye.

Just to be clear, I really don't care how someone chooses to describe their "condition". I am concerned that someone might try to extrapolate one person's experience into a general statement about celiac and beer.

It means I get the rash (among a host of other issues) when I get glutened. I thought that was pretty definitive, being that Dermatitis Herpetiformis is always a positive diagnosis for Celiac. And yes, my blood test and biopsies were all negative. Honestly, the only medical indication of Celiac I had was an abysmally low cholesterol level. I basically told the doctors to bite me and tried it anyway, and Oh look! I'm all better.

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.

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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.

I do hope that I'm not rabidly protective (foaming, eye-rolling, etcetra) :rolleyes: , but it's true, newbies have such conflicting information to root through, not to mention countless docs (even specialists) who remain alarmingly ignorant of the properties of this illness. Because of this, there is certainly a palpable sensitivity toward newbies within this community. This may make some members more, let's say, passionate, about setting records straight, about encouraging the best, safest behavior.....I think that this is a whole lot better than being too much the other way - - letting all claims and opinions appear with no concern for the newly-diagnosed, overwhelmed, desparate newbie ready to grasp at anything.

I hope newbies stay here and become as fascinated by this oft-mysterious illness as I have become! :)

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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.

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JNBunnie1 - Sorry. I was reading to quickly and missed your meaning. Still, has there been a medical test to determine that your rash is Dermatitis Herpetiformis versus a rash from the number of other things that cause a rash. Not that it matters in the specific case but I was trying to make the more general point that self-diagnosed celiacs are not always a good data point for what celiacs can and cannot have.

On the major topic of this thread, I find it entirely believable that someone with a class celiac diagnosis could consume one or more of the "forbidden" grains and not have any reaction - noticable or otherwise. There is still a lot not known about this disease. An exception like that would still not invalidate the general rule against barley and rye.

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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

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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....

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    • It only takes a minute to make a difference. Celiac disease has been overshadowed by the gluten-free diet fad. Getting diagnosed and staying healthy is no piece of cake – those of us who have celiac disease struggle to stay healthy. We need better. We need to be understood. We need a cure. View the full article
    • If you are one of the approximately 2-3 million Americans with celiac disease, ZyGluten™ may be taken before you eat out at a restaurant or a friend\'s house, as it may help break down any gluten cross-contamination that you might encounter. View the full article
    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
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      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
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      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
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