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Still Drinking Regular Beer - No Problems


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103 replies to this topic

#31 neesee

 
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Posted 07 August 2008 - 09:12 AM

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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#32 WW340

 
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Posted 07 August 2008 - 09:45 AM

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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Positive Bloodwork January 2007
Positive Biopsy Feb. 2007
Gluten Free since January 2007

HLA-DQB1 Molecular analysis, Allele 1 0201
HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,9)

#33 jerseyangel

 
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Posted 07 August 2008 - 10:27 AM

http://www.celiac.co...ents/Page1.html

http://www.bmj.com/c...l/313/7068/1300

http://content.nejm....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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#34 phakephur

 
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Posted 07 August 2008 - 11:30 AM

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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#35 elye

 
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Posted 07 August 2008 - 12:13 PM

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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11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

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#36 bakingbarb

 
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Posted 07 August 2008 - 01:51 PM

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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#37 gfp

 
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Posted 07 August 2008 - 02:29 PM

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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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#38 pjmaxx

 
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Posted 07 August 2008 - 04:12 PM

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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#39 happygirl

 
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Posted 07 August 2008 - 04:19 PM

Josh, some do like civil, educated conversations.

Stick around. :)
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#40 rumbles

 
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Posted 07 August 2008 - 04:28 PM

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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#41 WW340

 
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Posted 07 August 2008 - 06:56 PM

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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Positive Bloodwork January 2007
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HLA-DQB1 Molecular analysis, Allele 1 0201
HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,9)

#42 GFinDC

 
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Posted 07 August 2008 - 07:52 PM

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.foodsafet...ms/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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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#43 gfp

 
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Posted 07 August 2008 - 11:45 PM

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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#44 pjmaxx

 
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Posted 08 August 2008 - 01:24 AM

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.co...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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#45 JNBunnie1

 
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Posted 08 August 2008 - 03:34 AM

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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