Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Still Drinking Regular Beer - No Problems


Mountaineer Josh

Recommended Posts

lizard00 Enthusiast
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.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 103
  • Created
  • Last Reply
elye Community Regular
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...... :)

Link to comment
Share on other sites
WW340 Rookie

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.

Link to comment
Share on other sites
jerseyangel Proficient
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.

Link to comment
Share on other sites
Mountaineer Josh Apprentice
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.

Link to comment
Share on other sites
neesee Apprentice
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

Link to comment
Share on other sites
WW340 Rookie

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

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.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

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

Open Original Shared Link

Open Original Shared Link

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.

Link to comment
Share on other sites
phakephur Apprentice

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}}}}}

Link to comment
Share on other sites
elye Community Regular
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!

Link to comment
Share on other sites
bakingbarb Enthusiast

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.

Link to comment
Share on other sites
gfp Enthusiast
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.

Link to comment
Share on other sites
Paul Jackson Rookie

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! <_<

Link to comment
Share on other sites
happygirl Collaborator

Josh, some do like civil, educated conversations.

Stick around. :)

Link to comment
Share on other sites
rumbles Newbie

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.

Link to comment
Share on other sites
WW340 Rookie

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

Link to comment
Share on other sites
GFinDC Veteran

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.

Open Original Shared Link

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:

Link to comment
Share on other sites
gfp Enthusiast
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.

Link to comment
Share on other sites
Paul Jackson Rookie

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."

( https://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! :(

Link to comment
Share on other sites
JNBunnie1 Community Regular
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.

Link to comment
Share on other sites
elye Community Regular
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! :)

Link to comment
Share on other sites
gfp Enthusiast
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.

Link to comment
Share on other sites
Tim-n-VA Contributor

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.

Link to comment
Share on other sites
larry mac Enthusiast

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

Link to comment
Share on other sites
gfp Enthusiast
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....

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,502
    • Most Online (within 30 mins)
      7,748

    Nadaly100
    Newest Member
    Nadaly100
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
×
×
  • Create New...