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Still Drinking Regular Beer - No Problems


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103 replies to this topic

#16 tom

 
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Posted 06 August 2008 - 06:39 PM

I know this shatters people's strict interpretation of the gluten free diet, but the bottom line is, light beers don't affect me.

Shatters? :unsure:
I think a more appropriate word is 'violates'.

There was a time, in the 90s, when I'd consume small amounts of gluten that didn't affect me symptomatically.
Biggest mistake I ever made. :(
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

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#17 Takala

 
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Posted 06 August 2008 - 09:34 PM

Here is a helpful FAQ link that mentions why drinking regular beer is a bad idea for gluten intolerant people. It might look familiar to you. :huh:
http://www.celiaccen.../celiac/faq.asp

"What is the treatment for Celiac Disease?

There are no drugs to treat Celiac Disease and there is no cure. But celiacs can lead normal, healthy lives by following a gluten free diet. This means avoiding all products derived from wheat, rye, and barley."

"Can a person with Celiac Disease drink wine?

Yes, wine is made from grapes. Conversely, beer is made from grains and cannot be consumed by a Celiac."
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#18 gfp

 
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Posted 06 August 2008 - 11:28 PM

This is laughable on many levels. Unfortunately, not everything is black and white. I've been confirmed celiac for three years. I know this shatters people's strict interpretation of the gluten free diet, but the bottom line is, light beers don't affect me. My follow-up endoscopy and blood tests have proven this. If I were to eat a sandwhich, I'm sure my antibody counts would jump up. The bottom line is this, beers like Bud Light contain such low levels of gluten, that many celiacs simply don't react to it.

You do realize there are varying degrees of the disease right? Look at the literature.

Josh, this is short because I have to leave for work ... so it might be a bit blunt.
There are many people with celiac disease who are simply in denial. I know, I was one ...
Like you I was diagnosed and was determined ... hey, I'll be one of those who can drink the odd beer or eat oats .. etc.etc.

The figures you have quoted (I'm not sure which test) but you need a full panel to be 'sure'...
My Sig translates as "man(kind) will willingly believe what he wishes to believe.

Now it's possible you don't react to horedin (barley protein) ... however there are also a lot of other explanations...

Regardless of biopsy there is a lot of damage you can do outside the intestines... neurological and thyroid being common.
You can trigger other auto immune responses.

to quote yourself

You do realize there are varying degrees of the disease right? Look at the literature.


There are many responses but there are also many celiacs who think they are doing a gluten-free diet but are not really.

The first hand literature (clinical studies) I have seen has never said that even very low amounts of gluten causes NO DAMAGE ... however these are often misread..particularly the part that say's "damage was no worse" ... because there are plently of companies would like to get away without being able to guarantee what is in their product.

In the end I find it hard to believe you were ever gluten-free in the true sense. (not a criticism but something for you to think about)
Many of us (probably most) actually started off this way... and things got better...
Because things got better we thought that was it.... then 6 months or a year later we start asking "Does anyone else ....."

If you read posts in that light you'll see for yourself. And ... Almost EVERYONE who is diagnosed who then gos that extra mile sees improvement... symptoms we didn't know we had disappear from joint pain to migranes to ..... (its a very long list)..

In that year of gluten light I developed peripheral neuropathy... 4 yrs later its still not right.... but its getting very slowly better...
For many these non GI symptoms are permanent or certainly going to affect their life for years to come...

I would ask you consider going 100% strictly gluten-free for 3 months... then try a beer...
All you have to lose is .. well a few beers!
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#19 elye

 
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Posted 07 August 2008 - 04:07 AM

I would ask you consider going 100% strictly gluten-free for 3 months... then try a beer...
All you have to lose is .. well a few beers!


This is a great suggestion! You may be surprised, Josh (in a good way) at how you feel at the end of those three months, and how you feel after you drink that first light beer once being completely gluten-free for that time. You could drink Redbridge in the interim, the gluten-free beer that DH says is quite passable...... :)
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Emily

diagnosed type one diabetic 1973
diagnosed celiac winter 2005
diagnosed hypothyroid spring 2006

But healthy and happy! Posted Image


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!

The great are great only because we are on our knees.
--Pierre Joseph Proudhon (1809-1865)

#20 gfp

 
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Posted 07 August 2008 - 04:29 AM

This is a great suggestion! You may be surprised, Josh (in a good way) at how you feel at the end of those three months, and how you feel after you drink that first light beer once being completely gluten-free for that time. You could drink Redbridge in the interim, the gluten-free beer that DH says is quite passable...... :)

Exactly, what I didn't have time to say earlier was how so many of us then react to that first glutening...
We might think we are not getting glutened but that is because we have no real reference...

I know of many of the people on here who started off the 'normal way' .. but the normal way is what the MD or GI tell you, they can't FEEL what you FEEL.... and I know that I personally (and lots of us here) actually discovered symptoms by their absence, not by their presence.

When going 100% gluten-free we found that symptoms we thought were 'getting older' or 'everyone has that'
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#21 MauriceReed

 
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Posted 07 August 2008 - 05:03 AM

I am pleased to say that over here in the U.K. a couple of breweries now produce gluten-free beers. The come in bottles only and can be purchased by mail order.

One of the breweries now does three different types of beer.

I'm not Coeliac myself but my wife is. I have tried a couple of these beers and they are quite good. So, there is hope for all. :)
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#22 ravenwoodglass

 
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Posted 07 August 2008 - 05:05 AM

I would ask you consider going 100% strictly gluten-free for 3 months... then try a beer...
All you have to lose is .. well a few beers!


I also am going to suggest this. One of the first things you may notice is that you do not get as good of a 'buzz' off of wine or gluten free alcohols. This is a good thing and will help you to realize that the gluten is affecting your neuro system more than you realize. Also bear in mind that gluten is a very addictive substance and you may find the switch over difficult, if you do then you know for sure that gluten beers are not for you. There is so much more to celiac than just the GI related stuff. Even small amounts can lead to some pretty bad autoimmune damage to the joints, brain, thyroid and just about every other organ.
If you do decide to continue for the time being with gluten grain beer please be sure to get regular liver panels done. If the autoimmune process should decide to attack your liver a lot of damage can be done fairly quicklly.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

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

#23 modiddly16

 
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Posted 07 August 2008 - 05:14 AM

I don't think Larry Mac was trying to be rude, just straightforward in his point that with celiac disease, it's all or nothing - - you cannot be a little pregnant, and you cannot be just a bit celiac. When you say, "a lot of people react differently to celiac disease", if you mean that people with the illness have varying degrees of reaction to gluten, this is quite true. However, the treatment remains the same regardless: no gluten in the diet.
"If you were diagnosed then I think it's best you don't drink beer" - - well, if you were diagnosed, from a medical perspective I know that it's mandatory that you don't drink beer....unless of course it is gluten-free. :)



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

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

 
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Posted 07 August 2008 - 06:29 AM

The thing that strikes me about this entire conversation is this: The mantra that we all hear on the different celiac boards is that the testing is not perfect. In the diagnosis phase, does negative bloodwork mean you don't have celiac? Nope. Does no villi damage found on a biopsy mean gluten isn't a problem? Nope. Why should things be any different when it comes to follow up testing? Gluten intake may fall below what can be detected on bloodwork, and villi damage can be patchy. It does not mean that damage is not ocurring, with or without symptoms. The effects of gluten are cumulative. A couple of beers today and incremental gluten exposures tomorrow add up to a whole lot over a lifetime.

They are your villi, and you can do what you want with them. I hope you remain healthy, but I don't think I would be willing to take the same chance.
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-Colleen
Dx 8/05 via bloodwork and biopsy (total villous atrophy)
13-year old son Dx 11/05 via bloodwork and biopsy
Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

#25 gfp

 
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Posted 07 August 2008 - 06:38 AM

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

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

I think what some of us are trying to say is that "noticeably react" really depends if you are gluten-free or not.
When posting here its good to remember people who have poor or more likely worse than poor advice from a GP or GI will be reading these posts thinking ... ooh I can drink beer...

Its only natural ... however it can be very harmful.
Most GP's and GI's have never actually been gluten-free.... for those with big symptoms they can tell... the worse case is for those who can't.

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

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

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

Josh may say he doesn't react .. but I believe its more likely he doesn't recognise the symptoms.
Perhaps Josh is anomalous, (heck we are all anomalous) but perhaps he doesn't react to Barley...
This still doesn't help those reading the post....

We do have a collective responsibility to at least provide the best advice we can and sometimes this means disagreeing with someone.... but not only for them but for newly diagnosed who come here wondering what the heck to do ...
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#26 lizard00

 
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Posted 07 August 2008 - 07:00 AM

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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Be yourself, everyone else is taken.
Oscar Wilde

Gluten free November 2007
IgA Deficient, Neg Bloodwork, Double DQ2 Positive
Dietary and Genetic Diagnosis June 2, 2008
Soy free Jan 09

#27 elye

 
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Posted 07 August 2008 - 07:24 AM

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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Emily

diagnosed type one diabetic 1973
diagnosed celiac winter 2005
diagnosed hypothyroid spring 2006

But healthy and happy! Posted Image


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!

The great are great only because we are on our knees.
--Pierre Joseph Proudhon (1809-1865)

#28 WW340

 
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Posted 07 August 2008 - 08:36 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.
  • 0
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)

#29 jerseyangel

 
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Posted 07 August 2008 - 08:53 AM

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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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#30 Mountaineer Josh

 
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Posted 07 August 2008 - 09:10 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.


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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