Jump to content
  • 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:
    Support Our Content
    eNewsletter
    Donate

gluten-free beer- has anyone had problems?


vbforvendetta

Recommended Posts

vbforvendetta Rookie

Hi all,

I'm a month in to being gluten free and doing pretty well I think. We had friends round at the weekend so I prepared dinner including making gluten-free focaccia and cake for afters. We had bread rolls but mine were kept well away from the normal bread rolls. I had three beers over the course of the evening (between 5 and 12) that were all gluten-free. Didn't feel great going to bed and about 2am suffered from a bad stomach and really bad cramps, which is what I expected if I did accidently have gluten. It wasn't the food, definitely. The only doubt I have is the beer, which I have had occasionally since going gluten free, just not these brands. There's really nothing else I can pin it on. 

 I wondered if anyone else has a reaction to gluten-free beers? I had a Celia, Speckled Hen and a Peroni.

Thanks!


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
(edited)

Those look like gluten removed beers and are not really gluten free.  They are made with barley and wheat and supposedly the “special” brewing process reduces or elimates the gluten below 20 ppm.  But the celiac community says these beers are not gluten free enough to be safe for celiacs.  Consider selecting a distilled alcohol beverage, wine or a gluten free beer (not made from gluten) in the future.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I hope you feel better soon.  

 

Edited by cyclinglady
Ennis-TX Grand Master

Yeah gluten removed beers are not safe for celiacs. Try a non gluten based one or hard liquor not made from gluten grains. Pain is we can not even accurately test for gluten in these things due ot the fermentation process partially breaking down the gluten proteins. But our bodies still in many cases recognize the protein and it triggers our immune systems to attack.

 

vbforvendetta Rookie

Oh dear :( Thanks for the replies. I had read about this before but wasn't sure about the specifics. I've not seen anything in the UK labelled 'Gluten Removed' so I wonder if it's all labelled gluten-free and we have to check the ingredients (which I do tbh!)? One says 'contains gluten-free barley', must be similar to beer-free beer ? I'll have to do a bit of research. The Gluten Dude seems to know what he's talking about, I think I'll delve into his pages later and get schooled! 

Initially I was pleased about the range of beers as I'm an ale-lover and thought I was going to have to make do with cider. Hopefully I can find some that are available somewhere close. 

Thanks once again for the replies from across the pond, it's much appreciated. Have to say one of the upsides to all this is some fantastic communities that are all happy to help. ?

  • 2 weeks later...
LilyR Rising Star

Has anyone had the gluten-free beers, and do they taste similar to beer considering it's made form different ingredients? Anyone have any brands to recommend that they think truly have a good beer flavor? Also, I saw someone mention once that Corona was gluten-free. Is that true?

Ennis-TX Grand Master
1 hour ago, LilyR said:

Has anyone had the gluten-free beers, and do they taste similar to beer considering it's made form different ingredients? Anyone have any brands to recommend that they think truly have a good beer flavor? Also, I saw someone mention once that Corona was gluten-free. Is that true?

Corona is not safe....dear god I do not know how many times that one has come up. DO NOT use beers made from gluten grains, there is no way to effectively test them with the standard testing methods due to the way they are processed.

Look for non gluten grain containing alternatives or ciders like Austin Ciders.

kareng Grand Master
2 hours ago, LilyR said:

Has anyone had the gluten-free beers, and do they taste similar to beer considering it's made form different ingredients? Anyone have any brands to recommend that they think truly have a good beer flavor? Also, I saw someone mention once that Corona was gluten-free. Is that true?

Beer made with barley is not considered gluten-free.  gluten-free beer are made with different grains.  The ones where the main ingredient is sorghum will have a sweet taste. It will depend where you live what gluten-free beers are available.  


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



Celiac.com Sponsor (A8-M):



LilyR Rising Star

Thank you both for your help.  That's too bad about the Corona, but better safe than sorry.  I am not up to drinking a beer yet, but hope to someday.  I don't drink often, but on a hot summer day or on a holiday or something, it's nice to be able to have something.  Our neighbor makes an amazing oatmeal stout, I will miss that.  

Sort of off the beer topic, but does anyone know what kind of mint goes in a mojito?  I am growing some mint, but it actually smells like a lemon mint or something.  Weird.  But I always wonder in things like a mojito or even a mint julep if they use peppermint or spearmint.  It tends to just always say mint, and most mint plants I find at the stores are spearmint.  But once in a while I find peppermint.   I am not even sure if I can have the other ingredients in a mint julep. I think they use bourbon.  I seem to be seeing things were Bacardi rum is okay, and most wines (I contaced Barefoot wines and theirs are gluten-free), and I think I even heard brandies are gluten-free, although I was wondering if that also including the flavored ones, like black raspberry brandy or apricot brandy. So much to still learn. 

  • 3 weeks later...
MyaJones Newbie

Yes!! There are several great beers, but my favorite, by far is Glutenberg. Three Sisters would be second, but the alcohol content is very high which is great if you want to get drunk. The Glutenberg IPA and new APA is a perfect choice for me. They also make  Blonde, Pale Ale and Amber Ale. The downside is it sells out fast and it’s not easy to find. I have to special order it from Whole Foods in NYC. 

  • 4 weeks later...
mbrookes Community Regular

LilyR, thank goodness bourbon is gluten free. Feel free to have a mint julep, Manhattan, or a plain old bourbon and water (my favorite, with a squeeze of lemon). The mint used in drinks is usually spearmint or peppermint. You may have one of the hybrid mints like lemon balm, lime mint or even chocolate mint.

Before diagnosis I was a dedicated beer drinker. In fact, that's about all I drank. I have not found a gluten free beer that I think is really good, except a couple that are way too expensive.

LilyR Rising Star
On 8/12/2018 at 5:32 PM, mbrookes said:

LilyR, thank goodness bourbon is gluten free. Feel free to have a mint julep, Manhattan, or a plain old bourbon and water (my favorite, with a squeeze of lemon). The mint used in drinks is usually spearmint or peppermint. You may have one of the hybrid mints like lemon balm, lime mint or even chocolate mint.

Before diagnosis I was a dedicated beer drinker. In fact, that's about all I drank. I have not found a gluten free beer that I think is really good, except a couple that are way too expensive.

Thanks for the suggestions. I haven'thad bourbon in years.  So for mint just use whatever your tastebuds prefer?  I used to always wonder if one mint was the typical one used, like if perhaps it's flavor went well with the flavor of the alcohol.  Good to know it's versatile.  I had dried chocolate mint once that was tasty.  Too bad about the beer.  It's been such a hot summer, today I was really in the mood for an icy cold beer.  I normally drink a lot of water, but sometimes in the summer it's nice to have something else.  These gluten and corn issues makes it hard. I haven't even had any alcohol just because I have not been feeling well.  But hopefully I'll feel better at some point and can enjoy a nice drink here or there again. 

Cheers!

sc'Que? Community Regular

Part of the misunderstanding with Corona is that people will say that it's "made with corn". Yes, WITH CORN... as in barley and corn. 

Now onto my main concern...  

*****

"Gluten-removed" beers use a process that is often termed "enzymatic fining". It's a modern fining agent whose side-effect is that it "gobbles" gluten during the initial stages of production.  This gives the yeast more direct access to the sugars in the grain... and therefore produce a more efficient brewing process.  I've also read of brewers using it in the final stages just before bottling to further clarify and reduce any remaining gluten.  I am a bartender, not a brewer. So I only know what I read. 

[For more info on enzymatic clarification, read here: Open Original Shared Link]

In the UK they are allowed to call the final product gluten-free provided the final product has been tested to below the correct parts-per-million.  In the U.S., they are not permitted to term an item gluten-free if any of the ingredients contain gluten.  (This difference in nomenclature is part of what is causing confusion in global chat.)  

Companies who make Gluten-Reduced (GR'd, for the sake of this post) beer are typically of the mindset that a beer brewed like beer will taste better than a beer brewed with adjuncts--the term used in the beer industry for alternative grains and fruit extracts. Most of the time, they are correct. But those companies often do not want to spend the time and money to have each batch tested to comply with strict "gluten-free" guidelines. And because they're not permitted to call it gluten-free anyway, many choose an un-regulated term to help those who are trying to reduce their gluten intake--which is great for them!  However, for folks like you and me, this muddies the water in terms of how people understand what Celiac disease is all about.  Additionally, many breweries whose beer *might* meet the criteria of parts-per-million to satisfy the Celiac community... don't want to have the "stigma" associated with a "gluten-free" (or similar) designation, as they feel it will harm their overall sales.  If you've tasted many of the gluten-free beers on the market, you can't blame them for having this concern!  (There is a major Philadelphia brewer whose flagship line of beer--except their wheat and saison and "Presidential series" are enzymatically fined. But the head brewer does not want to be associated with the watery, adjunct-laden messes like have been pumped out by brands like RedBridge and others. He does claim, however, that every time they DID test a batch of those beers for gluten, that they fell far below the U.S. standard of acceptable PPM--as in around 2 to 4 PPM.)

Still, if breweries were to "gobble" their beers via enzymatic fining to fewer ppm of gluten than 20 AND have their batches tested, they would be able to have more customers who can enjoy GOOD BEER that very well MAY be safe for most (if not all) Celiacs.  And if breweries who want to produce TRULY gluten-free beer would stop trying to only mimick mainstream beer styles (such as pilsners and lagers), they might also produce a better tasting product. ("Adjunct" grains tend to produce what are typically considered "off" sensations such as sour or bitter or funky... which are flavors that are highly prized in more boutique Belgian styles--styles that the gluten-free brewers have all but IGNORED.)   

Stone "Delicious IPA" is one example of GR'd beer that really hits the right mark in terms of body and flavor.  But brews like RedBridge, New Planet Lager, and even Dogfish Head "Tw'easonAle" are never quite satisfying in the same way that traditionally brewed beer is.  

So that is why the "Gluten-Reduced" category forges ahead. 

*****

Also, to answer the other user above... the type of mint used in the modern Julep is typically known as Kentucky Mint.  It has been bred to grow in high volume and with large, fragrant leaves... unlike the less hardy "fuzzy" mint my family grew when I was a kid. 

sc'Que? Community Regular

CyclingLady, by the very standards you are using:  here in the U.S., they are not permitted to use the term gluten-free when referring to Bourbon or Rye whiskey either.  Those of us who are educated on the subject know that gluten does not pass through the distillation. 

But it is still a point of legality that needs to be considered... ESPECIALLY when including discussion of Gluten-Reduced beer.  These are entirely different processes with entirely different parameters and results.  

Finally, I wanted to point out that there is a new brand of Japanese whisky called Ohishi that produces a "malted rice" whisky that is really delicious.  Essentially, if I'm correct... it's technically 80-pf, barrel-aged shochu.  I'm fairly certain that it's produced with a mashbill of 100% rice, but I've not done quite enough research to say for certain. 

kareng Grand Master
1 hour ago, sc'Que? said:

CyclingLady, by the very standards you are using:  here in the U.S., they are not permitted to use the term gluten-free when referring to Bourbon or Rye whiskey either.  Those of us who are educated on the subject know that gluten does not pass through the distillation. 

But it is still a point of legality that needs to be considered... ESPECIALLY when including discussion of Gluten-Reduced beer.  These are entirely different processes with entirely different parameters and results.  

Finally, I wanted to point out that there is a new brand of Japanese whisky called Ohishi that produces a "malted rice" whisky that is really delicious.  Essentially, if I'm correct... it's technically 80-pf, barrel-aged shochu.  I'm fairly certain that it's produced with a mashbill of 100% rice, but I've not done quite enough research to say for certain. 

Malting is a process in this case not an ingredient.  There are gluten-free breweries that “ malt” millet, rice, etc to make very good, (even to gluten beer snobs) beers.

 

cyclinglady Grand Master

Thanks, all.  I really appreciate the input that you all have made.  This is a confusing or controversial topic in the celiac community.

Each person must do the research and decide for themselves if drinking gluten-reduced or even gluten-free beer (20 ppm) is right for them. I personally waited years before drinking beer.  Like bread, I think you just need to forget the taste of the gluten-based product.  Now, I just drink certified gluten free beers like Groundbreaker (certified gluten-free), but only occasionally because I have Autoimmune Gastritis and alcohol does not always go down well.   (Groundbreaker gluten-free Brewery has a dedicated gluten-free restaurant too in case you happen to be in Portland, Oregon.  Imagine sampling beers and eating safely all in one place.  Fun!).  I am very conservative and cautious in my treatment of celiac disease.    My approach seems to be effective.  I have healed from celiac disease (am in remission).  A recent repeated endoscopy/biopsies revealed healed villi.  

I am sticking to a safe, conservative path which works for me.  Drinking beer, eating out, indulging in cupcakes, or whatever floats your boat, should be carefully evaluated for each individual.

fugluten Newbie

I’ve been a big fan of Lakefront Brewery New Grist and have never had a problem. Not the easiest to find. I’ve had Ommission before but this is another “gluten removed” beer and I’ve definitely had problems drinking that before. Red Bridge is safe too but doesn’t taste nearly as good as New Grist. 

I can’t believe those rumors of Corona being gluten-free still float around. I’ve heard some crazy rumors like bud light and michelob ultra being gluten free also which is just crazy to me. 

vbforvendetta Rookie

Glad to see a wealth of info by everyone, it's so nice to see people helping other people in similar situations. I'm kind of in limbo at the mo, my biopsy came back negative but I'd gone gluten-free two days after it and I think I'm doing better because of it so I'm thinking it's sensitivity. Had a consultancy last week and they took alot of notes and listened to what I had to say, after getting the negative I didn't want to just start straight into a normal diet so I experimented with wheat, barley and rye on different occasions and also tried things to see if it was just wheat or yeast and it must be gluten as each time about 36 hours later I wasn't well. They want some follow-up blood tests which I went and had my blood taken yesterday so will wait and see what happens. Was worried I'd be none the wiser after the consultancy but I was happy with how it went. Just a bit bummed as I'm still unsure what it is but hopefully eventually I'll know.

I've been to Ask Italia recently, they have a great gluten-free menu, I had a Peroni (g-removed) and was fine after. I assume my sensitivity (if that's what it is) is not super sensitive. I've had others too so I think I can get away with them. Not sure how easy it is to track down the totally gluten-free beers in the UK? Not seen any yet.

Anyway, that's my story so far, thanks once again for all the info for me and others who've replied to this thread. I wish you all the best.

sc'Que? Community Regular
On 8/21/2018 at 11:06 AM, fugluten said:

I can’t believe those rumors of Corona being gluten-free still float around. I’ve heard some crazy rumors like bud light and michelob ultra being gluten free also which is just crazy to me. 

I think that's more of a jab at how little actual malt these guys actually use when they make beer--which is why it tastes like fizzy-water. 

sc'Que? Community Regular
On 8/21/2018 at 6:17 AM, kareng said:

Malting is a process in this case not an ingredient.  There are gluten-free breweries that “ malt” millet, rice, etc to make very good, (even to gluten beer snobs) beers.

 

KarenG, thanks for clarifying this point for everyone.

 

And for those who aren't aware:  Malting is the process of sprouting a grain (typically barley, but now used when discussing the process with any grain). This produces ferment-able sugars. The sprouted grain is then, typically, kilned to dry... roasting it in the process.  This is then followed by the brewing process of adding it to water, along with yeast--and in the case of beer, hops and other flavoring agents. The level of roast will dictate, when making beer, how dark the beer will get and how "roasty" (versus "toasty") the flavor will be. 

After the "brewing" stage is complete, you essentially have proto-beer, which is ready for fining, carbonation and bottling.  In the case of distilling, this "proto-beer" is then added to the alembic and distilled.  The distillate is captured, often re-distilled multiple times... then either bottled (with or without dilution) or barrel-aged to impart color and flavor. 

And yet... after all that, I still don't really understand what the "malt" is in a chocolate-malt milkshake. 

sc'Que? Community Regular
On 8/21/2018 at 11:40 AM, vbforvendetta said:

...and it must be gluten as each time about 36 hours later I wasn't well.

That's about how it always works for me, as well. Typically by day 3 after exposure, I am feeling full-on symptoms of having been "gluten'd".  And it's typically not over until about day 6 or 7. 

Ennis-TX Grand Master
1 hour ago, sc'Que? said:

And yet... after all that, I still don't really understand what the "malt" is in a chocolate-malt milkshake.

They used to use a malt syrup from barley in it to give it a malted flavor, some high end places still do this.

 

 

1 hour ago, sc'Que? said:

That's about how it always works for me, as well. Typically by day 3 after exposure, I am feeling full-on symptoms of having been "gluten'd".  And it's typically not over until about day 6 or 7. 

Amusingly I get physical symptoms and nerve issues in  2-4 hours....but with my last exposure the anxiety, brain fog, depression, and suicidal thoughts hit 3 days later. ......the following diarrhea last up to 6 weeks....I was just getting over one bout to be hit again.

LilyR Rising Star
On 8/21/2018 at 4:37 AM, sc'Que? said:

Part of the misunderstanding with Corona is that people will say that it's "made with corn". Yes, WITH CORN... as in barley and corn. 

Now onto my main concern...  

*****

"Gluten-removed" beers use a process that is often termed "enzymatic fining". It's a modern fining agent whose side-effect is that it "gobbles" gluten during the initial stages of production.  This gives the yeast more direct access to the sugars in the grain... and therefore produce a more efficient brewing process.  I've also read of brewers using it in the final stages just before bottling to further clarify and reduce any remaining gluten.  I am a bartender, not a brewer. So I only know what I read. 

[For more info on enzymatic clarification, read here: Open Original Shared Link]

In the UK they are allowed to call the final product gluten-free provided the final product has been tested to below the correct parts-per-million.  In the U.S., they are not permitted to term an item gluten-free if any of the ingredients contain gluten.  (This difference in nomenclature is part of what is causing confusion in global chat.)  

Companies who make Gluten-Reduced (GR'd, for the sake of this post) beer are typically of the mindset that a beer brewed like beer will taste better than a beer brewed with adjuncts--the term used in the beer industry for alternative grains and fruit extracts. Most of the time, they are correct. But those companies often do not want to spend the time and money to have each batch tested to comply with strict "gluten-free" guidelines. And because they're not permitted to call it gluten-free anyway, many choose an un-regulated term to help those who are trying to reduce their gluten intake--which is great for them!  However, for folks like you and me, this muddies the water in terms of how people understand what Celiac disease is all about.  Additionally, many breweries whose beer *might* meet the criteria of parts-per-million to satisfy the Celiac community... don't want to have the "stigma" associated with a "gluten-free" (or similar) designation, as they feel it will harm their overall sales.  If you've tasted many of the gluten-free beers on the market, you can't blame them for having this concern!  (There is a major Philadelphia brewer whose flagship line of beer--except their wheat and saison and "Presidential series" are enzymatically fined. But the head brewer does not want to be associated with the watery, adjunct-laden messes like have been pumped out by brands like RedBridge and others. He does claim, however, that every time they DID test a batch of those beers for gluten, that they fell far below the U.S. standard of acceptable PPM--as in around 2 to 4 PPM.)

Still, if breweries were to "gobble" their beers via enzymatic fining to fewer ppm of gluten than 20 AND have their batches tested, they would be able to have more customers who can enjoy GOOD BEER that very well MAY be safe for most (if not all) Celiacs.  And if breweries who want to produce TRULY gluten-free beer would stop trying to only mimick mainstream beer styles (such as pilsners and lagers), they might also produce a better tasting product. ("Adjunct" grains tend to produce what are typically considered "off" sensations such as sour or bitter or funky... which are flavors that are highly prized in more boutique Belgian styles--styles that the gluten-free brewers have all but IGNORED.)   

Stone "Delicious IPA" is one example of GR'd beer that really hits the right mark in terms of body and flavor.  But brews like RedBridge, New Planet Lager, and even Dogfish Head "Tw'easonAle" are never quite satisfying in the same way that traditionally brewed beer is.  

So that is why the "Gluten-Reduced" category forges ahead. 

*****

Also, to answer the other user above... the type of mint used in the modern Julep is typically known as Kentucky Mint.  It has been bred to grow in high volume and with large, fragrant leaves... unlike the less hardy "fuzzy" mint my family grew when I was a kid. 

Thanks for all the info. I didn't know Corona was made from corn.  In addition to gluten, I can't have corn or soy either. 

That makes a lot of sense most regular beers don't want to associate with the gluten-free label, but it sure would be helpful.  Even if they worded it as "always has been naturally gluten-free" but I suppose even that would have an image associated with it. 

Is Kentucky mint more like spearmint or peppermint?  I wonder if I look online if I can find Kentucky mint seeds to plant next year.  I am more fond of peppermint than spearmint, but wondered if one was more popular because it made a good flavor combo in the drinks like mint julep or mojito. 

 

  • 5 weeks later...
sc'Que? Community Regular
On 8/27/2018 at 12:49 PM, LilyR said:

Is Kentucky mint more like spearmint or peppermint? 

I would say closer to spearmint... though less "floral". It's honestly--to my tastebuds--more like a combination of the two: the soft base-note of spearmint with the middle notes of peppermint but none of it's mentholating top-notes. Does that make sense? 

TheWeatherMan Rookie

I hope this information helps you.

If I have normal beer, well it takes a week or two to recover. If I have gluten free beer (peroni or san miguel) guess what, I still react but only suffer for 3-4 days. When I realised I could still get me fav beer Gluten free I celebrated but when I woke up the next morning after the first time of having it and feeling the way I did I was left scratching my head and felt so deflated. 

So after still scratching my head I thought what can I drink. So I went to drinking Strongbow dark fruit cider, I could drink 10 cans (if I wanted too) I wouldn't have any affect at all! It is really tasty and lovely on ice. 

So I wouldn't recommend these Gluten free beers at all. I've proven it by testing them all. San Miguel Gluten free was the worst. Cider is the way forward, at least for me. Give it a try :) 

Lewis 

vbforvendetta Rookie

Hi Lewis,

I tried that Strongbow not long ago and you're right, it is really nice! I've mostly been on the cider, there are some nice ones now, much more of a range than thereused to be. I've been having the gluten-free beers lately and seem to have been ok. I never have them in excess though, bit of a light-weight anyway! I'm obviously not as sensitive as others like yourself. Not sure what it was the initial time other than maybe as I'd just started going gluten free it was a reaction to other things. I think that's been the hardest thing, pinning down what exactly makes you ill when you've had various things and are not sure which one was the culprit. Or I guess sometimes it can be a few things that eaten separately would be fine but together cause a problem. Trial and error I suppose. Thanks as always to yourself and others, all help is much appreciated. All the best,

Mike.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    2. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    3. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,420
    • Most Online (within 30 mins)
      7,748

    maggie23
    Newest Member
    maggie23
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.