Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Newly Diagnosed & Frustrated With Conflicting Information


  • Please log in to reply

8 replies to this topic

#1 Krickett

 
Krickett

    New Community Member

  • Members
  • Pip
  • 2 posts
 

Posted 28 November 2007 - 03:28 PM

Hello all... I am a month into a gluten-free lifesyle... I feel like I am on a rollercoaster! I think I am doing well... then I read or hear something that conflicts with something I read elsewhere.. then I go crazy researching to see what is right.... then I get frustrated because - like all of us - I want to do well so I feel better.... then I get mad at myself for messing up......... case in point... I was a happy beer drinker before... obviously, that needed to change... never really got into mixed drinks or wine, so... decided (after reading several books,research net, etc..) that vodka and cranberry juice would be a ok substitute... thinking cranberry juice would be better than soda, etc. and good for you... ran into someone yesterday that also had celiac disease - she swears the only vodka that is safe is potatoe vodka... in her opinion, since vodka is from grain - it still messes with you.... I thought distilled liquors were ok.... Since I am only a month in... I don't know if I am messing up... still don't feel great - but do feel better... my main problem was anemia... figured that would take some time to pull up.... now I am second guessing myself AGAIN!!! Who do you trust? This stuff can really drive you crazy!! Do you get better at this stuff? Thanx for reading! Krickett
  • 0

Celiac.com Sponsor:

#2 tallfran

 
tallfran

    Community Member

  • Advanced Members
  • PipPipPip
  • 27 posts
 

Posted 28 November 2007 - 08:49 PM

Hello all... I am a month into a gluten-free lifesyle... I feel like I am on a rollercoaster! I think I am doing well... then I read or hear something that conflicts with something I read elsewhere.. then I go crazy researching to see what is right.... then I get frustrated because - like all of us - I want to do well so I feel better.... then I get mad at myself for messing up......... case in point... I was a happy beer drinker before... obviously, that needed to change... never really got into mixed drinks or wine, so... decided (after reading several books,research net, etc..) that vodka and cranberry juice would be a ok substitute... thinking cranberry juice would be better than soda, etc. and good for you... ran into someone yesterday that also had celiac disease - she swears the only vodka that is safe is potatoe vodka... in her opinion, since vodka is from grain - it still messes with you.... I thought distilled liquors were ok.... Since I am only a month in... I don't know if I am messing up... still don't feel great - but do feel better... my main problem was anemia... figured that would take some time to pull up.... now I am second guessing myself AGAIN!!! Who do you trust? This stuff can really drive you crazy!! Do you get better at this stuff? Thanx for reading! Krickett



Good for you for trying, Krickett! Most folks think (and I agree) that the distillation process removes any gluten that might be present. I think that vodka is fine; I might use caution with some of the whiskeys. I'm mostly a wine drinker myself! :P
  • 0

#3 Ridgewalker

 
Ridgewalker

    Adavanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,486 posts
 

Posted 28 November 2007 - 10:35 PM

As the previous poster said, the distillation is supposed to remove any gluten. HOWEVER, my mother reacts to grain-based vodka anyway! She has to stick to potato-based. It sounds like the woman you ran into is the same way.

It surprises me that most people here feel that grain-based alcohols are ok, but wheat starch (which is also supposedly made gluten-free during processing) is not.

And that may be the big thing with some of the controversial topics-- you have to find out if YOU react to it.

And of course, all of us post frequent threads on "Do you tolerate this..." and "Do you risk that..." That really is helpful in making decisions, I've found.

What other conflicting info have you found?
  • 0
-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007
--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.
--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.
--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

#4 Guhlia

 
Guhlia

    Ah yes.... Happy New Year to all, Red Bridge style... LOL

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,541 posts
 

Posted 29 November 2007 - 03:55 AM

If you love beer, try Red Bridge beer! It's made by Anhueser-Busch so it should be readily available in your grocery store/beer distributor. Its made from sorghum and gluten free. Its actually a relatively good beer and the price is the best of all gluten free beers. If you don't like that I recommend trying Bard's Tale beer. Its absolutely amazing, but its much more expensive than Red Bridge. Enjoy!
  • 0
~Angie~

Gluten free since May 2004

#5 jerseyangel

 
jerseyangel

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 20,939 posts
 

Posted 29 November 2007 - 04:19 AM

If you're a beer drinker, I second the Redbridge--it's very good and easy to find.

The bottom line on distilled liquor is that it is considered safe, but I've seen several people here who report that they can't tolerate it.

My opinion is that it's an individual thing--if you suspect it is bothering you, try substituting the potato variety. It's also a good idea to go through the rest of your diet and personal care products, and make sure that gluten isn't sneaking in that way.

Do you use a dedicated toaster, collander and wooden utensils and cutting board? Any scratched teflon pans? Be sure also, to check any suppliments and medications you take :)
  • 0
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

#6 VioletBlue

 
VioletBlue

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 517 posts
 

Posted 30 November 2007 - 05:26 PM

I am a fan of vodka martinis. I admit it. Love them. But I've given up drinking them, at least for now. Hard liquor seems to be a problem at this point. I don't know why. It's not a gluten reaction for me from grain alcohols so I'm not sure what the problem is, but I'm honoring my body's reaction to hard liquor and staying away from it for awhile. I've been gluten-free for 12 months now.

Sulfites in wine are apparently an issue with me too, so the only wine I can tolerate are a few brands of dry sparkling wine. I finally got a local store to order me a case of Redbridge from their Bud distributor. It's a good beer, not great, but good. I'm thrilled to have it no matter what though, because I was out of options. While I don't drink often, it is nice to have the option, after a hard day at work to sit down with a drink and relax.

So you really need to see what you can tolerate. Some people may simply react to alcohol period after they go gluten-free and some may not. Celiac Disease seems to have a pretty profound effect on peoples bodies, and no one knows all the variables yet on what changes it can bring about. I'm amazed every day by this journey and the changes Celiac has brought into my life.

Violet
  • 0
"My mother always told me, it's okay to play with a man's mind
as long as you put it back where you got it when you're done with it."

#7 Gemini

 
Gemini

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,152 posts
 

Posted 30 November 2007 - 09:10 PM

It surprises me that most people here feel that grain-based alcohols are ok, but wheat starch (which is also supposedly made gluten-free during processing) is not.



Distillation will remove gluten from vodka......the gluten molecule is too large to survive the process. What we have to beware of is if any flavorings, which may not be gluten free, are added back in after the distillation process.

I don't know the process by which wheat starch is supposedly made gluten free but if it isn't distillation or a similar process, it wouldn't be safe to eat. From what I have read, wheat starch still has a small level of gluten afterwards and these small amounts are accepted in other countries as safe, while US Celiacs tend to disagree with that. I don't eat the stuff or drink vodka but maybe this explains the difference?
  • 0

#8 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,765 posts
 

Posted 01 December 2007 - 03:42 AM

I have to vote with go with your body. I am another celiac who reacts to gluten grains, we do exist and not all places will tell you that gluten grain alcohols are okay so I can understand your confusion. For example this is what the celiac sprue association has to say about it (the bold is mine):

"Alcoholic Beverages
FOUNDATION STAGE:

Wine and brandies without preservatives and added dyes; potato vodka; most rums and tequila.


EXPANDING STAGE:

Distilled liquors known to be from wheat, barley or rye are categorized as “rendered gluten-free through processing.” If the product is from a gluten source, it does not conform to the diet of those who choose a zero tolerance level gluten-free diet. "

http://www.csaceliac...ten_choices.php


The truest test is though is to listen to your body. One grain vodka drink and I am 'gone' for the night with absolutely no memory of anything that occured followed by days of sickness. This was true long before I went gluten-free. After diagnosis I tried potato vodka and am able to have 2 or 3 drinks without even a trace of a hangover and without walking into walls for weeks afterwards. I also have DH and even a tiny amount of grain derived alcohol will have me in blisters by the next day, a for sure sign for me that gluten has gotten me. Trust your body first, it knows best.
  • 0
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)

#9 Savoir Faire

 
Savoir Faire

    New Community Member

  • Members
  • Pip
  • 5 posts
 

Posted 01 December 2007 - 07:43 PM

The same thing happened to me! Potato vodka (I also want to play it safe) is just as good and easy to find at a liquor store. In fact, the guy at the store was surprised I was buying it--- he said that was the stuff he enjoys drinking.

Keep on trying...it will get better.
  • 0
Mom. Wife. Mother. Lover of cupcakes and coffee. Misses sourdough bread.




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: