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Krickett

Newly Diagnosed & Frustrated With Conflicting Information

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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

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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

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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?


-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.

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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!


~Angie~

Gluten free since May 2004

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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 :)


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

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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


"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."

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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?

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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


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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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.


Mom. Wife. Mother. Lover of cupcakes and coffee. Misses sourdough bread.

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