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

Newly Diagnosed & Frustrated With Conflicting Information


Krickett

Recommended Posts

Krickett Newbie

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


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



Celiac.com Sponsor (A8-M):



tallfran Apprentice
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

Ridgewalker Contributor

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?

Guhlia Rising Star

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!

jerseyangel Proficient

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 :)

VioletBlue Contributor

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

Gemini Experienced
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?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

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

Savoir Faire Newbie

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.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,021
    • Most Online (within 30 mins)
      7,748

    maltawildcat
    Newest Member
    maltawildcat
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
×
×
  • 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.