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.

  • 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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,407
    • Most Online (within 30 mins)
      7,748

    H2HPizzaWagon
    Newest Member
    H2HPizzaWagon
    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

    • 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!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.