Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Krickett

Newly Diagnosed & Frustrated With Conflicting Information

Rate this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
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

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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 :)

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
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?

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
  • Member Statistics

    • Total Members
      86,791
    • Most Online
      4,125

    Newest Member
    udayshankar
    Joined
  • Forum Statistics

    • Total Topics
      112,059
    • Total Posts
      956,643
  • Who's Online (See full list)

  • Forum Discussions

    Hi, Thanks for your answer! Unfortunately I have to follow the MAOI diet for as long as I'm taking the MAOI, so essentially nobody's going to be inviting me round to dinner from now on… This is a bit of a shock. I don't really have any clear-cut symptoms that I would've considered worth going to the GP about. I mean I'm always tired and I have a bit of IBS and so on but generally I put that down to the other things wrong with me and the medication I have to take for them (mostly the bi
    Thanks Posterboy, that was interesting information.  I believe that I had read something elsewhere about tetracycline, at least, being used instead of, or along with, Dapsone for severe or refractory cases of DH. Unfortunately, even if I had medical insurance (which I do not), and had a regular doctor who was even willing to recognize and accept my condition for what it is, I don't know what kind of luck I would have in persuading that hypothetical doctor to give me a particular and non-sta
Healthysquirrel,  Please have your doctor check your Vitamin D level!   Vitamin D deficiency is related to vertigo https://www.ncbi.nlm.nih.gov/pubmed/27386060 Vitamin D can help with high IgE https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5263170/ Low vitamin D and low ferritin are tied https://www.ncbi.nlm.nih.gov/pubmed/29385099 Dry eye problems including blepharitis can be helped with vitamin d and vitamin a https://www.ncbi.nlm.nih.gov/pmc/articles
  • Blog Entries

  • ×
    ×
    • Create New...