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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

A Box Of Poison In The Grocery Store!
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12 posts in this topic

I've just been to the grocery store, and for the first time really spent some time reading labels and browsing the shelves. I must say that I was pleasantly surprised to see what I can buy in my regular store (Giant, in northern Virginia) -- rice pasta, and gluten-free baking mixes, gluten-free granola, and bars, etc. But! In the regular baking section there was a BOX of "wheat gluten"! lol... and oy! Now I'm not a baker or a cook (although I suspect I'll be doing more of it now) so I have NO idea why one would want a box of gluten. But my first thought when I saw it was "ack, there's a box of poison in the baking section!" lol... :ph34r:

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My first gluten free Christmas was only three months after my diagnosis. My best friend asked me what I wanted for a gift and I told her some of the Bob's Red Mill gluten free baking mixes. Christmas night rolls around and she presents me with a shoe box full of goodies...brownie mix, corn bread mix....and a bag of high gluten flour..doh..I guess it's used in baking...and for some reason the grocery store she got the stuff at had the high gluten flour in the gluten free aisle....

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I believe that it can be used and added to bread to increase the gluten content of the dough/bread. Ugg, yep poison in a box for us. :blink:

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Hilarious ... it's good you had a pleasant experience otherwise though! I bought a box of gluten-free cookies today, and the guy behind the counter who rang them up asked me all kinds of questions - why was I was buying gluten-free cookies?, was it an allergy?, would I be intolerant my whole life? Awareness spreads, and gluten-free baking mixes appear!

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I believe that it can be used and added to bread to increase the gluten content of the dough/bread. Ugg, yep poison in a box for us. :blink:

Vital wheat gluten is very often added to whole wheat breads to make it hold together more.

I used to make the most beautiful loaf of honey wheat bread that required wheat gluten order to make it hold together and rise more.

Seitan is also poison in a tub for us too.

Get thee from me, Seitan!!!

:P

~Allison

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Yeah, we used to add extra gluten to bread too, back in the days before it became evil :ph34r:

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Lol Allison. (off now to Google "seitan").. :)

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Lol Allison. (off now to Google "seitan").. :)

Seitan is often used by vegetarians and vegans.

It's like tofu in a way.

It's often called the vegetarian's wheat meat:

http://www.vrg.org/recipes/vjseitan.htm

The thought of it makes my stomach feel off ... :unsure:

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Seitan is often used by vegetarians and vegans.

It's like tofu in a way.

It's often called the vegetarian's wheat meat:

http://www.vrg.org/r...es/vjseitan.htm

The thought of it makes my stomach feel off ... unsure.gif

Before going gluten- and soy-free, I always wondered why the Primal Strips that my best friend said were great for a protein pick-me-up and pretty filling always made me feel so ill. They're made from seitan and soy!

Do you remember those bright poison control stickers with the frowny face? When I saw vital wheat gluten for the first time on the grocery store shelf while looking for gluten-free baking goods, I felt like slapping those little stickers onto the packages.ph34r.gif

K

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I'm starting to feel a little queasy just re-reading this thread and thinking about an entire box of gluten. :blink: -- Yes, I remember those poison control stickers -- Mr. Yuk, lol... Perfect. :lol:

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Just like 'One man's trash is another man's treasure'. I have friends that are allergic to nuts and strawberries. I'm glad that I can eat those cause I love'em! I may get pretty sick eating gluten, but at least I don't have to worry about a deadly allergic reaction sending me to the hospital or something.

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I used to bake wonderful rye and 100% whole wheat breads with a couple teaspoons of vital gluten added to the dough. The gluten helps the texture of the dough so the bread gets light and fluffy. When I think back to that time, I remember how horribly tired and depressed I was. Poison in a box for sure! :blink:

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    • Hey Matt  thanks for your reply fellow Brit! I this is very interesting... I am very sensitive to cross contamination... e.g. A sieve wasn't washed properly when I lived at my mums so when I had drained my gluten-free pasta .. I hadn't even eaten the dish before I started to pass out and go dizzy and hot .. calling for my bf and mum ( they had a great team going when I would have an episode) it's horrendous!  The fatigue is something I imagine every coeliac suffers with! I have to nap a lot.  Ok so the booze I drink most of is -processo -amaretto -vodka, wine, cider (very rarely)  when I drink at home I'm fine!!!  I wonder if it's cross contamination from the bar or the level of alcohol?!  I also had a jäger bomb shot on Friday (looked it up and a lot of people say it's gluten-free)  it's a hard live but someone's got to do it!!  Thanks for the reply!  When you get poorly from gluten (and the other evil candidates) are you so bad you can't function and feel your body is about to snap?  Kind regards  steph 
    • Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.   The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try:  http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol and a doctor's answer: http://www.steadyhealth.com/medical-answers/abnormal-reactions-to-alcohol Cheers Sorry, best of luck! Matt  
    • Similarly, I've been vegetarian for 25+ years.  A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did.  I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.
    • LOL, that might put it into perspective if I explain it that way. 
    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
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