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Restaurants with Flour in the Air


Zozo16

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Zozo16 Rookie

I am constantly getting warned about restaurants that seem extremely knowledgeable about gluten free and have a great menu, but can't guarantee it because they have flour in the air. For example, some mexican places make their own tortillas. Do you still eat at places that warn about flour? I think the only other option would be to only eat at places with a completely gluten free kitchen, which is really hard to find. 

Also, when shopping for food at the grocery store. What products do you require to have the gluten free label to ensure no cross contamination during manufacturing and what products do you buy without the label that have no glutenous ingredients? Thanks!!


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cyclinglady Grand Master

Jane Anderson has written some good information about this topic.  (I am not affiliated with Jane.)  Here is just article of many:

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Scott Adams Grand Master

There isn't any scientific evidence that breathing in tiny amounts of gluten would be an issue for those with celiac disease. That said, there are definitely some super sensitive individuals who do avoid this, and especially those with DH. On a scale of 1 to 10, 10 is the highest, how sensitive are you?

Zozo16 Rookie

I am more worried about if the flour in the air will contaminate the food enough for it to affect me. I am not sure how sensitive I am. I just found out in May. I do not have a gallbladder as well, so it makes it difficult to determine what is causing the stomach upset. I accidentally ate about 8 pretzels that were not gluten-free and ended up bloating, getting flushed, hot flash, foggy brain, fatigue shortly after eating it..

cyclinglady Grand Master

Most of us take a year or longer to really feel well.  Why?  There's a huge learning curve to the diet.  Each one of us has different levels of damage and sensitivities to gluten.  Because of intestinal damage, we also can have many intolerances (leaky gut/zonulin/it's real).   It's hard to figure it out (especially when you feel like crap) and that's why healing takes so long even though science has proven that villi can heal fast.  

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I would strongly recommend NOT eating out for six months to a year.  Did I say that?  Yes!  It's hard enough to shop for yourself, let alone let someone else prepare food for you.  Every time you eat out, it's like playing Russian Roulette.  I avoided eating out for a year after my last glutening, but successfully, survived a three week trip to Europe this summer.  I researched like crazy before we left home.   We only went to restaurants recommended by other celiacs.  If we could not find one, I had my handy and attractive collaspible cooler with me.  We purchased food from various grocery stores and made a picnic.  It was worth the risk of eating out....who can resist a trip to Europe?  But at home, when I need to be at my best (working pays the bills), I do not eat out.

We do eat at a gluten free restaurant that is 100%.  But there were times that even those gluten-free things did not go down well (gluten-free bread often has Xanthan Gum as a binder and it makes me sick still!).  So, a sandwich out is great for hubby, but not me.  I do best being grain free.  Funny how we are all different.  

I don't have a gallbaldder either (I think celiac disease was the demise of mine personally, but no proof).  Luckily, I don't have any digestive issues as a result. 

Give yourself time.  I know it is hard to be patient, but that's the way it is.  I promise, it will get better!

So, do I go to a pie/coffee shop?  No.  That's too much flour or exposure for even a coffee with friends.  It could be just mental, but it took me 3 months to recover from my last glutening (I don't even know what glutened me....) and another three to regain lost weight.  I am very careful.  I will dine with my parents, but I just order a soda (treat) or a glass of wine (don't drink until your gut is healed is my advice).  

Hang in there!  

 

Zozo16 Rookie

Thank you everyone for taking the time to provide me with some good advice. I really appreciate it! 

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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