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Treen Bean

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Treen Bean Apprentice

I travel with a touring Broadway show for 8 months out of the year. Eating on the road is very difficult and monotonous for me. Last night, our company threw a Christmas party since we weren't able to go home for Christmas. I was so annoyed because I didn't think I would be able to eat anything. Boy was I wrong! Our props head was in charge of the catering and set up for the party. He took me grocery shopping with him to buy all gluten free crackers and cheese, chips and salsa, veggies and hummus, and fruit. Then, when he set everything up, he made sure all of the gluten filled foods were kept far away from my safe foods. He also made sure that only uncontaminated hands touched the gluten free foods. Then, he went one step further, before I arrived he made an announcement to everyone to be extra careful not to cross contaminate anything due to my food allergies. It was a wonderful party! I was able to eat just like everyone else without any fear of becoming sick! I love my cast and crew!


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Lisa Mentor

Sounds like you have wonderful people around you, people who are used to working together to achieve a common goal.

home-based-mom Contributor
I travel with a touring Broadway show for 8 months out of the year. Eating on the road is very difficult and monotonous for me. Last night, our company threw a Christmas party since we weren't able to go home for Christmas. I was so annoyed because I didn't think I would be able to eat anything. Boy was I wrong! Our props head was in charge of the catering and set up for the party. He took me grocery shopping with him to buy all gluten free crackers and cheese, chips and salsa, veggies and hummus, and fruit. Then, when he set everything up, he made sure all of the gluten filled foods were kept far away from my safe foods. He also made sure that only uncontaminated hands touched the gluten free foods. Then, he went one step further, before I arrived he made an announcement to everyone to be extra careful not to cross contaminate anything due to my food allergies. It was a wonderful party! I was able to eat just like everyone else without any fear of becoming sick! I love my cast and crew!

That's really cool! Doesn't it make you feel good when somebody goes out of their way to be nice? :)

YoloGx Rookie

Wow! that truly is wonderful! A good thing to counteract some of the down political news right now ....

Bea

jlinc Rookie

I always get so uncomfortable when people go out of their way to accomodate me, but it sure feels good, doesn't it?! :)

Treen Bean Apprentice

My cast and crew are amazing people! It's wonderful how they are always looking out for me. They are always telling me when they discover/see gluten free foods, etc.... I even get surprise gluten free gifts left on my bus seat (everything from gluten-free cheesecake to gluten-free pretzels)!

JNBunnie1 Community Regular
My cast and crew are amazing people! It's wonderful how they are always looking out for me. They are always telling me when they discover/see gluten free foods, etc.... I even get surprise gluten free gifts left on my bus seat (everything from gluten-free cheesecake to gluten-free pretzels)!

Wow! Those guys are awesome!


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kkkkaty Rookie

It is no small thing to have people around who are so supportive! I have been counting my blessings lately as I realize I have 3 close friends (couples) who cook wonderful meals for me- they will sometimes call several times while they are preparing to cook and ask me if I can eat this or that and what pans should they use etc. My other friends may not go to such lengths but at least they do not try to push food on me or get mad at me if I don't eat a meal. My husband and boys are also wonderful as well- my youngest now automatically reads labels on foods and will announce if I can eat it or not.

Still a little dicey going to Mom's but she tries hard and always has a basket of gluten free products awaiting every time I visit.

It's disheartening to read of how little support some are getting from family and friends. On the other hand it's great to see the support available here.

ang1e0251 Contributor

I'm so happy you are with people that are so caring since you live with them for most of your year. Family members could learn a lesson or two from your crew!

Jenny (AZ via TX) Enthusiast

What a wonderful, loving group of friends you have!

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • 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 
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