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ElizabethN

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loco-ladi Contributor

For starters I am "newly diagnosed" (miss diagnosed for at least 6 years that I can tell so far but thats another topic...) and just learning to deal with my "new" diet.

I am a railroad engineer and have to cart all my own food with me when I go to work. I have a Conductor who goes with me and its common practice to bring something to share with the other crewmember. I have learned to get out my "food offering" early in the trip and mention its "gluten free" (last trip was chocolate chip cookies which I need more of as they were almost good, lol) that leads to the inevitable what kind of diet are you on which I reply about my "food allergy" in as great detail as they want. this relieves me of saying no thanks alot of the times as when they hear the basics they can normally determine I will not be eating their "offering". This actually paid off numerous times recently, but as I work with alot of the same people trip after trip some have actually made a effort to bring something I can eat! It has also lead to 2 recipes 1 of which I could use and one fellow engineer heard of my problem and as we are somewhat friends actually on a recent trip to a nearby large city stopped at a health food store and brought me home a bag of "goodies".

I bring bleach wipes with me as well and have gotten in the habit of wiping down everything I will be touching, I dont know if this will help but it makes me feel better.

A fellow employee recently retired and the trainmasters (supervisors of sorts) bought him a retirement cake which they offered me a piece of, my reply was, sure I'll take a piece as long as you promise to give me the day off for being sick, they decline the day off, I decline the piece of cake!

My husband does his best to eat foods I can't while at work or when I am gone and does his best not to mention when he went out for chinese food as that used to be my favorite.

Right now my biggest issue is buying the food! we do not have anything locally that will even special order things I can eat and the closest healthfood store is 60 miles away and has a total of 2 four foot shelves for me to chose from. I have started looking online for more choices and hopefully better prices! Any suggestions would be welcome.

Lynn


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    • trents
      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their level of sensitivity to minor amounts of gluten. That's the long and nuanced answer. The short answer is that it is a product derived from wheat and so you can be certain it will contain some residual amounts of gluten. No gluten removal process is 100% effective. So, to be absolutely certain, stay away from it. Have you tried chia seeds? Very high in fiber and quickly turns into a gel when added to water. Make sure you get seeds that are gluten free if you decide to try it.
    • Trish G
      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease?  Thanks!!!
    • kpf
      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease:  fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches neutropenia I never dreamed in a million years she would consider celiac disease. It was a shock to me. It’s definitely not what I went to her for. 
    • knitty kitty
      @Rejoicephd, I'm not a doctor, but I experienced severe thiamine deficiency.  Your symptoms seem really familiar.  Malabsorption is a real thing that happens with Celiac.  A multivitamin is not going to prevent nor correct nutritional deficiencies.    Doctors do not recognize nutritional deficiency symptoms.  Gastrointestinal Beriberi is not recognized often.  Caused by thiamine deficiency, high dose thiamine supplements or IV administration with other vitamins, minerals and glucose under doctor's care is needed.   Thiamine deficiency is found in anemia.  Thiamine deficiency in the kidneys can result in electrolyte imbalances and cloudy urine.  Thiamine deficiency can cause high blood sugar which can cause cloudy urine.  Dehydration can cause cloudy urine.   I'm linking some PubMed articles.  You see if your symptoms match.  Discuss the possibility of Gastrointestinal Beriberi with one of your specialists soon!  Just to rule it out.  I'm very concerned.   I'm linking some PubMed articles.  You see if your symptoms match.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/#ref3 From Section 3: "In conclusion, TD limited to the gastrointestinal system may be an overlooked and underdiagnosed cause of the increasingly common gastrointestinal disorders encountered in modern medical settings. Left unattended, it may progress to wet or dry beriberi, most often observed as Wernicke encephalopathy.". . And... Refeeding Syndrome https://www.ncbi.nlm.nih.gov/books/NBK564513/
    • trents
      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
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