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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
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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