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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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    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
    • trents
      @Mari, did you read that second article that Scott linked? It is the most recently date one. "Researchers comparing rates of headaches, including migraines, among celiac patients and a healthy control group showed that celiac subjects experienced higher rates of headaches than control subjects, with the greatest rates of migraines found in celiac women.  Additionally, celiacs had higher rates of migraine than control subjects, especially in women. In fact, four out of five women with celiac disease suffered from migraines, and without aura nearly three-quarters of the time."
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      As far as I know and I have made severalonline searches, celiac disease disease has not been recognized as a cause of migraines or any eye problems. What I wrote must have been confusing.
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