celiacsojourness

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About celiacsojourness

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    celiacsojourness.com

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  • Gender
    Female
  • Interests
    Gluten free food on the go, travel, outdoor sports and adventures

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  1. I'm also really sensitive. I do eat Udi's now, though I didn't eat any packaged products for years after my diagnosis. I have, however, been glutened by other gluten free products. When was the last time you called the companies of foods you eat regularly? There was a peanut butter I used to eat that changed processing facilities. I was sick for over a month, went back to the doctor sure it was something other than celiac, and eventually called every single company that made processed foods I ate and found that the peanut butter was now on shared lines with gluten. Found a new source of peanut butter, and I felt totally fine.
  2. Wow you sound very similar to me in demographic and symptoms! Let me assure you that having celiac disease is nowhere near as terrible as the symptoms I experienced before going gluten free. I would joyfully give up gluten again for how well I feel now, even though I admit there have been some lifestyle sacrifices along the way. I also didn't have terrible stomach pain and some of the normal symptoms, or so I thought. Once I went gluten free I realized that my stomach had always hurt, I just never knew what it was like to NOT have your stomach hurt. Sounds sad, but I was truly overjoyed. My life has only changed for the better. I hope you solve your mystery. I had those itchy elbows and cold hives, and omg I am so sorry that you are experiencing those too. They are maddening!
  3. Immune and Autoimmune responses can be so strange. When I was diagnosed with celiac disease, eating small traces didn't bother me one bit and I had a grace period for getting the hang of the gluten free diet. 2-4 moths later? WHAM - cross contamination could knock me out. It actually got better over time, and a little cross contamination gives me mild symptoms now. Prolonged use of something with cross contamination, however? It grows slowly than hits me like a ton of bricks. Over time, your antibodies will decrease so your overall reaction should be less. Eating gluten encourages your body to continue producing antibodies, so the reaction will feel stronger over time if your diet isn't celiac-safe. Hang in there, and it's always good to check with your doctor just in case.
  4. Wow I really feel for you here. I used to work on ships doing research and I eventually quit and changed careers because no one was able (ahem, or willing) to try and accommodate me; I got many of the same "a little won't hurt" comments. While I quit because I was in the early stages of my recovery and very sensitive and nervous, I have learned a few tricks since then that may be able to help you: -Hard boiled eggs. Not the best if cooked in a gluten pot, but in odd situations where a kitchen had to accommodate me, they happily provided me with hard boiled eggs and yogurt -Dehydrate your own food. I made stew recipes with ground meat and then threw them in a dehydrator. Then I took the crust (it was crusted to the bottom) and put it in a blender. Voila, a powder! It rehydrates as a super tasty soup While those two options can't last for a 9 mo. deployment, they may help close the gap for the first few weeks when you're trying to work with the kitchen. Perhaps you can get the civilian doctor to write you a medical note (I used one once from my doc that had a prescription for "gluten free food" and a note about cross contamination and it helped). I truly wish you the best of luck.
  5. celiacsojourness

    Anger?

    It's been years since my celiac diagnoses and I still get the occasional surge of anger, though more for the fact that celiac is continuing to be misdiagnosed in others than for my own personal experience (I had to badger for a celiac test when they were trying to test for stomach cancer instead - I was terrified!). It helps me a lot to write posts on this forum to help others find their own diagnoses and offer help when I can. I still have trouble trusting doctors, however
  6. celiacsojourness

    21 and I feel 90

    When I was in the early stages of recovery after my celiac diagnosis (and by early, I mean 18-24 mos), a friend told me about a friend of hers who was really sick and was still not able to eat much without feeling terrible, until 5 years after going gluten free when she could eat almost anything. I clung to that for years, and around 4.5-5 years I felt great and was able to add a lot of foods to my diet. Hang in there. In the meantime, maybe keep a food log to see if other foods may be bugging you temporarily. Your symptoms sound similar to mine, and I know they can be awful <3
  7. celiacsojourness

    does sugar free chewing gum cause problems

    YES. I was never able to find a chewing gum that did not bug me, for whatever reason.
  8. celiacsojourness

    Meeting celiacs in Seattle

    Hi! I'm a celiac in Seattle. Nice to meet you. I do not know any other celiacs in Seattle. When I was first diagnosed, I emailed around to some celiac awareness groups to find out that there were none actively meeting at the time. I do suppose there are celiacs around, however, since the gluten free restaurant in Capitol Hill (Capitol Cider) knows a lot about celiac disease and answers questions as if celiacs are common. I know there are gluten free meetup groups (meetup.com) that meet there for brunch frequently - maybe check out the meetup groups?