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About Jen1104

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  1. Thanks C-Lady. I'd like to have my mom push for full panel but pretty sure she won't. She's not too keen on going gluten free anyway after seeing how careful and strict I have to be. (She likes her restaurants!) I've told her countless times that she may end up a lot worse--like me--but she doesn't get it at this point in time. ? I was tested for Hashimoto's recently. I need to call to see if they have my results. (TSH and T3/T4 were normal) Have lost half my hair in last year. So, wanted to rule Hashi's in or out. Hair loss is getting really embarrassing.
  2. A little background: I am not a diagnosed celiac even though some of my villi were flattened during endoscope (even though I had been gluten free for a few months before test--yep, did things a** backwards), but the 5 biopsies taken were negative. Which didn't really surprise me. I also have almost EVERY symptom of celiac I've ever seen listed (for 25 years) and after taking gluten out of my diet, I have a horrible reaction if I get a crumb (exhaustion, worse neuropathy, D, throbbing stomach, nausea, irritability, anger, etc, etc.) My 67 yr old mom has had similar symptoms for about 5 years but not to the extreme as mine. She has unexplained neuropathy in legs and feet (she's not diabetic), tired a lot, gets severe anxiety and brain fog sometimes so bad she feels like she is losing her mind. (Her eyes look weird, almost crossed a bit, and she gets confused). She also gets very irritable which is not like her at all. I asked her to get the full celiac panel done and she finally went to her dr. They refused to do full panel and just did the screener, Ttg IGA. I thought I had read online that it wasn't as accurate as other celiac tests, but what I found online today is that it is 98% accurate at detecting antibodies. They didn't, however, do test for total IGA, to see if she is deficient. Has anyone heard how accurate just the screener is? Should she maybe see a GI dr and push for full panel? Her regular dr was even the one who suggested gluten could be the cause of her neuropathy, but then didn't do full panel. Makes no sense. Arrrggggg! BTW, one of my brothers has unexplained neuropathy and mental fog and another brother has anxiety issues and heart problems. Sorry so long...Just wanted to get your thoughts on how accurate the screener is! Thanks, Jen **Forgot to add that my mom's screener test did turn out negative!
  3. Yep, good idea about thermos. I plan on definitely doing that!
  4. Today, I told my manager that I have a wheat allergy instead of having to explain celiac to her when she asked why I was cleaning off the desk. She half way scoffed/laughed when I told her this, soooo I get the opinion she probably doesn't care too much about my situation, lol. I'm just gonna keep cleaning the space well, not use the microwave anymore and maybe pray a bit that I don't get sick. That's very true about the roaches and rodents though, Ick!
  5. Nope Squirmingitch, not a diagnosed celiac unfortunately. I was already on Gluten-Free diet for 6 months when I had an endoscopy/colonoscopy (didn't know I had to keep eating gluten when I started diet on my own). I had some flattened villi that the dr saw with endoscope even after 6 mo, but the biopsies were normal. Recently, after a year on diet, I took the ttg iga blood test (just for the heck of it) and it was a 6. Six and up was positive. So...I think I'm celiac but I'll probably never know for sure. It seems I have almost every symptom of celiac, which has been going on for 25 years. Do you know if NCGS is covered under disability act?
  6. Hey Ennis, Sorry you've had such crappy coworkers, but glad you got away from it! People can be cruel sometimes. I'm not sure if my new job is going to work out. If I would've known people ate at their desks and that we shared those desks, I dont think I would've taken the job. I feel I'm verrrry sensitive to gluten. Yesterday, there were huge amounts of crumbs at my desk--all over--who doesn't bother even attempting to clean that up? Pigs! Nevermind that I may get extremely sick! I think I'll definitely take lunch that doesn't have to be heated up in microwave or maybe take something hot in a thermos. Or just something to snack on like you suggested. ?
  7. Thanks! Ennis- I don't know if I could use a gas station microwave, you're braver than i am! But maybe it's not much different than sharing one at work. Maybe it was the buttons or handle on microwave that got me. I didn't think of that. I'll have to be even more careful. Ugh Squirmingitch- Thanks for reply. Yes, I did use paper towels from work. Didn't think about cc from that! Appreciate the heads up. Co-workers probably already think I'm weird for using wet wipes to clean desks off, but...really don't care. They don't know about my gluten issues as I've only been there a few weeks so they just think I'm a germ-phobe (which I am a bit ?)
  8. Hi all, Just started a new job recently. One of my coworkers put food in the microwave for about 10 minutes (didn't see what it was at the time). Then, I proceeded to warm up my food. Mine was in a tupperware plate with paper towel on bottom and on top and with the lid placed loosely on top. About an hour after I ate, I felt a bit dizzy, heart racing, headache behind the eyes. But.. it didn't last long--an hour or two. Now for two days since then I've been angry, irritated, agitated and still have some of the headache. After I had these symptoms while at work, I asked what my coworker had for lunch and she said she cooked spaghetti for 10 min in microwave. It sure seems to me that I got glutened? But how?? I'm thinking from the steam of cooking spaghetti?? Anybody have any ideas or scientific theories on this? Also, we don't get to take lunches at this lovely new job, so everyone eats at their desks and we sometimes share desks, depending on the shift. And, i do find crumbs and just use wet wipes to clean desk. Do you think this is sufficient to keep safe? Thanks for reading and any thoughts!
  9. Jen1104

    Glutened by peanut M&Ms ?

    I eat peanut butter every day so definitely don't have an issue with peanuts, but good idea. I'm thinking it was the fish food too as I feel like I'm very sensitive! I must have ingested it somehow or inhaled it (as it had sort of a powdery dustiness to it). I am feeling better tonight after 3 days of hell. Thanks for your replies.
  10. Hi, Three days ago, I ate half a bag of peanut M&Ms. I've been gluten free for about a year and occasionally eat regular M&Ms, but not the peanut ones. (I have no issues eating the regular ones) Since then, I'm extremely tired, worse neuropathy, shaky, pain behind eyes, nauseous, vomited today, etc. Not good! The m&ms are about the only thing I could tie it to. I'm very careful with my diet. I looked online and it said they should be Gluten-Free unless it's just from being CC'd. Wow, as I'm writing this I'm having an epiphany! I took my young niece and nephew to the zoo the day before all my symptoms started and we fed the fish (several times) that pellet food that you get out of the little gumball-like machines. Wonder if that has wheat??! I'm pretty sure I washed my hands afterward but the kids may not have. Could this be it??? I'm hoping it's not the m&ms! LOL
  11. Thanks for your thoughts guys! Ennis- Yep, I've had some of my vitamin levels checked: magnesium, calcium, iron, B6 and B12. Only thing low was B12 (180, with range being 200-800) and I've been taking sublingual B12 for 6 mo. Last testing showed it was 780, but no improvement in my symptoms really. Thanks for the link on the elimination diet. I've done one for 3 weeks before but no positive results. Maybe you have to do it longer. It's difficult though. I've been grain, dairy, and mostly egg and tomato free (they seem to bother me) for a year now. I'm running out of food, lol! A few months ago, I decided I wasn't going to eat for a couple days, since I just feel this is all related to food. I definitely noticed more energy than I've had for years! Crazy! Cant keep that up though Cyclinglady- Glad to hear your insides are healed. That's interesting that other autoimmune disease could affect your antibodies, haven't heard that! I'm afraid that if my nerve and muscle pain are from celiac that I've had it undiagnosed too long and it may not get better. Glad to hear you're close to 100%! I've forgotten what its like to feel good. Time will tell....
  12. Hey everybody, This may be a dumb question but I'm gonna ask it anyway. A little background: I believe I may have celiac as I've had all kinds of weird and painful symptoms for many years. I have been gluten free for a year (very strict, follow paleo diet--no grains or dairy) and I rarely eat any of the processed gluten free foods. A little background: I had an endoscopy along with a colonoscopy because of stomach issues 6 months ago. When I started the gluten-free diet 6 mo BEFORE these procedures, I knew nothing about celiac and didn't realize that you had to be eating gluten for tests to be accurate. After the endoscopy the dr said he could see some flattened villi but the 5 biopsies showed nothing wrong. Given my very bad reaction to even crumbs of gluten and the flattened villi, I think there's a decent chance I have celiac. My question is: Is there any possibility that the celiac blood tests could still show elevated antibodies after a year gluten-free?? To where I could actually have a diagnosis and know I'm on the right track with my health? I've heard of people saying it took several months for antibodies to be in normal range, so I'm thinking if my antibodies started out very high, maybe after a year they'd still be a bit high. If my symptoms eating gluten weren't so horrible, I would do a gluten challenge. But I know I wouldn't last a day. My stomach issues are 80% better since going gluten-free. But I also have severe fatigue, muscle and nerve pain which affects my life very negatively. I have been tested years ago for MS, RA, lupus, lyme---all negative. Just feeling very frustrated tonight and after 25 flippin years of being sick, I just need some answers. Thank you for reading all the way through, and replying
  13. Hey Ennis, Looks like a good lotion being gluten-free and more natural. Yeah, who likes the ones that turn you ghostly white?! Not a good look for anybody. I wonder if there are any safe OTC lotions that you can buy at Walmart, etc? It'd be nice to smell before buying as my nose is sooo sensitive!
  14. Thanks for all the suggestions. I just found Sun Bum and like it for body but it's a bit of a strong fragrance for the face! I'll look into Cal Baby and Shiseido. Any other favorites, please share. I put spf 50 on today and burned a bit, think I need something higher! Not sure what happened to the tan I used to be able to get. Seems I'm overly sensitive to the sun!
  15. Thanks Ennis. Haven't heard of that brand but will check it out!