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megsybeth

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Everything posted by megsybeth

  1. megsybeth

    ARCHIVED Chipotle!

    megsybeth posted a topic in Gluten-Free Restaurants

    I'm very new to my diagnosis and living gluten-free. I've been in a couple upscale (expensive!) health food restaurants that catered to gluten free and where the waitiers were knowledgable but my first takeout experience at Chipotle was so great. The manager assured me only the flour tortillas had gluten and then asked if I'd like the person helping me to...
  2. megsybeth
    Isn't metal tasting sometimes related to anemia? That's common with celiac, especially for a man. Was that checked?
  3. megsybeth
    Oh that makes me mad. I try to stay positive but these doctors are well paid enough that they should at least be up on the research and proper techniques. What gets me about doctors who tell parents their kids can't have celiac (BTDT) is that they don't tell us a likely alternative. It's almost like they're saying a world where little kids can't digest food...
  4. megsybeth
    Thanks, Deb. The more I watch him through the lens of celiac the more I feel like he's just starving and the way he's shoved playdough, salt, flour, dough into his mouth so desperately might be a desperate attempt to get the nutrients he's missing. I may be reading too much into it but I'm recently diagnosed with celiac after thirty years of what are pretty...
  5. megsybeth
    My four-year-old son is going in for an endoscopy/biopsy tomorrow, performed by a skeptical GI. I've posted before about his blood work and some say he hasn't had enough testing and I know, even with the best tests there is a small false negative rate on the blood work. I already spoke to her about where she'll do biopsies and she said she'd be doing them...
  6. megsybeth
    Hi Everyone, My son's endoscopy is tomorrow. Also doing a colonoscopy so it's been a fun Halloween of liquid diet! I have an appointment with a celiac specialist at the end of November but decided to put my son back on gluten after a week off (he's been back on three weeks and suffering a lot) and have old GI do scope and I'll have all biopsy images, along...
  7. megsybeth
    HI PA Celiac Mom. I'd recommend reading a bit on here about appropriate testing and also googling a bit. I'm dealing with a late celiac diagnosis for myself and for my son who I believed was screened. My son was first "tested" through stool screening for fats in the stool at 18 months. I was told he didn't have celiac based on this. The main reason for testing...
  8. megsybeth
    Thanks, everyone. I don't mean to seem like a worry wart but I'm one of those people who didn't really have GI issues recently befor the diagnosis (I think I've had celiac undiagnosed for thirty years and had stomach pains when younger). So I've gone from pretty much nothing to being very aware of the lower region of my digestive system. Very aware. I...
  9. megsybeth
    I've been gluten free for just over two weeks and overall I feel great. I feel so much happier and more energetic. But my digestive system is definitely working some kinks out. I'm not in a lot of pain but I have more gas and cramping than I ever had before going off gluten. I know changes and discomfort are par for the course but I also want to know that...
  10. megsybeth
    Mama Maria, That is funny that you have night vision issues. I never would have thought it was a symptom of anything but it's related to the vitamin A deficiency. Like lots of things I just thought, well our bodies change as we get older. Maybe I need glasses. I ordered this book, Celiac Disease: A Hidden Epidemic (2010 version) by Peter Green, who is a...
  11. megsybeth
    I did and was lucky to have this clear up to some degree almost immediately after I went off gluten. My son, who also has celiac, also has terrible sinus/tonsil issues and has had two surgeries. He's still in the middle of testing but I had taken him off for almost a week and noticed him breathing through his nose better and he went back to putting his face...
  12. megsybeth
    Thanks, Ladies. I think that's a good idea, Ravenswood, to say that I think everyone should be screened for it. I do make a point of telling people that I didn't have certain symptoms prior to my diagnosis because I think people are still stuck on the idea of it being a purely GI thing. I will try to bring it up with her again after I see a specialist in...
  13. megsybeth
    I'm doing a lot of experimenting with different flours, meals and starches. I figure once I know what works well for my family I might buy things in larger quantities. For now my baking cupboard is spilling over with all sorts of different grains. But I read something about flax meal going bad and needing to freeze it. I'm wondering what else should go in...
  14. megsybeth
    Thank you KarenG, I'll try that. Looks like a good site.
  15. megsybeth
    I think it's probably pretty common for newly diagnosed celiacs like me to see it everywhere but today I had the strangest experience. I was at a birthday party for a boy in my son's class who I don't know well (new school) but have met a couple times, have met his mom and his sister a couple times. I was looking at this boy and his sister and noticing how...
  16. megsybeth
    I forgot to ask if you have any night vision issues? I noticed that I have a really harx time reading street signs at night, also mh eyes just feel tired, kind of unfocused. I guess vit A deficiency is very common with celiac, and those are common symptoms.
  17. megsybeth
    Do you have to go to that GI? My 4YO has to wait a long time to get into a celiac specialist but a regular GI is doing the endo sooner. I think its terrifying to have these young kids starving for these tests. If she loses more weight, is listless, maybe a trip to the ER at a local childrens hospital will get her scoped sooner?
  18. megsybeth
    I hope you're doing better. Have you tried pudding? I made a huge batch of rice pudding last night and it's something I find really soothing. I don't have the same fear of foods but prior to diagnosis I had to force myself to eat and found texture is a big issue. I also think there is something soothing about those soft textures. Right now you need to baby...
  19. megsybeth
    I think it's important to have the blood tests, full panel while on gluten. The thing is, you can take him off gluten now but then you send him off to college and it's kind of a pain to be gluten free and maybe he doesn't get any symptoms. But symptom or not, if it is truly celiac it is deadly. You are more likely to develop a wide range of cancers if you...
  20. megsybeth
    Someone gave me a potato scrubber that is shaped like a potato. If you could find a scrubber shaped like a nasty, crusty, dirty dish you'd be all set! Besides bacteria and old food (and gluten), doesn't that get dish soap on your veggies?
  21. megsybeth
    I'm feeling a bit blue this morning for myself and my little boy. I can't seem to focus on my work at all. This is part rant and pity party and part a question about his labs over the years and seeking any input. To give a summary of our situation, I'm sure my 4yo has celiac (small stature, attention and motor problems, lethargy, anemia, and now horrendous...
  22. megsybeth
    I was diagnosed with celiac about two weeks ago and have been on the gluten-free diet since then. I was very lucky to immediately get a lot of my energy back. Also sinus pain which I often get from environmental triggers has greatly improved. I'm wondering if anyone has experience weaning off zoloft and could give me advice as to when in the recovery it might...
  23. megsybeth
    I know how you feel. I'll admit I was pretty happy to get the diagnosis. It just explained so much. And it's the first time in a long time that I've had a clear, hopeful picture for my son. It's so early for me so I'm sure there are different feelings to come but I really don't mind the diet. I also think so many health conditions make you feel powerless...
  24. megsybeth
    Hi Jessica, Your story reminds me of my son and my struggle to get a clear diagnosis. Have you considered having yourself or your husband tested? That was where the process with my son led me. I recognised some symptoms and did test positive, which makes me think gluten-free will help my son, regardless of endo. Without that, his GI would probably not have...
  25. megsybeth
    I'm 35 and had some similar symptoms. I think it's very challenging to get a sense of normal for fatigue and confusion after you've had a baby. But before I got my diagnosis I would tell my husband that my days felt like they started with a big punch in the face. I'd be standing there in my kitchen with a couple boys bouncing off the walls downing cup after...
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