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Kate333

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Kate333

  1. Kate333
    I'm pretty new to this gluten-free game but but I've never heard of "certified gluten free" restaurants or other food establishments. However, many restaurants do advertise "gluten-free menus" or individual gluten-free items on their regular food menus (and/or websites). Most restaurant workers--high school and college kids--lack a basic understanding of...
  2. Kate333
    Hi Bob. Fellow "newbie" here (dx in fall 2019), gluten-free since March 2020. It looks like you are taking the right steps to boost your awareness, shop wisely, and facilitate your healing. I share your frustration with continued symptoms, inability to get clear diagnosis years earlier, and continued GI distress despite your best efforts. The good news...
  3. Kate333
    Totally understood! As a fellow celiac disease "newbie" I find it very easy to relate to your fears, anxiety. We have all been there. Hopefully, we will both soon look back on 2020 as just a "bad patch" which we have overcome and healed from. In the meantime, the most important things you can do for yourself every day to facilitate healing of your...
  4. Kate333
    Hi again, Allisonrc: Yes...you'd be surprised how much chronic, severe stress, anxiety, depression, insomnia can manifest in a big number of physical symptoms. I know I certainly was at first until I educated myself a bit by listening to neuro doctors, MH providers. There are also many articles online about the link between physical symptoms and chronic...
  5. Kate333
    Hi Allisonrc. Ask your doc to run another TTG gluten antibody test. The numbers will definitively show whether you STILL have gluten in your food. In my case, it took about 6 months on a STRICT, 100% fresh food gluten-free diet (absolutely no processed, packaged food--not even those labeled gluten-free--and no sharing food or eating out--even carryout...
  6. Kate333
    Hi kbial. Only your GI doc can give you a definitive diagnosis. My test results were similar to yours. At its highest (last fall, at the time of my first blood test and endoscopy) my TTG level was 224. My DGP level has always been in "normal" range. My scope was negative for celiac sprue. But don't panic because the good news is that your...
  7. Kate333
    My advice is the same when living in the USA or any other country: just avoid eating out, restaurants, and most packaged, processed food in markets. Just buy and prepare ONLY fresh fruits, veggies, and meats/fish. (Perhaps there are local farmers' markets nearby the place where you will be staying.) Only then, can you be absolutely confident you will be...
  8. Kate333
    My problem is, I suffer with health anxiety and I’m getting into a real panic that it may be something more sinister! As someone who has lived with lifelong health anxiety (HA), I can relate. But I also know from experience that chronic, severe HA can cause a wide variety of symptoms, including physical aches and pains, fatigue, insomnia, and/o...
  9. Kate333
    "They scoped me and said I don’t have celiac anymore, the blunting was gone." Hi LyndsRose, I would contact your GI doc to clarify the findings (or you can always request a copy of the endoscopy report). As others have noted, celiac disease does not "go away" even if your gut has entirely healed from previous injury. Thus, it is VITAL to remain o...
  10. Kate333
    No offense intended but IMO you are taking a big risk of gluten exposure by eating at those fast-food restaurants. I used to work in fast-food, and I can tell you that most of these restaurants use the SAME grills/food prep boards/utensils and sometimes they are cleaned between orders; more often not, and never thoroughly enough. These places are...
  11. Kate333
    Hi Jessica. It sounds like perhaps you are still getting gluten in your diet. I would recommend an updated blood test (TTG) to check your gluten antibody/exposure levels. The easiest way to ensure you are not getting any gluten in your diet is to avoid ALL processed, packaged foods--even those labeled "gluten free"--and eat only fresh food that you...
  12. Kate333
    Hi Tyler. A few suggestions: Ask your primary care doctor to order a gluten antibody blood test. Here in the USA, it is called TTG-IGA and costs roughly $100 out of pocket if purchased online through a home test kit program. The test is a simple, highly reliable, screening tool to tell whether you have (or hopefully don't have) a high probability...
  13. Kate333
    Hi Melisa. Sorry you are in pain and distressed. The symptoms you describe (pain and indigestion) could be so many different things, including gluten allergy but also could be due to simply bad diet, PMS, IBS, chronic worry, insomnia, and even depression/extreme stress which can really do a number on the gut and entire body (so understandably common...
  14. Kate333
    Returning to the OP comment (above), I just wanted to thank you, PaisleyDaisy, for your kind encouragement and upbeat post. As a "newbie" it is so easy to get depressed, discouraged, esp. when dealing with ongoing symptoms (despite return to normal blood test range). Not to mention the stress of this pandemic and the uncertainty of the future--for...
  15. Kate333
    My TTG went from a high of 224 to virtually 0 in 6 months after eating STRICTLY gluten-free. I say "strictly" because I literally stopped eating ANY packaged, processed foods, even those labelled "gluten-free" when my gastro doc asked me if I was "sure" I wasn't eating gluten (my numbers initially didn't return to normal range as fast as we had hoped after...
  16. Kate333
    Depression/anxiety is a real, serious problem. And, like celiac disease and other diseases, they can cause physical symptoms, including extreme fatigue, daytime sleepiness, aches and pains, dizziness, chills/sweats, headaches, and indigestion. https://www.bustle.com/p/7-physical-symptoms-of-depression-that-arent-feeling-sad-7583238. Chronic insomnia can...
  17. Kate333
    Hi Clara. I can relate to your sense of confusion, overwhelm by all this information. I, too, am a relative "newbie". Diagnosed last year after I had a sudden, severe bout of digestion problems. And please don't feel bad about not knowing about these issues before. I, too, also had never heard the word Celiac Disease before the doctor mentioned it, and...
  18. Kate333
    Hi Christen. I have experienced some of the symptoms you described, but I also know from my own experience that my chronic, severe stress, depression, insomnia can be big factors in either triggering or magnifying physical problems (esp. fatigue, muscle aches/pains, neuropathy, headaches, IBS). If you get a TTG test and it's normal, you might want to...
  19. Kate333
    Hi Emily. It sounds like you are doing everything right to heal your body. And I'm glad you feel better after boosting your iron and that your TTG level was so low at diagnosis. As a fellow newbie, the best advice I can give is to do everything you possibly can to ensure you are on a strict gluten-free diet. For me, the best way to avoid "accidental...
  20. Kate333
    Hi Eric. I, too, have struggled with similar issues (severe fatigue, lightheadedness, brain fog) and have consulted with specialists and have had tests (which always come back normal) and vitamin/mineral tests (also normal). Like you, I'm also a newbie (diagnosed last fall, adopted strict gluten-free diet in March). Despite that, I still have GI issues...
  21. Kate333
    Just got my latest TTG blood test result: 0.5 U/mL!! First time TTG in "normal" range since my diagnosis last fall and adopting a strict gluten-free, 100% "natural" foods diet this past March. To be honest, I was bracing myself to be disappointed (again) after my last number (in June) spiked a bit (from 73 to 81). I thought to myself: "I will...
  22. Kate333
    I feel for you because it must be very hard, challenging to live in a house with gluten-eaters. It's also hard, challenging to live with constant worry about getting CC from G consumed by others. The safest thing is to prepare your own meals using your own utensils, plates, pots/pans, etc. (as shared ones can expose you to others' bread crumbs). Sounds...
  23. Kate333
    I didn't use to be a big rum person but maybe I'll become one now 😂 +++++++++++++++++++ I used to get my "buzz" from Hagen Dazs Rum Raisin ice cream (which has real rum in it).😉 But I have trouble digesting most dairy now, so I'm skipping it while my gut heals....
  24. Kate333
    I agree with CL. Don't speculate or try different remedies without first seeking a diagnosis with a doctor. If the doc suspects celiac disease, a simple blood test will help rule gluten reaction issues in or out. Also, in my Gut 101 Learning Journey over the past few months, I've discovered a few surprises, including that there is a wide variation...
  25. Kate333
    Don't be too hard on yourself...A learning curve is very common, esp. in the first months after diagnosis. As a relative newbie, I still find it difficult to figure out what is safe and/or gluten-free, esp. when labels list so many ingredients with vague or esoteric names (e.g. "modified food starch"...."xanthan gum"..."ammonium phosphatide emulsifier" etc...
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