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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
    Hi Astrobug. Believe me, I so feel your pain! I was diagnosed in late 2019, then began a STRICT gluten-free diet in March 2020. Then along comes the pandemic/shutdown. This celiac disease diagnosis + Covid pandemic timing has only magnified my anxiety/depression levels because they made me fear not only possible gluten exposure but also Covid exposure...
  2. Kate333
    Hi Cristiana. What dose of vitamin D are you taking? And every day?
  3. Kate333
    Trents, friendly correction. I think you meant to say "DAO" (diamine oxidase enzyme), not "DOA"? (DOA is an acronym for dead on arrival...😉) Also, decline in DAO/histamine intolerance--esp. later in life--can be triggered by many things, including severe stress, advanced aging of the GI tract and, of course, activated celiac disease, which often le...
  4. Kate333
    Hi Sarah. Since you already noticed some improvement on a gluten-free diet, perhaps you could try a STRICTLY gluten-free diet for a longer period of time, like 3-6 months, and see if that significantly reduces some of those symptoms. If so, IMO you would have enough anecdotal evidence to justify a more permanent gluten-free diet, regardless of whether or...
  5. Kate333
    Hi Liam. I so recognize and empathize with your feeling alone and being so overwhelmed, sad after first diagnosis! Same here. But as you can see, this is a great online support resource of folks who have been down the same road who can help you navigate and learn the ropes as you adapt to gluten-free diet and begin to heal. The good news is you are...
  6. Kate333
    Very simply, you will stop getting sick when you stop eating out. As C4 put it so directly, you need to accept the fact that you are not like most people anymore and cannot continue with "business as usual" post celiac disease diagnosis. And in case you haven't been told by your doctors, the gluten-free diet means 100% gluten-free, not merely reduced gluten...
  7. Kate333
    I second what others have said about potential cross-contamination risks. Restaurants--even those touting gluten-free menus--are a BIG problem, as are processed/packaged foods. The big problem with both is lax regulation. Most companies and restaurants essentially operate on the "honor system" (i.e., they are not really regulated to ensure those gluten...
  8. Kate333
    Hi Walter. As you note, you have struggled with chronic anxiety/depression for quite some time. This problem, esp. if unaddressed/untreated can result in in MANY physical symptoms, including those you describe. I speak from experience and your experience mirrors mine of the last 2+ years as I have had many of the same symptoms, even on a STRICT gluten...
  9. Kate333
    Hi everyone! I was diagnosed in late 2019. Adopted strict gluten-free diet in early 2020. My initial TTG was 224 (IgA has always been normal). After 2+ years on the strict gluten-free diet, I was happy to report my TTG finally normalized in April 2022 (13 - normal scale is 15 or less). My follow-up EGD/biopsies were also normal. But, honestly...
  10. Kate333
    You may well still be getting cross-contaminated by sharing grill, plates, utensils at home, esp. since your partner is not gluten-free. (Also, if you kiss your partner right after he eats gluten meals, that could also a possible source of gluten exposure.) And dining out, even occasionally at restaurants touting gluten-free menus, or eating any processed...
  11. Kate333
    I agree with Trents. There is no valid reason to refuse a request for a simple, inexpensive gluten antibody blood test (TTG/IgA). She should have also referred you for a GI consultation, given your chronic D since February. I could be celiac disease or a zillion other things, but a responsible, caring doctor would be eager for definite answers, not just...
  12. Kate333
    Hi. Your comments reminded me that I felt the same emotions after my diagnosis in late 2019: worried and very alone. And those feelings only intensified after I spent hours surfing the internet, reading about celiac disease symptoms, worst-case scenarios, etc. I found that this habit sucked me into that "deep rabbit hole" of health anxiety you so vividly...
  13. Kate333
    Hi Scott. Could you pls. share what kind of fiber foods (or other sources) and how much fiber a day? I take a Metamucil supplement pill once a day but still cook my veggies, so not sure whether/when I should try raw veggies (carrots, lettuce, spinach, etc). I eat a lot of starch (potatoes mainly) and "soft foods". My TTG/IGA are finally below normal...
  14. Kate333
    Hi Marina. Sorry you are struggling but you are not alone in your response to the diagnosis and ongoing issues. When a doctor mentions the anxiety issue, I wouldn't be so quick to get angry or conclude that you are being "gaslighted". And you note that you are a highly emotional person. Nothing wrong with that. Same here. Perhaps you are not fully...
  15. Kate333
    Hi Nata. I am glad your brain MRI was normal. I, too, have this issue, primarily feet, but in my case, I think it's due to extreme stress/insomnia/health anxiety in my life over the past 2+ years. I have been strictly gluten-free for past 2 years, and my latest TTG blood test was normal. I was first diagnosed in late 2019...then along came the Covid...
  16. Kate333
    I--and my personal GI docs and other prominent GI docs--agree with you, so I will not "try it and see what happens". Personally, I feel like I have worked too hard and too long to FINALLY get my TTG gluten antibody test results down to a "normal" range of 13 (YAY!!) from a high of 224 at first diagnosis, so I am not about to consciously let down my...
  17. Kate333
    Of course, only a doctor can give you a definitive diagnosis. In addition to celiac disease, your symptoms are classic for chronic, extreme anxiety/panic disorder, which affects the cardiovascular, GI, hearing, temperature regulation, and virtually every part of the entire body. For example, HBP while often symptomless, can also cause headaches. See anxietycentre...
  18. Kate333
    Hi Ashleigh. If you are recently getting nauseous, esp. after eating gluten, that sounds like your GI system is definitely sounding an alarm by triggering inflammation because it doesn't like what you are eating. I would have mentioned stress/IBS as factors, but since you note you have already returned to eating gluten, I think you have the answer. My...
  19. Kate333
    Hi Jennnnnn, I had depression/anxiety for years prior to a celiac disease diagnosis 2 years ago which continues after adopting the 100% strict gluten-free diet. Thankfully, my latest follow-up TTG/IGA blood test is normal and the EGD biopsy shows gut healed. Yet I STILL struggle with bad depression/anxiety which affects my GI and other body systems...
  20. Kate333
    Also, many of your comments indicate classic severe anxiety/panic attack/depression symptoms. I have found the anxietycentre.com website very useful free resource as it explains in detail how long-term, severe stress negatively affects the body, including triggering acute and chronic GI and nervous system symptoms. Perhaps counseling and/or a low-dose anti...
  21. Kate333
    I would suggest updated TTG/IGA blood test to assess the current level of gluten antibodies, if any, in your system. If the blood test levels are normal, chances are you are ingesting something other than gluten something other than gluten is causing your sudden, severe symptoms. If your G antibodies are abnormal, high, you are definitely getting G exposure...
  22. Kate333
    Hi GNC. As you learned the hard way, even trace, small amounts of gluten are harmful. To date, the ONLY treatment for this condition and way to heal is to avoid ALL and ANY gluten exposure for the rest of her life. Simply reducing G consumption of "obvious" sources of G (bread, pasta made with wheat flour, for example) or thinking it safe to have "only...
  23. Kate333
    Hi Kristen. I am not a doctor, so cannot diagnose you, but your symptoms remind me of classic physical manifestations of panic/anxiety disorder, certainly understandable during this seemingly endless pandemic. I speak from experience. In my case, I have loose stools, "the shakes" or "chills" (esp. at night when my mind is racing, gripped with uncontrollable...
  24. Kate333
    Hi Steph. My first TTG near the time of my original diagnosis was 224. The good news is that children heal quickly on a STRICT gluten free diet and her future TTG blood tests numbers should rapidly decline as the remaining gluten in her body is "flushed out" and she begins to heal. I noticed my TTG numbers declining by 50% each time I got a post-diagnosis...
  25. Kate333
    Hi Saba. A couple of thoughts: 1) your comment that your symptoms started improving after you began taking SSRI med is revealing. I don't know if your doc mentioned this, but chronic stress/mood problems (depression/anxiety) often show up in physical symptoms, even in people not diagnosed with celiac disease. A great website--anxietycentre.com-...
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