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thleensd

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

Everything posted by thleensd

  1. thleensd
    Pikakegirl - good luck with your cardiologist appointment. It's really amazing that we have to push so hard to get answers, but I hope you can find some more! SVT isn't uncommon for people with POTS...they can certainly co-exist, but that often makes diagnosis challenging. Please make sure that you ask them to take your pulse and BP lying down and standing...
  2. thleensd
    I do appreciate your clarification, although I will say that if your POTS can be fixed by a tablespoon of soy sauce, it was not true POTS in the first place. Dysautonomia is a big deal. Sodium can help some with low blood volume or low blood pressure in some people, but let's not recklessly throw around advice. It's like saying a mild case of celiac...
  3. thleensd
    Not asking for advice. I've done thousands of hours of research on health in general - hundreds and hundreds in dysautonomia and POTS, I have a leading doctor, and am taking in 10 grams of salt per day (as recommended), and am not yet well enough to take care of myself, so I'll be starting medication soon. It is frankly insultingly naive to suggest that...
  4. thleensd
    Looks like I haven't been on here for about 4 years...hoping the next chapter in my story will help someone along the way. I was diagnosed with celiac disease by biopsy in 2009 after a number of years of trouble. I carefully nixed gluten, then went paleo, then went on the Wahls Protocol - each with some improvement, but never enough to return to "normal...
  5. thleensd
    This made me SO irritated!! The doctor asked her how often she poops (1/day), how much it hurts (3/10) and palated her belly. Then he said celiac disease is currently a fad and told her she was fine. Seriously?!?! Wtf?! No blood test, no referral... Not even "try it and see..." I hope they get flooded with complaints.
  6. thleensd
    So, I stopped all of the supplements and remedies after having severe numbness in the right side of my body for days. It took about 5 days off of everything for it to go away. I will continue to see her for body adjustments since I've had FANTASTIC results from that. I'll need to do some more personal research to decide which supplements I'd like to try again...
  7. thleensd
    Are any of you familiar with and/or trying the Wahls protocol? Dr. Wahls is an MD with MS that is treating herself through diet. Her story is incredible, and I think has great implications for Celiac Disease and other autoimmune disorders. Her TED talk is here: After limited recovery going gluten free, I went Paleo and started improving. I started...
  8. thleensd
    Why did your doc say to go gluten free? "doctor, it hurts when I do this!" "don't do that."
  9. thleensd
    I don't trust anything at an event like that. Eat before you go. Being food. Ask if you can have a clean plate and eat your own food. People may ask, but give them a quick explanation and move on!
  10. thleensd
    It's pretty common for your hormones to get messed up. How old are you?
  11. thleensd
    I've enjoyed reading all of your thoughts. Some really weird shifts happening in my body now... Some good, some not so good. Cutting doses in half. People have been telling me I look really good, so that's a nice change. The numbness/neuropathy I've been dealing with lately has been the most disconcerting. MD's just want to run another MRI. The body is...
  12. thleensd
    Hey Irish! Nice to hear from you. Glad to hear you're doing a bit better. Yeah, I've read all of that about the live blood tests, etc. It's frustrating, because I really like the other stuff this lady is doing (body work, supplements, nutrition, appropriate exercise program). I told her up front I didn't believe in the stuff. Ha. I wonder if...
  13. thleensd
    SO sorry to hear this. He has NO IDEA how horrible he is being. ...look into separate kitchens (whatever that means to you) if he won't get gluten out of the house......
  14. thleensd
    Some hairsprays DO contain gluten. As do other styling products. I've been going to the same stylist for years...and he knows to not use any unapproved products around me! Bring your own if you have to!
  15. thleensd
    Pressure urticaria is a real thing! But.... as your body heals, it may lessen as well. Inappropriate histamine responses = hives. This may be a long shot, but you may want to look up histamine intolerance - cutting back (not necessarily eliminating) certain foods may help. Or your immune system is still just freaking out a bit. Hang in there, and keep...
  16. thleensd
    I haven't been on for a while, but I wanted to throw a topic out and hear your thoughts. I am, in general, a rationalist. I believe in science and evidence - but I also know there are things we don't understand yet and I'm open to that. For example, I feel better after acupuncture. I don't know that it's for the same reasons my acupuncturist says it is...
  17. thleensd
    *Eh. I put this in the wrong place. Guess I forgot how to use the board. Should probably be in the "coping" section.* I haven't been on the board for a long time...maybe a year. Looking for some support, I guess. It's been four years since I was diagnosed, and I'm still not doing all that well. I've pretty much given up on my mainstream doctors.....
  18. thleensd
    I know this is a few months old, but I'm looking through to see other people's histamine comments. Years ago I was diagnosed with "chronic idiopathic urticaria and angioedema" (hives and swelling - unknown reason). I also had dermagraphia... The swelling was actually a delayed pressure reaction. Look up pressure urticaria. It is well-known. From what...
  19. thleensd

    I have gone through very similar times, with idiopathic chronic hives/angioedema. My allergist thought it might be autoimmune because all my allergy tests came back negative. I was also tested for all sorts of autoimmune but they have all come back fine too. Several years went by after my first remission from hives and I relapsed. I have posted what I did to go back in remission, please rea...

  20. thleensd
    What a great conversation. It's nice to have people to relate to! So many "atypical" issues here that are simply "just" Celiac. I feel like I'm always looking for more answers to fix my fatigue, aches, brain fog... I will continue to do so, but more than likely what I need is time-time to eat good, nutrious food. Time to rest. Time to understand my body and...
  21. thleensd
    In short, two questions: what tests should I ask my doctor to run to test for Hashi's? Is it possible to have "normal" TSH, T3, T4 and still have it? Longer version if you have time to read: In 2005 I was diagnosed with chronic idiopathic urticaria (hives) and angioedema (swelling). I spent a hellish year on heavy antihistamines (don't remember much from...
  22. thleensd
    I'll definitely have my folate checked next time I go in for blood work. Last time it was >20 and "normal" is listed as > 5.35 ...which doesn't really make much sense. What's with the >? The way I read that is mine was greater than 20, which is high (standard reference range I found online went to 17, so it's not absurdly high). I'm not taking that...
  23. thleensd
    Yeah, I've looked into other foods. I found that I do better with no grains. I'm on the GAPS diet, which among other things is grain-free and soy-free. I've tested against nightshades, fructose, dairy and a bunch of other things. I eat only whole, unprocessed foods, organic when possible. I can't afford to eat all organic meat - I'm on a high calorie diet...
  24. thleensd
    Thanks for all of your thoughts. It's definitely not low B12 (mine is over 900) and it isn't hemochromatosis (have checked iron labs carefully) unless there is something about it I don't know. My saturation has generally been on the low side. >>>As for what you can do with your time? Well, if you have any hobbies that can keep your hands busy...
  25. thleensd
    My B12 is above normal and stomach acid seems to be fine now (I was having heartburn/ulcer type of issues, went on the GAPS diet and that resolved. Supplementing at that time was painful). Is there a stomach acid test?
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