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nvsmom

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Latest Celiac Disease News & Research:

Everything posted by nvsmom

  1. nvsmom
    Many celiacs experience what appears to be setbacks when they are gluten-free. I personally felt much worse after being gluten-free two months - my joint pain, fatigue, hair loss all came roaring back for a coup,e of months. But that was my last major blip. We usually tell people to stay gluten-free for six months before judging the diet's effectiveness...
  2. nvsmom
    I never mentioned it either because that was normal for me, and had been since childhood. I take the fludrocortisone and it does make a difference. I don't get tunnel vision every time I get up but I do still get light headed on occasion. I was recently tested for Addison's disease and happily do not appear to have it even though I have the low bp, postural...
  3. nvsmom
    LOL I can help with that one - I have had that for decades. It is postural hypotension. It can be a result of low fluid levels or salt content in the body, or from low levels of aldosterone (an adrenal hormone). To prove you have postural hypotension, you would take your blood pressure while laying down for a while, and then immediately upon standing...
  4. nvsmom
    Ugh, I HATE that guy. He could have done that for any disease. Ask a diabetic what sugar is and they won't delve into biochemistry to discuss it's molecular make up. Or ask someone with heart disease what the plaque build up in their arteries is made of and I bet they couldn't tell you. The guy is an idiot. I will never watch him. Ever.
  5. nvsmom
    About 50% of celiacs develop lactose intolerance due to damaged villi - it often improves as you heal, just give it 3-6 months, or sometimes a bit longer
  6. nvsmom
    Cances are it was just the one tTG IgA test. If possible request the DGP IgA, DGP IgG, tTG IgG, EMA IgA, total serum IgA, and possibly the older AGA IgA and AGA IgG tests. That will give you more info to go on. And chronic constipation? That s a symptom, not a cause.... That paed sounds pretty lazy...
  7. nvsmom
    Do you know what tests were run? Was it the full panel?
  8. nvsmom
    Celiac is an attack on the small intestines. The stomach could be affected, but so can the brain, gall bladder, joints or other body parts or systems.... Maybe he meant the stomach and was dumbing it down (severely)? Celiacs do not usually have visible intestinal damage, usually a biopsy is needed to see the damage. I'm sure others who know more...
  9. nvsmom
    Mustard? I think most are gluten-free... Weird. If the blood tests are negative, you might want to retest after a gluten challenge (8-12 weeks of 1-2 slices of bread per day). Let us know how it goes.
  10. nvsmom
    My middle son gave me a painted, dry noodle necklace a year or so ago. I decided to display it prominently in my car from my rear view mirror so he gets to see it every time we drive somewhere (and I didn't have to wear it LOL). As an added bonus, it makes my very average minivan a little bit easier to spot in a parking lot.
  11. nvsmom
    I make pancakes that are pretty lower carb and higher in protein but an omelette and bacon will beat it for protein any day, especially if you use syrup. Pancakes: 9 eggs 1/4-1/3 c coconut oil or butter 1.5- 2 cups coconut milk or cream, or milk 2 scoops Vega One protein powder (if you use vanilla, add a 1/4 c of cocoa or the pancakes will be green...
  12. nvsmom
    Yeah, two weeks probably wasn't long enough but.... that tTG iGG is pretty darn close to positive for only being on gluten for two weeks. It makes me wonder what it would have been if you had been consuming gluten for another 6 to 10 more weeks. 2 weeks on gluten is generally considered enough for a biopsy although some doctors like 4 weeks better. ...
  13. nvsmom
    You definitely have celiac disease or non-celiac gluten intolerance (NCGI) symptoms. About 50% of celiacs are lactose intolerant at diagnosis as the damaged villi won't make lactase to digest the milk sugars (lactose). The "gold standard" is a positive biopsy from an endoscopy. Positive sample are seen more at the upper/beginning portion of the small...
  14. nvsmom

    ARCHIVED My Heart

    nvsmom replied to CaliSparrow's topic in Related Issues & Disorders

    I hope it's nothing too serious. (hugs) I know thyroid issues can mess with your heart rate and cause palpitations. Maybe that's something to look at too? Just throwing a thought out there. Hang in there. I think those of us who research health issues and actively search out health solutions have the problem that we read what COULD be wrong and scare...
  15. nvsmom
    I get a shaking/throbbing that I though was related to my heart but it goes much faster than my heart rate. I'll often wake up to the sensation in the morning. It feels like my heart rate is shaking my body a bit BUT when I take my pulse, it is always slow and steady compared to the shakiness. Very odd. I do have shakiness that I am guessing is an essential...
  16. nvsmom
    I like this report from the World Gastroenterology Organisation. Testing is discussed on pages 8-12, with a testing chart for sensitivity and specificity (which is the one he is arguing) on page 12: Open Original Shared Link This discusses how a diagnosis can be made: Open Original Shared Link Another paper discussing the accuracy of tests: Open...
  17. nvsmom
    Washing toys is usually fine. Just soap and water -throw them all in the bath tub and wash them up. I would check the bottoms of toy boxes too. You know how Cheerios and fish crackers like to gather in spots like those. LOL
  18. nvsmom
    One month is about half or a third the length that is usually recommended (8-12 weeks with longer being better). If you can stand to wait to test, I would just so you increase the test's accuracy. On the other hand, if your doctors, or insurance, is willing to retest you at 12 weeks if this test (at one month) is negative, then I say go for it. It is...
  19. nvsmom
    Good luck with the tests!
  20. nvsmom
    I like that - it is not really a setback but just a blip... well put. My blip was a return to fatigue, hair loss and a major bout of joint pain. It hit me at about 2 months gluten free and was done within about 3 months. It was a nasty one, but on the bright side it was my last nasty bout of pain. I have had a few mild blips since then, in fact...
  21. nvsmom
    Set backs happen even when you do everything right. Those first six months can be a real up and down roller coaster ride as you body starts to get well. I had a big set back after being gluten-free for a few months, and it really brought me down, but I waited it out and came out healthier... if not quite fed up. LOL Hang in there. I'm betting that by...
  22. nvsmom
    Aw. Poor guy. Is there anything like a cadets program where you are? It could be a Canadian thing... Anyway, Cadets starts at age 12 up here, and one can join army, sea or air cadets. It is very military run with learning to shoot, sail, fly and all sorts of stuff. My 11 year old joined the junior Naval cadets (ages 9-12) and loves it. They do lots...
  23. nvsmom
    That's great that you found your answers! I agree that SIBO testing is a great idea for those who are having symptoms, I remember being tested when tested for celiac disease. I was fine but I am sure there are others out there that SIBO testing would help.
  24. nvsmom
    That was very true for me. I take a very high dose of natural desiccated thyroid onside ring that I still have a thyroid.
  25. nvsmom

    ARCHIVED Good Gi Doc Experience!

    nvsmom replied to Yarnstormer's topic in Doctors

    Lol I'm glad he's on the ball. Most stories we here around here are about how octopus have made mistakes. It is nice to hear about a good doc, with good boots. Good luck with the testing, and remember to keep eating gluten until all tests are done.
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