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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    It probably was not caught that early, he just had a blood sample taken where the numbers weren't that high. There are quite a few celiacs who have completely negative blood tests and are diagnosed on biopsy alone. I personally do not think it's how positive a test is, I think the important point is that it is positive. Hope he feels better soon.
  2. nvsmom
    Sorry to hear of your diagnosis but welcome to the board. Keep eating gluten until you are sure all testing is done. Hopefully you see the GI soon. Not all doctors require a biopsy to confirm celiac disease now a days. Some doctors go with just the blood tests (especially if more than one was positive) and a positive reaction to the gluten-free diet...
  3. nvsmom
    I was doing research on my son's Aspergers (the Gluten-free Casein-free diet) and found references to celiac disease and gluten sensitivity. I realized that i had felt better in the past(after a few months) when I followed the "Eat Clean Diet", which is pretty low carb. I also read Wheat Belly and continued to reduce my family's wheat consumption. After another...
  4. nvsmom
    I have had sudden onset joint pain like that many times in the past. It would appear in fingers, hands, elbows, or shoulders after a period of feeling unwell. It also is accompanied by fatigue and hair loss. I am pretty sure it is autoimmune related but I am not sure if it is celiac, thyroid or related to something else. My last "attack" was when I began...
  5. nvsmom
    I'll play the role of a doom sayer ... TPO Ab can also drop off once enough of your thyroid is destroyed. Hopefully this is not true in your case. If you are hypothyroid, you should still get treatment. Perhaps you won't need as much of the hormones now that you are gluten-free. Best wishes.
  6. nvsmom
    I noticed stomach pain decreasing within days but then I felt worse from a withdrawal. Most of my symptoms improved between two weeks and two months. Some symptoms took six months, and I'm still waiting to see if other symptoms will improve on a gluten-free diet or not. Best wishes.
  7. nvsmom
    I think (or should I say hope - lol) that it was something else. I was eating some chocolates that were not made on a gluten-free line. They had barley malt cc. It was enough to give me stomach upset, bloating, and a general feeling of unwellness but because I did not get my old gluten stomach pain, it took equity a while to figure it out... That is why...
  8. nvsmom
    Good luck!
  9. nvsmom
    Lol. I had the reverse happen to me. A relative made a point of buying whole wheat crackers for me because she thought I could eat that. Sweet but misguided.
  10. nvsmom
    I have had hypothyroid symptoms when my TSH was as low as yours is, closer to a 1 is considered better. Your Free T4 is quite low. For people dealing with Hashimoto's disease, your FT4 level would leave them quite exhausted; for FT4 and FT3, you should ideally be in the upper 50-75% range of your lab's reference range... My FT4's lowest was at about 10%...
  11. nvsmom
    Your eye problem sounds like the migraine auras that I used to get. My vision would get jittery and it was hard to read.... My migraines were caused by gluten... Hope you feel better.
  12. nvsmom
    Just remember that it may be easier to transition out gluten at age 2 than it will be in a fe more years
  13. nvsmom
    You probably do hide it well. Most of my family had no clue that I had it...hang in there. ((Hug))
  14. nvsmom
    I had no idea that my migraines were gluten related. I was sooooo happy and surprised when those stopped happening for weeks every month. It's not exactly a funny improvement, but I tell you, I could almost laugh out loud with relief!
  15. nvsmom
    How long did you experience symptoms? Most of my life (39 years). How long have you been gluten free? Only 8 months. What are you dealing with now:? Still have some fatigue. "C" is still with me but less. Joint pain is greatly reduced; I am now mostly stiff and weaker than before. I still get back pain but I don't think it's gluten related. My...
  16. nvsmom
    It's not often that someone tests positive on every celiac blood test given to them! I'm surprised they want to bother with a biopsy at all, especially with a positive EMA test which indicates a lot of intestinal damage must be present. If your insurance doesn't cover the biopsy, I would consider skipping it...You already have 5 tests confirming a celiac...
  17. nvsmom
    The lab tests you had done are just for celiac disease, they won't show non-celiac gluten intolerance (NCGI) which is 8-30 times more common and every bit as nasty. Also remember there is a false negative test rate of about 25% and you could fall into that category. I mention this because your symptoms match mine almost exactly (minus the teeth problems,...
  18. nvsmom
    It looks like you have a couple of positive tests, and those DGP tests are the newest and pretty specific to celiac. I think it's wise that you are sticking to the gluten-free diet (for life). Hopefully over time it will help clear up some of your other symptoms. I am about 8 months gluten-free now. It took a good 6+ months for my joint pain to go away...
  19. nvsmom
    Wow. I agree with Neroli, you have done a great job in the past of finding the offending foods and eliminating them. And with five kids?? That is a LOT to keep track of. You've done a great job. It sounds like you should revisit your past results and just stick with what you've done before (with some tweaking). Go with Neroli's advice, she is one of the...
  20. nvsmom
    I haven't had a real hard time falling asleep, but I take about 1 mg of melatonin and a Calme remedy at bedtime and I find I sleep very deeply. a bit of mealtonin at bedtime might be something to consider to get you through this.
  21. nvsmom
    I've heard many poeple feel worse because of the gluten they ate prior to the test but I haven't heard of the test making them feel worse... I never had the endoscopy so I'm not exactly knowledgable about this... Hope you find answers and feel better soon.
  22. nvsmom
    The biopsy shows the damage so as long as he hasn't healed completely it should show up... I think your doctor could be taking a risk with telling you to stop eating gluten now and then restart it 3 days before the biopsy unless the biopsy is in the next couple of weeks. As long as he is handling the effects of gluten okay, I would try to keep him on some...
  23. nvsmom
    That's good you've gone off gluten and your other food intolerances. Food intolerances cause inflammation and can make other autoimmune disease symptoms worse. Unfortunately it can take months for a symptom to resolve after you've removed the offending food, unless you are one of the lucky who notice improvements right away. Your symptoms do sound a lot...
  24. nvsmom
    A positive AGA test indicates there is a problem and that it is probably celiac. If you don't think it's celiac, you should ask the doctor what they think the problem is. Perhaps if you suggest going gluten-free for a few months and have their AGA IgG retested after that, their AGA IgG tests might come down (like it appears your son did) and then you'll...
  25. nvsmom
    Good luck with the scope. Try to ensure they take at least 6 samples for a biposy, 8 or more is better. Hopefully that won't miss patchy damage. I read somewhere that the average time to diagnosis for a celiac is 8 years.... Most people i've heard about seem to fall into one of two groups: 1. Symptoms come on fast and hard and they are diagnosed in months...
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