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nvsmom

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Latest Celiac Disease News & Research:

Everything posted by nvsmom

  1. nvsmom
    The only tests for celiac disease are the previously mentioned blood tests, the endoscopic biopsy, and (only for those with the DH rash), a skin biopsy. The genetic tests will only tell you if you are at risk of developing celiac disease. Blood tests need 8-12 weeks of eating gluten, the endoscopy needs 2-4 weeks, and the rash just needs to be present...
  2. nvsmom
    Yep! A trauma to the body can trigger celiac disease, and we all know pg is a bit of a trauma! LOL
  3. nvsmom
    You are in the same boat as me. I have celiac disease so I had my kids checked. Two out of three of them had some pretty obvious symptoms, but their test came back negative. The doctor would only do the ttG IgA test, which I KNOW has a sensitivity as low as 75% - that means that there was still a 25% chance that they are celiacs. I put them on the gluten...
  4. nvsmom
    YES! Withdrawal affects about a third of us, and we can really feel it in that first month. Extra tired, and headaches... My stomach would act up for no reason. Yuck. That being said, the red splotches don't sound like celiac disease. It sounds like a food allergy. Is it possible that your body is not agreeing with a gluten-free food substitute?...
  5. nvsmom
    I wouldn't trust that because intestinal damage is just a symptom (albeit a key one) of celiac disease. Did they measure bloating, arthralgia pain, migraine severity, fatigue, vitamin deficiencies, or anxiety? My guess is they just checked intestinal damage. Yeah, intestinal damage is bad but my arhralgias made life harder for me. Intestinally, I had few...
  6. nvsmom
    I would be careful with that... We can get sick from airborne flour, so I'm guessing that would be a risk too. Maybe start a thread specifically about that and others with large animal experience will chime in.
  7. nvsmom
    Yeah... The first month will be tricky, but I think you can do it too! Best wishes!
  8. nvsmom
    The endoscopy isn't perfect. A celiac can have up to a 1 in 5 chance of having a normal scope. It happens more often than people expect. False negatives are more likely to occur if a variety of intestinal areas most often affected are not checked, or if fewer than 6 biopsy samples are taken. Sometimes celiacs will only show Marsh stage 1 damage, which...
  9. nvsmom
    I'm afraid that three weeks is almost nothing in most celiac's recovery. Your body is most likely still making autoantibodies so intestinal healing probably hasn't even started yet. Early on, and the first three months is considered to be early in recovery, usually the main improvements are the obvious after dinner bloat and pain, and a few other symptoms...
  10. nvsmom
    As far as I know, the gluten you don't see can still make you ill. It's better safe than sorry. Wash the utensils and never used shared butter. Why take the risk, right?
  11. nvsmom
    I use Daiya cheese in my cooking. I don't like it raw, but melted into casseroles, pizzas, and even mac and cheeese, it's pretty good. I use So Delicious coconut milk drink, or real coconut milk, in my cooking and baking. Often I'll just use water. Earth's Balance makes a nice butter substitute without trans fats. It comes soy free as well. ...
  12. nvsmom
    That's a tough one. My oldest appears to have subclinical hypothyroidism. I hope, if he does, that his disease goes more like mine and doesn't try him too much.
  13. nvsmom
    LOL From what I am now reading, it sounds like Ord's thyroiditis and Hashimoto's thyroiditis are basically two sides of the same (hypothyroid) coin - one has atrophy (Ord) and one has hyperatrophy (Hashi's). It sounds like they are just different classifications of the same disease (thyroiditis) by researchers who wanted to name something after themselves...
  14. nvsmom
    Even with my olive tinted skin, the red cheeks are noticeable too. I will often get comments on my "sun burned" cheeks. They are red 24 hours a day, but get redder with weather, alcohol, and when I feel poorly.
  15. nvsmom
    As Bartfull said, those stool tests aren't widely recognized as a medically valid test for celiac disease, so you won't be able to get a celiac disease diagnosis with those tests. BUT, it sounds like the results you got support your hypothesis that gluten is damaging your health. Perhaps you should go gluten-free, if you can't do the other blood tests or...
  16. nvsmom
    Huh! Your thyroid put you through the ringer, and during menopause too... That's just cruel! My thyroid was kinder to me. As far as I know, it's only ever run hypo, my thyroid has never been enlarged (just lumpy like a grape clusters), and I have never have elevated TPO Ab. My TSH is also running "hyper" looking at 0.01 but my FT4 is a low normal...
  17. nvsmom
    Anyone else have a shrinking thyroid? I had and ultrasound about 2 years ago that showed and abnormal thyroid, but in a normal abnormal sort of way. I recently had a second scan which showed typical abnormalities again, but this time it also indicated that my thyroid was atrophying.... Well, at least one part of me is shrinking. LOL My first thought...
  18. nvsmom
    Never a bother. Questions asked here may go on to help others in the future who, like you, have been given a tough path to follow. It sounds like you'll need to get the normal range from his lab so you know for sure what the range for him is. Did they happen to test IgG when they tested his tTG IgG? If the IgG was going up that time (but I don't...
  19. nvsmom
    Thank you.
  20. nvsmom
    Low IgG would affect his IgG based celiac tests. If he passes into the deficient numbers, that will affect tests, and I am guessing that a low normal could affect them too. I'm not sure of the typical lab normals, but there are some listed out there like this one: Open Original Shared Link I imagine it can vary a bit between labs. Low immunoglobulins...
  21. nvsmom
    I'm not exactly sure about how they diagnose Hashi's. Most hypothyroidism is caused by Hashi's, I know that... My TPO Ab has never been elevated, but my thyroid barely works. In fact, it is atrophying noticeably. They first checked my TPO Ab 3 years ago, but I first suspected thyroid problems close to 20 years ago - it was subclinical so the doctors...
  22. nvsmom
    Thanks. It is good to have answers. It's just the control freak in me who is unhappy. With celiac disease, I control my treatment, and with Hashi's, I found a doctor who would agreed with my thoughts on the matter. With OA, there is almost nothing to be done until I need a hip replacement, and from the sounds of that, I don't want to do that too early...
  23. nvsmom
    Higher T3 (within normal) is often good. That's the hormone that actually gets used. Some don't convert T4 into T3 well and have issue with low T3 but high T4 - that's not a problem for you. The one thing to watch out for, if you do have Hashi's, is the swing from hypo to hyper. From what I have heard, that is NOT fun. Try googling it and see it that...
  24. nvsmom
    Yeah... hypothyroidism is a common one around here. It's not a horrible thing, but it can be fiddly to get the dosage of hormones right. It can take a lot of patience since doses can only be adjusted every 6 weeks or so. I was on it for 9 months. It's gluten-free. I had a mild allergic reaction to one dosage amount, and I was never really satisfied...
  25. nvsmom
    I had some labs done, and after being gluten-free for 3 years, some things are changing. My tTG IgA is very normal! Yeah! It was still abnormal at about a year gluten-free, so I was wondering it it was down yet. It was a 4 with a normal range of 0-14.9 (used to be 0-20). I have this disease firmly under control! Woohoo! Vitamin A, which was...
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