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nvsmom

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Latest Celiac Disease News & Research:

Everything posted by nvsmom

  1. nvsmom
    Ditto the others. a baby sling and a playgroup were life savers to me.. My kids went everywhere with me (they still do - they're homeschooled LOL) so I know how much a few minutes of alone time can mean. (hugs) Best wishes.
  2. nvsmom
  3. nvsmom
    You might ask if you could have his nutrient levels tested. Celiacs and those with NCGS are often low in calcium, potassium, iron, ferritin, B12, D, zinc, and (I think) folate. Perhaps ask if he has a positive response to the gluten-free diet, if he would be willing to diagnose your son with NCGS (for future school accommodations and such). Good luck...
  4. nvsmom
    I have heard (no links to back this up) that a two week gluten challenge is usually considered adequate. I hope it works well for you. Good luck. I hope it's not too hard on you.
  5. nvsmom
    I agree that you could still have celiac or non-celiac gluten sensitivity (NCGS), which has all the same nasty symptoms minus the villi damage. If you choose not to pursue celiac blood tests, I recommend staying gluten-free since it was helping. I am lactose intolerant and my immediate symptoms are the same as a glutening for me: stomach pain, bloating...
  6. nvsmom
    You'll need a normal range to interpret that result. Some ranges go to 20, others to 10, and some deal with decimals - it really varies from lab to lab. Perhaps you can contact that lab and ask for the reference range? If you have been gluten-free for a long time and have largely healed and recovered, I doubt being glutened three months ago will affect...
  7. nvsmom
    Unfortunately, I know of nothing else that causes villi damage other than celiac disease. If you have damage that was found on a biopsy, it is most likely celiac disease. Doctors like to call the endoscopic biopsy the "gold standard" of celiac diagnosing. Plus, you have some pretty classic celiac disease symptoms... It's all pointing in one direction. ...
  8. nvsmom
    I think that all of the symptoms you listed are symptoms of celiac disease or non-celiac gluten sensitivity (NCGS), except possibly dry skin... I am not sure of that. If you were not already gluten-free, I would suggest getting tested. As it is, I would try to give the diet more time. Some of the unlucky ones takes more than a year to recover, you could...
  9. nvsmom
    It seems I think you already know what bothers you: wheat, all beers, and gluten. I don't think you need to make yourself sick in order to confirm what you already know. All celiacs are sensitive to minute amounts of gluten, we just have different types of reactions to it: Joe might get headaches, Jill might get stomach aches and bloat, Billy...
  10. nvsmom
    Oh, I forgot to add that some kids seem to have issues with breast milk if the parent is eating gluten. You might want to get tested too (it's genetic) and then go gluten-free as well.
  11. nvsmom
    I would consider testing too. the tests are: DGP IgA and DGP IgG (best test for kids) tTG IgA and tTG IgG total serum IgA AGA IgA and AGA IgG (test for gliadin sensitivity) EMA IgA (detects advanced villi damage - rarely positive in kids The first three test would probably be the best for celiac disease testing in kids. She must be eating gluten...
  12. nvsmom
    Yep. Ditto. Bring your own food. Ideally, if it is similar to other's food, they won't notice. If you want to barbque, bring tinfoil to put your own safe meat onto so it won't touch the grill. I find it helps (in my family) to go with pre-emptive sweeteness: "Thank you for helping me keep my food safe. I know it is such a hassle to feed me. you are so...
  13. nvsmom
    Thyroiditis (thyroid problems) are difficult to diagnose according to us, the patients. A doctor will usually just test the TSH and if it falls into normal range they declare you fine. The problem with that is that reference ranges are set up to include 95% of the population but up the 10% of people have a thyroid problem... they are missing a lot of people...
  14. nvsmom
    Welcome to the board. He's right, celiac and Hashis are linked. About 5% of Hashi's patients have celiac disease compared to less than 1% of the regular population. Some celiacs do not have positive blood work. It appears to be more common in kids. What tests were done? The DGP IgA and DGP IgG are the best tests for kids. Doctors usually give the...
  15. nvsmom
    I saw Dr J, the orthomolecular doctor, today. He was the one who ran the IGF-1 test but said nothing about it. I told him my concern and he seemed to not be worried but he did check symptoms. He blew it off a bit but he did order a retest, so I guess that is something. The problem with a retest is,if it comes back normal this time, which test is actually...
  16. nvsmom
    The tTG, DGP, and EMA tests indicate that damage is being done to the intestines - it's what they do. If she was positive in the Iga version of those tests, then it is really really likely that the damage is in the intestines, and not elsewhere, because IgA is from the areas in the body with mucosal linings. ei. the intestines. Damage can be spotty though...
  17. nvsmom
    Poor thing. I had chronic "C" since babyhood too. Going gluten-free helped clear it up (thyroid problems slowed that down though). She has so many symptoms of celiac disease or non-celiac gluten intolerance (NCGS)... I hope she will be gluten-free inspite of what any tests show. You could probably put her on a lighter gluten diet until the GI appointement...
  18. nvsmom
    Gluten sensitivity can hurt the brain creating damage that is visible on an MRI. There are a couple of people on this board who had doctors thinking they had MS because of the damage done. I believe Ravenwoodglass is one who had visible damage.
  19. nvsmom
    My reactions tend to vary according to how much gluten and what type (although as the others said, any small amount will hurt). A beer would cause me to ballon up, get a headache and stomach ache, pancakes gave me pain. I was accidentally glutening myself this winter with some fries that had wheat starch in them. I was making them for my boys and would eat...
  20. nvsmom
    Hypothyroidism can affect the cycles. It can cause irregularity, spotting, heavier menstration, as well as "C'. It could all be coincidence though. I usually get pain when I am ovulating (about 12 days before my period). it was usually on one side or the other. It will sometimes be enough to wake me at night or for me to take an tylenol.... Mad it easy...
  21. nvsmom
    (hugs) His tTG could still be high due to autoimmune thyroid problems and/or celiac disease. It can take years for tTG to go back to normal after starting the gluten-free diet. Plus, getting thyroid meds right doesn't neccessarily mean that the thyroid is no longer being damaged. It will slow the damage in some cases, but it doesn't always stop it. Take...
  22. nvsmom
    A biscuit... LOL I'm glad it went well. I hope your results come in early.
  23. nvsmom
    (hugs) It's frutrating how doctors treat people. Not all doctors, but many that I have dealt with seem to forget that their 15 minutes spent with us affects all of our everyday lives - it's not just a 15 minute snapshot for us. My advice would be: Wait for the biopsy without murdering your GI. It seems to me that most people who have the endoscopy are...
  24. nvsmom
    LOL at Arlene! I suppose that could be true for a few people but it took me 38 years to figure it out and I barely believed it at first. It is mostly bunk IMO.
  25. nvsmom
    It is called Pacific Natural Foods, Organic Cream of Mushroom Condensed Soup. It comes in a small brown/beige carton that is shorter than the typical soup can. It is expensive but I like to have it on and for quick meals in a pinch. I found it in the natural foods section at Superstore - this is in Canada.
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