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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    Harder cheeses usually have less lactose, and aged cheese have less as well. Open Original Shared Link Your safest bet would be to buy lactose free cheese or switch to dairy free cheese. I wasn't drinking milk when I was diagnosed because I was vaguely aware that milk gave me stomach aches.... that took me a looooong time to figure out because the doctor...
  2. nvsmom
    Lisa (Gottaski) after seeing your post, i thought I would revisit my intial post as well. At the time, I was about 4 months gluten-free, and I was a couple of months into a very bad autoimmune flare too (my hands felt like clubs and I thought I was going to end up bald). It wasn't my finest time. It mostly resolved around Xmas. Hmmm, I don't miss beer...
  3. nvsmom
    I would consider keeping the baby gluten-free - why risk developing an autoimmune disease with horrible symptoms and risk developing more health problems just for the convenience of being able to eat what peers are eating at birthday parties a few times a year? Packing food to share is easy, and to be honest, if he/she is allowed to eat food that the older...
  4. nvsmom
    It sounds like you need to give dairy a bit more time. Maybe try the lactose free foods first like hard cheeses in a few months? Good luck!
  5. nvsmom
    Take a look at the lupus diagnostic criteria in the below link. A patient needs to have at least 4 of the criteria met to be diagnosed with lupus. Open Original Shared Link I suspected that I had lupus. I have arthralgias, hemotalitic abnormalities, have had a positive ANA in the past a few times, mouth ulcers (when the pain hits), and what could be a...
  6. nvsmom
    I skipped the endoscopy too. I had two very positive blood tests, a good response to the gluten-free diet, a family history of celiac disease, and other autoimmune disorders - that was enough for me to go gluten-free. I too sometimes wonder what my villi would have looked like but on the flip side, what if I was one of those patients who ended up more confused...
  7. nvsmom
    Only those with celiac disease will have damaged villi. People with GS have normal villi but can have every awful symptom of celiac disease with the added problem that there is no procedure of blood tests to diagnose it. Did you have the blood tests done? There are some in this forum who had a negative biopsy and positive blood tests, or vice versa...it...
  8. nvsmom
    Your doctor said, "mild celiac"? Sheesh. That's like telling a woman that she is "just a little bit pregnant". You either have it or you don't.... Statements like that can be so misleading when said to a patient uneducated in celiac disease. Sorry, my rant is over. celiac disease can just happen suddenly or symptoms can build slowly over time, even...
  9. nvsmom
    Rant away. . We've all done it a few times. Lol. Good luck!
  10. nvsmom
    I am glad it went well. GERD is sometimes a symptom of celiac disease. I don't know how common it is. I am sure others will know more. I hope your biopsy results are very clear cut and you'll know for certain whether it is celiac disease or NCGI. Best wishes.
  11. nvsmom
    I have used that cake mix with egg whites quite a few times and it turned out fine each time. It's possible I am buying unpasteurized egg whites (I never noticed) but egg whites from a carton can work. That is my boys' favourite type of cake - puffy sugar cake. Yummy. LOL
  12. nvsmom
    When undiagnosed, my celiac symptoms came and went - some years were great and others were miserable. Eventually the bad times were the norm, I developed other life threatening diseases, and I ended up with a lot of pain. If i could go back in time and drop gluten when i was a tiddler, I would. I am absolutely certain that my adult years would have been much...
  13. nvsmom
    I was just the opposite, I was sick with greater frequency, duration and severity of symptoms before going gluten-free. This past year on the gluten-free diet has been the first year that I haven't ended up on antibiotics because of sinus infections or bronchitis. On the other hand, I often have the senstaion of "fighting off" a cold. i get flu-like symptoms...
  14. nvsmom
    You might want to push for deaminated gliadin peptide testing - the DGP IgA and DGP IgG are better at picking up cases of celiac in very young children and are often the first tests to become positive. It might show positive... You could also try the older AGA IgA and AGA IgG (anti-gliadin antibodies) which are less specific and sensitive but could help you...
  15. nvsmom
    If you want to be sure about whether it is celiac disease or Non-Celiac Gluten Intolerance (NCGI) you could push for the biopsy but chances are, after negative blood work, it will be negative too. There is a false negative rate on the blood tests somewhere below 25%, so it is possible that you are one of the minority.... but unlikely. My guess (I'm not...
  16. nvsmom
    I agree, Lisa. I was a bit taken aback when she was describing her life as a "living hell" just because she couldn't eat bread... Huh. The only drug I would consider would be one where they could "turn off" my immune response to gluten - without any side effects. It would be nice to have something I could take when travelling or staying with people so...
  17. nvsmom
    Welcome to the board. Celiac disease is not an allergy; it is actually an autoimmune disease with many symptoms, some of which you have, that attacks the small intestinal villi when gluten is eaten (as I understand it). To get a celiac disease diagnosis from the medical establishment, you need positive blood tests and/or a positive endoscopic biopsy...
  18. nvsmom
    Paul is right, Non-celiac gluten intolerance is much more common than celiac disease and it has basically the same symptoms as celiac, just minus the villi destruction. It could be NCGI, i have seen stats that state it is resent in 6-30% of the population (I've seen 6% sited the most). Because you have Hashimoto's and low B12 , I would say there is a chance...
  19. nvsmom
    I made the house gluten-free too. I'm a celiac and 2 out of 3 of my kids have a gluten intolerance of some sort. It just seemed easier, and more fair to all my kids, if we went entirely gluten-free. I did start off with some seperate and labelled foods like butter and jam and then over 3-5 months I switched everything to gluten-free. I don't think my...
  20. nvsmom
    I'm in Alberta too. My doctor (before i realized doctors aren't all experts on celiac disease - my bad) ordered the "celiac panel" and it was just the tTG IgA, total serum IgA, and EMA IgA; I think they only went ahead with the EMA because I ended up with a high tTG IgA... I am one of the "lucky" ones that had very clear cut lab results. Anyway, I don't...
  21. nvsmom
    ((HUGS)) I think you'll find a lot of us have been lost in the shuffle - you're not alone. We just have to rethink doctors as a tool we use for getting the health care we need... not all tools are created equal... my doctor is a tool too. I think you should make an appointment for your daughter at the same time. Perhaps the doctor will move ahead with...
  22. nvsmom
    In some it could, but in others it could take a year. There is no way of knowing. I would guess that you are not back to zero but that your results would be lower - but that is just my personal guess. If you are newer to celiac disease, recovery is often faster; the younger you are the faster you generally heal too. I would push it back just to have...
  23. nvsmom
    I would say running the full panel is for the best as celiacs often do not show up positive in every test run - especially young kids.
  24. nvsmom
    I did not see if your positive gliadin IgG test was deaminated gliadin peptide (DGP IgG) or the outdated anti-gliadin antibody (AGA IgG). The DGP IgG is one of the most specific tests you can run for celiac disease. It's specificity is 99-100% meaning that if you had 100 people who had a positive DGP IgG test, 99 to 100 of them would be celiacs... it doen...
  25. nvsmom
    If you do go for a colonoscopy, you might want to request an endoscopic biopsy be done at the same time. There are a few members around here whose enlightened doctors did an endoscope at the same time as an exploratory colonoscopy, and they were surprised by a positive endoscopic biopsy. Celiac blood work isn't always positive - I believe there is up to a...
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