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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    You probably are right that the doctors will be reluctant to give a diagnosis on a "weak positive" with other negative tests.... It will really depend on your doctor and how up to date they are on that DGP test. Even celiacs who have a fine total serum IgA level can have negative IgA based tests (tTG IgA, DGP IgA, EMA IgA) for unknown reasons, and vice...
  2. nvsmom
    I agree that the thyroid could be something to check. TSH, free T3 and T4, TPO ab are good tests. Some of those symptoms could be harmless or related to something else. I've been gluten-free for almost 2 years and my ears ring constantly; if it's quiet, I hear them. Light headedness has always been an issue for me too...You might as well look into possible...
  3. nvsmom
    Awesome! I love good news.
  4. nvsmom
    Occasionally a doctor will do an endoscopy instead of the blood tests if the 8-12 week gluten challenge is too much for their patient's health to endure. The endoscopic biopsy only requires 2-4 weeks for an accurate test, but I am guessing it will be tough to get a doctor to agree to do it before the blood tests. Good luck with the gluten-free diet. ...
  5. nvsmom
    i think celiac disease could be a possibility for your family. That DGP IgG test is very specific to celiac disease. If you look at Open Original Shared Link (on page 12) you can see that the specificity of the DGP IgG for celiac disease is 99-100%. That means that up to 1% of the time, at the most, a positive DGP IgG is caused by something other than...
  6. nvsmom
    A food and symptom journal may help you keep track of improvements or notice any other foods that bother (like dairy - about half of all celiacs are lactose intolerant at diagnosis). The changes are slow to come, and in the first three months there can be lots of backsliding, but after 6 months most people are noticeably better. Best wishes!
  7. nvsmom
    I agree. As a general rule, single ingredient food is fine. Anything cooked should be questioned though because who knows what the seasoning had in it that was sprinkled on the green beans. KWIM? I often ask to read a label when in doubt. If I'm still not sure, I skip it.
  8. nvsmom
    I meant more along the lines of systemic inflammation, but some with NCGS show intestinal inflammation as well. I did not know that intetsinal inflammmation was linked to low IgA - interesting! Well, maybe not for you. LOL Good luck with the diet.
  9. nvsmom
    Welcome to the board, Matt. I agree with the others - all good advice. Testing can be helpful but not everyone can make it through the 8-12 week gluten challenge; 2-3 months of making yourself sick is a looonnnnggg time... reminds me of my pregnancies. LOL Either way, you know treatment for celiac disease and for non-celiac gluten intolerance (NCGI...
  10. nvsmom
    LOL
  11. nvsmom
    Your English is better than mine. I agree that you have symptoms of celiac disease. An elevated DGP IgA is 93-97% specific to celiac disease as see on page 12 of this report: Open Original Shared Link That means that 4-7% of all positive DGP IgA tests are possibly caused by something else. I'm afraid I am not sure what the other causes would be, but...
  12. nvsmom
    LOL Dr House would be handy here.
  13. nvsmom
    My thyroiditis was diagnosed at the same time as my celiac disease so I can not know if my dosage would hve been different if untreated. I sort of doubt it as I am on an almost full replacement dose now.
  14. nvsmom
    Yep, that's a hard situation. I agree with the others. All you can do is hang in there, watch out for yourself, and try to (gently) educate her. Best wishes to you, I hope it gets a little easier soon.
  15. nvsmom
    Lara bars, nuts and chocolate chips or trail mix, pepperoni sticks, chai tea with coconut cream.... Mmmmm I have one son who's favourite snack is any fruit, cucumbers, and Chex. Another son loves coconut flour muffins, rice crackers, nuts, and chips. And my youngest will eat almost anything (bless him LOL).
  16. nvsmom
    I've been told that a couple of really good popsicles can help recovery be a bunch smoother. The most common blood tests are: tTG IgA and tTG IgG DGP IgA and DGP IgG (Excellent tests for kids and early celiacs - try to have them run if possible) EMA IgA (generally positive in more advanced cases) total serum IgA (control test) AGA IgA and AGA IgG...
  17. nvsmom
    I do not believe I implied that they were making it up. I meant to imply that they could be wrong even though Fasano may fully believe that he is correct. Mistakes happen. It could be Fasano making an error or it could be the other side. A summary is not enough for me on this to discount the opposing research. Fasano may be right, but I also see evidence...
  18. nvsmom
    Sorry about your Grandma. But I'm glad everything else is looking up for you.
  19. nvsmom
    I agree. You might as well go for it and hopefully get more answers. It could still be celiac disease causing it (my C did not improve until almost 10 months gluten-free) but the only way to determine if it is celiac disease is wait... and wait and wait. You might as well check out that avenue in the meantime. I hope it goes better for you this time...
  20. nvsmom
    That's too bad. I was hoping to see Dr Fasano's research or paper on this topic. I'm curious as to why he discounts the DQ9... I'd like to know his reasoning. I don't feel comfortable trusting this (DQ2 and 8 being the only celiac disease linked genes) without knowing more. Otherwise, to me it feels like an act of faith to assume he is definitely correct...
  21. nvsmom
    I agree. It could be either. One month is is still very early (although it might feel like forever ) and many people find symptoms reappear in the first 3 months or so, some need 6 or 12 months before symptoms stop cropping up.... Or you might have been glutened. Either way, I hope you feel better soon.
  22. nvsmom
    LOL I'm normally not a huge fan of about.com, but in Open Original Shared Link she quotes Dr Fasano (celiac expert) as saying: In gluten sensitivity, the innate immune system -- an older part of the immune system and the body's first line of defense against invaders -- responds to gluten ingestion by fighting the gluten directly. That creates inflammation...
  23. nvsmom
    Thanks. I've read that one before... but which is right? All the sources are good. Can we know which one is correct right now without taking a leap of faith? KWIM?
  24. nvsmom
    Hypotension (low BP) is definitely a symptom of celiac disease. This site lists it third: Open Original Shared Link I personally have had hypotension since I was very young. I also have postural hypotension, which mean my BP drops when I get up or start moving. I've fainted a few times, and have developed tunnel vison/temporary loss of vision hundreds of...
  25. nvsmom
    I was wondering if anyone has the link for Dr F's research that shows DQ2 and DQ8 are the only possible genes linked to celiac disease? There is other (conflicting) info out there, so I would not trust one man, Dr Fasano, to have it 100% right. KWIM? Think of Ancel Keys who was the "leading expert" who created the low fat higher carb craze to treat heart...
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