Advanced Members
  • Content count

  • Joined

  • Last visited

  • Days Won


nvsmom last won the day on January 2 2016

nvsmom had the most liked content!

Community Reputation

332 Excellent

About nvsmom

  • Rank

Profile Information

  • Gender
    Not Telling

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. My kids did not have a positive blood test but I am a celiac and they had symptoms so they are now all gluten-free. Symptoms included stomach aches, diarrhea, headaches, moodiness and lack of concentration.
  2. Those can be symptoms of celiac disease. No doubt about that. The numbness is neuropathy, which occurs in some celiacs and can often be slow to improve. Anxiety is a common symptom, as is fatty stools and fatigue. Even the mri lesions are sometimes seen in celiacs. I wouldn't be surprised if you do have celiac disease but unfortunately you are right, you need to resume eating gluten for the tests to be accurate. The blood tests, including tissue transglutiminase IgA and IgG, deaminated gliadin peptides IgA and IgG, endomysial antibodies IgA (and the total serum IgA control test) all require 8-12 weeks of 1-2 slices of bread per day. The biopsy is a bit better and only needs 2-4 weeks. it is possible you have non-celiac gluten intolerance (NCGI). The symptoms are often the same as celiac disease but there is no diagnostic blood test available. Either way, it sounds like you should stay gluten-free. welcome to the board.
  3. Sounds like an interesting idea. I hope they develop it.
  4. nvsmom

    ANA tests - different results

    I have had elevated ANA in the past and then other times it is negative. No idea why. ANA is a titre test so that might explain the +. A normal ANA is 1:10, 1:20, 1:40 and sometimes 1:80. The 1:80 is positive in some labs and negative in other; that may be the + test result. 1:160 and 1:320 are positive too. 1:640 or 1:1280 are quite high. a positive ANA just means your immune system is acting up. It could be celiac disease related, hashi's or some other issue. There are different ANA patterns and soe are more specific to certain health issues than others. My positive ANAs were always 1:160 and speckled. 1:80 is my normal but can be considered positive in some places. vitamin D deficiency is common. In fact, my city will not even test for it anymore because most are low or deficient. D drops or sublingual tablets work the best. My doctor likes his patients to take up to 10,000 IU per day. hope you get answers.
  5. Double check which celiac tests were done. Because you are IgA deficient (5% of celiacs are) all of your IgA based celiac tests (tTG IgA etc) will probably be negative even if you are a celiac. The tests you need are the tTG IgG, DGP IgG, EMA IgG and maybe the older AGA IgG. Good luck!
  6. My first symptoms started in early childhood. Some symptoms waxed and waned and some just got worse once they developed. My guess for me is about 38 years to diagnosis? Doctors are getting better at diagnosing it sooner. There is something to be said for having a "trendy" disease. JK
  7. They may be mild symptoms, but those are symptoms of celiac disease. In fact, anemia is now thought to be the most common symptom of celiac disease. There are 300 symptoms of celiac disease: http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf Anxiety and cognitive issues are some of the slower symptoms to respond to a gluten-free diet. That's great if you've had improvements already. It looks like you may have non-celiac gluten intolerance (NCGI) or celiac disease. To be tested for ce you need to be eating gluten in the 8-12 weeks prior to testing so if you went gluten-free recently, you may want to consider resuming the consumption of gluten and getting tested. These are the tests: tTG IgA and tTG IgA (tissue transglutaminase) DGP IgA and DGP IgG (deaminated gliadin peptides) EMA IgA (endomysial antibodies) toal serum IgA control test AGA IgA and AGA IgG (older anti-gliadin antibodies) Good luck!
  8. Ditto. That's a low IgA, more commonly found among celiacs, so make sure the doctor uses IgG basaed tests (DGP IgG, tTG IgG, EMA IgG, and maybe the older AGA IgG. Best wishes.
  9. Did you get all the tests done? This report goes through them all: http://www.worldgastroenterology.org/guidelines/global-guidelines/celiac-disease/celiac-disease-english One negative test is pretty common which is why multiple tests are best. You have the positive genes, which 30% of the world also has. Only about 1 in 40 of those will develop celiac disease though. The genetic tests have not yet been linked to NCGI though. At this point, it could be either. You can either go strictly gluten-free or do the tests and suffer through the gluten challenge. Neither are great options. I would advise you to get your kids checked and then try the gluten-free diet for a good 6 months if they have symptoms. Going gluten-free won't hurt them and could help them if gluten is the issue. BTW, my kids were negative but their health improved remarkably after going gluten-free. Good luck!
  10. I would guess that he does in fact have celiac disease. That is WAY too many coincidences. Plus the tTG IgA is quite a specific test. It has a false positive rate of only about 5%, and those are generally weak positives - 200 is far from weak. And those weak false negatives are caused by something else, usually hashimoto's, T1D, crohn's, colitis, liver disease or a serious infection. Something causes a positive. Remember, a positive result then means that there is a 95% chance that he has celiac disease. This report has more info on the tests. http://www.worldgastroenterology.org/guidelines/global-guidelines/celiac-disease/celiac-disease-english I agree that getting more tests done could be helpful if you want to confirm the diagnosis. The more tests the better since celiac disease tests are not that sensitive and can miss up to 25% of all celiacs. Do remember that a negative biopsy does not rule out celiac disease. It just doesn't support the diagnosis! Biopsies can miss up to 1 in 5 celiacs; that's 20%! It isn't uncommon at all. False negatives become more likely if the doctor did not sample widely, took fewer than 6 samples, or if the patient was gluten-free. I would push for the diagnosis. Fasano (a celiac expert) likes to recommend that a patient meet 4 out of 5 criteria for a diagnosis: 1. Symptoms of celiac disease 2. positive blood tests 3. Positive biopsy 4. positive genetic tests (DQ2 and/or DQ8) 5. Positive response to the gluten-free diet http://www.ncbi.nlm.nih.gov/pubmed/20670718 It sounds like he had symptoms and a positive blood test, and I would bet money on a positive genetic test. How about a gluten free trial of 1 year and then retest to see how much the autoantibodies have come down? That would be proof right there... although it could be hard with the ex. Try to get those other tests done first, and doctor shop to get the diagnosis if you have to. Good luck!
  11. Welcome to the board Do you know what test your daughter had positive? Low IgA is not a test for celiac but it is much more common in celiacs than others. I think celiacs are low in IgA 1/20 and everyone else is something along the lines of 1 in 700. A low IgA will invalidate the tissue transglutaminse IgA, deaminated Gliadin IgA, and enodomysial antibodies IgA, so the doctor would have instead had to run the tTG IgG, DGP IgG and EMA IgG. Was one of those positive? If those tests weren't done, don't go gluten-free yet, but get them done first. One positive test, especially with symptoms and a celiac mother, should trump and negative test. The blood tests can miss up to 1 in 4 celiacs and the biopsy isn't much better at 1 in 5 getting a false negative. That happens with patchy damage, not wide sampling or less than 6 samples being taken... or just bad luck. I don't understand why the doctor wants to re-biospy in a year after living gluten-free. She would be healed by then, and showed no damage to begin with so they should be the same. Seems odd. If you can't get the IgG tests run, and you suspect celiac disease, perhaps make her gluten-free anyways. My kids were all negative but two of them had symptoms so we are now all gluten-free, and their health improved. They could be celiacs, or it could be a coincidence (doubt it) but either way they are healthier. Best wishes.
  12. nvsmom

    Yes, another newbie here!

    Welcome to the board. I agree that getting the blood tests done might be a good idea before you have been off gluten for too long. Ask for the the tissue transglutaminas IgA and IgG, deaminated gliadin peptidea IgA and IgG, endomysial antibodies IgA, total serum IgA and maybe the old anti-gliadin antibodies tests. As for withdrawal, it can make some symptoms worse. It's a pretty short term issue though so it should be gone with a few weeks. I experienced it too and remember extreme fatigue, crankiness and a crazy migraine. Keep in mind that going gluten-free is not a quick fix. Some symptoms will get worse before they get better, some symptoms yo-yo good to bad for a few months, and some symptoms may take a few months or year to get better. If you are going strictly gluten-free, give the diet a good six months. Best wishes.
  13. Immunoglobulin A is not a celiac test. It is a control test to see if you are low in IgA because low IgA is much more common among celiacs (1/20) than it is in the regular population (1 in 100's). Low IgA means your IgA based celiac tests (ttG IgA, DGP IgA, EMA IgA) will be negative even if you are a celiac. Unfortunately, the DGP IgG and ttG IgG (especially) are not overly sensitive celiac tests. There is a small chance that you have celiac disease in spite of those negatives. If you suspect celiac disease, and you can handle not going gluten-free yet, you may want to push for the endoscopic biopsy. Make sure they take at least 6 samples. If all else fails you could try the gluten-free diet for 6 months or so and see how you do on it (after all testing is complete). Good luck!
  14. I agree that you have celiac disease. Without a doubt. IMO, you could take or leave the biopsy. Biopsies do have a false negative rate that can be as high as 20%. Make sure you have at LEAST 6 samples taken if you get it done. If it does end up negative some doctors will say you don't have celiac disease. It could happen (but it is unlikely). Do remember that a negative test does not discount the positive tests, just like the negative tTG IgG did not discount the other tests. A negative test at this point just does not support a celiac disease diagnosis. That's all. It still looks like you have it... Four out of five tests positive is quite unusual. One or two positives is much more the norm. Let us know what you do. :)