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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    We have people around here who had Marsh stage III and still had negative blood tests. We also have some with no damage found that had very high blood test results. Damage, or lack thereof, to the intestines does not always, or even usually, correlate to the blood test results.
  2. nvsmom
    I agree, it is most likely celiac. That DGP IgG is especially telling, the specificity of that is about 100% as seen Open Original Shared Link. If the endoscopic biopsy shows nothing (it misses up to 20% of celiacs) you could always do a biopsy on the rash area. To biopsy DH, a sample is taken from beside the rash... but I doubt you need more confirmation...
  3. nvsmom
    I think being called a hypochondriac should be a symptom of celiac disease - there is a reason it takes ten years for a celiac to get a diagnosis! LOL. Same thing with IBS, probably half of us have been told we had that. Try not to minimize your symptoms when you see the doctor. Bring the list you made here and I am pretty sure that he will see the logic...
  4. nvsmom
    Welcome to the board. . Celiac symptoms can be subtle or absent entirely. It is a good idea to get tested before it becomes extreme. I had pretty mild symptoms for the first 20 ears of my life. Just stomachaches and constipation with the occasional headache or joint pain, then I suddenly developed another autoimmune disease that almost killed me. ...
  5. nvsmom
    Oops. That was iPad's autocorrect for a mistyped "her".
  6. nvsmom
    Genetic testing for re is a good idea. If you can not get that done then i would see if the doctor will treat her as if you are a confirmed celac (I forgot you did not have a diagnosis) if she is continuing to eat gluten. She will be safer that way, especially since she already has one autoimmune disease. The safest route would be to keep her gluten-free...
  7. nvsmom
    So true! I remember meeting someone who wa trying to figure out her problems and she did the Biocard test which came back mildly positive. She then went to the doctor and everything came back negative. A couple of months later she discovered that she had Lyme disease and has been feeling better after being treated. Nasty ticks...
  8. nvsmom
    Welcome to the board. It sounds like you were tentatively diagnosed with (early) celiac disease by your doctor. He didn't recommend the gluten-free diet? Did he have any other ideas what it could be? When your retesting is done, if it remains inconclusive, you may want to try the gluten-free diet for a few (3-6) months and see if anything improves...
  9. nvsmom

    ARCHIVED So Discouraged

    nvsmom replied to across's topic in Super Sensitive People

    Some people do take a very long time for their autoantibodies to come down, although it isn't common. I think it was Gottaski who took about 3 years for her to stop making autoantibodies and to have a normal endoscopy. That is at the extreme end, but there are quite a few that take over a year to normalize; I was getting close to normal a year ago but I...
  10. nvsmom
    I hear you about the doctors. Unless I need surgery or am dying, I'm not much of a fan of them either. LOL There are a few benefits to having a celiac disease diagnosis. One is that some people find it easier to stay 100% gluten-free for life if the diet is medically needed, otherwise those people might cheat or not take cross contamination very seriously...
  11. nvsmom
    I make this every other day and my boys reheat them from frozen when they need them. Pancakes 1/4c melted coconut oil or butter 1 2/3 c prepared coconut milk ~7 eggs 2 scoops (1/3-1/2 c) protein powder (I use chocolate Vega) 1 tsp cinnamon 1 tsp vanilla dash salt 1 tsp baking powder 1/4 c hemp seeds 1/2 c (golden) flax meal 1/2 c coconut...
  12. nvsmom

    ARCHIVED Time To Lose

    nvsmom replied to nvsmom's topic in Related Issues & Disorders

    Sounds good to me! I may do better with company. Or not... I ate some candy. Darn it. I think I had 10 of those candies in the last 24 hours. Ugh. I do feel gross, and hubby has hidden it for me... somewhere, so hopefully I can get back on track. LOL Man! I didn't even make 24 hours!! LOL Tomorrow I will begin sugar withdrawal. Can't wait...
  13. nvsmom
    In our house we let the kids eat the safe (gluten-free and nut free) candy that night and then we let them keep 10 candies and they trade the rest for a toy or cash. Edited to add that American Smarties that Cyclinglady mentioned are the same as Canadian Rockets, which are both gluten-free. Canadian Nestle Smarties are chocolates which are not gluten...
  14. nvsmom
    Hormones can be affected by celiac disease but it's hard to say if that is the cause until you have been gluten-free many many months and your levels have come up. Sometimes things don't bounce back after going gluten-free and that can be because it wasn't caused by celiac disease or because it is not something that you can improve again. My testosterone...
  15. nvsmom
    Biosil is a supplement that is supposed to help with keeping hair healthy. I'm not sure if it helped me so I stopped taking it and my hair has gone downhill again... Hmmm... I better rethink that one. LOL I use gluten-free shampoo but not because on gluten on my skin (gluten has shown to be too large to be absorbed by skin) but because I often seem...
  16. nvsmom
    Welcome to the board. And ditto everything Bartfull wrote. Withdrawal can be nasty. I don't know why it happens but about a third of all celiacs end up feeling really poorly in those first few weeks. I still remember that headache. Ouch! I'm glad that you are aware that many gluten-free substitute foods are not the healthiest stuff out there...
  17. nvsmom
    Welcome to the board. Those symptoms definitely could be celiac disease or non-celiac gluten sensitivity (NCGS). I wouldn't be surprised if you start feeling better on the gluten-free diet, but there can be harm in starting the diet before your celiac disease testing is done. In order to test for celiac disease you must be eating gluten (1-2 slices...
  18. nvsmom
    The gluten-free Kid is good but it is aimed at older kids. No More Cupcakes & Tummy Aches is cute. Eating Gluten Free with Emily is also a good book. Have you had your 3 year old tested too? celiac disease tends to run in families so her risk of contracting it is about 10%, but some families it runs much higher. If her sibling has celiac disease...
  19. nvsmom
    Eek! Don't listen to that doctor. A positive EMA IgA and a positive tTG IgA (or tTG IgG) is definitely a celiac diagnosis - in fact I had those two positive tests and my doctor diagnosed me on the spot. Look at thisOpen Original Shared Link for how specific to celiac disease those two tests are - combined they are considered conclusive. See the top of page...
  20. nvsmom
    I am glad she is fine. . Remember that her testing is not complete though, she will need to be retested every couple of years or sooner if she develops symptoms. celiac disease can develop at any time of life and with an immediate family member who is a celiac, she will continue to be at high risk of developing celiac disease. But the odds are in...
  21. nvsmom
    That's right, you an't be just a little bit pregnant. LOL . Welcome to the board. Those celiac tests don't catch everyone. The blood tests can miss up to 25% of all celacs and the endoscopy misses as many as 1 in 5 celiacs. Sometimes this is aused by incorrect testing (not a long enough gluten challenge or not enough biopsy samples taken) but other...
  22. nvsmom

    ARCHIVED Time To Lose

    nvsmom replied to nvsmom's topic in Related Issues & Disorders

    LOL Thanks ladies. It's always helpful to hear of others in the same boat! I'm not sure what weight I'm starting at. My scale's battery died a couple of months ago and I keep "conveniently forgetting" to replace it. I'll take some measurements tomorrow... It's Halloween and I need a good scare. I'll weigh myself.... eventually. I'm starting...
  23. nvsmom
    Welcome to the board. For genetic tests that place one in the high risk group for celiac disease are the DQ2 and DQ8 genes. It looks like you have the DQ2 gene which means you are one of the 30% of the world's population who is at an increased risk of having celiac disease. I think it is somewhere around 97% of all celiacs have the DQ2 or DQ8 genes...
  24. nvsmom
    To me, lactose intolerance feels quite a bit like a gluten sensitivity when it comes to my gut - bloating, pain, constipation or diarrhea are often the result of consuming milk for me. About 50% of celiacs are lactose intolerant when they are diagnosed. After many months, or even years, many of those regain the ability to consume milk after their intestinal...
  25. nvsmom
    Yes, darn it! Me too. It thickens up a bit for a few months and then it sheds again (probably due partially to Hashi's). I try to comb my hair pretty flat so it is a bit less noticeable...and I've started buying hats. LOL I've got a thin spot in the back too so my part goes down the back of my head. Yuck. I'm about 2.5 years gluten-free.
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