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RMJ

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by RMJ

  1. RMJ
    Before even considering an endoscopy the next step would be a full panel of blood tests for celiac antibodies. TTG IgA and IgG, DGP IgA and IgG, and total IgA (a control to ensure other IgA tests are valid). Some doctors will diagnose based on these tests alone.
  2. RMJ
    I saw one after a few years because I couldn’t get my DGP IgA down to normal range. I got some suggestions that didn’t help, and finally figured it out on my own.
  3. RMJ
    It is very normal to take one or more biopsies, even if the doctor didn’t see anything suspicious with the endoscope.
  4. RMJ
    If you mean the toothpaste tube that should be fine. If actual toothpaste hit the floor I wouldn’t use that bit of paste whether I had celiac disease or not!
  5. RMJ
    As long as the top of the inside of the microwave is clean you should be fine.
  6. RMJ
    The units of measure for this test are not absolute. Each lab uses different units for this test so one has to go by the lab range. An example of what I mean by different units: Imagine someone is measuring length, and one person says something is three bananas long, and another says the same thing is six oranges long.
  7. RMJ
    Yes!
  8. RMJ
    I found that sleeping with a pillow under my knee helped a lot.
  9. RMJ
    You might look up meralgia paresthetica to see if it describes your thigh symptoms. I used to have it, due to a nerve being compressed, and it was worse at night when I was lying flat on my back.
  10. RMJ
    Perhaps your doctor used the term “allergy” because most people understand that better than “celiac disease”? Inflammation in the duodenum plus a positive tissue transglutaminase does sound like celiac disease. Were you told to go gluten free?
  11. RMJ
    The extremely simplified explanation of the biopsy: the only abnormal finding was a mild increase in a type of white blood cells within the layer of cells lining the first part of the small intestine. Hope that helps! This abnormality is typically seen in celiac disease. It is a bit unusual that this is the only thing that was seen, especially...
  12. RMJ
    Your original post said your blood test wasn’t terribly high, but a 46.2 with a reference normal range of <20.0 is a definite positive!
  13. RMJ
    I was not able to get an endoscopy and biopsy when my antibody levels first showed celiac disease. My doctor put “abnormal celiac antibody panel” as my diagnosis. I eventually did get an endoscopy and even after 4 years trying to be gluten free there was some damage and I got the official celiac disease diagnosis.
  14. RMJ
    Some doctors are just very resistant to giving a diagnosis of celiac disease! Hopefully your villi will have healed after two years on a gluten free diet. If this were my doctor I would want to know in advance how she would interpret the results, either with healthy or flattened villi.
  15. RMJ
    The test she had was total IgA (determined by the units and range). In addition to the deamidated gliadin antibody tests that Trents mentioned, she should have TTG (tissue transglutaminase) IgA and IgG tests.
  16. RMJ
    Those units are not the same. The test manufacturers assign arbitrary units for these celiac tests so a LabCorp unit is not the same absolute amount as a Quest unit. It would be best to stick with one lab. Still, going from 32 (with positive >10) to >200 (with positive >15) is probably a significant increase. You may want to be retested at LabCorp...
  17. RMJ
    Different labs use different units so one must only compare to the standard range of the lab that did the test. The units are arbitrary, assigned by the manufacturer of the test. They are NOT a standardized weight per volume unit (such as micrograms per mL). It is normal for some TTG IgA to be detected in people without celiac disease. And as Trents...
  18. RMJ
    “lining appears healthy” sounds like a visual inspection, especially if you were told that on the day of the endoscopy! Biopsy results take longer. Celiac damage can’t always be seen with the endoscope, so you’ll need to wait and see what the biopsy results are.
  19. RMJ
    Luckily you don’t need a doctor’s prescription to go gluten free. You could try going gluten free and then ask your gp to retest your ttg IgA in 6 months. If your symptoms are better and the ttg IgA level goes down that would certainly indicate that gluten is a problem for you!
  20. RMJ
    I hope you’ve found the solution! Please let us know how it goes. I don’t get symptoms (I’m a silent celiac) but my antibody levels respond to prolonged gluten contamination. For example, I discovered I cannot use Bob’s Red Mill gluten free flours, even though they have an excellent reputation in the celiac world and most people can use them.
  21. RMJ
    How do you define strictly gluten free with respect to processed foods? I have a degree in Nutrition Science so I thought all I had to do was read labels and not eat foods with gluten ingredients. For me that wasn’t enough to get all my antibody levels back down to normal ranges. Then I only ate foods labeled gluten free. Still not enough. I have to h...
  22. RMJ
    It would typically take a larger dose than one contamination to raise antibody levels. It would probably also take longer. When diagnosing celiac disease patients are advised to eat gluten for 6 weeks prior to testing for antibodies. Intestinal damage is faster.
  23. RMJ
    At my last routine colonoscopy my gastroenterologist said there was no need to do an endoscopy. He orders my antibody tests, but I’m in a health system where the primary care docs seem to refer to specialists a lot.
  24. RMJ
    Some doctors deal with celiac disease very poorly and don’t really know much about it. I bet your doctor saw the high total IgA level and mistakenly thought you were positive for celiac. When you saw her in person she looked at the results more carefully. Sounds like you know gluten bothers you, and luckily you don’t need a doctor’s prescription to go gl...
  25. RMJ
    Biological responses usually follow a pattern of dose response, that is, the larger the dose, the larger the response within an individual. For immunological responses, like celiac disease, there is wide variability between individuals. So a whole piece of cake will cause more damage than a tiny bit of contamination, but in some people the tiny bit of contamination...
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