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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
    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.
  2. 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?
  3. 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...
  4. 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!
  5. 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.
  6. 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.
  7. 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.
  8. 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...
  9. 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...
  10. 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.
  11. 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!
  12. 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.
  13. 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...
  14. 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.
  15. 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.
  16. 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...
  17. 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...
  18. RMJ
    If your tissue transglutaminase antibodies normalize after 6-12 months on a strict gluten free diet that would be another indication supporting a diagnosis of celiac disease.
  19. RMJ
    It is unusual not to have numbers, but that doesn’t mean it is wrong! I’m glad you’ll be seeing a GI. Please be sure that the GI knows you are gluten free. Antibody levels go down when a patient is gluten free. We’ve heard plenty of stories on the forum of someone being tested or retested for celiac disease when gluten free and being told they don’t have ...
  20. RMJ
    Next time you buy dog food you might look for some without wheat or barley. I also handle dog food and treats a lot and did this just so I wouldn’t have to worry about that source of gluten. There are a lot of grain free foods out there, and some that only use rice or corn as the carbohydrate.
  21. RMJ
    I think 236.17 is a total IgA result, not a tissue transglutaminase IgA result. 84.5-499 is a reasonable range for total IgA. Tissue transglutaminase IgA results do not have weight per volume (milligrams per deciliter i.e. mg/dL) units. There was another forum member recently whose results were laid out in a very confusing manner on the printout and it...
  22. RMJ
    I don’t think the lactose would be different enough to eliminate lactose intolerance problems. There are different physical options (for example, how fine the powder is) and it is available with or without a water molecule attached to the lactose molecule. There are some pantaparazole formulations without lactose, or perhaps your doctor could prescribe a...
  23. RMJ
    My deamidated gliadin peptide IgA was 143, with a normal range up to 19. Not quite as high as yours, but still high. I’m not sure if this is exactly the same test as yours. Gliadin IgA is an older test, but some labs write that when it is the deamidated gliadin peptide test. High numbers on celiac antibody tests don’t always correlate with severe intestinal dam...
  24. RMJ
    Bob’s Red Mill recommends 1/2 teaspoon xanthan gum per cup of flour for muffins. Your flour mix has 50% more than that.
  25. RMJ
    IF you decide to go gluten free now, you could repeat the celiac antibody test after being gluten free for 6 months to see if the antibody levels decline. However, you must be tested at the same lab that did the original test. Results from different labs usually can’t be compared.
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