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trents

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Everything posted by trents

  1. trents
    You could have NCGS (Non Celiac Gluten Sensitivity) which is 10x more common than celiac disease with many of the same symptoms.
  2. trents
    You could have celiac disease or NCGS (Non Celiac Gluten Sensitity), the latter being 10x more common than the former. They share many of the same symptoms and the antidote is the same, life-long abstinence from gluten. There is no test at the present time for NCGS. It is diagnosed by first ruling out celiac disease. There are also home test kits available...
  3. trents
    It often takes around two years for complete healing of the villi after a truly gluten-free lifestyle is achieved. But there is usually substantial improvement in symptoms and in health issues well before then.
  4. trents
    It is not unusual for GI symptoms to be absent in the celiac population. We call them "silent" celiacs. That can eventually change as more damage is done to the small bowel lining. What led to her diagnosis if she seems to be asymptomatic? Was it the orange in her BM's? Has she had a CBC and a CMP to check for things like anemia or elevated liver enzymes...
  5. trents
    Again let me emphasize that you are not obligated to go forward with the biopsy. There is no doubt in my mind that she has celiac disease. On he other hand, it is only a month away and you say she is in no distress. Concerning the "orange oil" in her stool, if blood was coming from her duodenum (the part celiac disease affects) then I wonder if it would...
  6. trents
    StephD, welcome to the forum! Can you post what the reference ranges are for negative, positive, etc? Different labs use different scales so a number like which you gave needs a context. In the UK if the tTG-IGA is 10x the cutoff for negative, most doctors do not require an further testing, such as a biopsy. There is not much question that your...
  7. trents
    Welcome to the forum, AuroraLake! We are both Washington residents. This might help: There are some celiacs who have DH without damage to the small bowel villi. Yes, there is an appalling lack of knowledge among general practitioners with regard to celiac disease. Many on this forum will attest to that. It is slowly improving.
  8. trents
    Welcome to the forum, huffalynn! Perhaps this will help: Cross contamination issues are tricky for several reasons. One is that some celiacs are more sensitive than others to tiny amounts of gluten. What kicks off a celiac reaction in one person doesn't in another. Another factor is that cross contamination levels will vary from one production...
  9. trents
    Either the chemistry of the chocolate changes or that of some additive like an emulsifier.
  10. trents
    The oat protein avenin must be similar enough to gluten that it triggers the same autoimmune response that gluten does in the small bowel for some celiacs. Dairy is another common gluten mimicar for some celiacs. There are also some medications that blunt the villi.
  11. trents
    What kind of issues do you have? Are you talking about a celiac-like reaction?
  12. trents
    SandyJ, welcome to the forum! It is more common for celiacs to gain weight than lose weight after going gluten-free. But we see both. Joint pain is a known symptom experienced by some celiacs. Are you taking any vitamin and mineral supplements. Have you had your antibodies rechecked since diagnosis to see if you have been successful in...
  13. trents
    Yes, now that I look at the results from 1/21/21 more closely there is strong positive for Deamidated Gliadin Abs and a positive (barely) for tTG-IGG. But the tTG-IGA is negative. Still, not a typical celiac disease antibody result profile I'm thinking.
  14. trents
    The fact that eating gluten-free has not made any significant changes in your blood antibody numbers together with no improvement in your neurological problems after 15 months strongly suggests to me that gluten may not be your problem.
  15. trents
    You seem to be assuming you have a problem with gluten. Besides the neuropathy, do you have other symptoms that could be gluten related? And here is an important question: When you had your initial testing done fro celiac disease, both the antibody test and the biospy, were you already on a gluten free diet? If so, you sabotaged the testing.
  16. trents
    So, putting all this information together I wonder if your neuropathy is not gluten related.
  17. trents
    Yes. https://meddocsonline.org/annals-of-pediatrics/milk-protein-induced-villous-atrophy-and-elevated-serologies-in-four-children-with-celiac-disease-on-a-gluten-free-diet.pdf
  18. trents
    Lactose is the sugar in milk, not the protein (casein). Either can be a problem.
  19. trents
    Okay, thanks for the additional info. I note that your tTG-IGA is within normal range. This is the centerpiece of celiac antibody testing and considered to combine the best test as it combines good sensitivity with good specificity. Other tests are strong in one area and weak in the other. The tTG-IGA can give false negatives when the total IGA (Immunoglobulin...
  20. trents
    Also, some celiacs react to the protein in oats (avenin) and the protein in dairy (casein) the same way they do to gluten. Is your granddaughter still consuming these two food items?
  21. trents
    Sorry about the "son" thing. I was replying to another thread at the same time where that was the context. The centerpiece of IGA testing for celiac disease is the tTG-IGA, which I don't see listed in your posted results. I only see tTG-IGG. The tests that have been run for you suggest you may have low total IGA. The tests you list are also more commonly...
  22. trents
    Okay, got it now! And you are correct. Bowel cancer is actually not common among celiacs, just more common than the general population.
  23. trents
    You are in a tough spot granny! And it's one I can relate to. My wife is a borderline diabetic and one day she did the finger prick test for monitoring her blood sugar while our 7 yr. old grandson was watching. "What are you doing, grandma?," he asked. Of course he was afraid she was hurting herself with the finger pricker. She showed him how small and short...
  24. trents
    "Anybody that u know with Celiac has been doing so well lost dx while eating gluten-free" Say what?
  25. trents
    Those stats must be taken in the context of total population. For example, to say someone is 3x more likely than people in the general population to develop some disease because they have a certain predisposing medical condition does not mean they are likely to get the disease if the incidence of that disease in the general population is already very small...
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