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RMJ

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Everything posted by RMJ

  1. RMJ
    That is frustrating! Are you sure that those are the results from the biopsy and not the results from the doctor’s visual observations? I only ask because next day service is technically quite possible, but also quite unusual for biopsy results. Biopsies can miss celiac disease, the damage can be unevenly distributed. You can always go gluten f...
  2. RMJ
    When celiac blood tests were developed, the scientists would take blood samples from people with and without active celiac disease as determined by biopsy, and test those samples on their blood test. They would look at the results, and choose a cutoff for positive vs negative that maximized the number of results that were correct, as based on biopsy results...
  3. RMJ
    I’d say the damage is moderate. You still have villi and in some areas they are normal. In severe damage there is complete villous atrophy. I’m glad you have a definite diagnosis and were diagnosed before it got any worse!
  4. RMJ
    The immunoglobulin A (IgA) test is not a test for celiac disease. It is run to see if you are deficient in total IgA. If someone is deficient in total IgA, negative results in the celiac-specific IgA test can be misleading and the doctor should then order IgG tests. You are not deficient in total IgA, you are a bit high. Probably nothing to worry...
  5. RMJ
    I’m guessing it may be partly because endoscopy/biopsy was a procedure long before the blood tests were available.
  6. RMJ
    PME, I’m also a silent celiac. The only way I know for sure if I’ve had exposure is my once a year celiac antibody tests.
  7. RMJ
    You are correct. Your new GI is not. If you’ve been on a gluten free diet you should have healed and an EGD or blood tests for celiac antibodies will no longer find any signs of celiac disease. Your celiac disease is no longer active, but you still have it. I think you need a new, new GI.
  8. RMJ
    It only takes a day or two to process the biopsies, but how long it takes probably depends on how busy the laboratory is that processed them and how busy the pathologist is who reads them. What is the normal range for your test results? I see in another post that you say it is a high positive. Having several relatives with celiac disease increases...
  9. RMJ
    I think I see the wording in two sentences that is causing the arguments here, I hope no one minds if I try to “referee”: “Nothing breaks down all gliadin before reaching the small intestine.” “GliadinX helps ensure that even small amounts of gliadin do not make it to the small intestine.” In the first sentence, the crucial word is “all”, a...
  10. RMJ
    Serology is results from a blood test. Borderline probably means that her result was above the normal range, i.e. positive, but not way above.
  11. RMJ
    It makes sense that you can now eat dairy products. When the villi are damaged by celiac disease they don’t make the enzyme lactase which is needed to digest the sugar in milk. When the villi heal, lactase can be made again. (Note: some adults without celiac disease still don’t make lactase, which is why lactose intolerance is common). Can’t help ...
  12. RMJ
    Good catch on noticing the different reference ranges. Numerical results from different labs can’t be compared. The units they use are not standardized and there is no way to convert one to the other. In the first result your positive is six times the upper limit for normal and in the second result your positive is less than twice the upper limit. ...
  13. RMJ
    Congratulations on significantly lower tTG IgA results! You only posted the tTG results before. Have you had the Gliadin Ab IgA tested before? If not, maybe it was really high, unknown to you, and this is a lot lower! My tTG results normalized before my deamidated gliadin peptide results.
  14. RMJ
    I don’t think there is a standard interval but 6 months should be good.
  15. RMJ
    Many lab results for blood tests are reported with units of a weight divided by a volume, for example milligrams per milliliter (mg/mL). To report this way, individual results must be compared to results obtained with standards with known amounts of material. Take total IgA antibody for example. IgA can be highly purified from blood and measured to create...
  16. RMJ
    Celiac antibody results are not reported in absolute units, so cannot be compared from lab to lab. (If you want me to explain more about units I can - just ask. I used to develop tests similar to these and don’t know how much of a nerd to be on a forum). For your earlier results, your result was 19, and positive was greater than 10. Your result was a...
  17. RMJ
    The endoscopy is a good choice. Be sure to keep eating plenty of gluten until then. Please let us know the results!
  18. RMJ
    “Duodenal biopsy R/O Celiac” means Duodenal biopsy to rule out celiac. This information helps the pathologist know that he was to look for celiac damage. Since he mentioned Giardia and other microorganisms it means that he also looked for things besides celiac disease.
  19. RMJ
    I just looked them up - they’re even certified gluten free! Each product has a spot to click to get a list of ingredients and nutritional information. Allergen information Products
  20. RMJ
    The Ttg IgA is only one of four possible antibody tests for celiac. There is also Ttg IgG (which should be run if your total IgA is low, DGP IgA and DGP IgG. Some people are only positive on the DGP blood tests. (Deamidated gliadin peptides).
  21. RMJ
    It should prevent damage that would otherwise be caused by the contaminating amounts of gluten in the meal eaten along with taking it. Some people, including doctors, are against it because it doesn’t cure celiac disease, or because they think people will take it and not try to be gluten free. I think us celiac patients are smart enough to use it appropriately! ...
  22. RMJ
    I use it when I have to eat out (when I visit my father) but I’m a silent celiac so can’t say from first hand experience if it works or not. I’ve read some of the scientific studies and feel good about it from them.
  23. RMJ
    The company that makes GliadinX has gotten the raw ingredients and should have it available by early to mid-May, per their Facebook page.
  24. RMJ
    I haven’t experienced any side effects. I’ve been taking it for 1-1/2 years so far. I haven’t fallen all the way to the ground - my dog sometimes trips me but I recover my balance before hitting the ground. I think that “do you have a pet” should be one of the questions doctors ask when evaluating fall risks. Your caution is warranted. There definitel...
  25. RMJ
    I also try to avoid meds and I have a PhD in Pharmacology! I resisted Fosamax for years when doctors wanted to prescribe it for osteopenia. But when my Dexascan values finally hit osteoporosis and my doctor started listing my risk factors, I read up on the Fosamax mode of action and finally gave in. It is better than the first generation bisphosphonates...
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