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trents

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Everything posted by trents

  1. trents
    Correction in order here. It means one or both of her parents have the genes that make for the potential to develop celiac disease.
  2. trents
    Welcome to the forum, Asm! 1. Many of us are like you. We were diagnosed for reasons not having to do with the classic GI distress normally associated with celiac disease. We call them "silent" celiacs. But despite no GI distress, damage to body systems still accrues. One of them you are already aware of and that is iron deficiency anemia. But there...
  3. trents
    The EMA is a less sensitive test than the tTG-IGA but it does carry a very specific affinity to celiac when it is positive. A negative for that one doesn't change my opinion. Your next logical step is to go back on regular amounts of gluten and arrange for an endoscopy with biopsy. Does the prospect of an endoscopic procedure make you nervous?
  4. trents
    No. I would move onto the endoscopy/biopsy.
  5. trents
    Yes, likely higher. Believe me, we get this same story over and over on the forum. I mean, docs failing to warn their patients not to go on a gluten-free diet until testing is complete. It's very frustrating because it often creates test results that are not definitive. Many docs are just ignorant about gluten related disorders or they have an attitude about...
  6. trents
    According to the Mayo, the gluten challenge preceding the antibody testing should last 6-8 weeks and two weeks for the endoscopy/biopsy.
  7. trents
    So, how long were you back on gluten before the second antibody test?
  8. trents
    Two out of the three antibody tests are positive and you have one gene indicating the potential to develop celiac disease. Yes, I would seek further testing for confirmation but since you have already had the antibody testing done the next logical step is an endoscopy with biopsy. You also have the option of going on a gluten-free diet up until at least two...
  9. trents
    I think it's important to realize that the allergist was operating in an area outside of her expertise. Celiac disease is not an allergy. It is an autoimmune disorder.
  10. trents
    The biopsy is the gold standard for celiac diagnosis. I guess I don't understand why you need more blood antibody testing done.
  11. trents
    Welcome to the forum, Shawn! You are obviously experiencing gluten withdrawal. It is not abnormal. It could last another couple of weeks but could start improving during that time.
  12. trents
    Yes, she certainly could have celiac disease. It would have been helpful to have IGP and DGP antibody tests run as well, especially since she is a young child. Young children's immune system commonly respond atypically to the tTG-IGA test but will throw positives for IGP and DGP testing. The fact that she did throw a positive for the tTG-IGA test is solid...
  13. trents
    In some countries, like the UK, doctors will commonly grant a celiac diagnosis on the blood work alone if the tTG-IGA scorer is 10x normal. In the USA it typically requires a positive tTG-IGA (or another positive celiac antibody in the blood work) followed by a positive biopsy. The tTG-IGA is the "darling" antibody test because it is inexpensive and combines...
  14. trents
    Welcome to the forum, Maxipoo! Well, I strongly disagree with you GI doc about already beginning the gluten-free diet not having any affect on your blood antibody scores. The Mayo Clinic Guidelines for a pretest gluten challenge is the daily consumption of two slices of wheat bread (or the gluten equivalent) until the blood draw is done. You have mixed...
  15. trents
    The endoscopy itself is not unsafe nor is it particularly unpleasant. In the USA it is usually done under conscious sedation. You won't even remember it. Once you have been off gluten for a consideralbe time period it is typical to have stronger reactions once you try to go back on for testing. It might help some to reintroduce it gradually.
  16. trents
    The total IGA is technically with normal range but at the very low end of normal. It is a potential problem.
  17. trents
    Click on the three dots in the upper right corner of a new post window and choose "Edit". The find the paperclip at the bottom. You only have a time window of a few minutes to edit a post or add a photo.
  18. trents
    Welcome to the forum, KISHAB02! Based on the limited data you were able to give us, I would side with the GI doc at this point. Let me explain. First, the "IGA" you refer to is likely what we know as the total IGA score. It cannot be used to diagnose celiac disease. There are also particular IGA tests that should be run to detect celiac disease...
  19. trents
    I would ask for additional celiac antibody testing for your son which would include EMA, Deamidated gliadin peptide (DGP IgA and IgG). It is also possible he has NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celiac disease.
  20. trents
    https://www.medicinenet.com/what_are_the_symptoms_of_candida_in_the_gut/article.htm https://www.mayoclinic.org/diseases-conditions/small-intestinal-bacterial-overgrowth/symptoms-causes/syc-20370168 What made me think of these two possibilities is that by eliminating all grains you have also likely eliminated most of the carbs in your diet.
  21. trents
    It's regrettable that only the tTG-IGA and the total IGA were run. There are several other celiac disease antibody tests that could have been run and should have been run. And then there is the possibility of NCGS which is 10x more common than celiac disease.
  22. trents
    Keep us posted.
  23. trents
    Many restaurants can't provide separate cooking vats and surfaces just to accommodate the celiac population because of space limitations and economics. It is a blessing that some apparently can.
  24. trents
    What the study cited in this article doesn't address is if the participants were "silent" celiacs to begin with.
  25. trents
    My point is, you said "I didn't know gluten ataxia affected absorption', implying that the symptom (ataxia) was a contributing cause to the underlying disease (malabsorption of nutrients) when it would seem to be the other way around.
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