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trents

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Everything posted by trents

  1. trents
    Welcome to the forum, httons16! As you may know, CRP is not specific for any particular inflammatory response but is a pretty general indicator of inflammation happening somewhere in the body. But with your calprotection being borderline high it gives cause for concern that the inflammation is in the GI track somewhere. Crohns and IBS are both more common...
  2. trents
    Welcome to the forum, Julie. You are the same age as I was when I was diagnosed about 20 years ago. But it took many years to get the diagnosis from the time there was evidence of having celiac disease. Par for the course, I'm afraid. When you get the results from the blood test, please consider posting the numbers, including the ranges used by the lab for...
  3. trents
    Okay, so the celiac antibody test has already been done. My observation is that doctors in the UK typically only order the tTG-IGA antibody test and not the full celiac panel.
  4. trents
    Anethyste, welcome to the forum! Yes, there is a lot there that points to celiac disease so your next step would be to get antibody testing done specifically designed for diagnosing celiac disease. Here is a primer outlining the tests I am referring to. Ask the doctor to run a "full celiac panel" and not just the tTG-IGA: https://celiac.org/about-celiac...
  5. trents
    Yes, do you have your antibodies retested to see if the hookworm treatment is really doing the job or are you just relying on improvement in symptoms?
  6. trents
    There are freeware apps that will remove pixels from pictures to reduce the data size of the file without dinging quality much. Irfanview is one I'm familiar with.
  7. trents
    Wow! This is fascinating. I remember reading about this in theory but now we have a real live example. Thanks for sharing.
  8. trents
    Someone from the UK has stated on the forum that more recently, the 10x higher level being sufficient for a celiac diagnosis without going through the biopsy was a temporary concession to the stress on the healthcare system caused by COVID and is beginning to be abandoned as things normalize.
  9. trents
    By the way, welcome to the forum, Grace! There is no typical positive tTG-IGA score since there are no industry standards for what are "normal" (i.e., negative) tTG-IGA scores. Each lab develops its own testing process and and so the reference ranges are always peculiar to the lab that analyzed the blood sample. The actual test score has relevance only...
  10. trents
    Your question is a bit confusing but I assume the "false positive" you speak of refers to the serum antibody testing you have already had done. Your tTG-IGA is unequivocally high and the chances of it being caused by something besides celiac disease are not great. False positives in the blood work sometimes happen but with your numbers as high as they are...
  11. trents
    musicalmummy, try attaching those gastroscopy results in a fresh post. You have a limited time windows where you can edit posts or add attachments. This is to discourage scammers who try to get an innocent looking post approved and then try add malicious material to it. Did you notice the note suggesting that "first and second degree relatives get screened...
  12. trents
    Thanks for the additional info. All the antibody tests are unequivocally positive except the tTG-IGG. When the Endomysial Antibody IGA (aka, EMA) is positive that is almost a guarantee that you have celiac disease since it is very specific for celiac disease while being relatively insensitive. Do you have symptoms besides those that were related to the...
  13. trents
    Leah, it would have been more helpful if you had posted the negative vs. positive reference ranges so we could see how high "high" is in relation to normal range. What you probably don't know is that different labs use different reference ranges and that there is no industry standard for this. Having said that, you are positive for every celiac antibody...
  14. trents
    Specifically, what blood tests were suggestive of celiac disease? What is the name of the test or tests that must have been in the positive range and what were the actual numbers, including the reference range for negative vs. positive. Do you have that information and can you post it? Has there also been a biopsy done? You don't mention that in your first...
  15. trents
    Yes, abdominal bloating is one of the most common symptoms of both celiac disease and NCGS. Not sure about swelling in the lower extremities. The swelling in the lower extremities sounds like a fluid retention problem which can be caused by many things. Have you had your cardiac and kidney function checked lately? Lindquist, what is your age?
  16. trents
    It is not safe to take first generation antihistamines like diphenhydramine (benadryl) every day on a long term basis. The second and third generation antihistamines are safe when used that way, however. I have heard of no risks when taken in the prescribed doses. I have taken them everyday for years and so have millions of other people. Life would be unbearable...
  17. trents
    Too much inactivity is not good for your general health.
  18. trents
    Have you tried the newer generation "non drowsy" antihistamines like zyrtec or allegra? Personally, I have found it impractical/impossible to follow a strict low histamine diet. There are just too many food things you have to cut out, including too many things that are truly nutritious. In addition to the non drowsy antihistamines, you might try a DAO supplement...
  19. trents
    Unfortunately, most primary care physicians are woefully lacking in knowledge about celiac disease and fail to tell their patients things like this. And so, many people are left in limbo, wanting to know for sure they have celiac disease (as opposed to Non Celiac Gluten Sensitivitu or NCGS) since they cannot handle the thought of torturing themselves by goin...
  20. trents
    Valid testing requires still eating regular amounts of gluten up to the time of the blood draw. The Mayo Clinic guidelines for a pretest gluten challenge leading up to the day of the blood draw is the daily consumption of 2 slices of wheat bread (or the equivalent amount of gluten) for 6-8 weeks. Sounds like you and other family members have already cut back...
  21. trents
    Okay, sorry. I did not understand you were not asking for yourself but for, I assume from your screen name, your son? How old is he? It can be painful when family and friends are not onboard with the diagnosis of celiac disease but many on this forum have and are struggling with that dynamic. You should read this article that appeared in the forum. I...
  22. trents
    Yogurt is a fermented milk product. The fermentation process alters the protein and the lactose (milk sugar) so that they can cause less problems for those who are intolerant to cow's milk. This is very common. But it sounds like you need to become more consistent in avoiding gluten. This may be of help to you:
  23. trents
    I understand that you want to avoid the pain and damage to your villi. But if you have NCGS, consuming gluten won't damage your villi. It doesn't have to be bread. Just the gluten equivalent of two slices of wheat bread. It could be pasta instead. If you can't or won't eat gluten for the prescribed period then you cannot be tested correctly and...
  24. trents
    But you didn't answer my question. In the weeks before the blood draw to check for celiac antibodies, were you eating a substantial amount of gluten? The Mayo Clinic recommends the daily consumption of two slices of wheat bread daily (or the gluten equivalent) for 6-8 weeks leading up to the blood draw for celiac antibodies. If you were avoiding gluten...
  25. trents
    Welcome to the forum, Lindquist! You have it backwards. If you are gluten intolerant, that would be the reason for your GI distress and headache. Can you be more specific about the tests that were run by your doctor for detecting celiac disease? What were the names of the tests and what were the numerical results and the ranges for the tests as...
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