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trents

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by trents

  1. trents
    I scanned the wiki link you gave. Couldn't tell for sure but providers' payment guidelines gave clues as to where they are located. Doesn't look like there are any worm providers in the USA, maybe one in Mexico. Looks kind of spendy as well. I wonder if you can grow your own.
  2. trents
    I edited my previous post and my edit must have been in progress when your reply was in progress. How long after introduction of the worms does it take for the therapy to be effective?
  3. trents
    If someone was interested in trying this hookworm therapy for celiac disease, how do you go about finding a practitioner who will administer it and do follow-up? I mean, I suppose do it yourself hookworm kits are not yet available on Amazon. Also, dixonpete, in your experience, how long does it take for the therapy to be effective once these critters...
  4. trents
    I read a recent update on the hookworm treatment and the results are far from consistent. They are looking at the variables that might effect outcome and also trying to figure out why and how the mechanism works (at least sometimes) so as to be able to deliver it in a different way.
  5. trents
    Hearing about how you improved on an anti-inflammatory focused diet (FODMAP?) I would suggest researching MCAS (Mast Cell Activation Syndrome) and histamine intolerance. These two are closely related. In the meantime, you have some clues about triggers it seems like as you have experienced remission of symptoms on a focused diet. I cannot do alcohol. It triggers...
  6. 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...
  7. 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...
  8. 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.
  9. 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...
  10. 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?
  11. 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.
  12. trents
    Wow! This is fascinating. I remember reading about this in theory but now we have a real live example. Thanks for sharing.
  13. 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.
  14. 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...
  15. 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...
  16. 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...
  17. 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...
  18. 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...
  19. 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...
  20. 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?
  21. 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...
  22. trents
    Too much inactivity is not good for your general health.
  23. 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...
  24. 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...
  25. 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...
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