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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 find it strange that his doctor took him off of vitamins and supplements. I have never heard before that they can cause elevated PSA levels. In fact, I would think the opposite would be true: https://www.livestrong.com/article/411179-can-vitamins-and-supplements-affect-psa-readings/ Have you and/or your husband researched this issue?
  2. trents
    I would certainly agree with this. Some doctors have this negative attitude toward gluten disorders and consider it all to be a fad diagnosis and "gluten-free" to be the latest fad diet. Many celiacs, including myself, have experienced irreversible damage to body systems because uninformed doctors operating on outdated information misdiagnosed us for many...
  3. trents
    Of course you would not feel better than before. You were a silent celiac to begin with. And I think you need to be careful in advocating for more laxity in gluten free eating for celiacs in general. Your experience is not necessarily typical. And referencing an isolated study here and there or anecdotal accounts does not necessarily constitute proof...
  4. trents
    This has not been my experience. Before diagnosis I was almost silent. Now, after years of gluten free eating, I become violently ill if I get a significant gluten exposure. And I think my experience is more typical, judging by years of reading about other's experience on this forum.
  5. trents
    You were told that if you were to eat gluten your gut would take six months to recover? Are you referring to one slip up here and there or steady consumption of gluten? Occasional exposure to gluten should not require six months for the gut to heal. If you were told that it was false. But after diagnosis and being compliant with gluten free eating it often...
  6. trents
    Welcome to the forum, Erika B! The symptoms you describe could point to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms but NCGS is 10x more common. There are definite and specific tests that are used to diagnose celiac disease. The first stage of testing involves a blood draw which looks for certain...
  7. trents
    Welcome to the forum, EmptyJars99! A strange effect indeed! I have no suggestions or bright ideas at this point. Do you experience any airway restriction along with the numbness?
  8. trents
    Theoretically, cross contamination is possible in a shared facility but most often it's a "we're covering our backsides here" disclaimer. If it's produced on "shared equipment" that's more of a concern than just being produced in the same factory that "also produces tree nuts, wheat, dairy, etc." And it may also depend on how sensitive to minute amounts of...
  9. trents
    Scott is right. Spitting up blood is not a normal symptom of celiac disease. Did the doctor comment on that in relation to the endoscopy? Do you have peptic ulcers or something that needs special attention? And it may be contributing to your low blood counts.
  10. trents
    Welcome to the forum, Rebecca! You need to be on regular amounts of gluten until all testing is complete. So, if you anticipate retesting you need to go back on it. The Mayo Clinic guidelines for going back on gluten (so called "gluten challenge") is two slices of wheat bread daily (or the gluten equivalent) up to the day of the blood draw for 6-8 weeks...
  11. trents
    Thanks for that clarification. Yes, you should certainly make sure all vitamins and supplements are gluten-free. Costco's Nature Made and Kirkland brands are good choices. They will clearly state on the bottle if they are gluten free. For supplements like magnesium glycinate I get them on Amazon. Nutricost and Doctor's Best are brands I get there that offer...
  12. trents
    Welcome to the forum, James47! It can take a couple of years or longer for complete healing of your gut once you go gluten free. Celiac disease damages the villi that line the small bowel. This is the area of the intestinal track where all of our nutrition is absorbed from what we eat. Consequently, celiac disease typically causes vitamin and mineral...
  13. trents
    Bear with me, please. What kind of testing did the nutritionist use to diagnose your celiac disease? Do you know the specifics of the tests that were run? There are specific serum antibody tests that are used to diagnose celiac disease and that is the first stage of diagnosis. If there are positives in the serum antibody tests then, normally, an endoscopy...
  14. trents
    Welcome to the forum, Lillyanna! What were you diagnosed with?
  15. trents
    Yes, I realize that but I also felt uncomfortable with people piling on his spouse when we don't know her side of the story.
  16. trents
    OP's spouse has been accused of "gas lighting" and diagnosed in this thread as suffering from "Munchhausen by proxy" and Narcissistic Personality Disorder. I would remind this forum community that we have only heard one side of the story. Yes, we need to support the OP but do it without turning on his spouse, someone none of us has ever met.
  17. trents
    Yes, it is normal to not test positive on all the tests run in full celiac serology panel. Kudos to your GI doc for thinking to test you for SIBO which a concurrent malady common in the celiac community. Otherwise, a gluten free diet may not result in feeling much better.
  18. trents
    Matt13, what we're saying is we really question whether or not you actually have negative blood serology. If a true complete celiac antibody panel were run you might find that to be the case. Some of the serology tests that were not run might turn up a positive. And I would comment on plumbago's post above. Two weeks of eating regular amounts of gluten likely...
  19. trents
    The reaction starts to happen before it is broken down. You would not find gluten in the blood or tissues that is fed by blood. Links, please, to reputable scientific evidence.
  20. trents
    I don't believe that to be the case. Proteins are broken down in digestion and reconstructed to meet the body's needs. Can you supply links to some good scientific evidence to support that claim? We have dealt with that idea many times on this forum in relation to cows eating gluten-containing grains and causing celiac reactions in those who consume their...
  21. trents
    Welcome to the forum, jwhitty! It is not uncommon for celiacs to not tolerate dairy well, either because of the lactose in milk (the sugar) or the protein, casein. Did you actually determine with your doctor that you are one of those or did you just eliminate it because because it was on the list of common problem foods for celiacs? Was the elimination...
  22. trents
    The gluten challenge for an endoscopy/biopsy is much shorter than that for the blood antibody test, 2 weeks vs. 6-8 weeks. Just thought I'd throw that in if you wanted to push for the biopsy. In some European countries there are real benefits to an official dx of celiac disease. There are stipends to help pay for gluten-free food as well as regular follow...
  23. trents
    tTG-IGA and EMA does not constitute a "full celiac panel" by any means. There are also DGP-IGA and IGG-based tests that can be run to detect celiac disease and total serum IGA should also be run as low total serum IGA can bias other IGA test toward the negative range. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/
  24. trents
    "My serology was negative for complete celiac panel" Can you elaborate on that, Matt13. It is unusual in the UK to have any celiac antibody tests run other than the tTG-IGA. And some clarification, please. Did you have gene testing done for celiac disease potential and what were the results?
  25. trents
    Can you take calcium carbonate-based antacids like TUMS? Also, I know that NSAIDS can stress the kidneys but what about Tylenol which is metabolized by the liver?
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