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trents

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Everything posted by trents

  1. trents
    Welcome to the celiac.com family, @Charlie1946! I have not experienced what you are going through except possibly accelerated loss of enamel and receding gums, to some extent, anyway. But I can tell you that thrush and canker sores have been reported by other members of this online community. Let me ask you some questions. First, how long ago were you...
  2. trents
    Be careful with C supplementation. It's ascorbic "acid". Too much can cause stomach and gut irritation.
  3. trents
    @pilber309, as knittykitty pointed out, lactose intolerance is not the only issue with dairy in celiac community. Lactose intolerance has to do with the sugar component of dairy, lactose. However, some celiacs react to a protein fraction in dairy, namely, casein, like they do gluten.
  4. trents
    No, I meant two years ago when you had your most recent upper GI scope.
  5. trents
    And you were experiencing this burning sensation back then?
  6. trents
    Yes, take this up with your GI doc during the next visit. It might be a good idea to get an upper GI scoping done if you haven't had one done since diagnosis.
  7. trents
    Please understand that genetic (HLA) testing cannot be used to diagnose celiac disease since about 40% of the general population has the genetic potential to develop celiac disease while only about 1% actually do. It also takes some kind of stress event to "wake up" the genes such that the potential for it is transformed to active celiac disease. This stress...
  8. trents
    Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
  9. trents
    Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
  10. trents
    I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
  11. trents
    Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
  12. trents
    Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note:...
  13. trents
    You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
  14. trents
    Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to...
  15. trents
    There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes...
  16. trents
    Welcome to the celic.com community @Ello! You say you had a blood test for celiac disease after eating gluten for 2 weeks. Were you gluten free before that? Had you ever been officially diagnosed with celiac disease previously? You say the result of the blood test was 1.5. Can you provide the name of the test and the reference range for negative...
  17. trents
    So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total...
  18. trents
    @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
  19. trents
    Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference...
  20. trents
    Yes, if you are convinced gluten is causing you problems then it would seem to come down to NCGS but you may also have other intolerances.
  21. trents
    Perhaps the takeaway from this is that you can help others who may have symptoms of celiac disease but flying under the diagnostic radar of the medical establishment to advocate for celiac testing themselves. Our community has painfully discovered that passively trusting the medical establishment to run the appropriate tests is a paradigm that doesn't work...
  22. trents
    Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  23. trents
    What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
  24. trents
    Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how...
  25. trents
    Welcome to celiac.com, @Sheila G.! Was the blood test you had done designed to check for food allergies/sensitivities in general or are you referring to the blood testing that is done specifically for celiac disease? Have you been diagnosed with celiac disease? You don't say so but just wondering 'cause you are posting on a forum dedicated to that...
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