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trents

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Everything posted by trents

  1. 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...
  2. 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...
  3. 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:...
  4. 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.
  5. 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...
  6. 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...
  7. 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...
  8. 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...
  9. trents
    @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
  10. 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...
  11. 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.
  12. 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...
  13. 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...
  14. 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...
  15. 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...
  16. 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...
  17. trents
    Welcome to celiac.com, @jenniber! This disaccharide deficiency is a new one for me but after researching it, it is a thing. I am concerned that your GI doc skipped the normal protocol of first ordering blood tests for celiac disease and went straight to the scoping/biopsy. Since she, herself, initially believed you to have celiac disease and the...
  18. trents
    Welcome to the forum, @yellowstone! The most common ones seem to be dairy (casein), oats, eggs, soy and corn. "Formed" meat products (because of the "meat glue" used to hold their shape) is a problem for some. But it can be almost anything on an individual basis as your sensitivity to rice proves, since rice is uncommonly a "cross reactor" for celiacs. Some...
  19. trents
    Our understanding of that is very incomplete at this time. There are theories and it seems to involve multiple factors. We know there is a genetic component but that is far from the total answer since 40% of the general population has the genetic potential to develop celiac disease but only 1% actually does. Other suspects are the indiscriminate use of antibiotics...
  20. trents
    Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being...
  21. trents
    Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess...
  22. trents
    IMO, the information contained in this article is extremely important. Several medical science articles I have run across lately indicate that researchers are just beginning to uncover connections between gut health and diseases we would never have imagined as having a link. One example is Parkinson's. But this sentence caught my eye from this article...
  23. trents
    This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
  24. trents
    @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a...
  25. trents
    Keep us posted.
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