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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
    If you had four positive out of six celiac antibody tests and there was inflammation in your duodenum as the pathology report stated, I would say that is pretty conclusive for celiac disease. You may have caught it early enough before villi blunting was happening.
  2. trents
    Welcome to the forum, @NoMoreBreadForMe! You said you are not anemic but are your blood oxygen saturation levels within the normal range?
  3. trents
    I asked about the dairy because a significant proportion of the celiac population reacts to CMP (Cow's Milk Protein) like they do gluten. Oats is another common cross reactor. https://www.beyondceliac.org/research-news/cows-milk-protein-allergy-could-be-the-culprit-when-some-children-dont-recover-on-the-gluten-free-diet/?_hsmi=243747802&_hsenc=p...
  4. trents
    Welcome to the forum, RK37! I don't have any bright ideas as to what is causing the bone edema. That's something I have never heard of in children or adults. So, it's the actual bone that is swelling and not the synovium or the compartment around the bones? Is he consuming dairy products by any chance? I'm also curious about how he was diagnosed...
  5. trents
    When is the gastroscopy scheduled for? If there is a significant wait period, I would ask the doctor to run additional blood tests including: Total IGA DGP-IGA DGP-IGG If the gastroscopy is coming soon, just go for that. But don't start the gluten free diet until all testing is done. Make sure you are consuming an amount of gluten daily...
  6. trents
    Hmm. You must have allergies to wheat or one of the other two gluten containing grains. Celiac disease is not an allergy but an autoimmune disorder which engages a different immune system pathway than do allergies.
  7. trents
    Not every dermatologist knows how to biopsy for dermatitis herpetiformis correctly. Check with your derm doctor first to see if the have had much experience with biopsying dermatitis herpetiformis. For one thing, the biopsy needs to be taken from tissue adjacent to a bump, not on a bump.
  8. trents
    I could be wrong but the pathology report doesn't seem to describe the kind of damage to the lining of the small bowel caused by celiac disease that we normally see. Celiac disease causes a blunting of the villi. It wears them down and reduces the nutrient absorbing efficiency of what starts out to be millions and millions of tiny finger-like projectiles...
  9. trents
    So, you are referring to dry cereal and not hot cereal?
  10. trents
    When the blood draw for the antibody test was taken, had you already begun cutting back on gluten ahead of that? The gastroscopy with biopsy of the small bowel lining is considered the gold standard diagnostic test for celiac disease. But like with the blood antibody test, to be a valid diagnostic tool, you would have need to have been consuming regular...
  11. trents
    We have had several reports like yours over the years of those who have resumed gluten consumption with no apparent reaction after years of being gluten free. But usually, it doesn't last and there is eventual relapse.
  12. trents
    Are you still consuming oats? Even gluten free oats?
  13. trents
    As Scott said, celiac disease cannot be diagnosed with a colonoscopy because celiac disease is a disease of the small bowel, the upper part of the intestines just below the stomach, whereas a colonoscopy does not go up that far. The first stage of celiac disease diagnosis is usually the blood antibody test. If there are positives in the antibody testing,...
  14. trents
    An endoscopy without a biopsy of the small bowel lining would not necessarily be a good diagnostic for celiac disease. If the damage to the small bowel lining is profound enough, and if the scope resolution is good enough, and if the person doing the scoping is experienced enough to recognize "villi blunting" then it can be seen without the aid of a microscope...
  15. trents
    The most recent "gluten challenge" guidelines for those having been gluten free for a long period of time and wishing to be tested are the daily consumption of 4-6 slices of wheat bread (or the gluten equivalent - 10g) for at least two weeks prior to the antibody test blood draw. I would recommend mor like four weeks to be sure. Many people find they...
  16. trents
    Just for the sake of clarity, there are two gluten disorders that often get confused because the terminology is used carelessly. There is celiac disease, aka, "gltuen intolerance" and there is NCGS (Non Celiac Gluten Sensitivity), aka, "gluten sensitivity". There is overlap in their symptoms but the distinguishing factor is that celiac disease causes inflammation...
  17. trents
    Welcome to the forum, Natynat! Do you experience this no matter what you have eaten or are these symptoms tied to certain foods? Gluten is a protein found only in wheat, barley and rye. The symptoms you describe also sound like they could be caused by say, fructose intolerance or some kind of blood sugar swing. Have you been tested for either diabetes...
  18. trents
    Is that the only test that was ordered? Was there a "total IGA" test ordered? That is far from a comprehensive celiac antibody panel.
  19. trents
    I would suggest you consider adding in some high potency vitamin and mineral supplements. I'm talking about more than an adult multivitamin. Long term undiagnosed celiac disease typically results in vitamin and mineral deficiencies due to the damage it does to the lining of the small bowel. That is the section of the intestines where all of our nutrition...
  20. trents
    Welcome to the forum, @Lorilinn! Be aware that about 10% of celiacs react to the protein, avenin, in oats like they do the protein, gluten, in wheat/barley/rye. Namaste's "The Perfect Flour Blend" is what my wife uses. She gets it at Costco. But there are probably lots of good options in this area.
  21. trents
    Yes, most likely the onset was years ago.
  22. trents
    Are you currently under the care of a gastroenterologist? Your post is confusing to me in that you seem to have said on one place you are only being treated in ER/Urgent care settings but in you most recent post you say you certainly are dealing with obstinate gastroenterologists. Are you totally against the use of biologics? Have you tried the...
  23. trents
    Welcome to the forum, @savona! How long ago were you diagnosed with celiac disease? Since diagnosis with celiac disease, have you been diligent to follow the gluten free diet? Are you saying your primary care doc doesn't recognize your celiac diagnosis while in Canada as a valid or are you dealing with an obstinate gastro enterologist? What...
  24. trents
    By the way, it is not unusual at all to be diagnosed with celiac disease at your age in case you were wondering.
  25. trents
    Welcome to the forum, @carolcat! Many celiacs are of the "silent" type, meaning, they have few or no symptoms, sometimes for years after onset of the disease, until the damage to the villous lining of the small bowel reaches a critical level and other disease processes, such as osteoporosis, are well underway. Essentially, that describes my experience...
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