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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
    Welcome to the forum, @Tabitha1723! One thing that doesn't compute for me is that you say you were told you likely have refractory celiac disease. Refractory celiac disease does not have to do with having it since childhood. Refractory celiac disease is celiac disease which does not respond to a strict gluten free diet. Are you now on a strict gluten...
  2. trents
    Welcome to the forum, @emma1semrad! Thanks for sharing your story and I'm glad you are beginning to find healing and peace with having celiac disease. Please remember you are not alone. I'm sure what you have shared will be a blessing to others on this forum as we not infrequently have young people join our celiac family on this forum.
  3. trents
    This only suggests that actually had a problem with blunted villi from dairy casein rather than gluten. Back then there were no antibody tests for celiac disease.
  4. trents
    I think you were misdiagnosed as a baby with celiac disease. The physician's prescribed diet would likely have done you in if you actually had celiac disease. It does not make any since to leave gluten in the diet of someone you are trying to save from celiac disease. There is still a lot of ignorance in the medical community concerning gluten disorders....
  5. trents
    Have you tried a prescription med known as dapsone? Many with DH say dapsone is the only thing that enables them to completely conquer DH outbreaks.
  6. trents
    Welcome to the forum, Natalie14! We frequently get posts from young people in your same situation. Like your parents, most family members of those with celiac disease just don't get it! It's hard for them to accept that a staple food like wheat could be that bad for you. They don't understand that it's not just about cutting back on wheat/barley/rye...
  7. trents
    Looks like he definitely has celiac disease from that high tTG-IGA and positive EMA. The tTG-IGA is considered the best all around antibody test for celiac disease, combining good sensitivity with good specificity. The EMA is less sensitive but is very specific for celiac disease. In some countries, i.e., the UK, if the tTG-IGA is 10x normal or greater they...
  8. trents
    Not only do many potential celiacs not know that beginning gluten free eating ahead of testing can invalidate testing but many of their physicians do not know this or at least fail to warn their patients about it. Unfortunately, there is still a lot of ignorance within the medical community concerning gluten disorders.
  9. trents
    But even though it's not produced on gluten-free dedicated equipment that does not mean it necessarily exceeds the <20ppm standard set by the FDA (a USA government agency) to qualify as gluten free. It just means you can't count on it. Most celiacs who are not of the super sensitive subset constantly deal with these kind of issues and probably make decisions...
  10. trents
    Welcome to the forum, ConnieSu! Normally, there are two stages in arriving at a celiac disease diagnosis. The first stage is a blood test looking for antibodies produced by celiac disease. Celiac disease is an autoimmune reaction to gluten. When gluten is ingested, the immune system attacks the gluten as it is being absorbed by the villous lining...
  11. trents
    @ItchDrivingMeCrazy, Not every dermatologist knows how to correctly biopsy for DH. The samples should be taken between the bumps, not on them. You might feel him/her out for their approach in this regard when you go for the appointment. Also, you might look into a medication known as Dapsone. It seems to be the only thing that works for many who suffer from...
  12. trents
    Nothing wrong with it but don't expect to get a response from the OP who seems to have moved on. In the future, look for the date of the original post and the ones at the end to get an idea if the thread is active. The date is at the top of each post.
  13. trents
    @Llana and @Aaron2018, You are replying to a thread that has been inactive for almost two years.
  14. trents
    Welcome to the forum, Woodself! Probably not a good idea to eat at diners unless you ask them to cook your eggs and bacon in a clean pan instead of on the grill and they are willing to comply. Studies show that eating out is the number one sabotager of the celiac's effort to truly eat gluten free. It's easy to eat a low gluten diet but much harder to...
  15. trents
    Look in your recent bloodwork results and see if there are lines for albumin and total protein.
  16. trents
    Avocados are a no no for those with histamine intolerance/MCAS. Have you looked into that disorder? It is a common one in the celiac community. It's reactions can feel similar to getting glutened.
  17. trents
    I would contact the company and ask them why they removed the gluten free claim.
  18. trents
    Not almost because at least at this time there is no other way to get an official diagnosis.
  19. trents
    Welcome to the forum, Michael! Besides celiac disease, there is another gluten disorder known as NCGS (Non Celiac Gluten Sensitivity) as you indicate you are aware of from your post's subject line. It shares many of the same symptoms with celiac disease but there is no test for it yet. Celiac disease must first be ruled out. But NCGS is 10x more common...
  20. trents
    The single best antibody test for celiac disease, the tTG-IGA, is positive for you. That definitely suggests celiac disease as this test is considered to combine good sensitivity with good specificity. No one will test positive in all tests. Yes, we sometimes see much higher scores than yours for this test but if you didn't have celiac disease you shouldn...
  21. trents
    Pigging out on gluten for a few days before the test would not compensate for a longer term low gluten or gluten free eating pattern before that. So, you have good reason to doubt the accuracy of the testing. However, you could also have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but for which there is...
  22. trents
    Children should always have a "total IGA" test done in conjunction with individual antibody tests designed to detect celiac disease. If total IGA is low it can cause the tTG-IGA antibody test to drop into the negative range. The tTG-IGA is the most common and often the only antibody test run for celiac disease by many physicians. Because their immune systems...
  23. trents
    I hope you mean "choline" instead of "chlorine". You certainly don't want to ingest chorine. Have you considered lyme disease?
  24. trents
    Apparently they meet the <20ppm standard for gluten-free labeling even though they are produced on equipment shared with wheat products. But they may not be safe for the more sensitive element of our celiac population.
  25. trents
    But it doesn't say "contains wheat starch" it says "contains wheat". I take that to mean not a wheat fraction. At any rate, the company certainly needs to clarify the apparent contradiction with more info on the package if wheat or some wheat component is an intentional ingredient.
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