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trents

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Everything posted by trents

  1. trents
    Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an...
  2. trents
    Would it be rude to ask your age?
  3. trents
    Yep, you've got celiac disease. That is a high score. In the U.K. you could have been diagnosed on the TTG-IGA score alone and not needed an endoscopy/biopsy. But I realize your physicians were not looking for celiac disease in the first place. But it also makes me wonder how much of your bowel issues are tied to celiac disease whose onset may actually have...
  4. trents
    Just one thing I will add that you need to be aware of. If by some chance you had been avoiding gluten or eating less of it than what would be normal for most healthy people, the antibody results for celiac might still be negative. I understand that one of the symptoms of SMA syndrome is difficulty in eating because stuff isn't moving through like it should...
  5. trents
    The practical takeaway: "For people who care about celiac disease, especially families who have children at higher risk, the findings highlight the importance of self-advocacy." It's the only parameter that the affected individual or their family members have control over. We need to learn to become "politely pushy" in order to get proper testing done when...
  6. trents
    Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease...
  7. trents
    Welcome to the celiac.com community @pothosqueen! Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run...
  8. trents
    It takes weeks/months for the celiac-related antibodies to dissipate once gluten is withdrawn but it also takes that amount of time for them to build up to detectable levels in the blood once gluten is reintroduced. I'm not certain about this but unlike the individual IGA celiac antibody tests results, I don't think IGA deficiency is tied to gluten consumption...
  9. trents
    Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient. The one test that was ordered...
  10. trents
    One thing to keep in mind is that it's pretty safe to take a B-complex since B vitamins are water soluble. You just pee out any excess.
  11. trents
    When you say "vitamin B" was normal? Which vitamin B are you referring to? Typically, physicians will only check for B12 deficiency because it can connect to iron deficiency via something called "pernicious anemia". But all the B vitamins work together in a synergistic fashion. That's why we recommend a high potency B-complex. And D3 is turning out to be...
  12. trents
    Welcome to the celiac.com community, @hjayne19! Because of the damage done to the villous lining of the small bowel by celiac disease's inflammatory process, absorption of nutrients from our diet is generally compromised and over time it is typical for those with celiac disease to develop nutritional deficiencies. Your low ferritin is evidence of that...
  13. trents
    Making significant changes in our diets, even when it is in, what would we are told by the experts, a healthy direction, can be upsetting to our system until it adjusts. To make an analogy, it's like beginning an exercise regiment when we don't ease into it gradually. That's one thing that occurs to me as a response. And I think as we get up in years this...
  14. trents
    Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
  15. trents
    @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations...
  16. trents
    @Charlie1946, celiac disease damages the lining of the small bowel which is the part of the intestinal track where all our nutrition is absorbed. Celiac disease, therefore, often results in nutritional deficiency related health issues. In addition, you describe a diet that sounds largely devoid of fruits and vegetables and dairy (for calcium). This does not...
  17. 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...
  18. trents
    Be careful with C supplementation. It's ascorbic "acid". Too much can cause stomach and gut irritation.
  19. 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.
  20. trents
    No, I meant two years ago when you had your most recent upper GI scope.
  21. trents
    And you were experiencing this burning sensation back then?
  22. 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.
  23. 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...
  24. 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...
  25. 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...
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