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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, @SuffolkLady! Is the ttg @0.4U/ml a positive or a negative result? Different labs use different reference scales so raw numbers like that aren't helpful. There aren't industry standards for the way the tests are concocted so different labs use different scales for negative vs. positive. Was that the only celiac antibody test that...
  2. trents
    Oat milk would still have the protein avenin. Has dad had blood antibody testing done for celiac disease? It is partially true that blood antibody testing can yield inaccurate results on young children but they can also provide guidance. When they are done, a more extensive celiac panel should be ordered which would include: 1. Total IGA, DGP-IGA...
  3. trents
    Welcome to the forum @Minimacles! First, I think you need to give it more time. Second, you need to check everything you are feeding him for hidden sources of gluten. Most people starting on the gluten free diet have a very impoverished idea of the myriad of places gluten is tucked into the food supply and are also unaware of cross contamination...
  4. trents
    With your strong family history of celiac disease, you need to get your kids regularly tested. Two recent large studies, one done by the Mayo Clinic involving well over 300 people, pegged the incidence of celiac disease in first degree relatives of those with celiac disease at over 40%. This was proven by biopsy. Many or most of them were of the "silent"...
  5. trents
    So they did a DGP-IGA, a DGP-IGG and a tTG-IGA. One thing they should have done in addition to those was the total IGA to make sure you weren't low in that one and so getting suppressed scores on your tTG-IGA. However, the endoscopy with biopsy is considered the gold standard for celiac diagnosis so if it was positive and in view of your strong family...
  6. trents
    Actually, Sarah Marie, I think you have your answer for all practical purposes. The bloodwork is positive and symptoms disappear upon cessation of gluten consumption. Is there a particular reason you need an official diagnosis?
  7. trents
    Jodi Lee, I think just about everyone who is diagnosed with celiac disease struggles with resentment and anger at the changes and limitations it imposes upon our lives if we choose to accept its reality. For most of us I think, that largely subsides over time and it becomes the new norm. But if there is an existing unhealthy relationship with food then...
  8. trents
    Do his fevers respond to acetamenophen?
  9. trents
    Sarah Marie, can you specify exactly which blood tests were positive? Some of the tests are less specific for celiac disease per se but could indicate a type of reaction to gluten that doesn't cause damage to the lining of the small bowel. This is termed NCGS (Non Celiac Gluten Sensitivity).
  10. trents
    Welcome to the forum, @Janet Denis! Yes, we have had any number of reports from forum members who had positive biopsies but negative blood work. Can you be more specific about which celiac antibody tests have been performed on you? Has a "total IGA" test been done? If your total IGA is low it can generate false negatives on other IGA tests. In addition...
  11. trents
    Jodi Lee, I'm thinking it might be a good idea to seek counseling for what might be a long standing eating disorder that has been complicated by your celiac diagnosis. When we hear the term "eating disorder" what immediately comes to mind are things like anorexia and bulimia. But there are other types as well. I'm not a mental health professional but it just...
  12. trents
    Before your celiac diagnosis, did you have good social support systems in place? Has your celiac diagnosis contributed significantly to feeling more socially isolated?
  13. trents
    Welcome to the forum, @Jodi Lee K! Two questions: 1. When you say, "I also am can't eat something because I need it," has it always been this way or just since your celiac diagnosis? 2. When you say you "go through phases where I feel so bitter and I wish I could just decide that I don't have celiac anymore," at such times, do you cheat on...
  14. trents
    One thing I would point out is that he as now entered adolescence and there are a lot of changes in general going on in his body.
  15. trents
    I would not assume your conclusion about not having any damage to the intestinal track is correct. Some of your symptoms could suggest otherwise, e.g. , low iron. I agree with the NP, you should seek an endoscopy/biopsy for clarity.
  16. trents
    Welcome to the forum, @nonflourgirl! You will be amazed at the places wheat, barley and rye show up in the food manufacturing industry. Things like soy sauce, some chocolate syrups and some "light" pancake syrups, most canned soups that don't contain noodles, on and on and on. If they are not an intentional ingredient that shows up in the ingredient...
  17. trents
    What is a 504 plan?
  18. trents
    Cristiana, it also needs to be said since test scales are not standardized in the laboratory world, comparing numbers from different test periods can be misleading unless the same labs were used each time.
  19. trents
    @Penny88, why haven't you sought blood testing for celiac antibodies? That is the most direct way to get a diagnosis. The rash that some celiacs get is known as dermatitis herpetiformis or "dermatitis herpetiformis" for short. A minority of celiacs express through dermatitis herpetiformis and it can be quite challenging to get a diagnosis through the dermatitis...
  20. trents
    "follow gluten free diet as much as possible" I think is the key here. Sounds like you are not consistent in eating gluten free. My input is that this needs to change to where you are totally gluten free on a consistent basis. Every lapse is a setback to healing. The goal should not be to eat a low gluten diet but to eat a gluten free diet. You need to get...
  21. trents
    Did you mean "Glutino's"? Glutinous would mean it has gluten in it.
  22. trents
    That's going to be a tough one. I'm thinking that you might need to pioneer a lot of your own recipes in the sense of taking ones that do use rice and substituting other ingredients such as tapioca or oat flour until you find something and find the proportions that work.
  23. trents
    Welcome to the forum, @Brooklyn Lyn! Recipes for making what?
  24. trents
    Welcome to the forum, @Seekingthelight! No, you should not begin the gluten free diet before all testing for celiac disease is complete. Inflammation begins to subside, antibody levels begin to decrease and the villous lining begins to heal. Obviously, this will affect test results and could easily result in false negatives in both the blood antibody...
  25. trents
    Welcome to the forum, @Carlyallyn! I would suggest taking a high potency gluten free B-complex and 5000IU of D3. B-vitamins and D3 are key neurological nutrients. How long do you believe you lived with celiac disease before you were diagnosed?
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