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trents

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Everything posted by trents

  1. trents
    Is this the first round of antibody testing you have had done? Have you already had any IGA antibody testing done? The reason I ask is from the statement found in your lab report from your second post: "Low IgA antibody levels suspected. Tissue transglutaminase, IgG and deamidated gliadin peptide, IgG tests to follow." But I see no IGA test...
  2. trents
    Welcome to the forum! We cannot comment on your test scores unless you also include the reference ranges for negative vs. positive on each test used by the particular laboratory doing the analysis. Each lab concocts its own test and uses different parameters so the ranges the use for reference vary. There is no industry standard. Please repost and add...
  3. trents
    Welcome to the forum, @Jelly bean! You are not alone! Many in the celiac community go through what you are going through. Much of their reaction is born of ignorance and it might help to gently and patiently educate them as to the nature of the disease. It is an autoimmune disorder which means the consumption of gluten causes the body to attack its own...
  4. trents
    Welcome to the forum, @Rosyjo11! So, for the sake of clarity, you have never been officially diagnosed with celiac disease. Correct? If so, has it occurred to you that you may have been dealing with NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease? They share many of the same symptoms but NCGS does not damage the lining of the small...
  5. trents
    Welcome to the forum, @JamiL05! The way you formatted your lab results in your above posts makes it difficult to decipher. Is that how it was given to you or did the formatting get scrambled because you were trying to post the info with a smart phone? Taking a wild guess, it looks like the first post is giving a total IGA score, the second a TTG...
  6. trents
    Welcome to the forum, @Logmart3! There is something called gluten withdrawal that some people experience during the first few weeks after going gluten free. Believe it or not, gluten has addictive properties similar to opiates. Also, it is well-known that celiac disease can cause neurological problems and some of your symptoms sound like they could...
  7. trents
    I realize I am responding to an old post here but this doesn't make any sense. You can't have give up lactose while at the same time "continued to consume cows milk even more than before". Lactose is the sugar component of cow's milk. Unless you treat it with Lactaid or buy it already treated (and the poster makes no mention of doing so) you are just consuming...
  8. trents
    Lori, elevated liver enzymes was what led eventually to my celiac diagnosis. This is experienced in about 20% of those with celiac disease but most general medicine doctors would not know that. It is not a "classic" celiac disease symptom and most GPs are not trained beyond an awareness of the classic GI symptoms along with maybe anemia and osteoporosis....
  9. trents
    Lori, I suppose it is true that a weak positive antibody test score makes it less certain that it could be celiac disease and more likely something else. But because you are IGA deficient, the water is a little muddied in that regard. You will likely have some more definitive answers soon after your procedure on Monday, probably within a week or two. But...
  10. trents
    Welcome to the forum, @Nora Sofian! None of the test results you listed are positive and you are not IGA deficient. Unfortunately, being gluten free for so long and then returning to gluten consumption for only 10 days may have rendered the testing invalid. Current guidelines for the "gluten challenge" after three months of being gluten free are...
  11. trents
    Welcome to the forum, @lorishaw! One factor you are likely not aware of is that your low Immunoglobulin A (IgA) (what we typically refer to as "total IGA") would cause the TTG-IGA test score to be artificially low. Low total IGA (or IGA deficiency) suppresses individual IGA test scores. It is not itself an antibody test for celiac disease but if it is...
  12. trents
    Thanks for this input and the link, RMJ. As I said some time ago in this discussion, I fear the celiac community may have gone off half-cocked in their reaction to these claims. Having said that, I still think random, unannounced drop in testing added to the mix of protocols would be a good idea.
  13. trents
    Yes, I think it could or at least account for some of the problems you are experiencing. You report a positive change already in stool consistency with just a short trial of gluten free eating. There are also third party celiac disease test kits that you can purchase for around $100 USD.
  14. trents
    When a doctor isn't listening to their patient it's time to look for another doctor.
  15. trents
    Welcome to the forum @Mizzpan! When you say your bloodwork had elevated results, exactly what blood values were elevated? Have you specifically had celiac blood antibody tests done? There are specific blood tests done to check for celiac disease that are not part of a CBC or CMP. If you will be tested for celiac disease you must not begin a gluten free...
  16. trents
    Welcome to the forum, Staci19! If you are willing to cook your own food, eating well and eating gluten free does not need to be expensive. Don't spend money on processed, prepackaged gluten free foods. Focus on fresh meat, fresh vegetables and fruit. Focus on cooking fresh and cooking simple. Calories can be had via potatoes and rice, seeds and nuts...
  17. trents
    It might be a good time to throw this article in as it covers a lot of unexpected sources of gluten exposure:
  18. trents
    Well then, I would conclude you do have celiac disease. You have classic symptoms, a positive antibody test result and improved symptoms when gluten is withdrawn. But unless you are willing to embark on a "gluten challenge" you may have to live with that as an unofficial diagnosis. Many people have difficulty staying on the gluten free bandwagon without one...
  19. trents
    So, I assume your symptoms have improved since reducing your gluten intake. Is this correct?
  20. trents
    Unfortunately, you may have sabotaged your testing by reducing your gluten intake in the month before the testing blood draw was done. You do have one positive result from the testing, however, and that is for the Deamidated Gliadin Abs, IgA which certainly could indicate you have celiac disease. And it only takes one positive test. They don't all have to...
  21. trents
    Welcome to the forum, @Chrisusa! We can't answer your question unless you also supply us with the ranges used by the lab for negative vs. positive. There are no industry standards for these things. Each lab develops there own tests and uses different scales. All you have given us are your raw scores. You will not be able to edit your original post...
  22. trents
    Until later, Jim. You have a great weekend as well.
  23. trents
    Celiac disease does have a hereditary component but it is not as strong as with many other health conditions. There are two primary genes associated with celiac disease: HLDQ2 and HLDQ8. Having either of these genes or both presents the potential for developing celiac disease. About 40% of the population has one or both of these genes but only 1-1.5% of the...
  24. trents
    No, my daughter does not have celiac disease. I am the one in the family with celiac disease. My daughter is adopted so I didn't pass those genes onto her. The fact that your son has packed on 20 lbs. since his diagnosis and going gluten free is a good indicator that his gut is healing. It can take a couple of years or more for full rebound of the villous...
  25. trents
    If you refer to the damage done to the villous lining of the small bowel, yes, it should heal with time and consistent gluten free eating. The damage done to the villous lining is caused by the inflammatory response to gluten caused by the immune system mistakenly interpreting it as an invader. Once you remove the gluten, the inflammation subsides and the...
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