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trents

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Everything posted by trents

  1. trents
    Thanks. Now it all makes sense. So, it looks like he may be IGA deficient or on the cusp of it. So, the reliability of the tTG-IGA testing is dubious. Being that the EMA is positive, my money would be on him having celiac disease, especially with the symptoms he is experiencing. The next logical diagnostic step would be to have an endoscopy/biopsy done of...
  2. trents
    So, you are not IGA deficient and your tTG-IGA is clearly positive, indicating you do have celiac disease. Historically, it has been standard practice to confirm positive blood antibody tests with endoscopy/biopsy. In the past several years, however, there has been a trend to forego the latter if the tTG-IGA antibody test scores were 5-10x normal. Your score...
  3. trents
    Welcome to the forum, @Eric.C! Are you still consuming dairy and oats? It is very common for those with celiac disease to have or to develop additional food intolerances. It could be to almost anything but dairy and oats (even gluten free oats) are the most common offenders because their proteins are similar to gluten. Also, if you are relying...
  4. trents
    Welcome to the forum, @Jy11! The way you have posted his blood antibody test results is very confusing. TTg and IgA are not two different tests. These abbreviations should be combined into one expression: TTg-IgA. You seem to have listed the same test twice in 1. and 2. but with different results. Is the way you have posted the results exactly...
  5. trents
    Chronic mildly elevated liver enzymes was what eventually led to my celiac diagnosis but it took thirteen years to ferret that out and by that time I had developed osteopenia. Yes, you've got a lot going on there in the way of autoimmune disorders and all of them we now know have a connection with celiac disease. It is true that autoimmune disorders...
  6. trents
    Welcome to the forum, @Lburnett! Have you been officially diagnosed with celiac disease? I'm just trying to get a handle on the health context from which your question comes.
  7. trents
    I think you know enough to conclude that your son either has celiac disease or NCGS (Non Celiac Gluten Sensitivity). As soon as you removed gluten from his diet his stools firmed up. It is also very common for celiacs to be intolerant of dairy and soy, so that is another piece of corroborating evidence. If I were you, I would consider getting your sone genetically...
  8. trents
    You got some bum steers my friend. I have little confidence that you can trust your test results as differentiating between NCGS and celiac disease. And I think you would be much more likely to have gotten that note you need if you had been diagnosed with celiac disease. But believe me, I understand the predicament you are in with regard to the risks of repeating...
  9. trents
    How long was your gluten challenge? I hope it was longer than a week. If not, your testing was likely invalid. Recently upgraded guidelines call for the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) for at least two weeks prior to either the blood antibody test draw or the endoscopy/biopsy. And...
  10. trents
    Well, the next step would logically be to commit in a serious way to the gluten-free diet and see if you have significant improvement in your symptoms. You should see improvement very soon with regard to GI issues and within weeks if there are other symptoms if gluten is indeed the issue. If there is significant improvement after going gluten free, that would...
  11. trents
    @LoSmith, what would be helpful to you in this regard? If "Simply saying "You need to eat more vegetables" or handing over lists and recommending recipe books is not helpful when simply READING a recipe can cause someone to reject it entirely" doesn't work for you, what would be a better approach? What would that look like for you? You may need to take the...
  12. trents
    Welcome to the forum, @Jason Hi! First, we need to deal with some squishy terminology. There are two terms which are, unfortunately, used interchangeably and indiscriminately to refer to two different gluten-related disorders. The two terms are "gluten sensitive" and "gluten intolerant". Because these terms are used carelessly we are not certain what...
  13. trents
    Welcome to the forum, @mariamccl! It is outrageous that you have to wait so long for a GI appointment! I assume you are in the UK from your use of "mum" for your mother. That is par for the course I understand in the current UK medical system. I am glad you went private concerning the camera. Will this also include a biopsy of the small bowel lining...
  14. trents
    Oh, yes. When you reply with the reference ranges, please also add the units used such as mg/L or whatever. Different labs will used different units of measure just as they will deploy different reference ranges.
  15. trents
    Welcome to the forum, @breadbreadbaby! We cannot comment on your test numbers until you also provide the reference ranges used by the lab doing the analysis. Different labs construct the test analysis differently and used different reference ranges, Hence, there are no industry standards. You will likely have to repost the existing information in a new...
  16. trents
    Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short....
  17. trents
    You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but...
  18. trents
    You might find this helpful:
  19. trents
    I would go for four weeks to ensure a valid test, if you can tolerate it, that is.
  20. trents
    https://www.healthline.com/health/at-home-celiac-test#_noHeaderPrefixedContent
  21. trents
    As Scott said, if you go on a gluten free diet ahead of testing you can expect the test results to be negative. If you remove gluten from your diet, the inflammation in the lining of the small bowel will subside, antibody levels (what the blood tests are checking for) will drop and the mucosal lining will experience healing such that a biopsy will be normal...
  22. trents
    Another factor revealed in your test results is that you are IGA deficient. Look at the line: Immunoglobulin A, Qn, Serum 35 (L) Reference range: 87 - 352 We also call that "total IGA". IGA deficiency results on in artificially low scores in the individual IGA celiac antibody test scores. In other words, the test score for the tTG-IGA would...
  23. trents
    Welcome to the forum, @Morgan Tiernan! I find it outrageous that your physicians refused to test you for celiac disease despite what were obviously outbreaks of dermatitis herpetiformis. Every physician should know that dermatitis herpetiformis is a classic symptom of celiac disease! In fact, celiac disease is the only known cause for dermatitis herpetiformis...
  24. trents
    We are all different and our immune systems are unique. I will say, however, that I have not gotten the impression as a moderator and reading hundreds and hundreds of posts on this forum over the years that a dermatitis herpetiformis outbreak caused by grains other than wheat, barley and rye is common. But perhaps it is more common than we have realized and...
  25. trents
    Welcome to the forum, @Richardo! We sometimes run across terms like "rice gluten", "corn gluten", and "oat gluten" but they are used informally and, technically, it is incorrect to speak of grains other than wheat, barley and rye as having gluten. Gluten is a protein with a specific structure found only in wheat, barley and rye. Other cereal grains contain...
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