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trents

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Everything posted by trents

  1. trents
    I would not rule out the possibility of a health issue unrelated to celiac disease or gluten. But first, double-check your pantry and medicine cabinet for unexpected sources of gluten. Don't forget that food companies can and do change formulations such that something you eat regularly that had been gluten free no longer is. Check ingredients closely for...
  2. trents
    Just to be clear, the symptoms don't get worse after being off gluten for a while unless you go back on gluten. What happens is you lose whatever tolerance you had before going gluten free.
  3. trents
    Why does your doctor say you have Hashimotos when your thyroid panel numbers are all within normal range?
  4. trents
    It does look like from the number that you have celiac disease. Judging by the way you spelled "celiac" it doesn't look like you are in the UK. Most definitely, you should be consuming a significant amount of gluten daily right up until the day of the endoscopy/biopsy. Your doctor gave you a bum steer by telling you to go gluten free. What are your...
  5. trents
    If the antibody tests are equivocal then there is a good chance the biopsy will be as well. I say that because the antibody tests measure inflammation and if the numbers are low you would think there is not much inflammation and damage going on in the small bowel lining. This could be true especially in the early stages of celiac disease. However, we...
  6. trents
    I commend you for getting prepared ahead of time. We don't often see that on the forum. That will pay dividends when and if celiac disease is confirmed for your daughter. Another thing you need to consider is that one recent study done by the Mayo Clinic with 300 or so people showed that 44% of first degree relatives of those with celiac disease had...
  7. trents
    My bad. That's what you get when reading something immediately after waking up in the morning. The underlined portions caught my eye and confess I did not read your post carefully enough to understand that your daughter is not yet eating gluten free. Are you in Europe? In the USA she would probably be put on conscious sedation and never even remember...
  8. trents
    Unfortunately, you are sabotaging any testing (either antibody testing or endoscopy/biopsy) for celiac disease by already having her on a gluten free diet. Both kinds of tests are designed to measure the effects of inflammation in the small bowel caused by gluten ingestion for those with celiac disease. For the blood antibody testing the guidelines for a...
  9. trents
    In many health food stores and no amazon you can actually buy pure gluten powder. https://smile.amazon.com/s?k=gluten+powder+for+baking+bread&crid=36YS1FLJCZKGJ&ref=nb_sb_ss_ts-doa-p_3_13. You could mix it in with a beverage and eliminate the starchy calories that bread has. Years before I knew I had celiac disease my wife used to bake our own...
  10. trents
    It's "knitty kittty" but I'm sure she probably figured it out. Yep! Few and far between are those physicians, even many GI docs included, who know much about celiac disease or are not operating from very dated information that they received back in medical school many years ago. You are now an expert compared to what most of them know. And, yep! You...
  11. trents
    You could have NCGS (Non Celiac Gluten Sensitivity) for which there is currently no test. It is ruled out by eliminating celiac disease. Many of the symptoms are similar between the two. NCGS does not damage the small bowel villi, however, so nothing shows up on the tests for celiac disease. You need to have been eating regular amounts of gluten daily...
  12. trents
    k2 has some role in blood clotting but not as much of a factor as k1 apparently: "The body needs both types of vitamin K to produce prothrombin, a protein that plays crucial roles in blood clotting, bone metabolism, and heart health. Vitamin K also helps facilitate energy production in the mitochondria of cells. Vitamin K-1 is primarily involved...
  13. trents
    Just a word of caution here about vitamin K supplementation or eating foods high in vitamin K. If you are on the blood thinner warfarin (aka, coumadin, Jantoven) you need to realize that vitamin K is the antagonist of that blood thinning medication. If you make significant changes to your dietary intake of K you need to make sure you alert your clinician...
  14. trents
    Yes. The less gluten consumed, the less inflammation that is happening. The less inflammation that is happening, the lower the antibody levels will be. Antibodies are involved with the inflammation chain of events. Antibodies are part of the immune system response to an invader (such as gluten for celiacs). Antibodies are marshalled to fight the invader...
  15. trents
    Weak positives, especially if you have been off gluten pre-test, would indicate celiac disease.
  16. trents
    Being off gluten for 10 days could have definitely skewed your test results toward the negative side. The only positive you have in that test battery is the tTG-IGG. The tTG-IGA is considered to be the best, most well-rounded test for celiac disease. Supposedly, it combines good sensitivity with good specificity. The other tests fall short in one or the other...
  17. trents
    deanna, didn't you say in your first post that after a certain point your daughter was eating gluten with no discomfort?
  18. trents
    Should be the equivalent of two slices of wheat bread daily for 2 weeks. That is the guideline. I would hate to see you put her through an endoscopy in vain. When is the appointment? If the doc wants to do an endoscopy/biopsy just have him schedule it out at least that far. Or, at least that is one option. Another thing to consider, especially since...
  19. trents
    Particularly in the UK, most physicians forego the endoscopy/biopsy when antibody scores are 10x normal. If you don't feel it is necessary to go through with the endoscopy/biopsy I would go armed with some information like that to justify your position.
  20. trents
    In your case, since your daughter seems to not be having dramatic symptoms anymore while consuming gluten, I would keep her on it until that appointment in case the doc wants to do a scope and biopsy. Having said that, no one, even most physicians I believe, would be unwilling to conclude that your daughter has celiac disease in view of her strong antibody...
  21. trents
    I would say that "there's a really good chance I actually have celiac disease" is a conservative, under-statement.
  22. trents
    Yes. It is typically overwhelming at first. We've all "been there, done that." Another big piece of this is educational. Learning where and how gluten shows up in the food supply. For instance, would you expect to find wheat/gluten in soy sauce or Campbell's tomato soup? Read their ingredient labels and you will discover it's there. Cutting down on gluten...
  23. trents
    I would also suggest that you and the child's father and her siblings get tested for celiac disease. While different research studies over the years have turned up different results, and significantly different, one large recent study done by the Mayo Clinic found that 44% of the first degree relatives of those with celiac disease also had celiac disease...
  24. trents
    Note that “L” and “H” symbols (High/Low). Her tGG-IGA is "H" and unequivocally positive (clearly a positive test result). Her DG-IgG is also high. The center piece of celiac disease antibody testing is the tTG-IGA. It is considered to combine the best of being specific for celiac disease with good sensitivity. I would say without hesitation that sh...
  25. trents
    deanna, Please re-read my post as I did some significant editing, apparently while you were typing a response. One of the things I suggested was getting genetic testing done to establish the potential for celiac disease. There are at this time two, maybe three, genes that have been linked to the potential for developing celiac disease. The other thing...
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