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RMJ

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Everything posted by RMJ

  1. RMJ
    Here is another link. The article is mainly a risk-benefit analysis of the vaccine vs COVID which isn’t applicable to you since your daughter unfortunately has already experienced a major vaccine side effect. But in the beginning there is a good description of what’s been seen of myocarditis, and some links to additional articles/studies. https://s...
  2. RMJ
    Has something changed? I haven’t been there since the pandemic started, but they used to have Certified Gluten Free pizzas with a cauliflower crust which I’ve eaten many times with no problems. They don’t make the dough for their regular pizzas in house so there isn’t flour flying around in the air. The gluten free pizzas are prepared in a separate area, p...
  3. RMJ
    https://res.mdpi.com/d_attachment/children/children-08-00607/article_deploy/children-08-00607-v2.pdf https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/myocarditis.html https://www.who.int/news/item/09-07-2021-gacvs-guidance-myocarditis-pericarditis-covid-19-mrna-vaccines https://www.bmj.com/content/373/bmj.n1635
  4. RMJ
    I am so sorry to hear that your daughter is suffering with one of the rare but real side effects of the mRNA vaccines. The information I’ve seen online indicates that most recover from this pericarditis. I hope that there is still a chance of recovery for your daughter.
  5. RMJ
    Has she had a recent blood test for celiac disease? That would indicate whether traces of gluten are getting into her diet (positive test), or if the doctors should be looking for another cause of her misery (negative test).
  6. RMJ
    Lactose, the sugar in dairy products, is digested by enzymes made in the tips of the villi in the intestine. Since celiac disease injures the villi, many people who have not yet healed from celiac disease are lactose intolerant. Since the calcium in dairy is important for a growing child, you might try dairy with less or no lactose, like lactose-free milk...
  7. RMJ
    Hi Ollieotters, Based on another post of yours, I think you were just diagnosed a month ago? That is a very short time for those of us healing from celiac disease. It is extremely common to still have issues/pain, and to have slightly different issues since your diet is different now (gluten free). It is way too soon to worry! Your mother is probably...
  8. RMJ
    I was unable to have a biopsy when I first found out I had high celiac antibodies. I had no symptoms that I was aware of. I decided that it wasn’t a good idea to have my body making antibodies against myself, so I went on a gluten free diet. I finally had a biopsy several years later and did have blunted villi, so they were probably worse prior t...
  9. RMJ
    I looked at the amount of gluten peptides found in urine - the amounts are very, very, VERY tiny. Far less than is needed to cause troubles in even the most sensitive people with celiac disease (nano- or micro-grams vs milligrams). I don’t think you need to worry at all.
  10. RMJ
    You could go gluten free and see if the antibody levels go down to normal ranges and your symptoms go away. That would be a good indication that you do have celiac disease.
  11. RMJ
    In the comments below the recipe the author doesn’t recommend it when someone asks if it can be made into a loaf: ”I don’t think so. The inside would be too gummy, like undercooked. How about turning this into a focaccia or flatbread? – Sophie”
  12. RMJ
    I’m glad that the Mayo clinic is in your network! One less thing to worry about. I hope they can give you some answers. Did you get the MRI to look at your brain? I just reread this whole thread. You have serious health issues and I worry about your getting a lot of advice here from people who are very caring but not medical professionals. I’m not...
  13. RMJ
    I am gluten free and very sensitive to gluten but my husband is not, so our kitchen is not gluten free. He and I have separate food preparation areas. We have separate shelves in cupboards, refrigerator and freezer, with his below mine so his food can’t fall into mine. We have separate dishes, but that is only because we don’t have a dishwasher and...
  14. RMJ
    The results you posted are negative for celiac disease. It included the tests most doctors seem to request, but it was not the full panel. There is also a DGP test for deamidated gliadin peptides, and both TTG and DGP tests can be done with IgA and IgG antibodies. Hope this helps!
  15. RMJ
    That doesn’t sound like celiac disease. Could it be “floaters”?
  16. RMJ
    You could have your blood tests repeated after 6 months of being strictly gluten free and see if they return to normal levels. If they do, that would be another indication that you have celiac and that gluten isn’t good for you.
  17. RMJ
    In your original test you only tested positive on the DGP antibodies, not TTG. In the second test, they only tested the TTG antibodies, which were negative - like they were in the first test. So your results are consistent, just an incomplete panel for the second test. There are several different antibody tests for celiac disease. You don’t have t...
  18. RMJ
    Although lactase deficiency is the most common, there are other disaccharidases required to break down other sugars, such as sucrose, and to complete the breakdown of more complex carbohydrates. Have you spoken to your doctor about the results? Hopefully he/she/they can give you more information about what it means and what foods to avoid, enzymes...
  19. RMJ
    I’m not sure what “low disaccharides” means. Could it have been low disaccharidase? That would be the enzymes that breaks down lactose and other disaccharide sugars. When not broken down the sugars can lead to digestive troubles.
  20. RMJ
    Celiac disease can cause neurological issues in some people. I’m glad you’ve got a referral to a neurologist and hope you can get an appointment soon. It must be very difficult wondering what is going on in your body.
  21. RMJ
    The longevity of antibodies is measured using a concept called the half life - the length of time it takes for half of the antibodies to disappear from the bloodstream. Estimates for TTG antibodies are 2 to 6 months. This means they would remain pretty stable from day to day. However, there is another reason one might not get the exact same test results...
  22. RMJ
    Sounds interesting,thanks.
  23. RMJ
    Different people with celiac disease react to different amounts of gluten. Cross contamination is definitely something to think about. If not in control of her food, she might consider taking the enzyme GliadinX with meals that could be contaminated. It is only meant to help with contamination, not a full gluten meal.
  24. RMJ
    There does appear to be some association between ITP and celiac disease. I hope that going gluten free can help with your daughter’s ITP. Increased Frequency of Immune Thrombocytopenic Purpura in Coeliac Disease and Vice Versa: A Prospective Observational Study
  25. RMJ
    In case anyone else has this question - I tried a different brand of lactose free milk - Horizon. It is MUCH better. It is a little sweeter than regular milk, to be expected since the lactose is now galactose+glucose. But no weird/awful taste that remains on my tongue afterwards.
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