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dilettantesteph

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Everything posted by dilettantesteph

  1. dilettantesteph
    In my case, I felt all better just stopping eating bread and Cheerios. Then I started noticing reactions to lower levels of gluten. I researched where else gluten might be and I'd feel all better and then start reacting to even lower levels. Then I'd research more. This went on for some time until my diet is mainly unprocessed. If you are like me, you...
  2. dilettantesteph
    Irishheart, you comments are valid. I am really on the fence about this. This test does not test for celiac disease. They get many more positives than are obtained with intestinal biopsy. They think that the reason for that is that they are catching the disease before it has progressed enough to be able to be detected by biopsy. I really don't know....
  3. dilettantesteph
    I am sorry that I didn't respond to this sooner. I didn't see it until someone pointed it out to me. You have a kind person watching out for you there. Yes, he does go back to thinking clearly when we rid his diet of all gluten contamination. He even goes on long runs. Actually, he is recovering now. He was back at school yesterday. I also go back...
  4. dilettantesteph
    One thing that the tests say is that you have much higher than normal levels of the antibody to gliadin in you stool sample. Fecal Anti-gliadin IgA 191 Units (Normal Range is less than 10 Units) Gliadin is the part of gluten that celiacs react to which initiates the autoimmune response and makes them sick. The validity of Enterolabs tests is disputed...
  5. dilettantesteph
    You should research the neurological affects of celiac disease. I think that is where the thinking impairment comes from. It comes on too quickly when accidentally glutened for it to be due to nutritional deficiencies in my opinion. There are celiac disease neurologist specialists who also hold that opinion. It is an autoimmune reaction. It doesn't only...
  6. dilettantesteph
    I believe it is from cc at less than the 5 ppm test detection limit. I want them to come up with some more sensitive tests and start testing more things. I think that would be revealing and allow us to make some more safe decisions with our food choices.
  7. dilettantesteph
    I found that I became more sensitive to gluten cross contamination as time went on. It was very confusing. For example, I reacted to tomatoes from the store, but when I ate the tomatoes from my garden, I did not react to them. Same with strawberries. I had a terrible reaction to a rutabaga I bought in the market, but the next year I grew my own and they...
  8. dilettantesteph
    Do you perhaps react to lower levels than tested for the gluten-free certification, or do you react to oats? The Chicago Rabbinical Council has an alert about quinoa being possibly contaminated with barley or oats: Open Original Shared Link " It was also recently discovered that some farmers cover their quinoa with barley and/or oats to keep the birds...
  9. dilettantesteph
    My son and I both get nausea and reflux from gluten cross contamination in our foods. I would check your diet etc. for gluten contamination.
  10. dilettantesteph
    What I would do is eat only very simple diet of a few produce items and one kind of unprocessed meat with no added spices, alcohol, juices supplements etc. Keep track of everything in a food/symptom journal. Keep track of not only the items eaten, but where they were purchased in case that might make a difference in terms of cross contamination. Hopefully...
  11. dilettantesteph
    My reference above, as well as the one you linked to, IrishHeart, give 4,000 IU as the upper threshold for daily safe intake.
  12. dilettantesteph
    This reference gives the same numbers as the one I gave. It says "≥20 Generally considered adequate for bone and overall health in healthy individuals" - thats ng/mL, the units used in the US. As far as your doctor saying that he wants you above 50, it also says ">50 Emerging evidence links potential adverse effects t...
  13. dilettantesteph
    Thanks for your thoughts.
  14. dilettantesteph
    It sounds like you doctor is current with the latest recommendations which came out relatively recently. If you are in the US, 20 is considered just fine. What your levels should be depend on the units used for the test which are different in the US and Canada. Also, a lot of tests still use out dated values. This is the latest information that I...
  15. dilettantesteph
    My school district's policy is that you have to sign the HIPAA form to get the 504 plan. It seems to be legal within our state's laws.
  16. dilettantesteph
    Life is difficult when you react to more things than the typical celiac. You have to stick to what you know works for you. You have to research ingredients before trying things. You have to minimize risk as much as you can. You have to not live in fear despite all that. You have to try not to feel like you are crazy and overreacting. When you get sick...
  17. dilettantesteph
    Thank you for confirming my opinion. It is hard to find a doctor who is really knowledgeable about celiac disease and who keeps up reading the latest studies. They want me to hand over my child's school care to some district doctor who I've never met. What assurance do I have that she knows anything about necessary precautions for celiac disease? My son...
  18. dilettantesteph
    What your levels should be depend on the units used for the test which are different in the US and Canada. Also, a lot of tests still use out dated values. This is the latest information that I know about: Open Original Shared Link This is the press release which gives a summary: Open Original Shared Link " The measurements of sufficiency and deficiency...
  19. dilettantesteph
    It is really hard to protect your child from other peoples food while at the same time making things as normal as possible. You need to work with the teacher to figure it out. My son sometimes has to work at his own desk space a bit away from all the food. Sometimes he will ask people sitting near him to wait until later to eat. It really depends on individual...
  20. dilettantesteph
    This is telling. Some packaged foods are better than others when it comes to cross contamination. Eating larger amounts of these kinds of packaged foods will make the effect worse. Some of us become sensitive to lower levels of cross contamination as time goes on. That definitely happened to my son and me. You may want to stick with processed foods that...
  21. dilettantesteph
    At my child's school, we are required to relinquish HIPAA rights in order to obtain a 504 plan. I didn't like that idea. Do you have to relinquish HIPAA rights? The work load is a definite issue. At my child's school, they give one day to make up each day sick. It is a problem when on return to school, they have to double an already difficult work...
  22. dilettantesteph
    This study shows that both sublingual and oral supplementation are effective: Open Original Shared Link It is talked about here: Open Original Shared Link
  23. dilettantesteph
    I would consider how sensitive your family is before making a decision. Also, how likely is it to be contaminated. Was it just in the box, or was it packed in the cereal? How likely is it that it came in contact with gluten.? Will you child put it in her mouth? Did you find that you needed to be a gluten free household? I understand being upset that...
  24. dilettantesteph
    I think that you need to find a doctor who is more knowledgeable about celiac disease. You don't need positive blood work for a diagnosis. A positive biopsy is the gold standard for diagnosis. You need a doctor who can look at the results of the biopsy with a better understanding of the disease.
  25. dilettantesteph
    I don't think that he read my reply either. I don't often have time to get on here more than once a day. Sometimes I check if I've posted something like the above. I don't like seeing such blatantly incorrect statements go without challenge. Who would have infants taking capsules in a study? You ever tried to get an infant to swallow a capsule?
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