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dilettantesteph

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Everything posted by dilettantesteph

  1. dilettantesteph
    I have never said that tested to 20 ppm means that there is 20 ppm in a product. What I was saying is that beer contains 20-100 ppm gluten according to the link I gave. Her husband could have poured enough beer into their shared sauce to make it 10% beer and it would only then measure 2-10 ppm gluten from the added beer. Since he was drinking the beer...
  2. dilettantesteph
    The more voices for proven medicine the better. I thought that it might help to show that the information came from " the clinical and scientific expertise of The Endocrine Society, the world’s largest organization of endocrinologists, representing 16,000 physicians and scientists."
  3. dilettantesteph
    The gluten content of regular beer isn't actually all that high. I found a list of some tested and they range from around 20 ppm to around 100 ppm. Here is a list: Open Original Shared Link In my opinion, the amount that you would get from your husband drinking a beer and then double dipping is very low compared to the amount that you might get from...
  4. dilettantesteph
    Here is another worry. You could keep eating gluten for 6-9 months while waiting for the appointment and then the doctor could do the biopsy wrong. When I took my son to the pediatric dermatologist she said that he needed an unbroken lesion and she needed to do the biopsy on it, not next to it as described above. All his lesions had been scratched and...
  5. dilettantesteph
    I realize that I'm late to the game, but here goes. This is the source of the information: "The Hormone Health Network is the nation’s endocrine patient education resource. We are committed to helping patients have more informed discussions with their health care providers about hormone health, disease, and treatment. All of our educational r...
  6. dilettantesteph
    I didn't read this carefully enough but here goes anyway. Why would you need to eat gluten to get a positive diagnosis for celiac disease if you have active DH? A positive DH biopsy is a positive celiac disease diagnosis. Why not get that? OK, I reread and see the 6-9 month wait to see a dermatologist. I see that you want to know now. In that case...
  7. dilettantesteph
    I think that I have had problems with teeth cleanings, but with the delay between exposure and reaction of 12-24 hours, it is really hard for me to know the source with certainty. Since I have had them use unflavored pumice I haven't had problems.
  8. dilettantesteph
    Where did the olive come from? How could it have contained gluten? Does it have to do with how they are marinated? Could it be malt vinegar was used?
  9. dilettantesteph
    I see that your reply was only minutes after mine, so you might not have seen it. Please forgive me for reposting if you did. It is really hard when you can't be sure what caused your reaction. You have to depend on other people to not expose you and you can't know if they have or not. They don't take it seriously so they aren't careful. They won...
  10. dilettantesteph
    That's great that you are feeling better. I don't think that large amounts of nuts agree with anyone.
  11. dilettantesteph
    I had problems with recovery too. Initially I felt so much better just eliminating Cheerios and bread and I thought that all my problems were solved. As time went on, I had to learn more about where gluten contamination was and eliminate more things. Later I realized that I was sensitive to oats and oat contamination. Eventually I learned that I was sensitive...
  12. dilettantesteph
    That is not correct. Some testing methods involve an alcohol extraction. If alcohol denatured the gluten, that would not work. Open Original Shared Link
  13. dilettantesteph
    It is really hard when you can't be sure what caused your reaction. You have to depend on other people to not expose you and you can't know if they have or not. They don't take it seriously so they aren't careful. They won't tell you if they may have exposed you to something because they don't believe that it could be a problem. To figure out what is...
  14. dilettantesteph
    I get joint pain with swelling. On diagnosis the swelling was so bad that I had stopped wearing any rings. I had to keep putting them on smaller fingers and I gave up. After the gluten free diet my finger joints went back to regular size and I was able to wear the same rings on the correct fingers again. When I get into a bad period of glutening they...
  15. dilettantesteph
    What happened to me was that I became sensitive to lower levels of gluten cross contamination as time went on. Gluten free foods are allowed to have up to just under 20 ppm gluten. Many of them contain much less than this. This is the amount that is considered safe for the vast majority of celiacs. My son and I are not in the vast majority. Some of...
  16. dilettantesteph
    I am sorry that this happened to you. Schools vary widely with how they treat a celiac child. At my son's school, despite extensive documentation about how to treat his condition, they gave him gluten and then the principal threatened to call child protective services on me when I didn't send him in sick. He had already missed a lot of school before getting...
  17. dilettantesteph
    I have a question. If you know that you can eat large amounts of high histamine foods without symptoms, can you pretty well rule this out as the source of continued problems? This would be continued problems that come and go, but not in relation to eating high histamine foods. Can it be for example, that stress is your trigger, and high histamine foods...
  18. dilettantesteph
    That's what works for me. It's a good idea to keep track by writing it down. I get lazy and it can be hard to remember sometimes. I wait a week before adding the next thing because it can take that long for a reaction to get bad enough to notice.
  19. dilettantesteph
    Some celiacs are sensitive to lower levels than others. Some don't notice any symptoms on a full gluten diet. Some can eat "no gluten ingredients" without symptoms. Some avoid food processed in facilities that also process wheat. Some only eat food from a facility that tests for gluten to 5 ppm. I introduce any carefully chosen thing I eat separately...
  20. dilettantesteph
    Gemini, you and I go back and forth on this contamination issue. I just wanted to say that I agree with you that sensitive celiacs like you can drink coffee with no issues. I brought up the coffee contamination issue to say that if you react to coffee it is much more likely to be from contamination (which has been shown to exist) than from cross reactivity...
  21. dilettantesteph
    I would love to see a link for that! Do you have it. You can pm me with it if you don't want to give them presence here. Know what I've heard? Often when people see a report that says that something is wrong or doesn't work, later when they recall it, they remember it as being right. You've got the right idea not wanting to give them presence. Shoot...
  22. dilettantesteph
    I see that vitasoy makes an oat milk product. Around 10% of celiacs are also sensitive to oats. If you are one, than you could be responding to oat contamination from shared facilities. Not eating food that makes you sick is the thing to do no matter what the reason might be, cross reactivity, additional intolerance, or cross contamination. Just keep...
  23. dilettantesteph
    To pursue this idea further, look at the protein sequence in gluten that is responsible for the reaction. Where are proteins most likely to be found with a similar structure? Avenin in oats is one. Oats are closely related to wheat, barley and rye. Look at the genetic relationships between plants. The closeness of this genetic relationship tells us...
  24. dilettantesteph
    I think that you may be having problems with something called cross contamination. In your house, if baking has happened recently, there may be flour in the air, some of which may get in your food. The same thing can happen with bread crumbs, or pasta stuck in a colander, or gluten on a sponge used to wipe counters. The same thing can happen in manufacturing...
  25. dilettantesteph
    My children and I have all had problems after having our teeth cleaned. Now we stick with one hygienist who listened to our concerns and took them seriously. She had the office order unflavored products for us and we haven't had any problems since. We are much more reactive than the average celiac. From what I hear, dental products are not an issue for...
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