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dilettantesteph

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Everything posted by dilettantesteph

  1. dilettantesteph
    My son and I, both celiacs have had problems with nosebleeds. I rarely get them since diagnosis, but for my son, they are a sure sign that he has been glutened. He is sensitive to lower levels of cc than I am. They go away again within 3 days or so upon removal of the offending food. He is on a very strict gluten free diet and every new food is added...
  2. dilettantesteph
    I don't think that this is the problem so much as - what is the definition of gluten free? In the U.S. there is no definition yet, but a proposed definition is under 20 ppm. That isn't enough for all of us. Open Original Shared Link I wish you the best finding safe foods for yourself. You may do better with items made in gluten free facilities.
  3. dilettantesteph
    Can you tell me, do you normally throw up when glutened? I don't. A few weeks ago I got really sick with a lot of throwing up to the point where I was barely conscious. My husband took care of me or I probably would have thrown up all over myself and everything around me and who knows, chocked to death. I assumed it wasn't gluten because it was so different...
  4. dilettantesteph
    If it's any comfort to you, you aren't alone here. Just when I think that it isn't possible to get any more sensitive, it happens. I don't blame those who don't believe it. I'm not sure if I would either, if I weren't wearing these shoes.
  5. dilettantesteph
    Thanks for posting about this. This happened to someone I know and we hadn't connected it to gluten, but she was recently diagnosed and gluten free.
  6. dilettantesteph
    Me too, I was so glad to be able to add dairy back to my diet. I think I am very rare to be so sensitive and still be able to tolerate dairy. Of course, it is carefully sourced. Plus, when I get glutened, lactose intolerance is one of my most noticeable symptoms.
  7. dilettantesteph
    Maybe some people just have a hard time conceiving that there are some more sensitive than they are. This could be especially so if they were very sick. Unfortunately, that attitude can be very damaging to someone who is more sensitive. It can convince them not to consider the possibility of super sensitivity. That is what happened to me, and my son...
  8. dilettantesteph
    That happens to me too. I'm not sure if anyone mentioned this...keep a food/symptoms journal to figure out what is doing it to you.
  9. dilettantesteph
    I hope that I haven't given the impression that I believe that because I don't. Really, most celiacs don't have any symptoms even on a total gluten diet. Those are mainly the ones that haven't been diagnosed. I hope you heal up fast. It has taken me quite awhile too.
  10. dilettantesteph
    That's great. This forum has come a long way.
  11. dilettantesteph
    We have other people on this forum who say that these people actually are reacting to the fat in their food, have other intolerances, or are crazy obsessive. I agree with the milled flour comment. I think that there are some other foods that are commonly cc'ed due to farming processes. I hope to see more research on that topic so that we super sensitives...
  12. dilettantesteph
    You have my sympathy. I am also very sensitive. I think that you should do the things that you know that you have to do. Don't let people talk you into doing things that you know are not safe. You can go to a restaurant and socialize and not eat anything there if that is what is safe for you. I find it best to say that I'm not hungry rather than go into...
  13. dilettantesteph
    This is hard. For one thing we are comparing ppm and mg/day which don't directly translate since it depends on how much you eat of the stuff. I think that different definitions of super sensitivity also exist so who knows if we even discussing the same thing there. Perhaps we can agree that a celiac/gluten intolerant having problems with gluten...
  14. dilettantesteph
    Sorry, just saw this, I worked yesterday. I don't remember the details and am glad that Skylark replied to you. I need to get to taxes and the FAFSA application. Hope you enjoyed the robotics, my kids did that too.
  15. dilettantesteph
    This got me thinking because I am looking for some high fat foods to put in my diet. The fat content of So Delicious coconut milk is 5 g total fat and 5 g saturated fat/cup. Open Original Shared Link The fat content of whole milk, which I tolerate just fine is 8 g of total fat and 5 g of saturated fat/cup. Open Original Shared Link I didn't look up...
  16. dilettantesteph
    Two of those are studies on small amounts of gluten and not case reports: 1.5 mg/day (Chartrand) and 4 mg/day (Ciclitira). I don't know if you consider those amounts to be small enough to show super sensitivity or not. They seem to fall under certification levels. Your points about targeting super sensitives in particular for a study are valid.
  17. dilettantesteph
    This was originally published in 2009, and updated Feb. 2011, by Tricia Thompson: Open Original Shared Link It says that Rice Dream barley enzymes were tested and found to be gluten free with a sensitivity level of 5 ppm. The resulting milk should have even lower levels than that. If anyone reacts to it, they must be sensitive to extremely low levels...
  18. dilettantesteph
    I'm so sorry that my link didn't work so that you could have seen that for yourself. Here's the correct one: Open Original Shared Link For some reason when it is posted it puts those things in there. Take them out and it will go to the website.
  19. dilettantesteph
    Well stated.
  20. dilettantesteph
    From an earlier post in this same thread:
  21. dilettantesteph
    Sorry for putting the wrong words in your mouth. I didn't even know that there was petroleum based fertilizer. I went into another window and searched that and it looks I've come across another controversy. I don't think I want to get into that.
  22. dilettantesteph
    Can you please provide references for those NUMEROUS studies? I am only aware of this one: Open Original Shared Link This is what the FDA analysis said about it: (link provided above for FDA study) "Also, it appears possible that the most sensitive celiac patients were not considered for analysis in this latter study, because those with any initial...
  23. dilettantesteph
    Someone in my local support group posted about this. I apologize if it has already been posted here recently. I did a search and didn't find anything. Generally we think of tea as gluten free. On the Tazo tea website, in the FAQ's it states: Open Original Shared Link "All of our teas are gluten-free except for the following: Green Ginger, Tazo Honeybush...
  24. dilettantesteph
    It isn't really "one study". It is a comprehensive analysis of all the relevant studies about reactions to gluten that the FDA could find which are among the 101 references in the study. I give this reference because everything is in there, plus it is interpreted for us. ????? There are many other numbers under 1 besides zero. If not in biology...
  25. dilettantesteph
    From the glutentox website: Open Original Shared Link "How sensitive is GlutenTox Home? You can choose the sensitivity of each test you perform: either 20ppm or 5ppm." What test did he use that tested for <5 ppm?
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