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dilettantesteph

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Everything posted by dilettantesteph

  1. dilettantesteph
    Please don't do that. If all the polite supportive people leave as a reaction to those less polite and supportive, that will make the forum a less supportive place to all those other about to be diagnosed celiacs out there. Please stay and try to help the tone of the forum. I have looked at the cross reactivity studies and I think that you might want...
  2. dilettantesteph
    My son got diagnosed with anxiety right around that age. At age 10 he got diagnosed with celiac disease and the anxiety went away. It comes back when he gets glutened. I often wonder how he would have suffered if he hadn't gotten that celiac disease diagnosis. We are very fortunate that he has a well informed pediatrician. Anxiety was his only noticeable...
  3. dilettantesteph
    I'm so glad that things are getting better for you. That brain fog is terrible. I get it too.
  4. dilettantesteph
    How do you know it is gluten? It takes experience. It takes careful attention to your symptoms. It takes careful elimination/challenge diet studies. It takes a lot of reading. It takes phone calls to manufacturers. There are people who believe that if they don't react to something it can't contain gluten so they will tell you that it has to be something...
  5. dilettantesteph
    That's too bad that you had a reaction. It is too bad that sometimes we have to find out the hard way what we react to. Thanks for sharing. I hope you feel better soon.
  6. dilettantesteph
    I too agree with Gemini. I would find a new doctor.
  7. dilettantesteph
    I hope that you have had some results by now and are doing better. Was it something other than what you are eating? Sometimes I have problems with things that I consume without changing anything. Sometimes they have changed something. I can find out by eliminating things one by one. Either that or I go down to a just a few totally safe things until I...
  8. dilettantesteph
    To be more clear, I didn't realize that I was reacting to gluten free foods on my own. My GI doctor told me that it was a possibility.
  9. dilettantesteph
    Gemini, I think that I have as much proof that I am reacting to gluten when I eat something that contains gluten as anyone else here. There are companies out there that keep records of their gluten testing. You can call them with your product code number and they will tell you what level of gluten it contained. Amy's has done this for me in the past...
  10. dilettantesteph
    I am sorry that your have to deal with this. Some thoughts. You said that this hasn't happened to you since you went gluten free. I hope that don't come back. If there is a connection, then if you get accidentally glutened you need to be careful. My friend who has these seizures is not allowed to drive. It would be very dangerous to get one of these...
  11. dilettantesteph
    On their website: Open Original Shared Link it says that it is certified by the GFCO to 10 ppm. Unfortunately, I react to even these low levels as do some other super sensitive celiacs. What I need to do with new items, is add only one per week to check if I react to it or not. I had a very hard time early in my diagnosis figuring out what was going...
  12. dilettantesteph
    I have a friend who has these losses of time from strokes, or at least that is what his doctors say. It has happened in my presence a few times. It has lasted 5 minutes or so. It looks like he is day dreaming or something. He stays seated and doesn't fall off the chair or anything, but isn't aware, and doesn't respond. When he "comes to", he doesn't...
  13. dilettantesteph
    I do elimination dieting to check items for cc. My level of sensitivity is lower than the amount allowed in gluten-free food, so that label isn't necessarily safe for me. I have noticed that it can take a week or so for a reaction to be noticeable. I try to only add one thing per week. If something bothers me, sometimes I need to wait a couple of weeks...
  14. dilettantesteph
    Dried beans are generally harvested dry. They dry on the plant. At the end of the season when they are harvested, they are dry.
  15. dilettantesteph
    What soaps have you tried and what are you doing with them? How do you know that the soap is causing the pain? How soon after using it are you having the pain? I often notice glutening pain the next morning after I have eaten something with cc, and I can't tell what it is because it could have been anything I had during that day. I need to spend long...
  16. dilettantesteph
    It is really hard to say. Could it be cc? Could it be another food intolerance? How bad is the reaction? You could go back to a safe diet and then try these items one by one, one per week and the culprit would reveal itself. I hope that you feel better soon.
  17. dilettantesteph
    I had that problem too. I think it may have been gluten withdrawal. I stuck it out and it went away. That was almost 6 years ago so it is hard to remember, but it maybe took 6 weeks? Keeping a balanced diet including all nutrients should help.
  18. dilettantesteph
    I can't find the study which gives the 5% figure, which I have heard before. Here is discussion of one that showed villous atrophy, so I don't think that is considered a food intolerance, but a celiac disease complication. https://www.celiac.com/articles/717/1/Oats-Induce-Villous-Atrophy-in-Some-Celiacs/Page1.html Some of us shouldn't eat oats, myself...
  19. dilettantesteph
    That would explain my reaction to them then. Thanks.
  20. dilettantesteph
    That sounds difficult. In that study, some didn't get better with that diet. I think that some have to be even more careful. I seem to have problems even with certain produce. I need to vet everything with challenge/elimination diets. I've started growing whatever I can because that way I can know that it hasn't gotten cc'ed somehow. I eat rice from...
  21. dilettantesteph
    Gluten free Olympic athletes: Open Original Shared Link
  22. dilettantesteph
    Did you say where your rice was from? I've been doing well with rice from Thailand, where I read that they don't grow gluten grains commercially.
  23. dilettantesteph
    As a super sensitive, I am sure to buy grains in the whole form so that I can sort through them and remove gluten grains. After sorting, I wash with soap. I am sure to rinse very well. Even at that I tend to react, so right now I am eating rice from Thailand where they don't have much in the way of gluten grains. I still react to that unwashed, but washed...
  24. dilettantesteph
    Are the ones that you are eating more free of cc than the ones that make you sick? Does anyone test for gluten cc?
  25. dilettantesteph
    Have a look at this study: Open Original Shared Link Some cases of ongoing symptoms and refractory sprue clear up with a gluten contamination elimination diet. Some of us react to lower levels than others. I hope you feel better soon.
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