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dilettantesteph

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Everything posted by dilettantesteph

  1. dilettantesteph
    I am really sensitive. I take the most gluten-free whole grains possible and then wash. Even then I'd rather just eat what I can grow because I can still get glutened. At this point I would go hungry a lot without some alternatives. Someone less sensitive wouldn't have to be as particular.
  2. dilettantesteph
    You could try skipping toothpaste for a couple of days and see if it makes a difference. I would guess that it is something else. Another thing, do you get reactions right away? It takes me until the next day to know so that it could have been anything I ate the day before.
  3. dilettantesteph
    Yes. what helps me is to sort through my grains and remove anything that looks like it could be a gluten grain. Then I wash them by shaking them in a jar with some liquid dish soap for few cycles. I was surprised at the color of the water that washes out. If not gluten, I am certainly removing a lot of dirt. Then I rinse very well. I haven't had good...
  4. dilettantesteph
    As far as how careful you have to be and for how long goes, there doesn't seem to be a way to tell ahead of time. You just have to try and find out. I'd start with a normal gluten free diet. Sometimes you will have an initial improvement and then experience symptoms again. That can be from an increase in sensitivity and will get better if you start being...
  5. dilettantesteph
    My anxiety and depression went away gluten free and return when glutened. Perhaps you just need a little more time on the gluten-free diet, or learning about what not to eat. I hope that you feel better soon.
  6. dilettantesteph
    Gluten does have an effect on my thinking. It makes me anxious and depressed and not terribly rational. I think that may be my worst symptom. I was so happy to get diagnosed and be able to be normal again.
  7. dilettantesteph
    Do they use flour in the kitchen? Could it be getting into the air handling system? Does anyone use your desk when you are not at work? Could anyone be eating gluten at your desk when you aren't there and be leaving little crumbs behind? Does anyone else use your computer or phone? Do you do anything else different when you go to work at the office...
  8. dilettantesteph
    I was also very active. I mainly did ballet and skiing, quite hard core. Then illness set it. It crept up over many years. I have a rowing machine, Concept 2, and did their Christmas challenge every year and kept records. After diagnosis I was able to look back and see how I had gotten worse and worse. I had thought that it was normal aging. It took...
  9. dilettantesteph
    Some celiacs are able to handle more trace gluten than others. You may be a more sensitive one. Do they use shared processing lines or facilities? You may find that you do better avoiding those. I hope you feel better soon.
  10. dilettantesteph
    I find that I get very anxious and paranoid when I am suffering a glutening. It helps me control it a bit better when I tell myself that. I think that you should have told her, why take Celexa when punching her would work so much better? LOL Doctors can be really annoying. Of course you are anxious when your child is sick.
  11. dilettantesteph
    Last I heard, they were made in the same facility as their gluten containing cereals. There is a possibility of cc for those of us more sensitive. Does anyone know? Does anyone know if they test their ingredients such as the cinnamon prior to processing? This reference: http://celiacdisease.about.com/b/2012/07/11/general-mills-launches-gluten-free...
  12. dilettantesteph
    I just posted about this in another thread. Do you know that the symptoms are beyond celiac? Why not discuss this study with your son's doctors? There is a Fasano study published in a peer reviewed journal with where celiacs still experiencing symptoms on a normal gluten free diet were treated with a gluten contamination elimination diet of whole unprocessed...
  13. dilettantesteph
    There is a Fasano study published in a peer reviewed journal with where celiacs still experiencing symptoms on a normal gluten free diet were treated with a gluten contamination elimination diet of whole unprocessed foods: Open Original Shared Link That is what I did to eliminate my symptoms and those of my son.
  14. dilettantesteph
    I checked into this. While they are required to give you copies of your records, there isn't a time limit and you might end up waiting a month anyway. It might work better to work around the people who don't want to give you the results by asking the facility directly. Also, if you ask them to be sent to your primary care doctor (if that one is cooperative...
  15. dilettantesteph
    I agree that it would be a good idea to look into the trace gluten issue. That was our fate as well. My son and I are both very sensitive to trace gluten.
  16. dilettantesteph
    It was a follow up biopsy, and it was negative (on my son). That was nice, but the first time I talked to the pathologist, he didn't seem to know anything about Marsh stages and told me that he needed the first test result to compare with to see if there had been improvement. There seems to be a little lack of knowledge there.
  17. dilettantesteph
    That happened to me. I called the (GI) doctor's office and asked to have the tests sent to the primary care physician. Believe it or not, that didn't work. So then, I phoned the facility where the biopsy was done and asked them to do it. It worked. The primary care physician gave me the results over the phone. I wish that I hadn't gone to the GI and...
  18. dilettantesteph
    A negative biopsy does not mean that you aren't reacting to trace gluten as a super sensitive. If you read the study that I posted recently about that in the super sensitive section you will see that some participants had negative biopsies but symptoms at the start of the study. https://www.celiac.com/forums/topic/100327-trace-gluten-responsible-for-ongoing...
  19. dilettantesteph
    I spoke with a farmer who pollinates dates with pollen cut with flour and then places a bag over the flowers to protect the fruit. The whole thing would be somewhat contaminated with flour at that point.
  20. dilettantesteph
    Once you start reacting to other things, it can be a long process to figure out exactly what it going on. It is very helpful to keep a food/symptom journal. Sometimes you want to go back several months and it is just too hard to remember. It can be contamination with gluten, or it can be other intolerances, or even other conditions. In my case, it...
  21. dilettantesteph
    I'll second that. Certified gluten free can still have just under 5 ppm gluten. I know that I reacted to a tiny bite of something that was certified to under 20 ppm. If I want to eat any substantial amount of anything, it has to have a lot less than 5 ppm.
  22. dilettantesteph
    It seems that the people who have problems with grains are the ones who are sensitive to low levels of gluten. There are several studies about gluten contamination of grains, Tricia Thompson did one. I have bought many whole grain samples and sorted through them to find the occasional gluten grain. It seems that shared fields from crop rotation, shared...
  23. dilettantesteph
    I take the one talked about here: https://www.celiac.com/forums/topic/100515-celiac-and-align-probiotic-does-anyone-take-it-side-effects/?hl=%2Balign#entry858827
  24. dilettantesteph
    I developed lactose intolerance too. That was considered normal. Stop eating cheese then, dummy.
  25. dilettantesteph
    You might want to be aware of this study of refractory celiac patients. https://www.celiac.com/forums/topic/100327-trace-gluten-responsible-for-ongoing-symptoms-study/
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