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dilettantesteph

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Everything posted by dilettantesteph

  1. dilettantesteph
    Thanks for that post...I think.
  2. dilettantesteph
    Have a look at your food/symptom journal. Keep in mind that the offending food could have been eaten the day before or even two days before. I try not to make more than one change a week because I have found that it can take that long to notice a reaction. When you are having problems and don't know why, it can help to limit you diet to produce and...
  3. dilettantesteph

    ARCHIVED Honey

    dilettantesteph replied to GFreeMO's topic in Super Sensitive People

    I have had problems with all sorts of honeys but did well with Volcano Island honey. It is very expensive though, so if you can find another one, that would be better. They have also just changed ownership and I don't know what the new owners might change about the process. The former owners had some descriptions on their site about what they do to not...
  4. dilettantesteph
    Could you get an anti gliadin test instead?
  5. dilettantesteph
    Most of the beans that I have come across are processed on lines that also process wheat. That can be the case with other foods too. Have you considered gluten cross contamination as a source of your problems rather than food intolerances? Keeping a food/symptom journal is very helpful in either case. It can take a week to notice a reaction to a new food...
  6. dilettantesteph
    The best way to find out would be to eliminate them and see what happens. Different celiacs have different sensitivity levels. Some have problems with those kinds of products and some don't. (I do.)
  7. dilettantesteph
    Just because a product is labelled gluten free doesn't mean that it has been tested for gluten. In fact, at the moment it doesn't mean much of anything at all. There is a proposed allowable gluten level, but regulations have not been passed. The "processed in a facility..." statement is voluntary. It not being there does not mean that there is no gluten...
  8. dilettantesteph
    I don't know about funny, but certainly unexpected. I had been wearing glasses for 30 years. My vision got blurry and after awhile I noticed that it wasn't blurry with the glasses off. I didn't need glasses anymore. I went to the opthamologist. She couldn't explain it, but said that I needn't keep coming for all that vision testing that she had been...
  9. dilettantesteph
    You could also consider super sensitivity. My son and I, for example are super sensitive and react even to the tiny levels allowed in certified gluten free foods. Keeping a food/symptom journal and doing elimination/challenge diets can help to sort that out.
  10. dilettantesteph
    I understand completely. I go to crazy extremes myself to eliminate gluten. I recognize the fact that not everyone wants to do that so I wanted to offer several options.
  11. dilettantesteph
    I would suggest going back to how you were eating before and then just change only one thing per week. It can take that long for a reaction to show up. It takes patience, but it is better than being in the situation that you are in now where there are several possibilities and you don't know which one it is. Believe me, I am familiar with that situation...
  12. dilettantesteph
    Thank you for replies. This was a follow up endoscopy while already gluten free, but suffering minor symptoms from slight gluten contamination. I think that I just wasn't being patient enough with improvement upon finding a safer diet. Things seem to be going better now.
  13. dilettantesteph
    Some celiacs such as my son and I react to even the proposed accepted levels. In the study done which determined those levels to be safe, one participant had to be excluded because he reacted to those levels. While they are safe for the vast majority of celiacs, they are not safe for absolutely all celiacs. Some of us need to be on a diet of produce and...
  14. dilettantesteph
    How have peoples symptoms been affected by endoscopy and biopsy? Do they worsen for a few days from the procedure itself? I'm trying to figure out what is going on, and I don't remember ever reading about this.
  15. dilettantesteph
    I am so sorry about what happened to you. It really illustrates how hard it can be to go back on gluten for testing. Thank you for sharing that experience. I would go for a diet of produce and unprocessed meats. That way there would be little chance for contamination. Keep a food/symptom journal in case of other food intolerances. Keep the diet simple...
  16. dilettantesteph
    There is another possibilility that I don't think anyone mentioned. Some celiacs are sensitive to lower levels of gluten than others. My son and I are sensitive to very low levels. Some also increase in sensitivity as time goes on. That happened to my son and I. We are on a diet now of mainly home grown food. I am not suggesting that you do that though...
  17. dilettantesteph
    We also find that stress makes the reflux worse. Still, in the absence of gluten contamination, my son and I don't get the reflux. Everyone is different though. My GI told me that he thinks that most if not all cases of refractory sprue come from people who are sensitive to lower levels of gluten than normal.
  18. dilettantesteph
    My experience seems different from others here. It has been close to 6 years now. I hadn't been eating dairy for years when I was diagnosed, but I was able to add it back after about a year. Then I started reacting to it again. I found some grass fed milk locally and I can drink that, but when winter comes, the cows get wheat and I can't drink it anymore...
  19. dilettantesteph
    I sympathise with your problem. My son and I were diagnosed at the same time. He is 15 now, and I have an understanding of how hard this can be on a teenager. At first we got better so quickly. Then symptoms kept returning. I found out from the store nutritionist that some of the products were made in facilities that also process wheat and some celiacs...
  20. dilettantesteph
    We couldn't do it, but we are super sensitive. Could it have been from something else?
  21. dilettantesteph
    A friend went to visit family recently and the brother in law went to Trader Joe's to buy gluten-free food for him. An employee told him to get stuff with purple labels. They got him all sorts of gluten containing things like wheat pretzels. This would be funny except that a newbie might actually eat the stuff without checking the ingredients for himself...
  22. dilettantesteph
    I totally understand that. So, do what Mushroom said. Get the tests now. You can stop eating gluten and the tests might still work for a short time. If that doctor won't do it, find another one that will. Get it done as soon as possible before it gives you a false negative because you have been off gluten too long. You might not get another chance.
  23. dilettantesteph
    This sounds really terrible for you. I would like to offer you some hope. It is possible that you were having symptoms but didn't know it. I had all sorts of symptoms that I had no idea were caused by gluten until I had been off it for awhile. I had obvious GI issues such as uncontrollable diarrhea which went away, but many more thing improved too. It...
  24. dilettantesteph
    In my case, I looked at carb contents of foods and which bothered me the most. Some high carb foods didn't bother me. When I considered cc, it seemed a more likely source of problems. Super sensitive celiacs can react to even the low levels allowed in gluten-free foods. I was fortunate to have a GI who told me about this. Knowing about this enabled me...
  25. dilettantesteph
    I thought that too. I had no idea how impossible it would be. I get so sick just from a tiny bit. It would be horrible to eat enough for testing.
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