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gf-soph

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Everything posted by gf-soph

  1. gf-soph
    It's good that it's been checked, couldn't hurt to have another look. When I was I sure know about poor medical advice, I kept eating gluten for a full year after positive blood tests that I was told were meaningless! The good news is that for us Aussies, the labelling is clearer than other countries, and our gluten-free standards are stricter. If you...
  2. gf-soph
    Have you had your B12 and folate tested? Some of your symptoms could link with that, especially the tingling and weird muscle sensations. I would strongly suggest that you get these tested, and get the printouts of your iron and celiac panel. If you're not sure about anything, post the results (and reference ranges) here. Make sure your doctor is getting...
  3. gf-soph
    It sounds like an elimination diet could be a good idea. There are a lot of ways of going about it, so the best general adice is to keep a really thorough food diary. List everything you eat and when, and keep a running list of how you feel during the day. The approach I use is to make a list at the start of the process of everything you feel is wrong...
  4. gf-soph
    There's another recent post about this, but I definitely have a problem with it and I'm not the only one. In my case I think brown rice is worse than white, but I'm not eating any at the moment, so I'm not sure that I'm even fine with white. What is an enriched rice? Could it be that whatever they are adding is what you're reacting to? Why not try a basic...
  5. gf-soph
    It's been a massive undertaking sorting it all out, and I have a lot of work to do, but it's such a relief knowing that at the end I'll be fine. I didn't have any hope of that before this process. I definitely know what you mean about lucky timing, I'm so thankful that I'm gluten free now instead of 10 or 20 years ago, let alone knowing about fodmaps and...
  6. gf-soph
    Oh, I can't do chocolate at all, pretty much any confectionery sends me right off but chocolate seems to be even worse. Sigh! Maybe down the track. There are some people on the list who are very sensitive but it's like here, there's a spectrum of sensitivity. Most people learn their tolerance level across categories and manage it that way, rather than...
  7. gf-soph
    I appreciate your concern, and I'm not claiming to be fully aware of the current state of research into long term health effects of unfermented soy, but I did have a look at the websites you linked to and I can't see any peer reviewed published studies there to back up their assertions. If anyone does have that sort of information, I will happily take a look...
  8. gf-soph
    I'm not sure about the breath test, I think that you can just load up before hand, it's not like gluten loading before celiac testing. Different labs have different guidelines though, so you can ask before testing. I definitely have FODMAP problems. I self-identified a lot of fodmaps as no-no foods before I even knew what fodmaps were, so the evidence...
  9. gf-soph
    I have a definite sensitivity to large doses of glutamate such as MSG, I get major and sustained face flushing and headaches. I also seem to have some level of sensitivity to some classes of amines, though I am still testing them out. I am eating soy and dairy and doing ok, but I have cut out all other sources in the diet so I must be going under my personal...
  10. gf-soph
    I know how you feel - I am currently on low FODMAPs, low sals/amines, vegetarian, and not eating any grains. Thank god I can tolerate dairy and soy, or I would die. It's kinds of nuts how long this elimination diet is taking for me, but when I hit the good days I know it's worth it. I'm yet to do enough food challenges to be sure about the salicylate...
  11. gf-soph
    A dietician is the best sources, but they don't all know about it. You are most likely to find one in Australia, as that's where the fodmap research team is based. If you can't, I have heard that the dietician practice of Sue Shepard can do skype consultations, I have heard of several people finding this very useful. There are a lot of different lists...
  12. gf-soph
    I am another aussie, and I was so upset when I read that the celiac society was going to start endorsing 20ppm. It's a bizarre situation though here, I can understand that they have to make decisions based on evidence but when you are someone who knows that they react to very small amounts of cc it's disheartening to know the standards are being decreased...
  13. gf-soph
    As someone else on the fodmap diet I have come to realise how many symptoms can be caused by fructose and fodmaps. For myself I know that gluten is a problem, and I feel that my gluten sensitivity caused the digestive damage that then caused fodmap problems. I do think it's possible that someone with significant fodmap reactions could mistake this for...
  14. gf-soph
    I definitely have an intolerance to rice, I found this out while on an elimination diet, when I increased my rice consumption my digestion went crazy. I also had mood and concentration problems. This was caused by eating a lot of brown rice products, though I seemed to be ok with white rice before, so I'm hopeful that I might be ok with white rice. A few...
  15. gf-soph
    I had had problems with noise sensitivity, though for me I think it is more related to other food intolerances than to gluten, as it has actually been worse since i've been gluten free. When I am having a food reaction I am very sensitive to noises, I will literally jump at a small thing. I think it's related to FODMAPS, though there is a chance it is...
  16. gf-soph
    I had a lot of ongoing gut problems after going gluten free (was 'diagnosed' with IBS), and the thing that has really helped me the is FODMAP diet. If you google it there are some good resources, but if you are thinking of giving the diet a go you should follow the guidelines from Monash University, as they scientifically test the levels in food. Apart...
  17. gf-soph
    Have you had your folate levels tested? Since you are low in B12 and iron it's important to get it checked, as it also causes anemia. I found that it took a long time to get my iron and b12 levels stable, and a long time for my d to rise at all. I started showing low levels in 2007, and had intermittent injections for iron and b12 until mid 2008, when...
  18. gf-soph
    As long as you can cover your nutritional needs there's no reason not to go vegetatrian. Some people go back to meat if they have problems with dairy or soy, but it's a personal choice. Since you aren't eating dairy, you need to make sure you can eat legumes and some soy to replace meat. If you can, you will be fine. I would advise getting your iron and B...
  19. gf-soph
    I can't help with any research, but I can say the answer is a big yes for me. I had positive blood work and negative biopsy, and had very difficult to manage iron, B12 and D deficiencies. I had ongoing regular injections for iron and B12 both before and after going gluten free. It probably averages out to 1 injection a month for about 3 years for both iron...
  20. gf-soph
    I know it's hard when you don't tick all the boxes for a clear celiac diagnosis, but as others have said, the positive antibodies really do mean something. I had positive antibodies (gliadin was about 4 times normal and ttg was about twice normal) and a negative biopsy, but I was convinced by the gastroenterologist that I didn't have celiac so there was...
  21. gf-soph
    I had positive blood work but a negative biopsy. In my own mind it is gluten intolerance, but one that is a subset of celiac as it resulted in severe illness and nutritional malabsorption. I also consider it possible that I would have ended up with a positive biopsy if I had left it a couple of years. When the topic comes up with someone, I say 'have you...
  22. gf-soph
    I do know what it's like to feel bad after eating anything, for me it lasted more than 18 months after going gluten free before I found the right elimination diet that helped me. I used to say that if I had the choice to stop eating and stop the pain I would, as I had so much pain all the time. It can get better! I would recommend keeping a food diary...
  23. gf-soph
    I had that feeling at times when I was eating chicken a while ago (am otherwise a vegetarian). I tested negative to skin prick allergy for it, but each time I ate it the sensations got worse. I also has the big D and swelling of the lips that got worse each time I ate it, and I got some throat tightness the last time, so I gave up. I also had a lesser...
  24. gf-soph
    There's 2 gluten free expos each year. One is run by the celiac society, it's the one at olympic park held in August, the date for the next one is already up. I think it's free for members too. Open Original Shared Link There is also one run by commerical groups, primarily coles, it was on in November last year, and I think they are yet to finalise...
  25. gf-soph
    It sounds like you are a good candidate for an elimination diet, your list of safe foods sounds like the basis of one anyway. If you eat just those foods for a few days and you feel better, you could try adding in one food at a time and see if you react. It might start to make sense of what you are reacting to. A food diary is a very good idea if you are...
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