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gf-soph

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Everything posted by gf-soph

  1. gf-soph
    Canker sores are my first and most reliable indication of when I have been exposed to gluten. I had them horribly for years, then they disappeared within 2 weeks of going gluten free - I was so happy! I don't think you should treat it too lightly, it means that somehow the gluten is damaging your body. Your only obvious symptom may be the sores, but you...
  2. gf-soph
    I have fructose problems too, and was definitely thinking of that reading your description. I had a banana the other day for the first time in ages, and I had unusually bad gas a while after, sorry if TMI. Looking at the literature the most recent testing found bananas are ok, but some others have found they are a problem, so I am treating them as suspect...
  3. gf-soph
    Is he redoing your gluten blood tests? I found those useful for monitoring my diet compliance, I did get glutened accidentally a few times, and helped me to work out my glutening symptoms in the early stage. If they haven't fallen greatly then it's likely that you are getting glutened. The next step would be to get really militant about gluten. I would...
  4. gf-soph
    It does suck that they aren't more supportive. I don't think you have to 'suck it up' in the sense that it doesn't matter, but you have to choose the best way to deal with the situation. If they haven't had much exposure to the diet and other issues, get them one of the books about it - sometimes it has more credibility coming from an independent source....
  5. gf-soph
    I can't remember if I've asked already, but are you seeing a dietician through this? If not, can you? Are you able to find any basic nutritional supplements to take? There's no way I would have lasted on this elimination diet if I wasn't using sustagen. It has dairy and I think soy so it's no good for a lot of people, but you might be able to find some sort...
  6. gf-soph
    I don't know the mechanism, but i am gluten intolerant and have a definite malabsorption problem even 2 years gluten free. I am having both iron and b12 injections as no matter what I do I just can't absorb them. I am also right at the bottom of the range for vit D despite living in Australia. I have also developed other food intolerances over time that I...
  7. gf-soph
    You certainly could have a combination of both. The acne and cylical problems sure do sound hormonal, as do the cysts. The multiple deficiencies is more of a celiac/gluten issue, as is digestive problems. Foot cramps are my first sign of glutening as well. I have heard of hormonal imbalances worsening other symptoms of food intolerance. Do you have PCOS...
  8. gf-soph
    It's good to know that it's helpful, glad to be able to help! The thing is that RPA and fodmap are covering totally different things as they deal with different sets of chemicals, so you have to exclude a lot to follow them both. I don't see RPA as a long term diet, just that with both of them I can establish a great baseline to work out how they all affect...
  9. gf-soph
    Firstly, I totally get where you're coming from. I also know how easy it is to convince yourself that you should be able to eat a certain way. But at some point you have to listen to your body and your test results. Also realise that it might not always be this way, but by being super careful you will likely prevent your health problems from progressing....
  10. gf-soph
    I'm not familiar with the dgp, so can't give you any advice there. However, it may well be that the gluten free/lite times before testing has allowed your body some healing time and reduced your blood levels. Or it may be that it wouldn't show up anyway, the testing is not 100% and the way gluten effects your body is complex. You sure check plenty of boxes...
  11. gf-soph
    You definitely are not the only one. I'm totally off fodmaps while on an elimination diet, and it's helped so much. I am no sort of athlete, but I also am realising that I have some major problems with sugar. It's harder to give up than gluten, and that's saying something. I have heard that a good basic electrolyte solution is a combination of sugar...
  12. gf-soph
    The fact that you reacted to oats doesn't rule out celiac or gluten intolerance. The protein in oats is similar to gluten, so some celiacs can eat oats, and some can't. It may be that you react to gluten and to oats. It may also be that the food you ate at your friend's place was contaminated with gluten. I find that decaf coffee is fine for me if my system...
  13. gf-soph
    As someone from Sydney, I have been able to get the benefit of our advanced knowledge about fodmaps - a rare time when we seem to be at the cutting edge! I found this link through a post about the breath testing on the fructose malabsorption yahoo group Open Original Shared Link It's about how to prepare and what happens, but it doesn't mention...
  14. gf-soph
    I just wanted to say that I've been in a similiar state of mind in the past, the complete hopelessness about ever getting better and the pain about what you are missing out on. It's truly awful. Your health situation seems complicated and you clearly have a lot of different factors to weigh up when deciding what to do. I hope you are able to find something...
  15. gf-soph
    It sounds like regardless of any testing decisions, with your family history and your current symptoms you would want to go gluten free for at least 6 months. Once the neuro symtoms come in to it you want to give your body plenty of time to heal. It's good that the B12 is helping, but be on the look out for other possible deficiencies as well, they are pretty...
  16. gf-soph
    I'm technically non-celiac gluten intolerant too. When someone asks why I'm not eating the usual food, I ask them if they've heard of celiac. If they haven't, I give them the basic info, e.g. 'when I eat gluten, which is the protein in wheat, barley and rye it causes my immune system to attack my digestive tract and it makes me very sick'. If they've heard...
  17. gf-soph
    It's good that you've had the capsule endoscopy as that will be able to tell you for sure, but from what you've said it seems unlikely. You don't really meet the symptom profile at all. I was evaluated for it due to long standing iron problems and continuing GI problems, mostly D with some pretty severe pain. My gi problems were at the less severe end...
  18. gf-soph
    The best lists are available on the fructose malabsorption yahoo group, as members upload the lists given to them by dieticians. There is a 2010 updated FODMAP handout by Sue Shepard, who is the pioneer in the area. There are also research papers that have worked out the exact composition available there. If in doubt about lists, trust ones by Shepard or...
  19. gf-soph
    The thing about fructose and fodmaps is that it isn't like gluten and celiac where you have to totally avoid them. Often you have some amount that you can tolerate, you can get a lot of information about the best way to test it out. If you're only bothered by fructose, there are ways to minimise symptoms e.g. choose safe fruits, or have small amounts of...
  20. gf-soph
    I haven't personally as I haven't got to the reintroduction stage to find out. But I do know that others on the FM yahoo group I'm on have definitely commented on it. For people with FM, undigested fructose can bind to tryptophan and stop it absorbing. Tryptophan is a precursor to serotonin, which is important for regulating mood. So there is a physiological...
  21. gf-soph
    There are different brands depending on whether you are in coles, woolies, iga etc. I'm not a fan of most of the gluten-free breads they sell, but IGA does sell a brand called Zehnder, the wholemeal is to die for. I find more of my favourites in woolies than coles, but coles has an arrangement to give special discounts to celiac society members, so you have...
  22. gf-soph
    You are definitely not alone here, unfortunately a lot of people have a complicated road back to good health. I know how you feel because I've been there! I'm now 2 years gluten free, and in the middle of an elimination diet that's finally had me feeling totally well at times. I definietly agree that you should head to the doctor asap and get those blood...
  23. gf-soph
    You've had some good suggestions already, and it sure sounds like it could be a direct gluten rection. However, I thought I'd mention that it could be useful to have your B12 and iron levels checked as what you are describing sounds a lot like how I feel when I am B12 deficient - things spinning, worse when moving about, general weird feeling. I used to decribe...
  24. gf-soph
    I've had about 6 or so over 2 years. They always involve an everyday situation at home where I just grab something boring like a piece of bread from the table and eat it, then have a terrible moment of realisation that I'd forgotten all about gluten. I then get almost hyterically upset, and it can go on for ages. Unlike most of my dreams they always feel...
  25. gf-soph
    There are a couple of posts here already about FM that might help. There is a great yahoo group that you could ask to join. Not only is it an acitve and helpful group, but they have a file section where people have uploaded the most recent guidelines handed out by dieticians in the know. It would be the single best place to start that I can think of. Try...
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