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Claire

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Everything posted by Claire

  1. Claire
    Saw your response and had to I do have been struggling for a long time - about 30 + years to get to the cause of multiple health issues. It took 10 years just to find out that I had Type II, Delayed Food Reactions - to a very lenthy list of foods. Though that helped I still had a long way to go. Right now I am only semi-diagnosed - have a serious neurologival...
  2. Claire
    I don't have anything to offer you except to agree with all the others who say go gluten-free right now - no delay. I am writing primarily to say - do not let any doctor tell you what test he will allow for you or for your children. You will have to be assertive if you are going to protect yourself and your children from the ego and ignorance of doctors....
  3. Claire
    Hi Chris, Have you been tested for an immune response to dairy? Lactose intolerance is one thing but there is also an often bigger problem with casein (the milk protein) which has a structure nearly identical to the gluten (wheat protein). Dairy can give you a big 'D' problem big time. So also will other food to which your immune system mounts a response...
  4. Claire
    I was a Rehab Therapist in both Rehab and Long Term Nursing Home care facilities. There probably is an exception somewhere but for the most part you cannot trust a Nursing Home to abide by dietary restrictions. The reasons go far deeper than not caring and are not the subject here. If Grandma must be gluten free then you will have to find a way to have her...
  5. Claire
    Not a receipe really - just an idea. Substitute coarsely ground potato chips (white or sweet) for the bread crumbs, - Gluten free of course. Always checking ingredients. Claire
  6. Claire
    I was just about to log out when I saw your post. Yes, here is a celiac/seizure connection. There is a lot of information on the internet and in books and neurological papers on the subject. If you write a good search you should find plenty of information. I am in limbo on diagnosis as the moment - after many years of battling symptoms and doctors. I...
  7. Claire
    Hi - I am not really familar with your rare condition but I do a lot of research and have seen it related to celiac in the literature. Are you at all used to doing internet research. If you are, go to it - using all the search parameters you can think of. If you are not just ask me and perhaps I can help you find a few items to read. Claire
  8. Claire
    Hello again. I got so busy that I didn't get to answer yesterday. It seems that many 'diseases' are really symptoms and doctors don't look deeper than what is initially presented to them. That has been my problem for years. They couldn't treat what I had but they didn't want to go that extra mile to find out the why of it all. Glad that you are not...
  9. Claire
    Has anyone on this forum experienced 'phantom smell' otherwise known as 'olfactory hallucination'? This is thought to be a sign of partial seizures. I have had this for many years though it is infrequent - often even years between episodes. An episode consists of brief sensations of a smell that is obviously not actually present. These last seconds and...
  10. Claire
    I am a researcher at heart so all this is a challenge to me. So far I am beating the doctors at their own game. I find they all get locked in on a diagnosis and don't look beyond it. Often the diagnosis is for something that itself can be only a symptom of something else - i.e. the ataxias. Are you able to be up and about or is this limiting you a great...
  11. Claire
    Glad to hear you are doing so much investigation into all this. The info is, as they say. 'out there' it just takes some digging and the ability to connect the dots. Sounds like you are doing both. I think many celiacs do not know the gluten/casein connection. They are lucky if they are tested for casein but many are not. Do you have a good family...
  12. Claire
    Sounds to me like this forum experience is going to be a challenge. Glad you are going to go with the CoQ10 and NAC. After all, what is the worst thing that can happen? It may help. Anything that has even a fighting chance of slowing down or stopping the progression of cerebellar degeneration is worth trying. This isabout staying mobile. Don't miss...
  13. Claire
    Thanks for the 'button' tips. I am computer literate but not forum literate. This is my first. I had a message almost finished here for you and went online to search for something for you. When I came back the half done message had disappeared. What did I do wrong? If you were studying in this field then you already know that ataxia is serious business...
  14. Claire
    I am new here but can't resist a reply to you. Go girl - with your instincts! I am a retired Rehabilitation Therapist and I can tell you that one should take medicine only as the very last resort. Your body is already under attack. Giving it yet something else to respond to is probably not the way to go. If celiac is suspected go gluten free - absolutely...
  15. Claire
    Hi there. I think I am doing something wrong with replies (new here) but this may post anyway. There is a lot of talk about hair loss being hereditary - I think it may well be that this family history of hair loss is actually celiac related. I have a multiple family members with celiac symptoms (not diagnosed) and I am half way diagnosed at this point (long...
  16. Claire
    I am new here so I may not be doing this correctly. Wasn't sure why hitting the reply button on your message threw in the text directly above. Thank you for your reply. I noticed that your 'bio' mentioned gait and limb ataxia. Have you had an MRI? I am a retired Rehabilitation Therapist and think if you haven't seen a neurologist and had an MRI it would...
  17. Claire
    Is anyone on this forum taking either NAC or CoQ10 supplements? If so, I would love to hear comments. Also, has anyone noticed a difference between one Brand and another? I am new here and was so pleased when I got such immediate responses to my first post. Thank you again. Claire
  18. Claire
    Many thanks for the replies regarding yeast. I have researched celiac and related problems for quite a long time but this stumped me. My first post here and I have an answer in less than 24 hours. Not at all shabby!
  19. Claire
    All gluten free breads and rolls list yeast as an ingredient - label usually specifies 'fresh yeast'. Isn't yeast derived from grains? Wouldn't that be a problem. Innernet searches non productive on this issue - so far. If anyone has had a definitive answer to this question please respond. Thanks. I am new here so probably will get some part of this...
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