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ravenwoodglass

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by ravenwoodglass

  1. ravenwoodglass
    I had fibro for years, it turned out to be celiac caused, of course for me. I have noticed other fibro type symptms after a allergic reaction to the antibiotic levaquin but those have now resolved with eliminating soy. If you know for sure that you are not reactive to soy, or are already avoiding it and they have to use meds one that they had me on was...
  2. ravenwoodglass
    My reaction time is similar to yours, I have some small indictations depending on the amount of gluten fairly quickly but the real reaction takes about 3 to 5 days depending on how quick my system is moving. Gluten reactions are an intolerance, it can take up to 5 days for the antibody reaction to set in, that is not unusual. Everyone is different so reaction...
  3. ravenwoodglass
    If your derma has diagnosed you with DH there is absolutely no question that you need to be on the gluten free diet no matter what the test results say. You have a good GI doctor there and since he does not see the need to endo you going on the diet today is what you need to do, you don't need to wait as you already have your diagnosis. Feel free to ask...
  4. ravenwoodglass
    I have to agree that for now you should try to eat as little processed foods as possible. Also the issue of CC or 'government declared safe levels of this toxin' can cause us problems. You won't know how sensitive you are to either until you eliminate the processed foods and then add things in. As stated many of us are sensitive to dairy and also to soy...
  5. ravenwoodglass
    This poster took the words right out of my mouth so to speak. Celiac can cause a surprising number of neuro issues, restless legs being one of them. Instead of the meds right now perhaps you could get some sublingual B12 (gluten free of course), that may help much more than the drugs and won't cause any side effects. Then when you are done with all the...
  6. ravenwoodglass
    If the results are negative you try the diet strictly for a couple of months, that is the truest test there is. If they are postive then you do have a choice, you can continue to eat gluten until you can get the biopsy done, but if those results are negative you are still not in the clear and should try the diet, biopsies can miss us and do. Also the fact...
  7. ravenwoodglass
    Marci gave you a good response on starting the elimination diet. The only different thing I am going to say is that when my allegist guided me through mine he told me to eat the new food at least three times a day for week in as pure a form as possible, for example when I challenged wheat it was with triscuits or cream of wheat, when I challenged eggs it...
  8. ravenwoodglass
    Joss that sounds like an allergic reation, do email the makers and find out what the binders are that they use. I noticed the ingredients you listed do not state soy free, many of us have problems with soy so that may be the culprit. Don't give up on the B12 though, find out what the ingredients are and whether it is just B12 or whether it has an herbal...
  9. ravenwoodglass
    Ali, I wish you the best and hope things go well and that you are able to find a living situation that you can deal with. If and when you feel safe to come back remember that you don't have to fill in a profile with your private info. That should help a bit with the privacy issue. Take care, you have a lot of people here that care about you. Myself included...
  10. ravenwoodglass
    The strange feelings you are referring to could also be in part to withdrawl symptoms from the gluten. Many of us have real ups and downs for the first few weeks before things level out. If you get your B12 levels checked make sure that you let your doctor know that you are supplementing as it will effect the tests. The treatment for different anemias...
  11. ravenwoodglass
    Yes bad attacks can be 'normal' until diagnosed. My last one lasted 5 years, thats 5 years of the symptoms that you describe for your husband including daily and nightly painful wish I could die D. I am going to be bold here and suggest that you give the diet a try. Unless you are going to insist on a repeat endo. No doctor ever told me to try the diet...
  12. ravenwoodglass
    I just want to note that gluten sensitivity should not have the word 'just' in front of it. It can do just as much damage as 'true' celiac disease but in some the systems effected may be different. I am 'just' gluten intolerant by gene tests but my symptoms by the time I was finally diagnosed were just as severe and life altering and threatening as anyone...
  13. ravenwoodglass
    Funny how good things can make us cry. You have a wonderful teacher who not only helped you feel less left out but also took the opportunity to educate the rest of the class. Those are the kind of teachers we need. Thank you for posting this and thanks to the others that added their good stories. I wish I had one to add to it. Things are improving for...
  14. ravenwoodglass
    When you say RSD are you referring to Reflex Sympathic dystrophy (sp)? I had this set in after knee surgery and it is very painful. If you can get her to take some of the sublingual B12 please do, I don't know if it will help but it won't hurt. I had a wonderful PT that helped with mine. They did excercises, heat and ice and electrical stimulation to...
  15. ravenwoodglass
    The soy problem may be an issue here, but, especially if you are new to the diet, there may be another issue that is not Nutella related (it is gluten-free), gluten reactions for many of us are delayed. Look not only at what you ate when you started to feel ill but also what you have consumed in the 3 days previous. This is one of the best reasons for the...
  16. ravenwoodglass
    Aren't our fur buddies wonderful, Big Boy certainly hasn't lost any weight since he went gluten free but like his 'Mom' his temperment has improved. We affectionately call him 'No Neck Malone' but never anywhere that he can hear.
  17. ravenwoodglass
    "I laid out the facts for him--that I tried eating gluten-free and it improved my symptoms dramatically, but they came back when I tried regular food again." You have diagnosed yourself through the most accurate fool proof way you can, IMHO. I am going to be short and sweet here- You do not need a doctors permission to go gluten free. If going gluten...
  18. ravenwoodglass
    In myself these were clearly gluten related. I stopped taking my singulair along with all my other meds when I did my elimination diet and have never had to add them back in (or any other scripts for that matter). As to the hot flashes make sure if you are female that they check your hormone levels, my doctors refused to check and I turned out to have celiac...
  19. ravenwoodglass
    Yes there is a difference and you do need to get the sublinguals. The reason for this is simple, the area of your intestines that is damaged by celiac is the same area the forms the intrinsic factor that is need for your body to absorb and utilize the B12. B12 can be absorbed directly into the bloodstream by the mucous membranes, gluten can be absorbed...
  20. ravenwoodglass
    Joss I think you are going to be amazed at how much the diet helps you. I used to have migraines on a daily basis, sometimes with pain sometimes with just the auras (my aura oddly enough is olfactory and I will smell bread baking even now). The only time I get migraines now is when glutened. I also have gluten ataxia (previously labeled with the idiopatic...
  21. ravenwoodglass
    I hope the diet helps your son. I also hope they do not rush to medicate your child. Bipolar is a very popular diagnosis nowadays, I only wish doctors looked for gluten problems as diligently as they do this new 'disease of the month'. Sorry if that sounds cynical but with my families history it is hard to avoid. It used to be thought that depression...
  22. ravenwoodglass
    For most the reason to test is because of symptoms that may or may not be tummy related. The folks who are asymptomatic, no symptoms at all are often found when another member of the family is diagnosed and the doctor encourages the rest of the family to be tested. Celiac and gluten intolerance can affect many of the bodies systems before the usual 'celiac...
  23. ravenwoodglass
    This is my family to a T. I had considerable damage from neuro, muscle, joint and skin issues for a long time before tummy troubles were more than an occasional annoyance, well other than constant loud growling. The same can be said of my DH and DS except in them things were caught before severe GI troubles set in. For me gluten free was like lifting a...
  24. ravenwoodglass
    I have been CC'd too many times by Lay's products to even want to try these. For me it is like playing roulette with my body, sometimes their products are fine but often they 'get' me. I do occasionally have the Stax though and haven't had a problem.
  25. ravenwoodglass
    I am one of the celiacs who does react to distilled grains. Not everyone does. We use Heinz distilled it is distilled from either corn or wood and is safe, last time I checked. The only way to know for sure if you react is to challenge it like you would any suspect item. Try it when you are symptom free and have it at least a couple of times a day for...
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