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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    If that doesn't prove that we all really care about you well nothing will. Many of us have been where you are. I lived with feeling and thought patterns like you have for almost all of my life. They came on full force after I had surgery on my legs at age 11. I like you could never have imagined that what I was thinking and feeling could be associated...
  2. ravenwoodglass
    Welcome. There is no actual link between the two but folks can certainly have both. Any illness or stress can trigger celiac so Lyme could be a trigger but that is about as far as the relationship goes. They also have some symptoms that would be the same but that could be said for a lot of disorders.
  3. ravenwoodglass
    There is no place that I know of and this is one of the reasons why I try to donate regularly to my local food bank. I make sure everything is gluten-free including the toiletries and pet foods that I take.
  4. ravenwoodglass
    Some of us get withdrawl symptoms and some don't. Celiac is genetic so it certainly is not out of the realm of possibility that you also need the diet. If it is withdrawl it should be over soon. Stick it out and you will most likely wake up in a day or two feeling much better.
  5. ravenwoodglass
    This was an interesting thread. Thanks for posting this info. The genetics of this disease involve so much more than just the DQ2 and DQ8. So many, including my DD, have been told that if those 2 genes are not involved it can't be celiac. I am so thankful I wasn't gene tested during the diagnosis process.
  6. ravenwoodglass
    Thank Goodness. I am glad you were able to work something out.
  7. ravenwoodglass
    Iron overload can cause serious problems. I do hope you are making sure that you are not taking any in the form of a supplement. I don't know how high you are but I would insist my doctor get to the bottom of it. If it is too high the most common treatment is getting rid of some blood. If you can donate blood on a regular basis that might help keep it...
  8. ravenwoodglass
    I don't know. There are a lot of factors though with the biopsy, how many were taken and the lab that reads them are part of it. Also there are changes that are seen before the villi are totally destroyed that are sometimes disregarded. A decrease in scalloping, an increase in eosinophils, a mosaic pattern to the mucosa, a reddening of the mucosa (erythemia...
  9. ravenwoodglass
    That wasn't caused by the rye itself but from a fungus called ergot that infested the crops. Another reason why most folks even today don't equate how bad they feel on gluten with what they have eaten lies in the delayed reaction that many of us experience. With allergies it is really obvious really quick but with gluten that isn't always the case, at...
  10. ravenwoodglass
    I was overjoyed when I saw the gluten-free list they put out. Until I got sick almost everything I ate them. I won't touch their products any longer. The CC issues are just way to frequent.
  11. ravenwoodglass
    Unfortuately no. In fact of the 30% of us that do show a false negative on the panel many of us are well into full blown celiac. For those that do show up on blood testing the panels will show a decrease the longer we are gluten free.
  12. ravenwoodglass
    Two weeks on the diet is not enough to see a difference when you have celiac impacting your brain. It takes time for the antibodies to resolve. Also gluten for those of us with neuro symptoms often has an addictive component. That means some of us will go through a withdrawl when we stop. It usually takes about 2 weeks absolutely gluten free to get through...
  13. ravenwoodglass
    I loved, read was addicted to, bread also. I don't regret giving it up now in the slightest. I hope she agrees to testing and a trial of the diet no matter what the results.
  14. ravenwoodglass
    Your not trying to ease celiac symptoms with allergy drops are you? Celiac isn't an allergy and the drops won't work. Were those drops made with a gluten vehicle? Some of us will react to even distilled gluten grains and gluten oils. Gluten crosses the mucosal barriers really quickly gets into the bloodstream fast and from there to the brain.
  15. ravenwoodglass
    Yes celiac can cause all that and more. It is recommended by the National Institute of Health that all members of your family be tested. After testing I would get at least your mother and daughter on the diet if you can no matter what the results. The balance issues your daughter is having could be ataxia and I know from personal experience that at times...
  16. ravenwoodglass
    If you call the phone number on the bars they will tell you which ones are gluten free. There were a couple I used to eat that were safe at that time but don't know if they still are.
  17. ravenwoodglass
    The most likely culprit in light of how careful you are is the cat food and/or litter. DH is an antibody reaction that begins after injestion in even small amounts. It is not an allergic reaction which is why you don't break out where he licks you. I never thought of gluten in pet foods and litters as a problem until I continued to have outbreaks. I also...
  18. ravenwoodglass
    It is frustrating and at times a bit sad. I did eventually get to the point where I couldn't name day to day things and at times forgot what to do with my car keys, that was really scarey. Thank goodness a lot has resolved but it seems what was locked in there from younger years is forever lost. It is nice to know I'm not alone in this issue. Thanks for...
  19. ravenwoodglass
    The mucosal flattening is an early stage of GI involvement. Your doctor was wise in telling you to do the diet rather than just telling you to keep eating gluten and come back for more scopes until you are in the end stages. Also using the word 'just' with gluten intolerance makes it seem less serious however it is not. Someone with gluten intolerance...
  20. ravenwoodglass
    It is the whole report that reads like a positive celiac diagnosis. Do get those slides reviewed by a knowledgeable doctor and lab. How many samples did he take? He should have taken at least 5 or 6.
  21. ravenwoodglass
    No it is not a sign of weakness but you do have to be more patient with each thing you try. Were you ever diagnosed with celiac? Have you had a panel done? Are you still doing the diet?
  22. ravenwoodglass
    My brain lacks the receptors for the 'caines'. It is complicated but that is the easiest way to explain it. I usually need about 5 times the normal dose when they do any of the work they need to do. That includes cleaning. Celiac also can effect the enamel on your teeth which leaves them really sensitive.
  23. ravenwoodglass
    The following link and quote is from the National Institute of Health. It states really well why I am saying you should try the diet even with the negative blood. The bold is mine. By the way you should get an actual copy of the report. Many doctors if it is a low positive would say it is negative. Even one point into the poitive range is positive. Also...
  24. ravenwoodglass
    This shouldn't really be that bad. I am 'caine' resistant and you may be also. Just let the dentist know if you feel anything and he will stop and give you more anesthetic. Take an asprin or aceteminophin or something along those lines if you are worrying about pain afterwards but you shouldn't really have any.
  25. ravenwoodglass
    Tests are not always accurate on young people and there are even false negatives with testing adults. Your plan to try the diet after testing is a good one but I would just do it with all of them. It is not going to hurt kids that don't need to be gluten-free to be so for a bit and it will help a lot with stress levels if you don't have to cook one meal...
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