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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    All I can really say is that your body seems to be telling you that it can. Could there also have been CC issues in both cases with folks handling the gluten stuff and then contaminating the areas? Perhaps.
  2. ravenwoodglass
    I haven't been to a restaurant to eat in a long time. I had been glutened by two of the best restaurants in my city (one a 5 star place!) trying to eat out a few years ago so with the exception of a couple of takeouts from PF Changs over the last 6 years or so I have avoided trying anyplace else. Well my DS is leaving for an out of state school next week...
  3. ravenwoodglass
    False negatives on both blood and biopsy are not uncommon. The advice here is to do the diet after testing no matter what the results of the tests. You are having good results from the diet. That is the best 'test' there is. Many of us have mood changes on gluten, that is a sign of brain impact. IMHO you would be wise to stop going on and off the diet and...
  4. ravenwoodglass
    If you call the office and describe what is going on, ask to speak to a nurse, you may be able to get the to give you are referral to a PT or podiatrist over the phone and just pick up the script.
  5. ravenwoodglass
    She is being a good doctor and checking to make certain that there are no serious issues that could be related to the hyperplasia. While the hyperplasia could simply be related to a reaction from celiac it could also be a sign of other things going on. Go ahead and do the CT scan and try not to worry about it. Write down any questions you have for her so...
  6. ravenwoodglass
    I agree you need to see a doctor as soon as you can. If you have an episode where you are unable to speak and your vision is being effected get yourself to an ER immediately while it is going on. You could have something serious going on like ministrokes. You could also be celiac but your negative stool testing would be unusual if you are since Enterolab...
  7. ravenwoodglass
    Just what I was going to suggest. Just be aware that olive oil has a lower 'flash point' than many other cooking oils so watch it if you are frying.
  8. ravenwoodglass
    If you shave fresh out of the shower when the beard is soft you could try just using whatever regular soap you use. That should work as the whole purpose of the shaving soap is simply to soften the beard.
  9. ravenwoodglass
    Those rice wafers still have to contain a small amount of wheat. The host is gluten light but not gluten free.
  10. ravenwoodglass
    False negatives are not uncommon even on a full gluten diet. After you are done with all testing you choose, both blood and biopsy then give the diet a good shot. Just because the test was negative 7 years ago doesn't mean it would be negative now so if you haven't had a panel run recently have one redone and get the endo if you choose to and then try the...
  11. ravenwoodglass
    Anniversarys are hard when they are anniversarys associated with unpleasent events. Sometimes it seems no matter how hard we try they still overshadow everything good that is going on in our lives. I hope at some point this will become easier for you and that anniversary will become one to celebrate not mourn. ((((((((((((((hugs)))))))))))))))
  12. ravenwoodglass
    Ataxia is when gluten attacks the brain. I had seizures and extreme balance issues. I eventually needed canes to walk or to hang on to something like a shopping cart or walls. I also had neuropathy with the pins and needles sensations in my arms and legs. My electromylograms for my right leg were basically a flat line. Most of my neuro damage and the lesions...
  13. ravenwoodglass
    I found for many of the early years before I was diagnosed that the intense D would come every few days but the other symptoms like the brain fog, joint and muscle pain, ataxia etc were always there. In my last 5 or so years before diagnosis the D was a daily and nightly occurance, except for the three days after the clean out for a colonoscopy. (My GI looked...
  14. ravenwoodglass
    Yes being on the diet will certainly cause a false negative. Even on a full gluten diet the false negative rate is about 20%. You can either go back on gluten for about 3 months and then get retested or you can just continue with the diet. If you choose to go back to gluten for testing be aware that if you become very ill from the challenge your body is really...
  15. ravenwoodglass
    I agree to find a PT, you can get a script for one from your doctor. The PT will help to strengthen areas you need strengthened and you will be able to stop the compensation that is causing this. Also see a podiatrist, a foot doctor, he will be able to give you an orthonic that will stop the pain. Mine was attached to the bottom of my shoes but that was a...
  16. ravenwoodglass
    That was what I was going to say. You do NOT want the brain impact to continue. If you do it is a very, very long and hard fight back. I know I have been on that road now for 8 years. I would give anything to have been dignosed when the main nerve symptoms I had were just the twitching and numbness. Even very small amount of gluten are enough to have me falling...
  17. ravenwoodglass
    Have you had your doctor run a celiac panel? That would be a good idea to have done. While we do have many false negatives that should always be a first step. You could also do Enterolab although Enterolab does not diagnose celiac. You also have the choice of just going with the strong positive on the test you did if that is enough to keep you strict with...
  18. ravenwoodglass
    Glad you got this done. While I hope there is nothing serious going on I do hope you get some answers. Keep us posted.
  19. ravenwoodglass
    It you haven't had an issue with items that have it I wouldn't worry about it. If you have been having a lot of 'mystery' glutening then that would be different but since you haven't had an issue then enjoy.
  20. ravenwoodglass
    I went over 40 year mis- and undiagnosed. I am cancer free. Will it develop down the line either from being misdiagnosed, working with chemicals without gloves, smoking for so many years, a occasional drink or not drinking well who knows. I will not spend time worrying about it. Now making a left hand turn in heavy traffic and getting broadsided that I...
  21. ravenwoodglass
    Maybe some learning and compassion? Whatever it was it was good. Glad she is coming around.
  22. ravenwoodglass
    I get Luksusova. I recently heard of one called Glacier Idaho that is made in the US but I haven't looked for it yet.
  23. ravenwoodglass
    If your in the US and the glucose is derived from wheat it must by FDA regs say so. Whether all companies actually follow those regs I can't say but they would get in a lot of trouble if they didn't. That said I personally wouldn't touch a product with a wheat derived glucose.
  24. ravenwoodglass
    You mention you are a long way from healing, are you still having gluten symptoms? Make sure you have checked all meds and supplements with the maker, check your toiletries for gluten and make sure to avoid CC issues in your home. Some of us even have to change our pets food. There are also nonfood sources of gluten. Things like drywall compound, wall paper...
  25. ravenwoodglass
    Was that a typo or was something missing? For me that would be 50lbs of water. That is a lot of water. Water is good and a gallon a day is a good amount but 1/2 someones body weight could make them very ill. That much water would greatly upset the electrolyte balance. There are folks that have died from drinking too much water because of that.
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