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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I would make an appointment with the doctor, tell him/her your symptoms and ask to be tested. If you have a history of going to the doctor with the complaints then you might be able to just get them to order the tests.
  2. ravenwoodglass
    I doubt you'll get very far but you could give them a list of what is and isn't gluten free. This post does serve as a good reminder to all folks that just because something has a tag on the shelf that says gluten free we all need to read the labels on the item we are about to purchase.
  3. ravenwoodglass
    " So I have three questions: 1) If 81% of tests are going to be positive, why would I pay almost $400 for the test. 2) I also question how a stool sample can be a contamination free source for genetic testing. Stool contains the genetic material of everything we eat. 3) Genetic tests only indicate predisposition, not the presence of gluten intolerance...
  4. ravenwoodglass
    Your first step would be a blood test called the celiac panel and your regular doctor can order one. The biopsy isn't painful it is done under light anesthesia through an endoscope that is swallowed and the biopsies are taken of the duodenum and small intestine. Your GI doctor should be able to test but if you don't have one post the question on the Doctors...
  5. ravenwoodglass
    Welcome to the board Edward. How long ago was your wife diagnosed? If she has only been gluten free for a short time know that she may improve on the diet. It can take a long time and progress can be slow but many of us have had cognitive improvement and I hope she does also.
  6. ravenwoodglass
    I am glad she does address this and yea I agree it is rather inconsistent with the 'gold standard' and is why I personally consider 'gluten intolerance' and celiac to be basically two names for the same thing but perhaps with different organ impact.
  7. ravenwoodglass
    Oh gosh yes. Mine was so bad that in the mornings I could barely bend my fingers and by a month on the diet I had lost a shoe size.
  8. ravenwoodglass
    It is hard at first but once you start seeing the results it will be worth all the trouble. You may also be going through a bit of withdrawl as well as the greiving process so take it easy on yourself. Treat yourself to stuff you enjoy whether it is a long walk, a movie or a good dose of chocolate. Cry when you need to and ask any questions that come to mind...
  9. ravenwoodglass
    Re: the Agent Orange query. Celiac requires a triggering stress or illness in most of us. If the Agent Orange caused illness that could be a trigger but so could the mental stress of being in a war zone.
  10. ravenwoodglass
    Be patient, be strict with the diet, take sublingual B12 and remain hopeful. Many have seen depression and anxiety and thought problems resolve. If I could go from not even being able to read or name a fork when it was held up in front of me at 45 to being able to finish my last semester of college with a 4.0 in my 50's anything is possible. You should be...
  11. ravenwoodglass
    I wonder what her take is on DH. Having DH is considered a firm diagnosis of celiac disease and is not referred to as gluten sensitivity or intolerance instead. But many times folks with DH have no intestinal symptoms or villi atrophy for years if at all. So much we still don't know.
  12. ravenwoodglass
    I would think a glass of wine might be okay just don't overdo it. Make sure you don't get wine coolers though as those are malt liquor and are not safe for us. I make a 'wine cooler' by putting a little bit of wine in a glass and adding soda.
  13. ravenwoodglass
    Do open that bill, you wouldn't want a worthless doctor ruining your credit. If it is high and you haven't much money ask if you can work something out for payment. If the bill is from a hospital go to the billing dept and see if they will do a sliding fee scale for you. I have one doctor whose bill was able to get dropped from $80 to $2.50 and another that...
  14. ravenwoodglass
    You could try keeping it in your diet and see how it goes. Since you don't get an upset stomach from it you may be fine. You could try having a lactose breath test but IMHO since you aren't having any gas or stomach issues when you eat dairy it is doubtful, again in my opinion, that you have a problem with lactose. Some of us do have an issue with milk protein...
  15. ravenwoodglass
    Boy can I identify with that. The first time I ran up the stairs in over 10 years I sat at the top and cryed like a baby. That was nothing though compared to how I felt when I could dance again. Glad your seeing such good results.
  16. ravenwoodglass
    With gluten even if it is 'merely an intolerance' you are still doing damage and forming antibodies. Some folks with 'just gluten intolerance' have even more serious issues than folks who have diagnosed celiac. There is also the chance of a false negative with both blood and endo so do give the diet a strict try after all celiac related testing is done. They...
  17. ravenwoodglass
    If you are normally consuming a lot of pasta and gluten grains then just keep up the diet you are on. You need at least the equivelent of 4 slices of bread a day to help insure and accurate result. Make sure to let the doctor know you have bad reactions to anesthesia and if possible let them know what forms you have reacted to. The endo is usually pretty...
  18. ravenwoodglass
    You could try Enterolab testing if it is available in your state. They look for the antibodies in the stool. If he will visit here that might also be helpful.
  19. ravenwoodglass
    You may still have a weak positive on the bloodwork but you could very well have a false negative. No matter what the results you should get on the diet strictly so you can heal.
  20. ravenwoodglass
    To me, IMHO a weak positive is a positive. Your GI treating it like it meant nothing and having you stay on the diet until the biopsy to me means he knows very little about celiac as he is basically insuring that you will have a negative result. Both my children and my ex were diagnosed as celiac based on weak positive results and a positive biopsy on one...
  21. ravenwoodglass
    Yea I wouldn't touch those either.
  22. ravenwoodglass
    Yes do try going gluten for a few months to see if it helps. You will likely get relief from the 'IBS' symptoms before you get relief from the neurological ones. The lesions in the brain from celiac, called UBO's, are very similiar to the ones from MS but as your doctor stated are not in the same place. It took me about six months before I had obvious relief...
  23. ravenwoodglass
    Intolerances can have a delayed reaction because it can take some time for antibodies to build up. An allergic reaction usually happens really quickly.
  24. ravenwoodglass

    Thank you for adding me. :)

  25. ravenwoodglass
    Keep in mind that the tests can be a false negative so do try the diet for a bit strictly when you are done with testing.
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