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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I agree with the previous poster, another thing that you should look at is any meds you are taking. The list of meds that are cleared through the liver is substancial and your doctor really should be addressing this. You also have not been gluten free for very long. If you are eating processed foods or drinking gluten grain derived alcohols or using gluten...
  2. ravenwoodglass
    I am also a supersensitive celiac and I can definately symptathize. Folks that are not as sensitive do not seem to understand it. I also get neuro symptoms and have no doubt when I have been glutened. If the amount is small enough it may not be enough to give me a severe gut reaction but the neuro symptoms will come back. Just as there is a wide difference...
  3. ravenwoodglass
    This was what my GI doctor told my DD when we were sitting in his office after her scope. He stated that she had a low positive on the blood tests and changes that looked to be celiac related changes but her villi were not YET totally destroyed. He told her that he thought she should go ahead and get on the diet and if she didn't then she could keep poisoning...
  4. ravenwoodglass
    Thanks for the heads up on the alprazolam. My doctor had never heard of afobasol but took the info on it and is going to research it a bit. He did give me a script for the alprazolam and also told me if I am having a severe panic attack that I can break the pill in half and take it sublingually to get very quick relief since that would get the drug to my...
  5. ravenwoodglass
    What genes were you told you have? There are 7 more genes other than DQ2 and DQ8 that are associated with celiac they just are not recognized yet in the US. Gene testing is in it's infancy, so to speak, and should not be used to say you for sure have celiac or not. If it walks like a duck and it quacks like a duck it is not a horse.
  6. ravenwoodglass
    I feel the same way about that article. I am wondering also if they tested any of those folks for other intolerances. Since I dropped soy, the other thing that gave me issues I have had absolutely no gut issues....unless I consume either gluten or soy.
  7. ravenwoodglass
    I was misdiagnosed with IBS for many many painful years. That diagnosis cost me a great deal. My signature really says it all. Folks should also bear in mind that IBS is not IMHO a 'diagnosis' of anything. It is simply a catch all term which means doctors don't want to find out what the real cause is.
  8. ravenwoodglass
    Before my allergist put me on the elimination diet he also did skin testing. He tested me for 99 substances and the only one I wasn't reactive to was beech trees. It was then that he suspected celiac although he didn't mention it till after my challenge with gluten gave me a very strong reaction and then he referred me to GI for confirmation. He stated...
  9. ravenwoodglass
    Celiac usually has a trigger, that trigger can be a stressor or an illness. Yours may have been triggered by the stress of quiting smoking. If you quite 2 years ago I do hope you don't start again.
  10. ravenwoodglass
    I also switched to a tobacco and papers route. I did first switch to a brand that was only tobacco with no additives but when they raised taxes sky high in my state raising my brand to almost $10 a pack I changed to the roll your own and a $10 package of the tobacco lasts up to 2 weeks. One reason I did so was because I was getting the same reaction from...
  11. ravenwoodglass
    Could you have been glutened at the wedding? Some of us get horrible heartburn with a glutening but I don't know what your gluten symptoms are.
  12. ravenwoodglass
    Yes you should be tested for celiac. In addition, and not trying to scare you but...the symptoms I bolded could be indications that you had a heart attack. If it happens again call an ambulance to take you to the ER. You need to get back to your doctor as soon as you can and tell him about that incident. If your doctor won't listen to you find another...
  13. ravenwoodglass
    I had this happen to me, my pancreas seemed to basically shut down after a horrible reaction to an endo. Even at celiacs worst I never saw totally undigested food in my stool like I did after that endo. If you have any links to research on this I would be very interested in seeing them. Mine resolved with the short term use of pancreatic enzymes. To the...
  14. ravenwoodglass
    You may have healed enough so that the amount of gluten is not quite enough to give you GI issues. In addition not all celiacs even have gut issues, that is called silent celiac. I had skin and neuro issues for a very long time before gut stuff got bad enough to be an issue. I have been gluten-free now since 2002 and for the last couple years I need a...
  15. ravenwoodglass
    I am also a blood test negative celiac. The advice given here was excellent. You can see the effect being strictly gluten free has had for me and the related disorders in my signature. I hope you take the advice and give a strict dietary trial a go. You may be surprised how many of your problems resolve.
  16. ravenwoodglass
    My opinion of course but I don't mind new threads on old topics at all. There is new info that comes out all the time. If all threads like this were linked together the threads would be very long and not everyone would want to take the time to go through page after page. We also have some folks on the board who are not real computer savvy and might have...
  17. ravenwoodglass
    There are fairly high rates of false negatives. If I had waited for a positive test I would be dead by now, not an exaggeration. If you saw relief of symptoms on the diet you really do have your answer.
  18. ravenwoodglass
    From what my GI doctor and my PCP told me not all H Pylori needs to be treated. It is something that is found in large numbers of people. It was found when they did my endo but since I was having no symptoms they didn't want to treat it. Although I am quite mistrustful of doctors after hearing the same from both of them and with my mistrust of pharmacuticals...
  19. ravenwoodglass
    They were gluten free when I was first diagnosed but when the US went on the multigrain bandwagon the company decided to add wheat starch. They used to be one of my favorite cereals so I am hopeful that eventually they will wake up and make them gluten free again.
  20. ravenwoodglass
    Take a look at the gluten free foods you are eating. Many have stuff that we haven't eaten a great deal of before diagnosis. For example for me a real issue was soy and I needed to stop eating many of the specialty gluten free items that I had started with.
  21. ravenwoodglass
    If it has barley malt it is not gluten free. The cinnamon ones I found do have barley malt although they may be changing the formula. I would contact the company and let them know about the error in the recipe section.
  22. ravenwoodglass
    So glad to hear that you are doing well on the diet. One word of caution though about your DD, there are false negatives on testing so she may want to give the diet a good try even though the tests were negative. Also did your GI tell you why they want to do yearly endo? Usually after we heal they are not needed. It may be because of the Barretts rather...
  23. ravenwoodglass
    I am one of those celiacs that will react to distilled gluten grains in vinegar and alcohol. I use apple cider vinegar safely, which in the US is often labeled as just 'vinegar' I can't answer about the balsamic vinegars because I have never used them. Some distilled vinegars are corn or wood based. Heinz distilled was from corn last I checked. If you...
  24. ravenwoodglass
    Heathen gave you a good answer. The choice whether to biopsy or not is yours. As stated the damage can be missed in the biopsy leading to a false negative. There are also changes that are seen before the villi are destroyed that unfortunately not all GI's recognize. There are folks who will not be compliant with the diet without a positive biopsy, a tragedy...
  25. ravenwoodglass
    The advice to wash your clothes is a good one. I would strip as soon as I got inside if you can. Fels Naptha soap is a good one for washing your hands and I would get some rubber gloves to slip over your gardening gloves and dispose of them ASAP after working around it. Also be very careful if you burn any wood that comes from an area that it is growing...
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