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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I guess your doctor wants her to continue until those villi are totally destroyed. All because she doesn't have what he considers a celiac gene. Most places only look for DQ2 or DQ8 and if those are not there the response is that everything else was wrong. There are actually another 7 genes recognized in various parts of the world as being related to celiac...
  2. ravenwoodglass
    I have had New Grist a couple of times with no issues. I don't use the test strips and have no interest in using them as they have been shown to be not only really expensive but also unreliable. I do have a question out of curiosity though. The results from the soy sauce was a false negative, as we saw. Can you or anyone please explain how fermenting...
  3. ravenwoodglass
    Great analogy Peter. Many don't understand that a negative biopsy isn't conclusive but a positive is and this explanation is a great way to picture it.
  4. ravenwoodglass
    It is important that people know that for some the procedure can have serious problems associated with it. People need to find a doctor they trust and that will give them the facts, the risks and assess the those risks in relation to them. I was not lucky enough to have that and did have serious issues with the test and prep. One other thing I would add...
  5. ravenwoodglass
    Can you call your doctor's office back and ask to talk to a nurse? Tell them your freaked out and what your concerns are. I think a call back to a nurse might set your mind at ease.
  6. ravenwoodglass
    There is a difference between the problems that are caused by a celiac's GI related inability to access the nutrients in food and the autoimmune aspect of it. There seems to be also a degree of inflammation with celiac or at least that was the case for me. I think problems related to failure to absorb nutrients will resolve once the body has healed and...
  7. ravenwoodglass
    Hi, I was a bartender for years and just loved the job. Well except for times like when a lady locked herself in the bathroom and beat herself up. What a treat that was we had to break down the door. Anyway back to the topic, your advice is really good and sound. I myself stay away from speedbars also. If I have a drink it is rum and coke and I...
  8. ravenwoodglass
    He does sound pretty clueless. However you might want to give the Amitriptyline a try for a week or so. It is an antidepressant at higher levels but is often used at the low dose he prescribed for things like fibro to help as sleep aid. I don't usually use script drugs but this was one of the most helpful that I was prescribed before I was diagnosed. ...
  9. ravenwoodglass
    Yes it is still possible to have celiac. There are folks that have neg bloods and still have a positive biopsy. It is possible to have celiac even with both negative bloods and biopsy. You have to be just as strict with the diet whether you have gluten intolerance or biopsy proven celiac. The treatment is the same. Having 'just' gluten intolerance is...
  10. ravenwoodglass
    Yes, that's correct.
  11. ravenwoodglass
    Those may be something called parathesias. It might help a great deal to get some sublingual B12 and start taking it daily. Celiacs don't utilize B12 very well until we are well healed and the sublingual will bypass the damaged gut and go straight into the bloodstream through the mucous membranes in the mouth. It may also help a bit with fatigue. It would...
  12. ravenwoodglass
    With both happening in the same time frame I wouldn't be surprised if they might be related somehow but of course there is no knowing for sure. The fact that you are responding well to the diet is great. I hope things continue to go well.
  13. ravenwoodglass
    I had no real gut issues other than a constantly rumbling tummy and occasional constipation and gas for the first 30 years that I had celiac. I had many other systems that were heavily effected from childhood. The worst was the brain impact but also problems with teeth and skin as well as muscles and joints. When the real gut stuff hit it hit with a vengance...
  14. ravenwoodglass
    Make sure you get an actual copy of the results. There are times when doctors will call a low positive a negative. Even on point into positive is a positive result. That said now that you are done with the testing you should do the best test of all. The diet followed strictly.
  15. ravenwoodglass
    First and most vital is that you need to keep eating a full gluten diet until you see the GI doctor. If you go gluten free now before the biopsy it will for sure be negative. IF your going back to a full gluten diet makes you very ill that is also quite diagnostic of a problem with gluten. It is called a gluten challenge. You don't need a doctors permission...
  16. ravenwoodglass
    I am glad you are going to be going gluten free no matter what your results. Posts like this make me so sad because of the memories they bring. My kids had issues throughout their childhoods also and I was so very sick that they really didn't have much of a childhood. When they started having symptoms it was attributed to worry that I was dying of some...
  17. ravenwoodglass
    I don't usually eat Amy's for the reason others stated. As for Redbridge it just doesn't agree with me. I don't think it's a gluten issue at all but just that my body doesn't like the sorghum. It's kind of hard to test the theory because I don't know any other products that use it and I don't want to do a full week challenge with beer. I just stick...
  18. ravenwoodglass
    Yes you can. You can even have celiac if all the tests are negative. I am a case of that and the doctors relying on blood work delayed my diagnosis for many painful years and resulted in damage that advanced far enough to make some damage permanent.
  19. ravenwoodglass
    Welcome to the board. You have found a great place to learn what you need to learn about the celiac lifestyle. You don't have to wait for the biopsy results to start the diet. You can start the day the biopsy is done and hopefully you will heal quickly.
  20. ravenwoodglass
    If you don't want to do the biopsy then now is the time to start the diet strictly and see if it helps. It's the most conclusive test there is.
  21. ravenwoodglass
    Those are postive blood tests. Most likely they are read thus Tests run- Your result- High or Low - Top of normal range Gliadin AB IgG -36 -H -20 KEU/L CMH Gliadin Ab IgA -21 -H - 20 KEU/L CMH tTransglut IgA -45 -H ...
  22. ravenwoodglass
    Hello and welcome. People may not be responding because Mushroom is putting it so well. I would add in some peas and green beans to the veggie suggestions. Your gastritis is likely a result of the celiac. After you have had a bit of time to heal then go ahead and add in some other fruits and veggies and see how they do. If you do not normally eat a...
  23. ravenwoodglass
    I developed celiac skin issues, DH and neurological issues at about 5. I was not diagnosed until I was 46 and had been very ill for 15 years. My DS showed impact from infancy, he dropped from the 65th percentile at birth to -10 at a year, he was diagnosed after I was when he was 19. My DD showed celiac symptoms starting at around 11 she was diagnosed...
  24. ravenwoodglass
    Me too. Celiac also does not just attack the gut. Sometimes it can attack the brain, as with depressive or anxiety effects, brain fog or ataxia, it can attack the liver which is evident when we have elevated liver enzymes, it can inflame the body which can lead to fibro and arthritic problems and... well the list goes on. Some of us can become very...
  25. ravenwoodglass
    Congrats on the scholarship. Does the college know your celiac? My DD's freshman year they put her in senior housing so she would have a room byherself and a kitchenette. They also might room you with another celiac if you let them know. Whether you want to live at home or on campus is really your decision. If you are comfortable with the rules at...
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