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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Just keep in mind that the genetic tests are not diagnostic. They can be a piece of the puzzle but there are folks with the most common celiac associated genes that never develop celiac and there are celiacs that don't have either of the two most commonly associated genes. I hope you get some answers and some relief soon. Sometimes what makes a believer...
  2. ravenwoodglass
    Now is when you try the diet. False negatives on both blood and biopsy are not uncommon. Go on the diet strictly for at least a couple of months.
  3. ravenwoodglass
    If you are going to have the biopsy done do keep on a gluten full diet until afterwards. After the biopsy is done or if you are done with testing don't go gluten lite go gluten free. Gluten light won't stop the antibodies.
  4. ravenwoodglass
    If she is gluten free her blood tests will be negative. If she is eating gluten I would go ahead and have the panel run again as she may show positive by now.
  5. ravenwoodglass

    ARCHIVED Sad

    ravenwoodglass replied to Brigit's topic in Coping with Celiac Disease

    IF your B12 level was below 500 you may want to try a sublingual B12 even if the levels say that you are in the normal range. It can take a long time for the blood levels to drop even after we are unable to utilize the B12. Some doctors still use the 250 lower level, mine did. B12 is water soluable so taking too much is not going to hurt you as you will simply...
  6. ravenwoodglass

    ARCHIVED Sad

    ravenwoodglass replied to Brigit's topic in Coping with Celiac Disease

    You are likely going through withdrawl and hopefully it will lift soon. It also is a big change and many of us do go through a grieving process as the others have mentioned. By the time you have the financial means to see the homeopathic doctor you may be feeling great. Do be aware that not all naturopathic doctors are as up on celiac and how sensitive we...
  7. ravenwoodglass
    I use Garneir skin and hair products. Palmolive or Green Works dish liquid. Suave and Dove will also label their products clearly. If you like organics Giovanni hair care was gluten free last I checked but don't know about thier skin care. Shikai makes some gluten free products and I use Jason Rosewater body wash. Do read labels though as some companies make...
  8. ravenwoodglass
    If your biopsy was Marsh 1 you are very likely to be celiac no matter what the blood test results are. False negatives on both blood and biopsy are all too common. When all the testing is done go gluten free. Some doctors will tell you to keep eating gluten and then come back in a year to see if the villi are totally destroyed, IMHO that is very bad advice...
  9. ravenwoodglass
    You say the gluten loading day the day before the tests is awful, does that mean you have been gluten free or gluten light? If so that one day back on gluten is not likely to give positive results on any testing. A gluten challenge is usually needed for 2 to 3 months for the antibodies to present in the blood. It sounds like you know you need to gluten free...
  10. ravenwoodglass
    It is too bad that they didn't run a total IGA as that would make the tests for gliadin IGA a false negative. It is significant that her IGG was high and you are in the right place. Don't take her gluten free until after the GI doctor is done with his testing. Then give her a trial strictly on the gluten free diet. Chances are good that will take care of...
  11. ravenwoodglass
    Thanks Patti, I had the thought the other day that with the state of the budget in my state right now and all the cuts that they may 'offer' retirement to some of the higher level folks that have been around 20 or 30 years and bump some others up leaving a space for the newer, lower pay scale folks. Keeping my fingers crossed as I sure could use a job that...
  12. ravenwoodglass
    Thank you. I firmly believe that there is a reason for everything. If the length of time and all the suffering myself and others have gone through can help others from going down the same path then it has a value and a purpose. It also helps keep one from getting bitter over all those 'lost' years. It's great to hear the worst of the hell days are over for...
  13. ravenwoodglass
    Positive blood tests trump negative biopsy. False negatives in both are all to common. Your blood test was positive and some doctors are even skipping the biopsy when that is the case. Do stay on the diet strictly and you will likely be feeling much better very soon.
  14. ravenwoodglass
    Since the colonoscopy doesn't test for celiac you can go ahead and start the diet now. Being on the diet won't effect that test but it may do away with your symptoms before the test is even done.
  15. ravenwoodglass
    I think his total IGA does appear to be quite low even though they didn't give you the range. Keep in mind that false negative tests for celiac are even more common in children than in adults and the DGP is one of the best and newest tests they do and that was positive so once testing is done do give a strict trial of the diet.
  16. ravenwoodglass
    Well the computers were messed up when I got there so we had the written test first, which I know I did really well on. Then came the typing test. I have that nasty lag time on my right side due to my neuro damage and it almost got me. I failed the typing test the first time, by 1 error! They let us take it again so I slowed down a bit and did the best I...
  17. ravenwoodglass
    Mine also. The only thing that kept me going the last 5 years before diagnosis was my children. And one of them even gave me permission to commit suicide. I would give anything to have been diagnosed when DH and IBS were my primary symptoms. It is hard to accept celiac and it takes some adjustment but the pain that will be avoided makes it soooo very worth...
  18. ravenwoodglass
    I am so sorry you have to deal with all this. I wish I had some answers for you. I did have RA and was thought to perhaps have lupus along with MS. For me being super, super strict with the diet did resolve those issues, thankfully. But I also had to avoid gluten grain alcohols and vinegars and stayed out of restaurants for years to get that resolution. Soy...
  19. ravenwoodglass
    I can't answer as to whether it was gluten free because it was one of the many drugs they gave me before I was diagnosed. How long have you been gluten free? If it is a short time you may find the diet itself gives you a lot of relief. I got very lucky and my RA symptoms were in remission within a few months. Not all are that fortunate though. I do flare...
  20. ravenwoodglass
    If you wake up today and the D has resolved then things should be okay but if you still have D call the doctor and tell them on the phone that you have had D for an extensive period of time and want to rule out food poisoning. They should be able to let you pick up what you need to have for stool testing today and drop it off at the lab. Then if you have...
  21. ravenwoodglass
    What that basically means is the her positive response to the antibodies was so high that it went over the upper range of the test. He didn't put that very well but the antibodies they were testing for would be the antigliadin antibodies that we produce from the reaction to gluten. Some doctors 'dumb down' their responses to folks thinking, falsely many times...
  22. ravenwoodglass
    Please do introduce her to the site so we can help her get through this. She will likely do a bit of greiving and she may also go through some withdrawl which could make her moody for a little bit. Sorry if it seems some were 'bashing' you. We have heard countless stories of folks whose loved ones didn't believe their diagnosis and some who even go so far...
  23. ravenwoodglass
    Glad to hear you are going to give the diet a good strict try. I hope it helps your issues.
  24. ravenwoodglass
    Tests are at 8:30 tomorrow. Wish I had realized it would be the week after the time change. Keep me in your thoughts. I'm pretty sure I will do well just hope I don't sleep through the alarm cause it is quite a drive to get there.
  25. ravenwoodglass
    I say I have celiac. If I get a blank look (which doesn't happen as much as it used to) I then will say I am gluten intolerant and can't have wheat, rye, barley or oats.
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