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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    False negatives are not uncommon. In addition it can be hard at first to do all we need to do to be gluten free. If you have gotten some relief from the diet keep it up. You won't heal overnight, it takes a while. It is best to start with whole unprocessed foods and also to drop dairy from your diet until you have healed well. Also make sure you have...
  2. ravenwoodglass
    If this was a soup prepared at the store make sure you let them know. I hope your feeling better soon.
  3. ravenwoodglass
    I had issues with many peanut butters but it turned out to be the soy oil and/or high fructose corn syrup that was the issue. I go for a peanut butter now that is just peanuts and salt. I use Wegmans brand but other organic brands that are just peanuts have been fine.
  4. ravenwoodglass
    I would not be surprised especially since this appeared so suddenly and at the same time as a good gluten dose. I had a great deal of trouble with speaking for a long time. A lot of uh-uh-uh while my brain was trying to get my mouth to connect with it and find the right word. I still have trouble at times but am much better.
  5. ravenwoodglass
    What did they call those lesions? Are they in slightly different places from where the lesions usually are with MS? I also have brain lesions but a spinal tap didn't show any debris that would usually confirm MS. My neuro was clueless and called the lesions 'UBOs' or unidentified bright objects. These lesions are diagnostic of neuro impact celiac. At...
  6. ravenwoodglass
    Cancel the appointment, get back on a gluten diet and reschedule for 3 months from now. Did you originally get diagnosed with celiac? Were you ill, self diagnosed and recovered gluten free? That's pretty valid as far as diagnosis goes, IMHO. If you get ill on the challenge that is valid also. You son can and should be tested no matter what the results...
  7. ravenwoodglass
    Yep you are one of us. Welcome. You are also positive to casien so be sure to drop dairy too.
  8. ravenwoodglass
    They were home for Christmas. It must seem like a miracle to Dad. I saw a headline today though that said the mother's family is going to continue to fight for custody. At least he is with his Dad here for this fight. The situation has got to be hard on all involved.
  9. ravenwoodglass
    The villi actually have a pretty quick regrowth rate. That is why we have to be actively eating gluten and if we have been gluten-free we need to challenge for a couple months to redamage enough for diagnosis. Damage can also be patchy so the damage he found in the area the biopsied may not be the same amount of damage all throughout your small intestine...
  10. ravenwoodglass
    I looked at both the men's and women's formulas. Those both contain barley grass. Personally these would make me very sick. If someone does decide to take these please, please watch for a reaction. Although barley and wheat grass are technically gluten free many of us will react.
  11. ravenwoodglass
    You do sound like you could be one of us. Do not stop eating gluten until all testing you choose to do is done. If the blood tests come back postive the doctor may want you to have an endo. If you Choose to have an endo done you need to be eating a regular gluten diet. Both blood and endo have false negatives so do give the diet a good strict try after...
  12. ravenwoodglass
    I have soy intolerance in addition to being celiac. Soy binds me up literally for days, gluten does the oppostie. If you consume a lot of soy you may want to consider dropping all soy for a month or so and seeing if that helps.
  13. ravenwoodglass
    Doctors seem to always start with the meds. IMHO they should rule out intolerances before putting folks on system altering drugs. Do make sure the med he gave is gluten free and if you are done testing for celiac then go ahead and start the diet. Celiac is strongly genetic and if your Mom has been diagnosed you are likely one of us also. It would help if...
  14. ravenwoodglass
    I have never had the multigrain, I avoid oats. However I have had the olive and also the chocolate with no issues from CC. I love the chocolate with cream cheese, yum.
  15. ravenwoodglass
    I agree. I am super sensitive and these are just not things I would worry about.
  16. ravenwoodglass
    Unfortunately my doctors thought as you do. Except for the one who literally saved my life. It cost me greatly in years of pain. I agree that other things should be ruled out but a trial of the diet shouldn't be the last thing someone does.
  17. ravenwoodglass
    That is an old wives tale. What you are describing is a gluten challenge and is a valid part of the diagnostic process. For those of us who don't show up in blood work, and that is up to 20%, it is one of the most important parts. If you feel relief from your symptoms gluten free and they recur when you start back on gluten your body is telling you that...
  18. ravenwoodglass
    I do agree you need a new doctor. If nothing else they should be referring you to a pain clinic. I know the pain you are talking about. I used to have nightmares in childhood where my legs were being cut off. Doctors told my Mom I had growing pains. They weren't growing pains. I would lay in bed and just scream. I also have ED, have they sent you to...
  19. ravenwoodglass
    Can you explain more fully what you are experiencing? What supplements are you taking? Are you on any script meds?
  20. ravenwoodglass
    Chances are it is normal but I would suggest you call your GI this morning and ask a nurse to be on the safe side.
  21. ravenwoodglass
    If you have had the biopsy and blood tests you are done with celiac testing. You can start the diet. Your body may give you the answer before you go back to the doctor.
  22. ravenwoodglass
    Genetic testing when they only check for DQ2 or DQ8 is far from conclusive. My DD was told by some big city celiac doctor that she couldn't be celiac because she doesn't have one of those two genes. Even though she had previously been diagnosed at home by both postive blood and biopsy. I am firmly diagnosed but at that point, five years into the diet...
  23. ravenwoodglass
    If you have been using the milk all along with no issues my guess would be that you have gotten gluten somewhere. What have you been eating this week that you weren't a couple weeks ago? Any new scripts or refills of generics that haven't been checked? Any new supplements? What has changed?
  24. ravenwoodglass
    The only thing that will help is time. I wish we had something that would help when we get glutened but it doesn't seem that much helps. We just have to wait out the antibody attack. You could try some sublingual B12 to see if that helps the brain fog clear a bit. If you are having bad stomach pain for some of us Pepto Bismal liquid helps. I am glad...
  25. ravenwoodglass
    There are false negatives with biopsy, and it sounds like that is what you had. Now you get on the diet, strictly. I think you will be surprised how well you feel once you have been gluten-free for a bit. Welcome to the board and get yourself on the diet today.
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