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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    All celiac testing has high rates of false negatives and those are even higher in children. Glad to hear your husband is willing to do the 3 month trial but do be strict and take the needed precautions to prevent CC. It wouldn't be a bad idea for you and your husband to get a celiac panel done as it is fairly common that there is more than one celiac in a...
  2. ravenwoodglass
    If your therapist did the elimination and then had blood work done for celiac he would have come up negative on the celiac testing. Even on a full gluten diet up to 30 percent of us are a false negative. You have to be actively eating gluten for the celiac panels to have any chance of a positive result. If you are having a colonoscopy done you should ask...
  3. ravenwoodglass
    You can have celiac and have all celiac panel and biopsy results in the negative range. The best thing you can do is to go gluten free and see if it helps. You need to be strict with the diet and avoid CC. Since you have had the biopsy you can start the diet now you don't need to wait on the results. You may find you get some relief before the results are...
  4. ravenwoodglass
    Are you on any medications or supplements? If so have you checked with the maker to be sure they are gluten free? If not you should do so. Note that some supplements can have wheat and barley grass and still be labeled gluten free so do read all ingredients on them. It may not be the case for you but for me eliminating soy helped a great deal with joint...
  5. ravenwoodglass
    If you haven't had a celiac panel run by your doctor you may want to do so before starting the diet. If you want to have an endo don't start gluten free until that test is done. Do keep in mind that false negatives are common with both those tests though so after that testing do give the gluten free diet a good strict try for at least a couple of months to...
  6. ravenwoodglass
    Now you can start a strict trial of the diet you don't need to wait on the biopsy results. Your body may give you the answer before the results are even in. Also keep in mind there is a 20 to 30% false negative rate. The high ttg is usually celiac although in rare instances it can be from something else but your being gluten free is not going to prevent them...
  7. ravenwoodglass
    Gluten reactions are often delayed reactions, that is not unusual. If your doctor did not do biopsies when he did the endo your doctor knows nothing about celiac. He needed to do at least 5 or 6 biopsies as the damage from celiac can often not be seen with the naked eye. You say you doubt CC is an issue. Is your home gluten free? Are you eating only at restaurants...
  8. ravenwoodglass
    Did your doctor do celiac panels or any other celiac testing on you? If he did and the results were positive why is he having you do another challenge? Your first one made you quite ill so has he given you a good reason why you should do this again? If he wants you to challenge gluten to test you need to eat gluten for at least 2 to 3 months for that to have...
  9. ravenwoodglass
    Yes your problems could be gluten related. False negatives are all too common. Your B12 is quite low. The old cut off was 250 but many doctors are now telling folks to supplement if it is under 500. You are positive for both common celiac associated genes so it would be a good idea to do a good strict trial of the diet for a bit to see if the diet helps....
  10. ravenwoodglass
    Two inches may not seem like a lot but at least you are getting some growth. Personally I would not do a gluten challenge with him. You had positive blood work and have seen some improvement on the diet and his blood work after being on the diet has been negative, which is good. You may want to consider a referral to a ped endrocrinologist just to make...
  11. ravenwoodglass
    I don't tolerate oats but I also like a hot cereal for breakfast. You could try Buckwheat Kasha or Cream of Buckwheat. If Pocono brand is available where you are they are grown in dedicated fields and harvested and processed in a plant that only processes Buckwheat. My go to breakfast is usally Udi bread and pnut butter with some fruit and sometimes I also...
  12. ravenwoodglass
    Sorry you have been through so much and it is good to hear that the diet is helping you. I agree that you may have some other intolerances. You may want to drop dairy and soy for a bit and see if that helps. If it does then add them back in one at a time after a couple of months to see if you are reacting to one but not the other. Also make sure that you...
  13. ravenwoodglass
    I agree with the previous poster. She is IGA deficient so the IGA testing is useless. If she is still eating gluten and symptomatic you could ask for an endoscopy but that has a pretty high rate of false negatives also. Giving the diet a strict try may be your best option. Especially if you have other celiacs in the family.
  14. ravenwoodglass
    It can take a while to heal after diagnosis. Do make sure your doctor checks your vitamin and mineral levels. Many of us also suffer from additional intolerances the most common being soy and dairy. If you haven't already you may want to drop those from your diet and then adding them back in, one at a time, after you are feeling better. If you take supplements...
  15. ravenwoodglass
    That is an option but if you are one of those celiacs that don't carry one of the two most common genes it may end up confusing matters. There are folks who are diagnosed by both blood and biopsy who then get the gene tests done and are told that they couldn't be celiac as they don't have the genes. That happened in my family as we carry a gene that is not...
  16. ravenwoodglass
    Symptoms and their relief on the diet and the UBO's on an MRI would be what is used for diagnosis. It would be diagnosed by a neurologist but not all are familiar with it. Once you have been gluten free for a while the ataxia should get some relief. Something that may help you recover quicker is a script for a few visits with a physical therapist. Your...
  17. ravenwoodglass
    Personally I wouldn't have said anything to the others about the game pieces. I would have either brought a safe snack for all or would have been careful to keep my hands away from my face and mouth until after the game. Then, if it was my game I would wipe it off and rinse the pieces after they went home. As far as food goes it sounds like she is being...
  18. ravenwoodglass
    Don't worry about telling the doctor you went gluten free and it is helping as it may help others who come along after you. The rate of false negatives is pretty high with celiac testing but the body knows the answers. It seems pretty clear that the diet is helping you a great deal. Stick with it strictly. Perhaps your experience will help the doctor suggest...
  19. ravenwoodglass
    Happy Birthday, a day late. It sounds like it was a nice relaxing day. Just the way a birthday should be.
  20. ravenwoodglass

    I am constantly in awe of your quite but amazing strength.

  21. ravenwoodglass
    If the lesions are white lesions they are called UBOs or unidentified bright objects. In MS the lesions surround the myelin sheath. In gluten ataxia they are scattered in different places. Those UBOs, in a bit more celiac savvy countries, are diagnostic of celiac disease that is attacking the brain. If my neuro had known this I would have been diagnosed years...
  22. ravenwoodglass
    Wow your psychiatrist keeps up with research, I'm impressed! There was a fairly recent journal article that advised that folks with depression who don't respond to medications should be tested for celiac as that can be the cause. Glad to hear that you are going to be following the doctors advice. Hopefully the diet will help but it can take a bit of time...
  23. ravenwoodglass
    This may not be the case for you but since your GYN said 'contact dermatitis' I thought perhaps my experience might be helpful. I have DH. When I get glutened it causes a flare as it exits my body where it exits my body. The reaction is not as bad now that I have been gluten-free for almost 9 years but it still happens. Prediagnosis I was told it was contact...
  24. ravenwoodglass
    The only problem with that is that usually they only test for two out of as many as 27 celiac associated genes. My daughter who had been both blood and biopsy positive later had her genes tested by a different doctor. They only tested for DQ2 or DQ8. She was negative for those so the doctors told her that her previous diagnosis was wrong. That prompted me...
  25. ravenwoodglass
    For your doctor to do any testing you would need to go back to a full gluten diet for at least 3 months. You have a family history of celiac, you feel better on the gluten-free diet and your doctor has told you that he has diagnosed you as celiac. While you could choose to do a challenge and be retested you do still run the risk of a false negative. If being...
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