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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    What genes did they test for? There is no way if you are celiac that at least one of your parents wouldn't carry one of the genes. Celiac is a genetic difference not a defect and in addition there is a great deal other than just GI disorders that come from it. It can effect many other organs including brain. How long ago was it that your Mom had the blood...
  2. ravenwoodglass
    Have you tried to get an appointment with a foot doctor? I wouldn't say that you think it is gout just that it hurts like the dickens. If the foot doctor thinks it's gout he will be able to either give you something for it or even get you in to see the regular doctor sooner. I have seen some stuff in the health food store that is for gout relief. If...
  3. ravenwoodglass
    When I feel iccky and I want comfort food for me that's cream of buckwheat. It tastes and has the texture of cream of wheat without the gluten and with a lot more easily digestable protein. I use the Pocono Brand which is grown in dedicated fields and processed in a plant that only processes buckwheat.
  4. ravenwoodglass
    I would highly reccommend that you call your Ped this morning and ask him to order a complete celiac panel for her. Hopefully they will call one in this am or you can go over and pick up a lab slip. With her history of stomach issues they should have no problem ordering the panel. There are instances of false negatives on both blood and biopsy but there...
  5. ravenwoodglass
    Welcome to the board and the gluten free lifestyle. There is a lot to learn and if you have any questions at all don't be afraid to ask. You found a great place for info and support. Your seizures may very well resolve. Try not to worry. The doctors will be monitoring your medication and will taper you off of it. If your seizure activity is not controlled...
  6. ravenwoodglass
    Your doing the right thing. Chances are that the nurse was correct about the source but it is a really good idea to follow up on it. Try not to be too worried about it. Easier said than done I know.
  7. ravenwoodglass
    You need to be actively consuming a full gluten diet for at least 3 months before testing can have any possibility to be positive. If you were gluten free for 6 months that is plenty of time for the antibodies to leave the blood and the villi to heal and it takes time for them to get to the point of damage where doctors will diagnose celiac.
  8. ravenwoodglass
    You need to see your doctor and most likley a neurologist. This could be caused by a number of things including reactions to some meds. If you are on any prescription meds make sure you let you doctor know this is happening ASAP.
  9. ravenwoodglass
    Your doctor may be depending on the gene tests to help diagnose you. A real mistake as the US does not recognize any celiac genes other than DQ2 or DQ8 in most cases. There are actually 7 more genes that are recognized in other countries. If you can I would find another GI who is more knowledgeable or is at least willing to learn. It sounds like this...
  10. ravenwoodglass
    I also agree that celiac is a syndrome with different presentations for different people. By genes I would be defined as gluten sensitive by US doctors. By autoimmune impact I would be defined as celiac by those same doctors. I do not believe that the two are different disorders at all, sensitivity is just celiac that is found before the autoimmune damage...
  11. ravenwoodglass
    "ever since taking the medications to regulate the heart beat until surgery, namely Toprol, have been sick as a dog." This may be significant, has your pharmacist checked to make certain that this is gluten-free? And if it is a generic does he check it at each refill? Is there a different drug that your doctor could try for a bit to see if you are reacting...
  12. ravenwoodglass
    What was in that gelcap? It may be something your body doesn't like or if you didn't drink enough water, a full 8 oz glass is ideal to help the pill get all the way to the stomach, it may have been irritating. If you didn't drink enough when you took it it may have dissolved before it was supposed to.
  13. ravenwoodglass
    All of the above
  14. ravenwoodglass
    If you have been gluten-free since June then the endo will be useless for diagnostic purposes as far as celiac goes. You really should have had it before you went gluten free. Were you diagnosed by a positive celiac panel? If you were a rerunning of the panel may tell you how you are doing on the diet and healing. There is no reason not to have an endo...
  15. ravenwoodglass
    Your doctor should be writing gluten free on your scripts. The pharmacist should be able to look up whether it is safe or not but if they don't have time get the printout from the drug and call the makers number which will be on there somewhere.
  16. ravenwoodglass
    I sure do wish I could tell you of something that would help or make the process go a bit quicker. Unfortunately I haven't yet found anything that helps except letting stuff run it's course. I also get the same violent reaction that you do and one piece of advice I do have is to carry your cell or a portable phone into the bathroom with you when this happens...
  17. ravenwoodglass
    The toe walking can be a sign of a neurological problem and by now you most likely do have shortened tendons. I am wondering why your doctors haven't addressed this issue before if you have been doing this for an extended period of time. The best thing you can do is to get to a physical therapist. They can evaluate your gait, help retrain you how to walk...
  18. ravenwoodglass
    You just did a gluten challenge and the results were positive. You may find you have a new lesion at some point in the next week. The rash with DH and the frequency of outbreaks can vary even within one persons experience. When I was a child I would have the rash all over my legs and arms for months at a time, the only time it would heal was with...
  19. ravenwoodglass
    It can be done with a cheek swab, don't think you freeze it though. I had mine done by Enterolab and also as a participant in the National Geographic Genographic project and both used the swab. If you are sending a stool sample that would be frozen.
  20. ravenwoodglass
    Not only can they be gluten intolerant they can be full blown celiac. Of more importance in your case is that you had already been gluten free for a while. That will effect the tests. Did you get your hands on the actual test results? Sometimes just a point or two into positive will prompt a doctor to say the results were negative even though they are...
  21. ravenwoodglass
    You may want to see if you can change the dog to a nongluten food. Even though you are not sharing a table the dog will lick himself and spread any glutonly reside all over his fur. When you pet him that can be a CC source as can the act of feeding itself. If you use canned dog foods make sure that you are not sharing a can opener. I thought for a long...
  22. ravenwoodglass
    After having starved a few times in my life I am a bit of a food hoarder. I always keep- Rice and Wild Rice Dinty Moore Beef Stew Spam (yea I know it's gross) Dried beans and peas variety of gluten-free broths canned veggies and fruits tuna Pnut butter Tahini Olive oil a variety of jellys gluten-free crackers Pamelas mix gluten-free flours...
  23. ravenwoodglass
    Jason I think you may find the world looks a lot different to you fairly soon. We all make mistakes in the beginning and not all of us are 'lucky' enough to have a strong gut reaction to show up that we messed up. I could be wrong but I suspect that a bit of the anxiety that you have expressed in your posts will ease up for you with the deletion of your...
  24. ravenwoodglass
    I was NOT diagnosed by Enterolab. I did the Enterolab tests 5 years after I was diagnosed celiac by an allergist (MD) and had that diagnosis confirmed by my GI when the gluten challenge almost killed me with a GI bleed. I had the Enterolab tests done after my DD, who was diagnosed by postive blood work and biopsy went to college and after 2 years gluten...
  25. ravenwoodglass
    I had two family members who were only one point into the postive range on testing and went gluten free and saw a surprising difference in a number of issues. As for myself I never showed postive on a blood test and it was a real struggle to get diagnosed since the doctors would see the negative blood work and considered that negative to be a firm diagnosis...
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