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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Talk to the doctor about that response when you see him/her. Unless the doctor is celiac savvy he may not understand the connection. Be prepared for that. Do get a complete panel done as, if by chance, you are not as gluten free as you think you have been antibodies may show up. Not for sure but it is worth a shot. It is doubtful if you have been strict...
  2. ravenwoodglass
    Which tests were done and which ones were positive? It is my understanding that one in particular can take a long time to come down. I believe it is the TTG. If you post the tests and results someone with more knowledge should be able to help. How are you feeling? Are you seeing any improvement? It can take some time for levels to come down. Do look over...
  3. ravenwoodglass
    Thanks everyone. I appretiate your input. I think next time my city's Wegmans is out it will be worth the trip to stop at the big, huge one where I work.
  4. ravenwoodglass
    You could introduce them to this site to help them understand how strictly you need to follow diet and the precautions you all will need to take in the home to keep you safe. Do be sure to read the Celiac 101 topic at the top of this page. It will be quite helpful. Do also encourage your relatives to get tested even if they think they don't have any symptoms...
  5. ravenwoodglass
    They were out of Udi's at the store so I had to get something else. Canyon Bakehouse has always gotten good reviews so I figured I would try it. The taste was okay but it seemed really doughy almost like it wasn't quite done baking. Has anyone else noticed this or did I just get an loaf that got by the bakers?
  6. ravenwoodglass
    If you are not eating gluten the GI can not test you for celiac. If you are still having GI symptoms gluten free then the doctor can test to make sure nothing else is going on. Celiac wise the only thing an MRI might show is lesions if you have ataxia. Which it doesn't sound like you do but I am not a doctor so can't say for sure. Some of us do get depression...
  7. ravenwoodglass
    So sorry you got this news. Did they do a spinal tap? If not you may want to request one just to be sure it is MS that you are dealing with. Gluten ataxia can cause brain lesions that look the same as MS lesions but they will not find the debris in the spinal fluid that they do with MS. Likely since you have been gluten free for a long time that the diagnosis...
  8. ravenwoodglass
    I have never heard of the treatment you are speaking of so I can't give any info on that. I had severe ataxia at diagnosis and it does take some time to resolve. I found I was extremely sensitive to even the smallest amount of cross contamination. Do read the Newbie 101 thread at the top of this section to be sure you are not missing any possible sources...
  9. ravenwoodglass
    I was thought to have MS. I had UBOs (unidentified bright objects) on the MRI. When a spinal tap was done there wasn't the debris that they find in MS so my clueless neuro said the UBOs were something lots of folks had and they meant nothing. I just wanted to be sick. Here's a prozac. At that point I couldn't walk unaided and couldn't tell you a fork was...
  10. ravenwoodglass
    Do look into other feed. You may be able to find some that is gluten free and that your horse will tolerate. Perhaps make a call to the horse's vet. He might have some feed suggestions. Also be careful when grooming. If no one else in your household can handle the feeding perhaps a neighbor, 4 H kid, or another horse owner might be willing and able to help...
  11. ravenwoodglass
    Yes. That is the whole purpose of the challenge. To be diagnosed doctors need to be able to find antibodies in the blood and damage to the intestinal villi. If you are not eating gluten then antibody levels go down. Unfortunately even with the specifity of the newer celiac blood tests many doctors will feel they need to see a positive biopsy before they...
  12. ravenwoodglass
    I was diagnosed with it when I was diagnosed with celiac. I was prescribed the PPIs but never took them. Instead when I would get that familiar discomfort I would take a dose of Pepto Bismal liquid. That would stop the pain within a very short time. I almost never needed a second dose. I still get the same pain if I accidentally consume soy. It's a fairly...
  13. ravenwoodglass
    Welcome to the board. It sounds like you are having a real rough time. Having an actual allergy to both wheat and soy on top of celiac is tough. Did your allergist have any advice on how to handle the allergy part of it so you are no so restricted? Perhaps a med you could take before an event where you might be exposed that could stop the histamine reaction...
  14. ravenwoodglass
    Glad the board is helpful to you. I think we have a pretty good bunch of folks here. My 1st 2 years on the diet would have been sooooo much easier if I had found this place then. Even after all these years I still find it a helpful place for info.
  15. ravenwoodglass
    You are not the one that posted any claims. I think the response from admin was in reference to post #2. Please don't be concerned you didn't cause any problems.
  16. ravenwoodglass
    If it is not a big restaurant you could go in with that friend on a day when the co-owner wasn't there and talk to the chef. You could certainly have something like a steak and baked potato with no problems. All the chef would need is to cook it in a clean saute pan and not use gluten seasonings or sauces. Then when you go in just tell the waitress to tell...
  17. ravenwoodglass
    Does your doctor consider you diagnosed? If so I personally would go with option 3 or 4. You say you were pretty much gluten free before you challenged to get tested. How did your body react to that challenge? Have you continued to eat gluten after you got the blood work taken? If your symptoms are not too bad you could continue to eat gluten. Keeping in...
  18. ravenwoodglass
    Welcome to the board. I have never used the products and despite their gluten-free claim I wouldn't touch them with those in the ingredient list.
  19. ravenwoodglass
    OP- it sounds like your little one is responding very well to the diet. It is great news that she is recovering so quickly. If it was my child I would keep her gluten free. If you do decide to test later you will have to challenge but with the preschool years being so important for growth and development I think you are wise to continue with the diet for...
  20. ravenwoodglass
    While rare there are diagnosed celiacs without one of those 2 genes. Having one of the 2 genes does not make it "very likely" she will develop celiac many people carry the genes but never develop celiac.
  21. ravenwoodglass
    It is very doubtful you will be able to go anywhere. Do be sure to bring someone with you to the procedure also as they most likely will not allow you to drive home or even take a cab. Plan on resting or just quiet activities the day of the procedure also. Perhaps your boss will let you make up that 20 minutes the next day or the day before.
  22. ravenwoodglass
    Nicole just said what I was going to say. Celiac is so much more than just a gut disease. I wish researchers would take that into account but we seem to have a way to go with that. As to the horse feed. Please do start a thread to see what other horse owners do to protect themselves. Breathing in the dust will be a problem gluten wise. If no one else...
  23. ravenwoodglass
    I agree with Nicole. In addtion do not cook with flour for the gluten eaters. Let them get their gluten breads, cookies, cakes etc premade. Flour particles in the air will also get you.
  24. ravenwoodglass
    Have you tried the Garnier line? I have had good luck with their products. Hopefully others will reply with some other brands.
  25. ravenwoodglass
    That is great news. While I know that feeing better is the real reward for all your hard work getting to see how much you recovered in labs very satisfying. Thanks for posting.
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