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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Yes you do need to go back on gluten for at least 3 months before testing if you are going to have the biopsy done. Even then you could have a false negative. Also while the two genes you were tested for are the most common celiac associated genes they are not the only celiac associated genes. You can be celiac and be negative on testing and gene panels....
  2. ravenwoodglass
    Symptoms can change in intensity and presentation so one persons primary symptom may be different from another. My first indication was that I had 'poison ivy' for 12 months out of the year as a child, it was actually DH and about the same time I became very clumsy and off balance and developed learning problems. Doctors were clueless even after I developed...
  3. ravenwoodglass
    Your not alone in that. I was thought to have MS also and had the same issues you did plus aphasia and extreme difficulty walking because of the ataxia. Doctors actually told me the brain lesions they found on the MRI were meaningless and I wanted to be sick! Here have a prozac! It can take some time to recover when the brain is impacted but it can recover...
  4. ravenwoodglass
    Malabsorption of nutrients can play a big part especially in the newly diagnosed. Hair loss (alopecia) can also be part of the autoimmune action from celiac in some people. I lose hair when glutened or when I have injested soy and I have been healed and absorbing nutrients for years now. People can also lose hair because of stressors, either an illness or...
  5. ravenwoodglass
    The antibody reaction actually starts the moment gluten contacts a mucous membrane. There are some countries that test for celiac using a gluten suppository or a swab that is placed either in the mouth or rectum and then the tissue is biopsied 2 to 4 hours later. IMHO that is a much more humane way of diagnosing us than the 3 month gluten challenge that is...
  6. ravenwoodglass
    Welcome to the forum and it sure does sound like your in the right place. To get tested for celiac you are going to have to do a gluten challenge and add it back in for a good 2 to 3 months and even then you could have a false negative. Many of us are not able to cope with the amount of time we need to be back on gluten if your systems react to it. And that...
  7. ravenwoodglass
    What is happening is antibody action in the brain. It takes some time for the antibodies to clear out of the system. It does seem that those of us who are impacted neurologically are also very sensitive to CC issues and need to be really careful to avoid it.
  8. ravenwoodglass
    Many of us switch our pets to grain free food to prevent CC from licks and petting them or the dust from their food. Cat tongues are quite abrasive and you also may be transferring some residue into your eyes if you are rubbing them before you are fully awake. The best way IMHO to see if the food your feeding the cat is causing this is to switch her to a...
  9. ravenwoodglass
    Yes. Grains the cow eats are not a problem for us.
  10. ravenwoodglass
    Suave is known for clearly labeling gluten ingredients but I don't know if all of their products are gluten free without reading the labels. However when I looked at the ingredients on line it does have Vitamin E and does not name the source. You could call them and ask what it is derived from. It could also be something else in it that does not agree with...
  11. ravenwoodglass
    Thank you.
  12. ravenwoodglass
    Are you recently diagnosed? Depression is not unusual for us prediagnosis and some of us go through withdrawl for a bit after going gluten free which can make it worse. If you are suicidal do get some help with that. I do admit that thought crossed my mind more than once prediagnosis but fortunately I have children and pets who needed me. Those feelings do...
  13. ravenwoodglass
    You have gotten some good advice about food so I am going to address the sleep issue. Is there a reason why you are shift sleeping? You are getting 8 to 9 hours of sleep total but it is better if you get them all straight. It may be hard to do but keep yourself awake and don't allow yourself to go to sleep during that 4pm to 8pm time frame. If you have to...
  14. ravenwoodglass
    The first thing you need to do is to get a full celiac panel done. Tell your doctor that you want one done. You do sound like you are in the right place. Do not go gluten free until all your testing is finished as that will give you a false negative. There can be false negatives even on a full gluten diet so after all testing related to celiac is finished...
  15. ravenwoodglass
    Unfortunately one of our number 1 rules is not to eat something if we don't know what is in it and don't know if the kitchen it was prepared in was safe. I know it's a pain to have to be that careful but that careful we have to be. You don't need to have gluten get all the way into your tummy to get glutened. Gluten can pass through our mucous membranes and...
  16. ravenwoodglass
    You do sound like you are in the right place. Hopefully they will give you a lab slip so you can get blood drawn tommorrow. If your doctor can't get you in tommorrow ask to speak to a nurse and see if they will let you pick up the slip. Explain that you know you have to get tested before you start the diet but that you are having the throat swelling feeling...
  17. ravenwoodglass
    Ask your doctor to give you copies of your blood work results. That way you can see how much the results have gone down. tTG-IgA or tissue transglutaminase-IgA Antigliadin IgG Antigliadin IGA Total IGA There is also a newer one that I think is DGP (could be wrong about the initials as it is early and I haven't had a full cup of coffee yet)
  18. ravenwoodglass
    Glad to hear you are doing better. That picture is of my little Pooh Bear when he was a couple years old. I have got to try again to get a picture of Maggie, she is a Blue Merle Dapple Doxie and adorable also. I have trouble resizing pics and the ones I have taken so far are too big. Thats my task for today.
  19. ravenwoodglass
    Yes it is normal. Now that your gluten free when you get even the smallest amount of gluten it will cause those antibodies to flare. You need to be as careful as possible and take precautions to prevent cross contamination. Do not cook with gluten flours for others, if fact many of us find that we can't allow gluten flours to be used in our homes at all because...
  20. ravenwoodglass
    Did the restaurant have a gluten free menu? Restaurants can be difficult for us if they don't. It would be hard to pinpoint what got you without knowing the ingredients of what you had. We can also tend to get more sensitive the longer we are gluten free and you may end up with D tommorrow or the next day as it can take a few days for that to set in.
  21. ravenwoodglass
    Gee I think I may have lived next door to you at one time. I used to watch this huge dog jump up and hang by his jaws from a tree branch over and over all day long. Quite amusing, kept him busy and quiet, well except for an occasional growl. Glad he never got loose though. As for my screen name I used to live in a house with lots of large pine trees...
  22. ravenwoodglass
    I use either NOW or Country Life. Both of which I can get at my health food store.
  23. ravenwoodglass
    The ones on your leg do look like the scars I had, I still have a couple on my back even though I haven't had DH in ages. I hope your lesion free soon. I know they itch and hurt like the dickens!
  24. ravenwoodglass
    Have you tried taking your vitamins with a meal? That might help and some of them are better absorbed when you take them with food.
  25. ravenwoodglass
    DH scars are usually purplish red and last for a long time rather than leaving white scars. Your scars look nothing like mine did. However I am not saying that you don't have DH. In addition celiac can cause skin problems other than DH. I also had cystic acne type sores and those faded to a white color but I haven't had one since I went gluten free. Hopefully...
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