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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Nope, not getting one, never took one and never will. I haven't even had a cold since I was diagnosed even when I worked in the school system around all the sniveling coughing and hacking kids. Interestingly was always sick with a cold or flu and I had chronic bronchitis from the time I was a child and asthma as an adult, always blamed on first my Mom's...
  2. ravenwoodglass
    Go with as much whole unprocessed food as you can. That is cheaper and safer than looking for gluten free specialty foods. Meats, chicken, veggies, fruits, beans, rice etc are all gluten free in their natural form. Since the gluten free diet is the only treatment for celiac at least you didn't discover he needed something that required meds that you might...
  3. ravenwoodglass
    Yea. I found Pepto Bismal liquid to be very helpful for me. I use it when glutened and before I was diagnosed. Acid reflux was my DD's primary symptom when she was diagnosed.
  4. ravenwoodglass
    It would be a good idea to get tested however since you have been really low gluten you need to go back to eating gluten ay least 3 times a day for at least a couple of months to have any chance of an accurate results. That said you don't need a doctors permission to be gluten free but it is helpful to have a diagnosis so the doctor can screen you for bone...
  5. ravenwoodglass
    If you are going to have a biopsy you shouldn't go gluten free until after you have had the biopsy. Then once that is done you don't have to wait to see the doctor to give the diet a strict try. False negatives are not uncommon. Also there are at times biopsy findings consistent with celiac that doctors don't recognize.
  6. ravenwoodglass
    Welcome to the forum. His pathology reports are consistent with celiac disease. False negatives on both blood and biopsy are not uncommon but false positives are not. When the one or the other is positive a person does have celiac. All his first degree relatives, Mom, Dad and siblings should now also be screened even if they don't seem to have the same or...
  7. ravenwoodglass
    Celiac is found in all races and nationalities especially as more of the world 'Americanizes' their diets. A good example is the double copy of celiac associated genes that I carry. They are genes from populations in the Orient and Middle East where it is considered a celiac associated gene. Here if I had been gene tested before diagnosis I would have been...
  8. ravenwoodglass
    Glad to hear your feeling better. Sweet potatos make good baked fries also. Do check the muesli and make sure it doesn't have oats. If it does it would be a good idea to hold off on it for a bit as not all of us tolerate even certified gluten free oats. The energy will come in time.
  9. ravenwoodglass
    Please don't go back to eating gluten even if the doctor says you can. Once a celiac always a celiac. You have healed and you want to stay that way.
  10. ravenwoodglass
    Enterolab was very helpful to me in pinpointing my soy intolerance. I had already been diagnosed celiac. However I noticed you said you don't worry about CC. After eliminating gluten from our lives it is not uncommon to become more sensitive to CC. You may be getting glutened and that is what the issue is. Keep in mind that Enterolab does not diagnose celiac...
  11. ravenwoodglass
    If you have been back on gluten for at least 3 months go ahead and get tested. Personally I wouldn't even tell my husband I am getting tested because if you have a false negative then it will be even harder to get him to understand why you want to be gluten free. The black stool also has me concerned as that can be a sign that you are bleeding. Get to the...
  12. ravenwoodglass
    Because diagnosed celiacs don't make them or the drug companies any money. Okay that is not the reason but they sure don't make the thousands off me they used to. I think most doctors just think it is very rare. Some may not want to test because then it would mean the IBS diagnosis that they gave their patients years ago would be wrong and heaven forbid...
  13. ravenwoodglass
    It would be a good idea IMHO to go back on gluten and get tested. After celiac testing is done then give the diet a strict try.
  14. ravenwoodglass
    I agree completely but at least it does tell doctors how to do the biopsy and the test. Since it is the NIH most doctors will at least read it...hopefully.
  15. ravenwoodglass
    You don't need to be terrified of the biopsy. You will be well sedated and will not remember any of it. Most of us have no problems at all with it so do talk to your doctor to set your fears at ease. There are also some doctors who will now diagnose with positive blood work and recovery on the diet so that might be worth asking about also.
  16. ravenwoodglass
    If you had a positive blood test then you do need to be gluten free. The GI doctor may want you to do a gluten challenge for the biopsy. The choice whether to do one or not is yours alone to make. While already being gluten free may impact the biopsies for celiac it will not impact testing for other problems that may be there. If you need to be gluten free...
  17. ravenwoodglass
    Call your doctor and ask if it is okay to take something like lactase with it if the pill is giving you problems. You might be able to switch to the generic form, Valporic Acid, but ask the pharmacist for the name of the company that makes it and call them to be sure it is gluten and lactose free. Whatever you do DO NOT just stop taking it as it is a drug...
  18. ravenwoodglass
    Things can be up and down for a bit. Are you going with mostly whole unprocessed foods? That is the best way to avoid cross contamination. You mention that you have been gluten-free for a month and are having your first GI appointment tommorrow. Have you had any celiac testing done yet? If not you really need to go back on gluten for any chance of accurate...
  19. ravenwoodglass
    Please be aware that to test for celiac you have to be consuming gluten. If you and your husband have been gluten free you need to go back to eating gluten for about 3 months before testing and even then you could have a false negative on testing with both blood and biopsy. After the testing is finished do give the diet a good strict try for at least a couple...
  20. ravenwoodglass
    I am a diagnosed celiac. I showed a false negative on the blood work and don't have one of the two most common celiac associated genes. Some would consider me to wear the label of gluten intolerant because of that. If you want to see the possible long term consequences of consuming gluten with the 'gluten intolerant' label instead of the celiac one just look...
  21. ravenwoodglass
    From what you have said I doubt you are going to get a DH diagnosis and I would be surprised if the biopsy was done correctly or if they were even looking for it. You may find it helpful to print this out and bring this in with you and make her read it in front of you. It is from the NIH Celiac Awareness Campaign and will tell the derm how to do the biopsy...
  22. ravenwoodglass
    Some of my neuro problems went away pretty quickly like depression and the pins and needles sensation. Sublingual B12 helped speed that along. Ataxia can take longer to resolve. For me the biggest difference was noticed at 6 months and continued to improve for a while after that. My ataxia was very far advanced though and others might see improvement sooner...
  23. ravenwoodglass
    That's because celiac is an autoimmune disease caused by antibodies. It is not an allergy which is a histamine reaction.
  24. ravenwoodglass
    Ataxia is a feeling of being off balance. I likened it to walking on a ship in a rough sea and I tended to fall to the right. Pins and needles, numbness and sometimes pain in the hands and feet is often paresthesias. If you are not already taking it get some gluten free sublingual B12 as that can help the nerves heal more quickly.
  25. ravenwoodglass
    Go with as much whole unprocessed food as you can. Rice, veggies (well cooked) fresh meats and chicken etc. If you like sweet potatos they are a good source of vitamins and both soluable and insoluable fiber. In oriental medicine they are used to treat both D and C. Get a new dedicated toaster, replace any scratched nonstick cookware, strainers and wooden...
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