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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    So folks with Marsh 1 or 2 damage were not included in the study results. Were those folks told they had a false positive and to just keep eating gluten until their villi were totally destroyed? Some folks have villi destruction that is patchy and got missed. How many of those were told to ignore positive results and to just stay on gluten and here are some...
  2. ravenwoodglass
    You mention that you are doing an elimination diet. Are you being guided by a doctor or a nutrtionist? Some folks will do one on their own and end up eating just rice and chicken, for example, and end up not taking in enough nutrients, protein etc. I did an elimaination guided by an allergist who formulated the starting point to ensure enough calories, protein...
  3. ravenwoodglass
    So sorry you are having such a cascade of issues and are in so much pain. Before I was finally diagnosed in desperation I went to an acupuncturist. I was disbelieving but figured I had nothing to lose at that point. To my surprise it helped. I later found a book on accupressure and used those points myself after I was diagnosed to fight off pain from teeth...
  4. ravenwoodglass
    Welcome to the board. Did they rerun the celiac panel to make sure that some gluten isn't sneaking in somewhere? Have the doctors checked your vitamin and mineral levels? If not it would be a good idea. Make sure they check your levels for iron, the B's including B12, and D at the very least. It would also be a good idea to make sure they have checked your...
  5. ravenwoodglass
    Sorry you are having such troubles. Good that they were able to do a colonoscopy in the ER to diagnose the polyps and hemmies. Why didn't they remove the polyps when they did the scope? Sorry you have to go through it again for removal and hope all is clear when they biopsy the polyps. Hang in there.
  6. ravenwoodglass
    The sites main purpose is to sell you something. May be a bit of good info in there as I didn't read everything. I do know that I was close to death when I was finally diagnosed and I healed following just the gluten free diet, avoided dairy for a couple months and later did have to drop soy. It took a bit of time but gluten free I am healthier than I have...
  7. ravenwoodglass
    I will never understand why doctors discount positive blood work if damage happened to be missed on the endoscopy. If you have positive blood work you have celiac since the tests are for the most part specific to celiac disease. Good to hear you are back on the diet and do read that Newbie thread that Cyclinglady recommended. Do ask any other questions you...
  8. ravenwoodglass
    It isn't unusual for very young children to have false negatives with testing from what I understand. In addition some doctors only run one or two tests out of a panel. Can you get copies of all tests? That might be a good idea as some doctors will call a low positive a negative or miss changes in the intestines that are not full villi destruction. Although...
  9. ravenwoodglass
    Welcome. You have a great neurologist. Please continue to follow his advice, forever. He can write the needed letter to keep her and your youngest safe in school or daycare. With neurological impact personally I would not even think of doing a challenge later. I had severe neuro issues that began around her age and wasn't diagnosed till middle age. While...
  10. ravenwoodglass
    You might want to go to your closest celiac support group (check with local hospitals for ease in locating one or two) and ask to interview individuals there. Interviewing teachers and school kitchen staff might also be helpful. You will learn much more in a face to face interview and your participants will feel safer.
  11. ravenwoodglass
    I use that brand myself. I find it at my local Wegmans. It is so nice to find OTC meds that are clearly labeled. I thought it was an in store brand also but it seems to be available in different markets
  12. ravenwoodglass
    Welcome to the board. I agree you should be tested for celiac. Make sure you don't stop eating gluten until all celiac related testing is finished. I also seemed to be allergic to everything before I was diagnosed. I had skin prick testing for 99 substances and the only thing I didn't react to was beech trees! My very savvy allergist said after I was diagnosed...
  13. ravenwoodglass
    Welcome to the board. What makes you think what you passed was the lining of your intestines? There are times when my intestines have been so inflamed that I was passing a lot of mucous that looked like 'sheets' that coated the stool, (Sorry for the TMI) along with some bleeding. Could that be what you saw? Are you having active bleeding? I am not refering...
  14. ravenwoodglass
    Welcome to the board. Your ped should be able to refer your little one to a physical therapist to help with any issues with balance and coordination if needed. It is quite possible to recover from ataxia, especially as young as she is. It can take a bit longer than it does to recover from symptoms like stomach issues but chances are very good that she will...
  15. ravenwoodglass
    Gerald when you tried to get off the Paxil did you do it under a doctor's care? An MD would be quite helpful with that if they really know what they are doing and if not find another doctor. You would need scripts for decreasing dosage over time and then guidance when you get to the point of actually stopping. Have you told your MD or a GI doctor about...
  16. ravenwoodglass
    Your doctor should be able to clarify why he wants to do the test. Just one thing to add and that is to make sure that he has let the x-ray dept know your solution needs to be gluten free. Your drink will be thin not thick and chalky. I have had this test done a couple times. The first time the doctor didn't know the barium needed to be gluten free and I...
  17. ravenwoodglass
    So sorry you are going through this. I also had lots of swollen lymph nodes and they do take a very long time to go down. The night sweats are awful. I dealt with them for too long myself. Thought I would chime in on what gave me a bit of relief. I kept a fan next to the bed that had a remote. When that awful heat would awaken me I would throw off the covers...
  18. ravenwoodglass
    That sounds like a very scarey reaction. If you don't have an epi-pen perhaps you might want to get one from your doctor. You are lucky the large blister was not far enough down your throat to obstruct your breathing. Polaner makes an all fruit jam that I use that might work for you. It does have 35 cal per serving but has no sugar or sweetener other...
  19. ravenwoodglass
    Welcome. You have found a great place for information and support. There is a 'Newbie 101' thread at the top of the Coping section. That has a great deal of good information for her and other family members. You are a wonderful Aunt to try and help her get used to the gluten free lifestyle. It can be a bit overwhelming at first for both the person diagnosed...
  20. ravenwoodglass
    Has an ovarian cyst been ruled out?
  21. ravenwoodglass
    Anemia is not the only reason for fatigue. If you have only been gluten free for a month or so then your body is still healing. Your test resuls as far as iron goes look great. Have you had your B12 and other vitamin levels checked? That would be a good idea. Keep in mind that for many rest is a good thing when your body is healing and trying to rebuild...
  22. ravenwoodglass
    Everyone is different. I didn't drop potatoes or rice and had no problems with them. Of course they were in their natural form not out of a box with a bunch of other stuff added. Nut butters should be fine as long as no one who isn't gluten free shares the jar. It is a good idea to drop dairy at first. Butter should be okay as the amount of casien and lactose...
  23. ravenwoodglass
    My vision gets blurry at times when glutened and I seem to have a harder time changing focus. I also used to get visual migraines even without getting the headache. That hasn't happened in years though.
  24. ravenwoodglass
    You may want to ask your doctor for a referral to an endocrinologist. They can help you with hormone issues.
  25. ravenwoodglass
    I think everything looks good with the exception of this question ' why does it have to me more strict than NCGS ' You may want to change it to something like - What happens if a celiac accidentally eats gluten - and talk about the antibody reaction and how it can be more severe than before diagnosis. The reason for dropping the NCGS question is because...
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