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sylviaann

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Everything posted by sylviaann

  1. sylviaann
    Did you get a copy of your Pathology report after your recent colonoscopy? Even if the doctor's report looked clean (when he actually examined you), the pathology report is what you really want to see and keep a copy of. Last year. my doctor's advised me that everything looked good on the day of my colonoscopy but the pathology report revealed my diagnosed...
  2. sylviaann
    I would really be concerned about this. Have you had a colonscopy recently?? I was diagnosed with ulcerative colitis twelve years ago and the hallmark symptoms are rectal bleeding and mucus. Your GI doctor should not take this lightly. Some Celiacs have UC and Celiac Disease. They should also be ruling out a possible bacterial infection. I would be searching...
  3. sylviaann
    Hey Deb, I cannot recall if I told you..but a wonderful hematologist ordered Venopher IV iron infusions for me last year (In Tampa) when my ferritin was low. Hope this helps, Sylviaann
  4. sylviaann
    Hey Michelle, You are right..Dr, R. may or may not want to biospy you. I read somewhere that the "camera pill" is being used more to view areas in the stomach that can be difficult to see with an upper endoscopy. Anyway, Dr. R. will know best....she takes great care of her patients .....I love my visits with her! I am curious to know..what type of doctor...
  5. sylviaann
    Hi Michelle, I am so glad you were able to schedule your appointment/procedure with Dr. R. Are you planning to have a biopsy/ endoscopy? I received my Organic Acids test results and they were very interesting to say the least. One discovery that I would have never known or imagined..I have elevated 2-Methylhippurate (a sensitive & specific marker for...
  6. sylviaann
    Hi Jason, I am so sorry you were glutened at Columbia Restaurant. I live in Florida (near Tampa) and I can tell you from personal experience that I will never eat at Columbia again. I was glutened at the Saint Augustine location last Thanksgiving. Although they have a "gluten-free Menu", it is obvious that the waitstaff has not been educated on cross contamination...
  7. sylviaann
    I am so sorry you are going through a difficult time and understand how you feel. I fall into a "grey area" on the gluten spectrum and see a wonderful Celiac Specialist in Atlanta. Have you already been formally diagnosed by a Celiac Specialist or did you start a gluten-free diet based on your symptoms? Have you had an opportunity to consult with a dietician...
  8. sylviaann
    Yes..Celiac Disease could still be an option or Gluten Sensitivity. Either way, the treatment would be the same..a gluten-free diet. I tested negative (blood labs and biopsy) in 1999. I was retested (blood labs only) by an endocrinologist in 2007 (test results were negative). I decided to return to Dr. R. for a second opinion last year (I had not seen her...
  9. sylviaann
    Hey Deb! Have you called Pantene recently?? I was advised several months ago by a company representative that they could not guarantee that Pantene shampoo and conditioners were gluten free due to the fragrance in the product. The fragrance is "proprietary info" and therefore, they could tell me what specific ingredients are in the fragrance. I found this...
  10. sylviaann
    Sounds like you have a great plan in place and a wonderful GP! I have Cigna PPO (in & out of network) and I need to make a few calls next year to see what services (like you) will be covered. Most conventional physicians are not familar with this type of testing but if your doctor is "open" for innovative testing, this is a great diagnostic tool!. My...
  11. sylviaann
    You are correct..most GI physicians are not well educated on the "gluten spectrum" and do not take it seriously. They spend little time discussing our problems and want to shuffle patients in and out as quickly as possible. We can"thank" our wonderful health care system which is run by the health insurance companies for this. I think Dr. Rudert is very knowledgeable...
  12. sylviaann
    You are truly in a delicate situation. I am not a mother but was thinking..has your son ever joined a forum or local support group near his college for young Celiacs (in the past) or met any young Celiacs who he can share his feelings with? He might even meet a new girlfriend through a forum or support group who could have a positive influence on him! I realize...
  13. sylviaann
    I would suggest that you seek out a consultation with a knowledgeable dietician (who is well educated on Celiac Disease) and they will evaluate/test you for possible vitamin and nutrient deficiencies. I am in the process of taking a test called an Organic Acids test and am anxious to discover what areas I am deficient, so I can work on correcting them asap...
  14. sylviaann
    Based on my personal experience, there are several possibilties for your reaction to the meal. I discovered that some corn products (i.e. Tortilla chips and corn tortillas) cause me to react as if I had ingested gluten. I suffered from bloating and gas pain whenever I ate these products. When I stopped eating these products, my problem went away. Cross contamination...
  15. sylviaann
    Hi there, I love in Florida (Tampa area) and the only real Celiac Specialist is Dr. Cynthia Rudert in Atlanta. You would have to drive five hours to see her, but she is well worth the trip. She does not file insurance claims but if you have insurance with an out-of network option, you can file the claim on your own. If you have been gluten-free for...
  16. sylviaann
    Fyi..that info on skin absorption (Cosmetic products is outdated). Althought the Mayo Clinic is well respected, they only speciialize in treating selected health conditions. They are not known for their expertise in Gluten sensitivity or Celiac Disease. Sylviaann
  17. sylviaann
    Fyi...You do not have to have full blown Celiac Disease to suffer from the effects of ingesting or using topical products containing gluten. Many patients who are gluten sensitive suffer symptoms that are worse that Celiacs...but without the villous atrophy. At the recent GIG Conference held in Seattle, Dr. Peter Green said that he has changed his mind...
  18. sylviaann
    I have been glutened by processed spices before. What spices do you safely use without suffering a reaction?? I am tired of using only real garlic. You sound like me..my wrist started hurting last weekend after eating organic chicken sausage. I suffered my gluten reaction (myoclonus and GI) for the next several mornings and nights. Corn bothers me too....
  19. sylviaann
    I am so sorry you were glutened. I have been going through the same roller coaster since last Fall and I finally reached the point where I stopped eating ALL processed food (even the "gluten-free products) for a few weeks. I found that my neurological problems disappeared after several days. You may want to think about trying this. If you see positive results...
  20. sylviaann
    I respect your opinion..every celiac and gluten sensitive person reacts differently. In my experience and in my Celiac Specialist's experience (she lectures all over the country), she believes that topical products can,,and have caused reactions with many of her patients.
  21. sylviaann
    You are very welcome! I was always a one cup coffee drinker too! Like you, I just enjoyed that one cup and it was hard to think about giving it up. My lower GI problems had become so severe (I lost ten lbs. in a year) that I told myself..it has to go if I want to heal. I felt the same as you about cosmetics. I never knew or imagined that I could...
  22. sylviaann
    I am extremely sensitive and will suffer from neurological symptoms (myoclonus) if I use cosmetic products (topically) that contain gluten. My Celiac Specialist acknowledged my reaction by saying that several of her patients had suffered various reactions from using cosmetic products containing gluten. Last year, I was actually glutened by a Nexus shampoo...
  23. sylviaann
    I was suspicious that I may have been suffering from a reaction (neurological) after using Bob's All Purpose Flour to bake with. I recently stopped using it and recently switched to Tom Sawyer flour. Sylviaann
  24. sylviaann
    Correction to my last post.....When I eliminated coffee for several months, I started drinking decaf TEA (confirm that it is gluten-free) with gluten-free honey. I started adpting to this nicely as a substitute.. You could even add gluten-free ginger (giner is great for digestive issues). Sylviaann
  25. sylviaann
    You are not alone I have been going through this since last October and I take one day at a time. I really miss eating out but after reacting from repeated cc (i.e. croutons picked off my salad by the wait staff), I cannot bring myself to inflict unnecessary harm/risk on myself. I drank decaf (confirmed gluten-free) with honey for several months, but only...
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