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mamabear

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Latest Celiac Disease News & Research:

Everything posted by mamabear

  1. mamabear
    The Wall Street Journal had a front page article on celiac about a year ago, and they listed the genetic incidence of celiac disease in several countries. Norway led all countries with ~2% of the population; Italy was second with 1.2%; the British Isles with ~1% and Germany with .3%. I can find the exact date it was published if anyone is interested. It was...
  2. mamabear
    You didn't say how long you have been gluten free? Is it your iron level that is so low, or your ferritin(iron stores) ? There is a relatively new oral iron supplement called Tandem Plus that seems to be better on replacing iron stores....has dual forms of iron along with some other minerals/vitamins. It is by prescription. If you are absorbing again, this...
  3. mamabear
    I agree with JerryK and jerseyangel.....you already have a pathologist's diagnosis on the first endoscopy. I can't imagine the reasoning for a second EGD now to reaffirm what the first showed. She wants more better what???? Sounds like GI#2 is not as cognizant about celiac as a tertiary specialist should be and is wanting her own studies...for her own agenda...
  4. mamabear
    I also was told I could have gluten after following the diet for 6 months. I did not take his advice , and save the occasional glutening, I have been gluten-free since April '03. I do not believe my GI was being cavalier about the condition, rather it was a lack of knowledge of the disease process. At least he was looking for celiac 4 years ago !! I think...
  5. mamabear
    Celiac is by definition, histologic damage to the small intestine from an autoimmune reaction to gluten. Standard medical definition does not include gluten sensitivity as a separate issue.I think the concept of a separate non-celiac gluten-sensitive condition MUST be examined by the medical powers that be....and delineated. There are FAR too many people...
  6. mamabear
    Another possibility for you might be to investigate a small,family owned Mexican restaurant. I found one and got to know the owner. He has been extremely careful to check ingredients and their recipes for me...even brought out the chips' box to show they were gluten-free after I was getting CC from somewhere! Knowing how to say 100% corn, no wheat in...
  7. mamabear
    Uh oh.....here in Memphis, the second ingredient(seasoning) in the Sam's Wholesale Club rotisserie chicken is wheat ! Someone was trying to bring me a gluten-free lunch last week and that was on the label....
  8. mamabear
    Another group of meds to watch are blood pressure meds. When you are healing/healed after gluten-free diet, and if you are also hypertensive, check your pressures regularly as it may require less medication. Be sure and notify your doc if this happens, as some of these meds have to be decreased in a regimented way.
  9. mamabear
    Not to my knowledge. A hiatal hernia is a rupture of the opening between the chest and abdominal cavities. It is "mechanical" by nature. Celiac disease has an association with gastroesophageal reflux disease, but there are varying studies that emphasize its connection. You can have reflux with or without a hiatal hernia.
  10. mamabear
  11. mamabear
    Stephanie, Maybe ..since they are family.....they know that THEY might have it,too and it makes them uncomfortable from that standpoint?? You know, what you don't know won't hurt you? Or maybe it's just a celiac fatigue thing...I have had my worst glutenings from family meals, so I depend on getting my own gluten-free condiments,etc.. and boring them...
  12. mamabear
    I've sent you a PM. You are correct in that the inspection through the endoscope may LOOK normal, and be abnormal on biopsy. I was trying to say it IS possible to see the damage. Ultimately, the biopsy results trump the visuals.
  13. mamabear
    I get similar symptoms( except weakness) and have also found calcium/magnesium/zinc tablets and a prescription vitamin called Metanx for being very helpful. Metanx has biologically active forms of B12,B6 and Folate and is very strong. I have backed off on that to every other day now after 4 months daily use. I also get better when I can exercise. Anyone...
  14. mamabear
    Sorry...a little more....I did not mean to imply you don't need the biopsy!! You do.....I just mean that abnormalities CAN be visible, but get the tissue for biopsy if you are in the small intestine!!
  15. mamabear
    First I would establish what all was biopsied and what were the results. Ask your internist or FP to get a copy of the pathology and then you can see what was recorded. Second, gee...I hate to say this, but.....you can see some damage some of the time. It is POSSIBLE to see abnormal areas in the small intestine with the naked eye via the scope or capsule...
  16. mamabear
    Sorry you are having such a rough time, Mtndog...I have had some long lasting glutenings. Usually they last 2 weeks or so, but I figure at least a couple have been strung together to last to a month or slightly longer. I haven't taken away dairy when it happens, because most of my dairy is yogurt and that usually helps me with its natural probiotics. I do...
  17. mamabear
    The small intestine has 3 parts....first after the stomach is the duodenum, The second part is the jejunum and the third part is the ileum which adjoins the large intestine or colon.
  18. mamabear
    Everyone has given you great advice. The standard for biopsy is in the second portion of the duodenum which is the first 1/3 if the small intestine. 6 biopsies should be made. It is absolutely important that the doc is made aware of your family history of celiac. If you can, find out who in your family had celiac as well as IBS and any other GI related illness...
  19. mamabear
    Rickops, I am concerned with your assessment of alarming muscle atrophy. I urge you to get an appointment early this week with your daughter's pediatrician. He or she can run interference with the GI and neuro doctors, and make appropriate calls to expedite her care. Please keep us up to date.
  20. mamabear
    Excellent point, CarlaB. Also note no tissue transglutaminase or endomysial antibodies were done. Still, you got to give them credit for getting this far and pursuing it !! JanFlower, the AGA antibodies are least specific for celiac....the above 2 are the most specific for diagnosing via serologies....conversely, AGA are the most sensitive. That means it...
  21. mamabear
    Hi January Flower, It is a very frustrating situation to be in. Blood tests alone cannot give a "certified" diagnosis of celiac sprue,but along with symptoms and co-existing conditions,can point us to the need for biopsy to prove celiac sprue exists. The antigliadin antibodies represent most closely anti-gluten status. Endomysial and tissue transglutaminase...
  22. mamabear
    Hi January Flower, I wanted to wish you a welcome to the board. It is a fantastic source of information and if you have a question,there are tons of folks ready and willing to help. I found Bette Hagman's books(cookbooks for the most part but with great prefaces) were a fast and quick resource when I got started in celiacland(I like that !)...I also was...
  23. mamabear
    Steve, I don't know you,but I can tell from the enormous response from these wonderful, caring forum members that you are a special man. Once again, I am absolutely amazed by the level of compassionate concern here! I ,too, hope you are finding sleep at this moment. I find that sleep will be your best friend until this glutening is over. If you are not sleeping...
  24. mamabear
    There are 5 articles listed in the National Library of Medicine website. Go to www.pubmed.gov and type in celiac disease and motor neuropathy. They are listed newest to oldest, which you can see is Jan '07 from 1968! Only 5 articles in the world literature shows how new this concept is to neurology. Neurologists are not much aware of the potential of celiac...
  25. mamabear
    The research and investigation into neurological celiac conditions is still in its infancy. I have mild sensory and motor symptoms and a diagnosis of celiac as well as autoimmune thyroiditis. My mother,her mother and sister all have/had rheumatoid arthritis. I think a return trip to the Mayo is in order, and specifically request the screening serological...
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