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Lesliean

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About Lesliean

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  • Interests
    running, exercise, vegan diet, Buddhism, children, my german shepherd, classical music
  • Location
    anchorage alaska
  1. Chrissy, sorry I was unclear about minimal villi flattening and negative blood work. Many 'healthy' people are picked up by positve blood work but don't have a positive biopsy. In the past they would have been told to eat wheat. That they don't have celiac disease. But there are also people who have autoimmune diseases, little or no villi flattening, and negative blood work. I just want people like me who have negative blood work to be considered for gluten intolerance and not told they do not have it. Leslie
  2. In a perfect world the test would be definitive for the disease but the blood tests for celiac disease are not 100% specific nor sensitive. Ema has a high sensitivity and specificity (according to the article posted at facs at this website) because it correlates to total villi atrophy. Anyone with a negative biopsy is considered negative for celiac disease. That still leaves undiagnosed ALL the people who have other organs targeted by gluten. What you must grasp is that people with minimal villi damage (undetected by biopsy) sometimes have negative blood work and yet have systemic autoimmune syndrome. These people will have diabetes, neuropathy, thyroiditis... (over 200 disease processes) and yet untill they pass a threshold of illness they might test negative by blood test. The danger is that the damage is often irreversable. So yes, your test is so great for detecting complete villi damage but will often not catch early celiac disease or a lot of the gluten intolerance where there are other targeted organs. Transglutaminase only becomes positive when the villi are completely damaged. Doctors love this test because it correlates to a positive biopsy but its like using the damage from a heart attack to diagnose heart disease. Too late. That is why many of us support a gluten free trial in people who test negative on the above tests. And why so many of us support Dr. Fine. Please understand, people are testing negative, being told they are not celiac and dying of gluten intolerance. I sympathize with your mom's experience with a gluten free trial but there is no easy test for this condition and more people are being harmed by not taking a gluten free trial or doing Enterolab testing. Like me they might test negative and be told they do not have celiac disease even though they remain quite ill and untreated. I did not listen to my doctors who said I was negative for celiac disease and within 6 months of giving up gluten was completely off Prevacid (2 years) with no reflux, off all asthma medicine and asthma gone (7 years and as much as 1780mg Flovent a day), heart beat regular, cough and voice loss gone, hypoglycemia gone, digestive problems gone (I had thought they were normal)... (too many symptoms to list all). And please don't say that patients should just ask for the full panel. Most people don't have a grasp of the information. With gluten intolerance, most doctors don't have a grasp of the disease and its many manifestations. My doctor is frustrated that so many patients like me test negative. I am hoping to get him on the gluten free trial bandwagon becuase his instincts are correct and these people probably do have gluten intolerance. They just don't have complete villi damage. I need more time to read the complete postings but now that I read your story I realize where you are coming from. But really, don't you see more doctors tell patients their problems are in their minds then telling them they don't have the answer yet? My doctors told me; "Maybe you are just getting older", "You have allergies and will have to take care of them yourself", "I don't know what a specialist would do that I haven't done". Meanwhile my peak flow was 60% of what it is today. Why do you say the 5% of depressed patients that do not resolve with medication have physical conditions causing the depression when the other 95% who respond to treatment could also have an underlying physical condition resulting in depression (ie-gluten intolerance)? That seems to be an American 'treat the symptoms' logic. Treat the whole patient. Look for patterns. Look for underlying causes. Leslie
  3. I have an e-mail in to Cara. I'll post her response if I get one. Maybe she will know something. So many of us use more than one website and gravitate to one or the other for different things. I always refer to celiac.com for banned ingredient lists but use braintalk for recipes... The message board is just a personal preference. Thank God both are available to us. We need all the help we can get. John Lester did say he was traveling and down for a while only and doing repair and upgrades. Maybe it is a time consuming process. Especially if it requires parts. Good to see you Claire! We are old friends. I hope all is well with you. I hope all the people just working through their diagnosises and treatment find their way to websites and people who can guide them. We all probably have stories to tell about being sick and not knowing where to turn for help. Leslie
  4. I think of hastypastry.com or braintalk as the other website with a great message board. Similar to here with a huge research collection to peruse. Since they went down a month ago there has not been a single update on the status of their upgrades and repair. That is a bit disconcerning. Does anyone know the status of hastypastry.com? When they will be back? I hope they kept their permanent file information that included everything from doctor abstracts and articles to recipes. Is there anyone out there from braintalk who has information? Leslie
  5. Does anyone know the status of hastypastry.com? Its been down now for a month tomorrow and there have been no updates. Leslie
  6. I started with Bette Hagman's recipes but then made it a more fiber rich and complete protein by changing it a bit. I also like it much better than the bland potato starch/tapioca starch heavy processed breads I've tried. I use 1/3 each corn, garbonzo, and tapioca flour in everything from breads to cakes. and 2 cups of this mix with 2 cups of corn meal for cornbread. Leslie
  7. I'm a month behind your post, celiac3270, but can I get a copy too? Please? jlanders@alaska.net
  8. Yea! Thank you Laurie. I bought some Bob's Red Mill Buck wheat today.
  9. Been pouring through the Mountain House ingredients and it doesn't look good for gluten-free camping. Anyone know of a freeze dried dinner and breakfast pack company? My husband is taking my diagnosed daughter on their third annual rafting trip in the ANWR preserve in Alaska and room is of the essense. I can pack gluten-free for the trips we take, but for my husband it needs to be open the bag and pour in the water. That's all he can handle. Thanks
  10. I haven't been diagnosed but noticed severe eye dryness and vaginal dryness (as well as yeast infections) went away as if by magic when I went gluten-free. I hope you get relief soon.
  11. My presenting symptom was reflux and after 2 years of Pepacid I diagnosed thru Enterolab and the reflux went away within weeks of being gluten and dairy free. Also a congestion in throat and nose and ears went away. Only then did I realize all the gastro problems had not been normal. As well as irregular periods, heart rate...
  12. I'm hooked on the Spice Hunter's spices. Does anyone else use them and are they ok? I called them and they said they don't add gluten but don't keep a gluten free plant. Is Kraft bar b que sauce gluten free? I could never find out and you would make my recently diagnosed daughter very happy if you say yes.
  13. Is buckwheat ok for us to eat in America? I see Bob's Red Mill buckwheat when I shop and have been tempted but not till you tell me it's ok.
  14. I'm vegan in addition to gluten free. Here is a great link to great recipes: http://brain.hastypastry.net/forums/showthread.php?t=74158 And here is the link to all the recipes: Beverages - Awesome Ones for All Seasons http://brain.hastypastry.net/forums...ght=fruit+water Bread, Muffin, Cracker, Crust & Crumble Recipes http://brain.hastypastry.net/forums...ead.php?t=48648 Brunch and Breakfast Ideas http://brain.hastypastry.net/forums...ead.php?t=56350 Chinese/Thai Food http://brain.hastypastry.net/forums...ead.php?t=63674 Cookie & Cake Recipes http://brain.hastypastry.net/forums...ead.php?t=49946 Dairy Free Recipes http://brain.hastypastry.net/forums...ead.php?t=61509 Dairy Free gluten-free Cake Icing Recipes? Birthday Party HELP! http://brain.hastypastry.net/forums...ead.php?t=40020 Dinner http://brain.hastypastry.net/forums...hread.php?t=549 Dinner Ideas http://brain.hastypastry.net/forums...ead.php?t=44676 Egg Free Baking http://brain.hastypastry.net/forums...ead.php?t=58868 Fish Dishes http://brain.hastypastry.net/forums...4658#post604658 Freezer Meals http://brain.hastypastry.net/forums...ead.php?t=63720 Mexican Meals http://brain.hastypastry.net/forums...ead.php?t=71389 Noodle Recipes http://brain.hastypastry.net/forums...ead.php?t=65317 Nut recipes http://brain.hastypastry.net/forums...ead.php?t=59632 Pizza http://brain.hastypastry.net/forums...ead.php?t=72828 Pizza Dough discussion http://brain.hastypastry.net/forums...ead.php?t=82335 Pot Luck Dinner Ideas and Discussion http://brain.hastypastry.net/forums...0755#post740755 Puddings, Pie Shells and Puff Pastry http://brain.hastypastry.net/forums...light=pecan+pie Sauces and Seasonings and Salsas http://brain.hastypastry.net/forums...ead.php?t=60897 Seafood Fare http://brain.hastypastry.net/forums...4658#post604658 Snacks/Travel http://brain.hastypastry.net/forums...5141#post685141 Stirfry sauces http://brain.hastypastry.net/forums...ead.php?t=54394 Sugar (refined) Free Recipes http://brain.hastypastry.net/forums...1788#post511788 Thanksgiving Recipes & Ideas http://brain.hastypastry.net/forums...ead.php?t=45082 Vegan/Vegetarian Recipes http://brain.hastypastry.net/forums...ead.php?t=74158 Yeast Free Recipes http://brain.hastypastry.net/forums...highlight=yeast __________________ I hope you enjoy them as much as I do
  15. Kaiti, When people ask for what tests to be done I always wait for your answer. You put a great panel of tests up with clear guidance. The study link for my first post was on the post and here is the header to it that I did leave off: Rom J Gastroenterol. 2003 Jun;12(2):101-6. I brought this abstract in to show my specialist and he was very impressed by it. Autoantibodies and histogenesis of celiac disease. Rostami K, Mulder CJ, Stapel S, von Blomberg BM, Kerckhaert J, Meijer JW, Pena SA, Heymans HS. Department of Gastroenterology Withybush General Hospital, Pembrokeshire, Haverfordwest, UK. krostami@hotmail.com. (see weblink in above posting) In America we miss diagnosing most celiacs (studies show 1/133). I agree that the tTga is the best test currently to specifically diagnose celiac disease, but this study (as well as a few more recent ones I have read recently) are finding a coorelation between tTga's being positive and the amount of villi damage. They conclude the moderate and mild early cases will be missed (till later) and they recommend keeping AGA and AGG to help pick up those cases. I like to see blood work used without biopsy. I just recommend a complete panel including tTga and AGA and AGG. This seems in line with your recommendations to people who write in.