This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
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.
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.
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.
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.
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...
I'm vegan in addition to gluten free. Here is a great link to great recipes:
And here is the link to all the recipes:
Beverages - Awesome Ones for All Seasons
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. firstname.lastname@example.org. (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.
I hear what you are saying. But these aren't articles on the web. They are abstracts from medical peer reviewed studies. My vote is for several tests to be done at one time and to not rely on one or two tests.
tTga misses up to 70% of celiacs so the anti-gliadin tests are very important. I am a lot less concerned about the relatively low sensitivity (being positive when you don't have it) than I am with a low sensitivity (being told you don't have it when you do) of the individual tests. The problem, as I see it, is that untill you have an advanced case with moderate to severe intestinal damage you may not show up positive on any one test. By that time you will no doubt have all sorts of medical problems and some of them are likely to not be reversable.
Autoantibodies and histogenesis of celiac disease.
OBJECTIVE: Autoantibodies are used as markers for celiac disease (celiac disease) identifying patients with mucosal lesions. The purpose of this study was to evaluate the sensitivity and role of the autoantibodies such as IgA antiendomysium (EMA), IgA antigliadin (AGA) and the IgA antitissue transglutaminase (tTGA) in histogenesis of celiac disease. METHODS: Seventy-nine cases including 30 untreated celiacs, 5 celiacs on gluten-free diet (GFD), 41 first degree relatives and 3 non-relatives suspected for celiac disease were investigated. Three untreated celiacs with IgA deficiency were excluded from this study group. IgA antibodies to tTGA were determined by ELISA, as described before. Twelve of 41 relatives and 2 cases of non relatives suspected with positive serology underwent a small intestinal biopsy. Results were correlated with the degrees of abnormality of the intestinal mucosa in patients with celiac disease. Intestinal biopsies obtained from study population were evaluated for histological quantification. RESULTS: Celiacs and suspected cases with positive EMA/AGA and or tTGA showed shorter villi (p < 0.007) and/or a higher number of intraepithelial lymphocytes (IEL) (p < 0.035). The sensitivity of serology (EMA, AGA, tTGA) in patients with Marsh IIIc was 100%. However, in patients with Marsh IIIa the sensitivity for EMA, AGA, and tTGA was 40%, 50% and 20% respectively. CONCLUSIONS: The appearance of antibodies is related to the degree of mucosal infiltration by IELs. Although tTGA, like EMA provide a highly sensitive parameter for the detection of celiacs with severe mucosal damage, it appears to be less sensitive (even less than AGA) in celiac patients with milder histopathological abnormalities. However, it should be recognized that the substantial part of the celiac population present with these milder forms of mucosal abnormalities. Using tTGA as a single test in screening may result in missing up to 60-70% of celiacs with mild mucosal abnormalities. Combination with other screening tests (at least with AGA) is essential and strongly recommended.