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View Poll Results: How were you diagnosed with GS/CD, and what has been the outcome of gluten exclusion?
Biopsy - no symptoms with gluten-free diet 4 57.14%
Biopsy - still symptoms with gluten-free diet 1 14.29%
Anti-EMA or Anti-ttg - no symptoms with gluten-free diet 0 0%
Anti-EMA or Anti-ttg - still symptoms with gluten-free diet 0 0%
Anti-gliadin - no symptoms with gluten-free diet 1 14.29%
Anti-gliadin - still symptoms with gluten-free diet 1 14.29%
Voters: 7. You may not vote on this poll

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  #11  
Old 10-10-2006, 10:23 PM
annelb annelb is offline
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I can't vote on your poll either. I suspected a problem with gluten and confirmed it with Enterolab testing. This is a stool test. I did both the IgA antigliadin antibodies and IgA tTG and fecal malabsorption. All were positive.

I have had fantastic improvement in my health with a GF diet but I can't say I am symptoms free. The reason I looked into gluten sensitivity was because of my peripheral neuropathy. My pain level went from a 9 to a 1-3. My feet have been greatly damaged and may never feel totally normal(can't even remember what that would feel like) but I don't have to take anything for pain.

I found that I would get just as sick on yeast as I did on gluten. I have had to remove yeast too. I also have antibodies to egg white, casein and soy. Not sure I have obvious symptoms to these.

You may have already found this article about reasons for symptoms to persist after starting a GF life.

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

Quote:
Gastrointest Endosc Clin N Am. 2006 Apr;16(2):317-27.Click here to read Links
Monitoring nonresponsive patients who have celiac disease.

* Krauss N,
* Schuppan D.

Department of Medicine I (Gastroenterology, Hepatology, Pneumonology and Endocrinology), University Hospital, Ulmenweg 18, Erlangen 91054, Germany. Norbert.Krauss@med1.imed.uni-erlangen.de

Because of the wide variations in the clinical presentation of celiac disease and because treatment exists that is effective in most cases, screening of the general population for celiac disease has been considered. There is still no evidence that patients who have symptom-free celiac disease are at increased risk of small intestinal lymphoma or other complications. Prevention of osteoporosis seems to be the strongest indicator for widespread screening today [22].The major cause of failure to respond to a gluten-free diet is continuing ingestion of gluten, but other underlying diseases must be considered.Many different drugs (eg, anti-tumor necrosis factor [TNF]-alpha) have been used in patients who have RCD [23]. Steroid treatment has been reported to be effective even in patients who have underlying early EATL.Histologic recovery in patients who have celiac disease usually takes several months but can take up to 1 year, even if the patient remains on a strict gluten-free diet. Some patients report celiac-related symptoms for months after a single gluten intake.The definitions for RCD in literature vary. The authors consider the definition give by Daum and colleagues [24] suitable. They defined true RCD as villous atrophy with crypt hyperplasia and increased IELs persisting for more than 12 months in spite of a strict gluten-free diet.If a patient is not responding well to a gluten-free diet, three considerations are necessary: (1) the initial diagnosis of celiac disease must be reassessed;(2) the patient should be sent to a dietician to check for errors in diet or compliance problems, because problems with the gluten-free diet are the most important cause for persisting symptoms; (3) other reasons for persisting symptoms (eg, pancreatic insufficiency, irritable bowel syndrome, bacterial overgrowth, lymphocytic colitis, collagenous colitis, ulcerative jejunitis, protein-losing enteropathy,T-cell lymphoma, fructose intolerance, cavitating lymphadenopathy, and tropical sprue) should be considered.Other causes for villous atrophy are Crohn's disease, collagenous sprue, and autoimmune enteropathy.Abdulkarim and colleagues [25] examined 55 patients who had a diagnosis of nonresponsive celiac disease. He found that 6 did not have celiac disease, and25 still had some gluten ingestion.Tursi and colleagues [26] reported 15 patients who had celiac disease with persisting symptoms. Because histology improved in all patients after several months, RCD was excluded. Of the 15 patients, 10 had small intestinal bacterial
How is your "gluten tolerance test" going?

Anne
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  #12  
Old 10-11-2006, 12:40 AM
DrRoss DrRoss is offline
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Quote:
Originally Posted by annelb View Post
How is your "gluten tolerance test" going?

Anne
Ate half a loaf of whole wheat bread today. No effect so far...
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  #13  
Old 10-11-2006, 07:34 AM
glenntaj glenntaj is offline
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Default The paradigm shift--

--that many gastric docs are not yet ready to accept, I think--though I believe the research evidence is starting to point to it--is that gluten sensitivity is a broad ranging condition, of which frank celiac is just one part.
It is possible to be gluten sensitive without EVER having flattened enough villi to get a "clear" diagnosis of celiac, and to have the condition without ever having gastric symptoms--although one may have many other symptoms, form the neurologic to the reproductive.

This is where the value of the anti-gliadin antibodies come in--if they are present, the body is reacting to something. I laugh when people say that anti-gliadin antibodies are non-specific because 12-20% of the population has them--that means 80-88% of the population doesn't, and there's no reason to assume that one out of 5/one out of six people couldn't be gluten sensitive--there are plenty of other intolerances, such as to lactose, that are found in high proportions of certain populations.

While I certainly don't have anywhere near a scientific survey, I'm noticed, anecdotally, that a greater percentage of people with isolated anti-gliadin findings report non-gastric symptoms, either alone or with gastric symptoms, than those who have anti-tranglutaminase/anti-endo positivity; such people typically have some gastric symptoms and/or evidence of villi deterioration.

I have the suspicion that many gastric docs don't want to "let go" of celiac disease just yet--especially as it has recently become a "hot" diagnosis.
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  #14  
Old 10-11-2006, 07:56 AM
pakisa100 pakisa100 is offline
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My dh was on a gf and dairy free diet for 18 months before *d* cleared up. He was about 35 years old at the time. So, 6 months is no where near enough time to notice a difference for an adult.

Also, if you are reacting to casein, then being lactose free is not good enough.

His tests all came back negative so we can't vote on your poll either. (He had a 'classic' celiac childhood.)

Hope you find your answer.

Kind regards,
KimS
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  #15  
Old 10-11-2006, 09:32 AM
annelb annelb is offline
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Quote:
Originally Posted by DrRoss View Post
Ate half a loaf of whole wheat bread today. No effect so far...
There are people with full blown, total villous atrophy who do not have obvious symptoms if they eat gluten. There are people who show little to no villous changes who react violently to miniscule amounts of gluten. Symptoms do not alway reflect the amount of damage that is taking place in one's body. I know one woman who was diagnosed by biopsy and blood and she says she does not have any symptoms when she eats gluten. She says she wishes she had symptoms as she feels she would be more careful with her diet if she did.

You know you have antibodies to gluten. If you chose to continue to eat gluten it may be wise to be retested for CD every few years to be sure that you do not go on to develop celiac disease.

Anne
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  #16  
Old 10-11-2006, 09:33 AM
jcc jcc is offline
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Quote:
Originally Posted by glenntaj View Post
--

While I certainly don't have anywhere near a scientific survey, I'm noticed, anecdotally, that a greater percentage of people with isolated anti-gliadin findings report non-gastric symptoms, either alone or with gastric symptoms, than those who have anti-tranglutaminase/anti-endo positivity; such people typically have some gastric symptoms and/or evidence of villi deterioration.
I have read the antigliadin IgA antibodies do have more specificity to intestinal involvement, and the antigliadin IgG antibodies are more representative of non-gut involvement. It is old news that IgA antibodies have more specificty to gut involvement, but the new part is honing in that antigliadin IgG antibodies may not be so meaningless afterall.

I've collected so many articles now that I have a hard time remembering where I have seen what. I will have to track down what I'm thinking of now, because I have added a page to TGF about antigliadin antibodies...so I can add it there, and not lose it again! Of course, this research in regard to gluten sensitivity outside of celiac disease is ongoing, but it is nice to know several researchers are 'on it'.

Cara
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  #17  
Old 10-11-2006, 09:51 AM
annelb annelb is offline
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Two doctors who believe that the IgG AGA is important are Dr. Ford http://www.doctorgluten.com/articles.htm#Press and Dr. Hadjivassiliou http://brain.hastypastry.net/forums/...read.php?t=190

Anne
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  #18  
Old 10-11-2006, 10:39 AM
aklap aklap is offline
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So does Gastro Dr. Rudert

http://www.clanthompson.com/exp_doct..._category_id=4

Quote:
QUESTION: What blood tests need to be taken to diagnose CD?

DR. RUDERT: It is presently thought that the most specific blood test available is tissue transglutaminase. Tissue transglutaminase correlates with total villous atrophy on biopsy. (In other words: a positive tissue transglutaminase correlates with a completely flat small bowel biopsy.) When I screen for Celiac disease, I obtain antigliaden antibodies (IGG & IGA), antireticulin antibodies and tissue transglutaminase (the major endomyosial antibody). Some physicians are no longer obtaining antireticulin antibodies, however I find that this is beneficial in select individuals. Remember seronegative Celiac may exist and has been described in the Netherlands.
http://www.clanthompson.com/exp_doctor_rudert.php3

Quote:
Cynthia Rudert

Cynthia S. Rudert, M.D., F.A.C.P. is a Board Certified Gastroenterologist in Atlanta, Georgia, specializing in Celiac Disease. She is the Medical Advisor for the Celiac Disease Foundation and for the Gluten Intolerance Group. She is the Medical Director of the Gluten Sensitive Support Group of Atlanta and a member of the Celiac Standardization Group.

Prometheus Labs Celiac Panel: http://www.prometheuslabs.com/wwp/pd...c_Services.pdf

University Chicago's CD Program - Followup testing: http://www.celiacdisease.net/CeliacD...5/Default.aspx

Last edited by aklap; 10-11-2006 at 11:08 AM.
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  #19  
Old 10-11-2006, 01:06 PM
NancyM NancyM is offline
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I'm self-diagnosed, then got confirmation diagnosis with both a dietary trial and Enterolabs. Dr. Fine also found a problem with casein, I'm pretty sure soy is also a problem for me given some pretty bad stomach aches after eating soy based ice cream.

I've got really touchy intestines right now and I'm still figuring out what foods are making them unhappy. Putting myself on a very basic diet of meat, veggies and fruit seems to stablize things. Then I start adding stuff back in and it all goes downhill. I just need to be more methodical with this approach.
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  #20  
Old 10-11-2006, 03:02 PM
diamondheart diamondheart is offline
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I don't fit your poll either. I was off gluten for so long that none of these tests would have worked for me anyways. I confirmed my gluten sensitivity through genetic testing.

But being gluten free, dairy free, corn free, and quinoa free were not enough for me. I did additional IgG antibody testing to 90 foods and found out I was reacting to soy and nuts and seeds. Once I cut those out, my diarrhea cleared up.

I don't think it's normal to cut out lots of foods like I am doing, so I'm continuing to do research on my own about leaky gut syndrome and how to heal the gut. My current favorite book is Karen DeFelice's book on Enzymes. It has more to do with the autism connection, but she has a lot of good information about how to heal the gut. There are so many other things that can happen to your gut once you have something like celiac disease, such as yeast, dybiosis, lack of digestive enzymes, etc. For some of us, I don't think it's as easy as cutting out gluten to solve our digestive problems. There is a whole holistic approach that has to be taken. It's time consuming to figure it out and I really don't think that there are many doctors who understand it all. Karen also has a new book out that I'm dying to read. I'll try to put up the links later, but gotta run!

Claire

Last edited by diamondheart; 10-12-2006 at 07:04 PM. Reason: Added link
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