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A Question About Enterolab

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It is my understanding that many people use enterolab for their celiac testing. I was wondering why people here don't use traditional testing laboratories, such as the ones that test for blood anti-endomysial/transglutaminase/antigliadin antibodies for diagnosis of celiac/gluten sensitivity, because these are as far as I know highly specific and highly sensitive tests. Not to mention a lot less expensive.

After looking at the website for enterolab it is my personal opinion that it contains a lot of misleading information, or should I rather say information for which currently there's no scientfic proof. Celiac causing diabetes, as an example. Their testing methods are somewhat questionable. A quick Medline search for fecal gliadin and transglutaminase testing turned up the following study:

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Detection of secretory IgA antibodies against gliadin and human tissue transglutaminase in stool to screen for coeliac disease in children: validation study.Kappler M, Krauss-Etschmann S, Diehl V, Zeilhofer H, Koletzko S.

Division of Gastroenterology, Dr. v. Haunersches Kinderspital, Ludwig Maximilians University, 80337 Munich, Germany.

OBJECTIVE: To evaluate two commercial stool tests for detection of secretory IgA antibodies against gliadin and human tissue transglutaminase for diagnosis of coeliac disease in children with symptoms. SETTING: Tertiary care children's hospital. PARTICIPANTS: Coded stool samples from 20 children with newly diagnosed coeliac disease and 64 controls. Six children with coeliac disease had stool tests every two weeks for three months after starting a gluten-free diet. MAIN OUTCOME MEASURES: Secretory IgA antibodies against gliadin and human tissue transglutaminase in stool samples, determined in duplicate by using recommended cut-off limits. RESULTS: Sensitivity of faecal antibodies against human tissue transglutaminase was 10% (95% confidence interval 1% to 32%), and specificity was 98% (91% to 100%). For antibodies against gliadin, sensitivity was 6% (0% to 29%) and specificity was 97% (89% to 100%). Optimisation of cut-off limits by receiver operating characteristic analysis and use of results of both tests increased sensitivity to 82%, but specificity decreased to 58%. All follow-up stool tests remained negative, except for two positive anti-gliadin results in one patient, six and 10 weeks after the gluten-free diet was started. CONCLUSIONS: Neither stool test was suitable for screening for coeliac disease in children with symptoms.

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This study says that fecal antibody tests don't predict whether one has celiac/gluten sensitivity better than tossing up a coin. (because of the poor sensitivity). For any test to be useful at all specificity needs to be in the 90s.

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Dr. Fine has not published his research yet, so it is not widely accepted by the medical field. So, I guess the answer is we really don't know anything about his research till he publishes.

I can tell you why I used it.

I have always had digestive and health issues, sometimes so disabling that I could not hold a job. Other times I was fine and energetic. I've always eating fresh, whole food, with some junk food scattered in there. It was always puzzling why others who lived on McDonald's and Taco Bell were healthier than I was.

About four years ago I was feeling bad and read a book on health written by two doctors. They said that if you eat any food every day that you are probably "allergic" to it, especially if it is wheat, dairy, soy, or corn. I ate wheat every day, almost every meal. I laughed at the comment, but wanted to feel better so I cut out wheat. For about three days I felt like I had the flu. After about two weeks, I added wheat back into my diet and it made me feel ill.

For three years I went on without eating obvious wheat. The book had said that some foods that cause a reaction can be added back in with no reaction after not eating them for a while as long as you don't eat them daily. I started eating some wheat. I then got bad diarrhea, at least five times per day, and was losing a pound per week for four months. By that time I had cut out the obvious wheat, but not all gluten. This was the point where I had a blood test with no gluten challenge. All the doc tested was IgA. It was normal.

He sent me to a GI. I told him all I just wrote here -- the whole time we spoke I had my head leaning against the wall I was so weak - and he said "Celiac, and while we're testing we'll check to be sure there is no other autoimmune condition." I scheduled an appt. for six weeks later. He said I might want to eat a little more gluten before the test. I ate a little gluten about every other day. It made me so ill that I really could not even do my normal tasks. I was so dizzy and foggy that I didn't feel safe driving much of the time. I alternated between constipation and diarrhea. If I ate gluten at night, I would wake up with what felt like a really bad hangover.

As we all know, six weeks is not long enough for a gluten challenge, but any longer and I wouldn't have done it! Also, eating a little every other day is not enough either. Of couse, the biopsy was negative -- he only took three. I went gluten-free anyway and immediately got better. Even a small amount of gluten will make me sick for 8 days.

I tested with Enterolab after a couple months gluten-free just for my own piece of mind ... to know I wasn't crazy.

We all know that both the blood test and the biopsy can prove you have it but not rule it out. Dietary response is clinical proof, at least according to my doctor (not my GI, he wanted to start looking at other things and wouldn't answer any of my questions except through his office staff -- he was way too important to talk to me on the phone himself even when I asked repeatedly to speak to him -- the ONLY time I spoke to him about it was when I was coming out from under the influence of the anesthesia).

I will look forward to reading Dr. Fine's research when it is published. I know his testing is different from what you've posted as he has it patented, so there is no one else doing the same thing he is. So, I guess we're all waiting to see.

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I tested through enterolab after being very gluten light for 1 1/2 months. I had allergy testing done and cut out wheat and soy among other things. The only gluten products I wasn't allergic to were barley and oats which I didn't eat much of. I talked to my doctor about celiac testing before I ordered the test from enterolab. She was willing to do the test but I presumed I'd have been negative since I hadn't been eating much gluten.

I too, am waiting for Dr. Fine to publish his research. I am satisfied with enterolab and believe that we would have been among those that would have gotten very sick had we not pursued testing. We didn't have obvious symptoms.

I have since learned that since I had elevated liver enzymes 2 years ago, they should have pursued celiac testing at that time. My daughter also had Henoch Scholein Purpura which should have signaled a possible celiac connection. My oldest son has appeared perfectly healthy but already had mild malabsorption. Looking back, we can see where, if we had known we should have been tested and know if we get glutened now.

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Have you actually read Dr. Fine's research?

I like to think that I was given a good, sharp analytical mind so that I could think things through for myself, especially when the quality of medical care is pretty spotty.

Early Diagnosis Of Gluten Sensitivity: Before the Villi are Gone

Lecture about his findings

He has published in the past and he expects to publish his results late this year.

I'd like to see you compare his CV with your typical Gastrointerologists: (My doctor can beat up your doctor! :)

CURRENT PROFESSIONAL APPOINTMENTS:

Medical Director and Director of Operations

EnteroLab Reference Laboratory

www.enterolab.com

Director of Operations and Director of Medical Research

Intestinal Health Institute

www.intestinalhealth.org

Director of Operations and Chief Consultant

FinerHealth and Nutrition

www.finerhealth.com

PREVIOUS APPOINTMENTS:

Attending Physician and Staff Gastroenterologist

Department of Internal Medicine, Division of Gastroenterology

Baylor University Medical Center, Dallas 1992-2002

Medical Director, Gastrointestinal Physiology Laboratory

Baylor University Medical Center, Dallas 1996-1999

Staff Researcher, Division of GI Research

Baylor University Medical Center, Dallas 1992-2000

Attending Physician, Staff Gastroenterologist

Dallas VA Medical Center 1992-1998

Clinical Assistant Professor

University of Texas-Southwestern Medical School 1992-2000

UNDERGRADUATE EDUCATION:

University of Missouri - Kansas City

Degree: B.A. - Biology

MEDICAL EDUCATION:

University of Missouri - Kansas City, School of Medicine

Degree: M.D.

POSTGRADUATE MEDICAL TRAINING:

Internal Medicine Internship And Residency: 7/1/86 - 6/30/89

Baylor University Medical Center, Dallas

Gastroenterology - Research And Clinical Fellowship: 7/1/89 - 6/30/92

Baylor University Medical Center, Dallas

MEDICAL LICENSES:

Missouri

* Issued - August 1986

Texas

* Issued - July 1987

LICENSURE EXAMINATIONS:

National Board of Medical Examiners

* Part I 1983

* Part II 1985

Federal Licensure Examination 1987

Texas Medical Jurisprudence Exam 1987

BOARD CERTIFICATION:

American Board of Internal Medicine

* Internal Medicine 1989

* Gastroenterology 1993

RESEARCH GRANT AWARDS:

1990 Biomedical Research Support Grant - National Institutes of Health

1994 Smith Kline Beecham Clinical Research Award -

American Gastroenterological Association Foundation

1997 National Institutes of Health RO3 - Treatment of Microscopic Colitis

MEDICAL JOURNAL EDITORIAL BOARD POSITIONS:

Peptide Therapy: Index and Reviews 1997 - present

Baylor University Medical Center Proceedings 1996 - 2000

COMMUNITY SERVICE ACTIVITIES

Religious Singing for Local Synagogues 1993-present

Medical Advisor to Local CSA Celiac Sprue Support Group 1994-present

Email correspondence with online Microscopic Colitis Newsletter Support Group 1999-present

Organized and run a neighborhood organic produce co-op 2000-present

PUBLICATIONS:

JOURNAL ARTICLES

1. Zarabi CM, Huntrakoon M, Fine KD. Disseminated rhabdomyosarcoma of the urinary bladder in an adult. Southern Med J 1987;80:526-529.

2. Fine KD. Arthritis in the elderly, is it degenerative or rheumatoid? Baylor University Medical Center Proc 1988;1:25-34.

3. Hammer HF, Fine KD, Santa Ana CA, Porter JL, Schiller LR, Fordtran JS. Carbohydrate malabsorption. Its measurement and its contribution to diarrhea. J Clin Invest 1990;86:1936-1944.

4. Fine KD. Benzodiazepine withdrawal. Baylor University Medical Center Proc 1991;4:27-30.

5. Fine KD, Santa Ana CA, Fordtran JS. Diagnosis of magnesium-induced diarrhea. N Engl J Med 1991;324:1012-1017.

6. Fine KD, Santa Ana CA, Porter JL, Fordtran JS. Intestinal absorption of magnesium from food and supplements. J Clin Invest 1991;88:396-402.

7. Fine KD, Fordtran JS. The effect of diarrhea on fecal fat excretion. Gastroenterology 1992;102:1936-1939.

8. Fine KD, Santa Ana CA, Porter JL, Fordtran JS. Effect of D-glucose on intestinal permeability and its passive absorption in the human small intestine in vivo. Gastroenterology 1993;105:1117-1125.

9. Fine KD, Santa Ana CA, Porter JL, Fordtran JS. Mechanism by which glucose stimulates the passive absorption of small solutes by the human jejunum in vivo. Gastroenterology 1994;107:389-395.

10. Emmett M, Hootkins RE, Fine KD, Santa Ana CA, Porter JS, Fordtran JS. Effect of three laxatives and a cation exchange resin on fecal sodium and potassium excretion. Gastroenterology 1995;108:752-760.

11. Fine KD, Solano M, Polter DE, Tillery GW. Malignant histiocytosis in a patient with hepatic dysfunction and peliosis hepatis. Am J Gastroenterol 1995;90:485-488.

12. Fine KD, Santa Ana CA, Porter JL, Fordtran JS. Effect of changing intestinal flow rate on a measurement of intestinal permeability. Gastroenterology 1995;108:983-989.

13. Wenzl HH, Fine KD, Schiller LR, Fordtran JS. Determinants of decreased fecal consistency in diarrhea. Gastroenterology 1995;108:1729-1738.

14. Fine KD. The prevalence of occult gastrointestinal bleeding in celiac sprue. N Engl J Med 1996;334:1163-1167.

15. Wenzl HH, Fine KD, Santa Ana CA, Porter JL, Fordtran JS. Effect of fludrocortisone and spironolactone on sodium and potassium losses in secretory diarrhea. Dig Dis Sci 1997;42:119-128.

16. Fine KD, Byrd TD, Stone MJ. Successful treatment of chronic severe neutropenia with weekly granulocyte-colony stimulating factor. Br J Haematol 1997; 97:175-178.

17. Fine KD, Meyer RL, Lee EL. The prevalence and causes of chronic diarrhea in treated celiac sprue. Gastroenterology 1997; 112:1830-1837.

18. Fine KD, Lee EL. Efficacy of open-label bismuth subsalicylate for the treatment of microscopic colitis. Gastroenterology. 1998; 114:29-36.

19. Fine KD, Sarles HE, Cryer, B. Investigation of diarrhea caused by mesalamine in a patient with chronic non-granulomatous enterocolitis. N Engl J Med. 1998;338:923-925.

20. Fine KD, Ogunji F, George J, Niehaus MD, Guerrant RL. Utility of a rapid fecal latex agglutination test detecting the neutrophil protein, lactoferrin, for diagnosing inflammatory causes of chronic diarrhea. Am J Gastroenterol 1998;93:1300-1305.

21. Gruy-Kapral C, Emmett M, Santa Ana CA, Porter JL, Fordtran JS, Fine KD. Evaluation of cathartic-resin therapy for management of hyperkalemia. J Am Soc Nephrol 1998;9:1924-1930.

22. Fine KD, Meyer R, Lee EL. Colonic histopathology in untreated celiac sprue and refractory sprue: Is it lymphocytic colitis or colonic lymphocytosis? Human Pathology 1998;29:1433-1440.

23. Fine KD, Ogunji F, Florio R, Porter J, Santa Ana C. Investigation and diagnosis of diarrhea caused by sodium phosphate. Dig Dis Sci 1998;43:2708-2714.

24. Fine KD, Schiller LR. AGA technical review on the evaluation and management of chronic diarrhea. Gastroenterology 1999;116:1464-1486.

25. Fine KD, Stone MJ. Alpha-heavy chain disease, mediterranean lymphoma, and immunoproliferative small intestinal disease:a review of clinicopathologic features, pathogenesis, and differential diagnosis. Am J Gastroenterol 1999;94:1139-1152.

26. Fine KD, Nelson AC, Mossburg A, Ellington RT. Comparison of the color of fecal blood with the anatomical location of gastrointestinal bleeding lesions: potential misdiagnosis using only flexible sigmoidoscopy for bright red blood per rectum. Am J Gastroenterol. 1999;94:3202-3210.

27. Fine KD, Seidel RH, Do K. The prevalence, anatomic distribution, and diagnosis of colonic causes of chronic diarrhea. Gastrointest Endosc. 2000;51:318-326.

28. Fine KD, Ogunji F. A New Method of Quantitative Fecal Fat Microscopy and its Correlation with Chemically Measured Fecal Fat Output. Am J Clin Pathol. 2000;113:528-534.

29. Fine K, Lafon G, Ogunji F, Do K, Schulte K, Osowski L, McCormack J, Guerra R. High Prevalence of Celiac Sprue-Like HLA-DQ Genes and Enteropathy in Patients with the Microscopic Colitis Syndrome. Am J Gastroenterol 2000;95:1974-1982.

30. Fine KD, Ogunji F, Saloum YA, Beharry S, Crippin JS, Weinstein JS. Celiac Sprue: Another Autoimmune Syndrome Associated with Hepatitis C. Am J Gastroenterol 2001;96:138-145.

CHAPTERS

1. Fine KD, Krejs GJ, Fordtran JS. Diarrhea, Chapter 20 in Sleisenger MH, Fordtran JS. Gastrointestinal Disease. Pathophysiology, Diagnosis, Management, 4th Edition. Philadelphia, W. B. Saunders Co., 1989.

2. Fine KD, Krejs GJ, Fordtran JS. Diarrhea, Chapter 49 in Sleisenger MH, Fordtran JS. Gastrointestinal Disease. Pathophysiology, Diagnosis, Management, 5th Edition. Philadelphia, W.B. Saunders Co., 1993.

3. Fine KD, Schiller LR. Diarrhea. In: Consultations in Gastroenterology. Snape W Jr, ed. Philadelphia, W.B. Saunders Co. 1996.

4. Fine KD. Diarrhea, Chapter 10 in Feldman M, Scharschmidt BF, Sleisenger MH. Gastrointestinal Disease. 6th Edition. Philadelphia, W.B. Saunders Co., 1998.

ABSTRACTS

1. Fine KD, Santa Ana CA, Porter JL, Schiller LR, Fordtran JS. Evaluation of passive glucose absorption in the human jejunum in vivo. Gastroenterology 1991;100:A685(Abstr).

2. Brandabur JJ, Fine KD, Loeb PM, Miranda S, McCarthy JH. Pancreaticoduodenectomy - better results than expected. Gastroenterology 1991; 100:A352(Abstr).

3. Fine KD and Lee EL. An Open Label Trial of Bismuth Subsalicylate for the Treatment of Microscopic Colitis. Gastroentrology 1997; 112: A362 (Abstr).

4. Fine K, Ogunji F, Lee E, Lafon G, Tanzi M. Randomized, Double-Blind, Placebo-Controlled Trial of Bismuth Subsalicylate for Microscopic Colitis. 1999; 116: A880 (Abstr).

5. Fine K, Lafon G, Ogunji F, Do K, Schulte K, Osowski L, McCormack J, Guerra R. The Genetic and Histopathologic Relationship of Microscopic Colitis and Celiac Sprue or Refractory Sprue. 1999; 116: A879 (Abstr).

6. Fine KD, Ogunji FO, Saloum YA, Beharry SL, Crippin JS, Weinstein JW. Celiac Sprue: Another Autoimmune Syndrome Associated with Hepatitis C. Gastroenterology 2000;118:A697 (Abstr).

LETTERS IN RESPONSE TO JOURNAL CORRESPONDENCE

1. Fordtran JS, Fine KD. Sodium-glucose cotransport and epithelial permeability. Gastroenterology 1994;107:319-324.

2. Fine KD. Occult gastrointestinal bleeding in celiac sprue. N Engl J Med 1996;335:752-753.

3. Fine KD. Chronic diarrhea in treated celiacs: Are they really celiacs? Gastroenterology 1998;114:420-421.

4. Fine KD. Microscopic and collagenous colitis in treated celiac disease due to food allergy? Gastroenterology 1999;116:778.

5. Fine KD. Colonoscopy and Chronic Diarrhea. Gastrointestinal Endoscopy 2000;52:589-590.

EDITORIALS

1. Small Bowel Enteropathy in Patients with Microscopic Colitis: Is It Gluten-Sensitive? J Clin Gastroenterol 2001;32:193-195.

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I already knew that I was "allergic to barley & Oats" for 30 years, in addition to that I had been mostly wheat free for 10 years, thinking a wheat allergy. When I was researching Hemochromatosis, that runs in our family (we found a relative & my father's brother died of it), it linked me to celiac disease. I read about celiac disease & it was like a light bulb in my head, I could pick out all the people in my family that had it. I also remembered my grandmother that died of a stroke in 1956. I only saw her once but I remembered how everyone said that everything that she ate made her sick & that was back when they did not believe in "allergies". Also, her hair turned completely white at the age of 20.

My son was born with it & has a lot of problems. He has liver damage now at the age of 36 but refuses to listen to anything about a gluten-free diet. Men it seems do not like to be told that they cannot tolerate certain foods. Of course they are strong like Superman, so what is a little liver damage here or there. His son, my grandson has failure to thrive and other health problems, his blood test was positive but then for the pedi GI it was borderline, of course the kid was hardly eating anything, he is 10 & already had his tonsils out. We opted for no biopsy, my son would have refused anyway. The child faints when his blood is drawn etc., so I paid to have him tested thru Enterolab, he tested positive & has two DQ1 genes, I also have two DQ1 genes, which I wanted to know about. This child has a younger brother & sister & they both have health issues. I got them gluten-free for 6 months (cost me a fortune in money & time) but my son sabatoged the diet & made a deal with his wife that the kids not be gluten-free. They had a great improvement with the diet & this time last year when they were just going off the diet they were all very healthy.

Today the 8 year old girl is very sick with walking pneumonia, she also has a bad time with a mysterious itchy rash that the dermotologist cannot figure out what the problem is, she is also getting increasingly more & more food allergies (like I did), the 10 year old is having major allergy problems and although my d-i-l said that he does not have pink eye, one eye is totally red, he has severe constipation and I am sure he feels like *&%$, before I had him gluten-free last year he would just lay his head on the couch & be too sick to even go anywhere. The 6 year old boy is sick with allergies, a sore throat, cold sinus stuff & he ate too much cake & has had diarrhea for 2 days.

They go to the doctor all the time. But do you think that a doctor would ask about celiac or get them tested? NO, well it would not do any good because they do not have celiac according to the medical community because they have the DQ1 genes, whcih are the gluten intolerant ones. These kids are in very bad shape & I look for them to get worse. That is why I had my grandson tested thru Enterolab, BUT, when they saw that the results were ONLY gluten intolerance they were not concerned, because after all you know gluten intolerance is not going to damage their guts, or so the medical science says. I guess you get failure to thrive (from the womb forward) just because you do not eat enough. So while we wait for medical science to catch up my grandchildren will be some of the kids that get cancer and other auto immune illnesses, but there is no way to prove that is there? No science behind that.

I guess I will have to rake up some money somewhere to get my granddaughter the gene test thru Enterolab, because I only know one of the genes that my son has & one that my daughter in law has, they both have at least one DQ1 gene & I do not know what the other one is & my son for sure is not going to get a gene test.

AND that is why I use Enterolab, because they test for the DQ1 gene. Only two labs in the U.S.A. test for DQ1. MY MAIN disgust with the whole celiac thing is that the medical community does not recognize gluten intolerance as being a life threatening issue the same as celiac. It is my opinion that gluten intolerance is worse than celiac, for one thing we also get the neuro problems.

I guess I am fairly upset over the state of health of my grandchildren at the moment. But, I think Enterolab is a God send even if they do give you that junk about just being gluten intolerant - which you know so many people will take & run with it in the direction of not having to inconvenience their life just to provide their child a diet that they think is too much trouble, because they can plainly read that that child will not get gut damage & therefore will be okay, well it might make them a little sick...

So I suggest you check out what genes you have. If you have DQ1 it is a gamble, you could get cancer or another autoimmune illness before you get any symptoms. Also, good luck if you do not go that route & try to get tested thru a blood test - which no one knows which ones to run much less how to do them accurately, & a biopsy is just as chancey, just because it comes back negative does not mean that you do not have gut damage.

My motto is: you got the genes, you got symptoms, you got problems. Science or no science.

I see clouds in the sky I do not need science to prove to me that it could rain.

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Daffadilly,

I'm so sorry you're grandkids have to go through this. :(:angry:

From everything I've read Gluten Intolerance can be just as bad (or worse for some, like the DQ1) as diagnosed Celiac. I have one of each gene but since I tested through enterolab I call it gluten intolerance as I don't know which gene is active.....maybe both. My daughter has one of each and my oldest son has 2 celiac along with my husband. My infant son has not been tested yet. All of us but my husband have an active intolerance/sensitivity.

More and more light is starting to come out about this it seems. Have you read Dangerous Grains? It deals with the many different stages of gluten sensitivity. Hopefully Dr. Fine will get his stuff published real soon which would be more light and info that needs to be out there.

HUGS

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Thanks Andrea, yes I have read "dangerous grains" - I love that book & have given it to a couple of people & recommended it to a bunch of people.

I am really worried about my grandchildren, I just found out yesterday that they were all sick, but I know that my daugher in law will take good care of them, she knows in her heart that they need to be gluten-free. & when they are sick she cooks them rice for breakfast. ;)

My daughter in law with at least one DQ1 gene has to take meds for depression & has dyslexia, her dyslexia got a lot better when she was gluten-free the same time as the kids.

My son knows how sick I can be & when I am there he is very careful to make sure my food is safe. The amazing thing is that an orange chicken dish that he spent a year perfecting is gluten free & this was before we knew about celiac. He fries the chicken in a corn starch batter & get this, now he only uses the gluten-free soy sauce from Kroger, even when I am not there. He prefers the taste etc. Of course when I first took some for him to try so that I could eat the same meal, he acted all put out. Last time the daughter in law was here she took 12 large bottles home with her because they do not have a Kroger in their town.

anyway, you know sometimes I think ignorance really is bliss.

I just pray that by some miraculous miracle or quirk of fate that my son will come to his senses.

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Some, like me, will use Enterolab because doctors won't listen to us. I can't get a doctor to listen to me to save my life (literally!) But I can order an Enterolab test myself!

My GI patted me on the head and told me I have IBS.

My regular doctor told me celiac was for "skinny two year olds".

My gynecologist is on maternity leave.

I finally found a doctor willing to diagnose me on "positive dietary response". (I love him.)

But it took forever, and Enterolab puts control in the hands of patients, where it belongs.

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Andrea I think if you have one celiac gene they call it celiac disease, it only takes one gene. But with the added DQ1 gene I think that the chances that you actually have symptoms & are sick etc. is much greater, and those symptoms are worse than if you just have one gene. This is just my opinion & what I have observed among those of us that post to the boards that have DQ1. & about the only ones that know that we have DQ1 are the ones that test at Enterolab. Can you imagine what people like me are being told when they get testing thru their GI docs & they do not have the DQ2 or DQ8 genes & negative biopsy? It is just almost a death sentence for those people if they cannot figure it out.

I spent most of my life on antibiotics from constant bladder infections & then when they would do a culture, I had no infection. My insides were sore, I was peeing straight puss, & I was doubled over in pain, but nothing would show up on a culture, the doctor would scratch his head & say well, it must have cleared up...

At one time they wanted to replace my urethers with plastic tubes, but I refused. A doctor friend later told me that if I had done that, I would be dead by now. An acquaintance of mine I am sure has celaic as does her son & she has already let them put plastic tubes in her. I just am not that close to them because she will not check into celiac & refuses to believe that wheat could make her sick & actually laughs at me for not eating wheat, so I just move on, I really have no time for her.

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Daffadilly,

I really don't understand why people think gluten free is so hard. Maybe we didn't have as hard of a time because we were used to restricting our diet and reading labels. I don't remember if I posted that we used to be vegan. Went off that diet due to intolerance to gluten and soy and allergies to some beans. I've tested another that didn't go over well.

I don't have the DQ1 (see sig). No one in our immediate family does. Is your grandchildrens doctor willing to look at a positive dietary response for not eating gluten?

I'm here if you ever need to vent or talk......haven't been through it but have good ears (not literally....my hearing is not great :P ). Feel free to pm me if you ever need too.

Shalia,

That's great you finally found a doctor willing to listen.

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Shalia,

That's great you finally found a doctor willing to listen.

I nearly died when I talked to him, honestly. He listened, he said "that makes perfect sense to me, if the stuff is poison to you, don't eat it ever again. If you need a doctor to tell you to make you stay away from poison, fine. Never ever eat gluten again. You are either severely gluten intolerant or celiac. Now, do you feel better?"

I about cried. Yes, I felt better, I finally felt VALIDATED. And like I wasn't crazy.

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I used Enterolab because my 8 year old daughter had constant tummy aches. Beginning when I introduced wheat, she had mild diarreah which eventually went away. My grandmother had biopsy-proven celiac so I was aware of it and had her blood tested by several doctors over the years. They were always negative. She said she felt better eating gluten free but we didn't make her be strict since she supposedly didn't have celiac disease. I had read enough to know the blood tests weren't always accurate and couldn't get it out of my head that she might have celiac so when I heard about Enterolab, I had her tested there to hopefully eliminate gluten as the cause of her problems. It was positive and she has willingly been on a strict gluten free diet since.

Since she tested positive, I tested myself and her sister. We were both positive even though we had no abdominal symptoms. Both of us feel much better mentally than we ever did. I don't know whether any of us have celiac disease but we are all definitely gluten intolerant.

I like Enterolab because I can order whatever test I want and I get the results. I am interested in seeing his work published but whatever happens, I will continue to be gluten free.

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I already knew that I was "allergic to barley & Oats" for 30 years, in addition to that I had been mostly wheat free for 10 years, thinking a wheat allergy. When I was researching Hemochromatosis, that runs in our family (we found a relative & my father's brother died of it), it linked me to celiac disease. I read about celiac disease & it was like a light bulb in my head, I could pick out all the people in my family that had it. I also remembered my grandmother that died of a stroke in 1956. I only saw her once but I remembered how everyone said that everything that she ate made her sick & that was back when they did not believe in "allergies". Also, her hair turned completely white at the age of 20.

My son was born with it & has a lot of problems. He has liver damage now at the age of 36 but refuses to listen to anything about a gluten-free diet. Men it seems do not like to be told that they cannot tolerate certain foods. Of course they are strong like Superman, so what is a little liver damage here or there. His son, my grandson has failure to thrive and other health problems, his blood test was positive but then for the pedi GI it was borderline, of course the kid was hardly eating anything, he is 10 & already had his tonsils out. We opted for no biopsy, my son would have refused anyway. The child faints when his blood is drawn etc., so I paid to have him tested thru Enterolab, he tested positive & has two DQ1 genes, I also have two DQ1 genes, which I wanted to know about. This child has a younger brother & sister & they both have health issues. I got them gluten-free for 6 months (cost me a fortune in money & time) but my son sabatoged the diet & made a deal with his wife that the kids not be gluten-free. They had a great improvement with the diet & this time last year when they were just going off the diet they were all very healthy.

Today the 8 year old girl is very sick with walking pneumonia, she also has a bad time with a mysterious itchy rash that the dermotologist cannot figure out what the problem is, she is also getting increasingly more & more food allergies (like I did), the 10 year old is having major allergy problems and although my d-i-l said that he does not have pink eye, one eye is totally red, he has severe constipation and I am sure he feels like *&%$, before I had him gluten-free last year he would just lay his head on the couch & be too sick to even go anywhere. The 6 year old boy is sick with allergies, a sore throat, cold sinus stuff & he ate too much cake & has had diarrhea for 2 days.

They go to the doctor all the time. But do you think that a doctor would ask about celiac or get them tested? NO, well it would not do any good because they do not have celiac according to the medical community because they have the DQ1 genes, whcih are the gluten intolerant ones. These kids are in very bad shape & I look for them to get worse. That is why I had my grandson tested thru Enterolab, BUT, when they saw that the results were ONLY gluten intolerance they were not concerned, because after all you know gluten intolerance is not going to damage their guts, or so the medical science says. I guess you get failure to thrive (from the womb forward) just because you do not eat enough. So while we wait for medical science to catch up my grandchildren will be some of the kids that get cancer and other auto immune illnesses, but there is no way to prove that is there? No science behind that.

I guess I will have to rake up some money somewhere to get my granddaughter the gene test thru Enterolab, because I only know one of the genes that my son has & one that my daughter in law has, they both have at least one DQ1 gene & I do not know what the other one is & my son for sure is not going to get a gene test.

AND that is why I use Enterolab, because they test for the DQ1 gene. Only two labs in the U.S.A. test for DQ1. MY MAIN disgust with the whole celiac thing is that the medical community does not recognize gluten intolerance as being a life threatening issue the same as celiac. It is my opinion that gluten intolerance is worse than celiac, for one thing we also get the neuro problems.

I guess I am fairly upset over the state of health of my grandchildren at the moment. But, I think Enterolab is a God send even if they do give you that junk about just being gluten intolerant - which you know so many people will take & run with it in the direction of not having to inconvenience their life just to provide their child a diet that they think is too much trouble, because they can plainly read that that child will not get gut damage & therefore will be okay, well it might make them a little sick...

So I suggest you check out what genes you have. If you have DQ1 it is a gamble, you could get cancer or another autoimmune illness before you get any symptoms. Also, good luck if you do not go that route & try to get tested thru a blood test - which no one knows which ones to run much less how to do them accurately, & a biopsy is just as chancey, just because it comes back negative does not mean that you do not have gut damage.

My motto is: you got the genes, you got symptoms, you got problems. Science or no science.

I see clouds in the sky I do not need science to prove to me that it could rain.

This makes me so sad. I really hope your son will see the light, for his sake as well as your grandchildrens. Celiac related liver disease killed my twin at a very young age. It is not a 'nice' way to go. How is he going to feel when his son is grown and is stunted in height and comes to him saying that they found he has celiac and that is the reason he is only 5 ft. tall and he has to admit to that young man that they knew he had it but chose to ignore it for convience sake. How is he going to feel when he takes that young man out to look for his first car and one of the things they have to look for is whether he can reach the gas pedal not how much horsepower it has? How will he feel when that young man gets in an accident and is killed by the airbag because his height forces him to sit to close to the steering wheel? We thanked God my DS's never deployed for that reason in a serious accident. How is he going to feel when his son tells him he has accepted that he will never marry cause the girls never want to date a guy shorter than them? I know he is your son and thus I am hesitant to say this but his ignoring the gluten issue will effect these kids far into adulthood if the depression and other features don't kill them first. Is he ready to live with that guilt?

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my son yes, but when they are in denial they are into it. They would rather blame me - the mother as being all kooky etc. & then the docotrs back them up, so you know it is a losing battle. I do have a glimmer of hope that he will come around. He is super smart so how long can he keep his head in the sand?

It is just so hard for some people to do anything that a doctor does not tell you. You take a kid to the doctor & he says walking pneumonia, gives you meds, breathing treatments at home, but hey he never says anything about the kids diet, or ummm what about that rash she has? & ummm all the other kids are also sick? & ummm each kid has different food allergies?

But of course no one says the grandmother has celiac, because well the grandmother does not have celiac she has gluten intolerance with two DQ1 genes.

I tried to convince them that eating gluten-free would be easier in the long run that dealing with the increasing food allergies of my son & the three kids, but that did not work.

Thank you for your post. with the grandkids I have done about all the pushing that I can do, so now all I can do is worry & wait.

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Matilda,

I would like to respond to a couple of things, first of all according to the study fecal anti-gliadin/transglutaminase testing has a sensitivity in the 90s and a specificity of something like 50%, but the problem is high sensitivity in a test is useless without high specificty. It would be a completely useless screening test, despite what Dr. Fine says.

Specificity of 58% in a test is no better than tossing up a coin in predicting who has celiac/gluten sensitivty (tossing a coin has a specificity of 50%). In other words you could instead of doing this test just toss a coin and save $100.

I'd like to see some research published in a medical/scientific journal backing the usefulness of fecal antigliadin/transglutaminase testing. Preferably by a doctor other than DR. Fine, because he has a conflict of interest and his study could be biased. So far I've seen research discounting the fecal testing and none supporting it.

Third, you mentioned that trans-glutaminase testing may not be as sensitive as previously thought. That's why anti-transglutaminase testing is meant to be combined with anti-endomysial and anti-gliadin antibodies. Combining anti-endomysial with transglutaminase has a sensitivity and specificty for celiac disease/gluten sensitivity of close to 100%, with or without villous atrophy. In other words it will detect all cases celiac disease/gluten sensitivity and exclude all patients who do not have it. Anti-gliadin antibodies can also be used to screen for gluten sensitivity if they're raised significantly.

My original point was, why do a fecal test when the blood test will detect close to 100% of people with celiac/gluten sensitivity and is a lot less expensive?

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Hi IMResident~

Two studies supporting fecal antibody testing can be found here:

The antibody screening tests have been reduced to a single anti-tTG test in most cases, even in some of the major celiac centers... and the antigliadin antibodies are no longer routinely recommended. I completely disagree with that trend, and see it as a move backward in diagnostics. Cost containment (unfortunately) is a real issue, as are 'unnecessary' biopsies.

Also, have you looked at the any studies regarding the reliability of blood tests and biopsy? For example, some studies have shown up to 20% of biopsy proven celiacs may be seronegative. There are also false positives and false negatives in all directions. In the end, the best test of all really may be one's response to the diet.

Tests are continuously evolving, and a broader concept of gluten sensitivity is emerging.

Have you checked the reports of out how other autoimmune disease sometimes improves on a gluten free diet, with or without celiac disease? Check out the autoimmune pages on my website, too...and don't forget psoriasis!

Having said all that, I think it is a good idea for most people to begin with the celiac blood tests...a full panel of tests including the antigladian IgA, IgG. BUT... if the tests are negative, and symptoms persist... I think the stool test and/or a dietary trial are useful. Afterall, nobody needs a doctors permission or prescription to make dietary changes. I've met literally hundreds of people over the past six years since I've entered the world of gluten sensitivity who have had positive changes with a gluten free diet, outside of celiac disease. My family included.

Personally, I believe it is worth reaching for the gold, but if one fails the tests but has symptoms and family history suggesting gluten sensitivity... a dietary trial should follow. JMO.

Hope you find something of interest in the links I left~

Cara

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BUT... if the tests are negative, and symptoms persist... I think the stool test and/or a dietary trial are useful. Afterall, nobody needs a doctors permission or prescription to make dietary changes. I've met literally hundreds of people over the past six years since I've entered the world of gluten sensitivity who have had positive changes with a gluten free diet, outside of celiac disease. My family included.

I agree with this 100% except for the fecal tests.

I read the studies you mentioned. The first study supports the theoritical role for fecal secretory IgA antigliadin testing but contradicts solely antigliadin IgA testing (because of overlap between those with celiac and controls hence low specificity).

The second study supports the use of the antiendomysial test but doesn't support the use of antigliadin IgA testing. This study only say that fecal antigliadin and transglutaminase levels are higher in celiac patients than in controls but doesn't mention any cutoff points for testing. The only study I've seen so far that address the sensitivity and specificity of fecal testing with the suggested cutoff points found that fecal testing was inadaquate.

The most comprehensive studies for serum antigliadin/antiendomysial/transglutaminase studies show close to 100% detecion of patients with any form of celiac/gluten sensitivity especially when all 3 antibodies are tested for. Regardless of whether there's villous flattening or not.

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I was gluten light for 1 1/2 months due to allergy testing, before I decided to go through enterolab. I believe I would have tested negative through conventional methods at that time and am glad that enterolab offers their services.

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I was losing a pound per week and presented classic celiac symptoms. I have two DQ1 genes. I tested negative in the blood test, but my doc only did the IgA. Maybe it's not a study, but the blood test and biopsy failed me. As soon as I went on the gluten-free diet, I stopped dropping weight and eventually started gaining some of it back. If the blood tests are always accurate, why did I get better going gluten-free? There are many others here just like me!

Enterolab was merely a confirmation of what I already knew.

IMResident, I'm just curious, have you already made up your mind that Enterolab is invalid and are trying to prove to us that it is, or are you genuinly collecting information on it?

I am assuming by your screen name that you are a doctor. I hope one thing you learn from this forum is that the current medical establishment is letting a lot of people down. I've been sick my whole life. My mom was told that I was fine, so she thought I was just a complainer and would tell people I had a low threshold of pain. I was 4'11" inches when I started high school, but ended up being 5'8" -- was this the disease going somewhat silent during the teenage years? I didn't get sick again till I was about 19. I went to the emergency room several times as an adult, got an IV, then was sent home and no questions were asked about what could have caused the problem to begin with, it was like it was normal to need to go get rehydrated once in a while (when no diarrhea nor vomiting was present). I would get what we thought must be food poisoning very frequently, but no one else would be sick (diarrhea, never vomiting). Several times throughout the years I went to the doc to try to figure out what was wrong with me -- nothing was ever found and until I was sick enough to be losing a pound a week for four months, no one cared.

So, even though it may seem to you that many of us are blindly trusting Enterolab (even though Dr. Fine's CV is quite impressive), it may be that some of us have become desperate enough to be open to something not proven yet. In the end, I believe Enterolab will be proven to be an accurate testing. It sure seems that way from the information on this thread.

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I agree with this 100% except for the fecal tests.

I

Well, you would hold a minority opinion among physicians. The majority of doctors would not recommend a gluten free diet trial in the absence of biopsy proven celiac disease. My oldest daughter has opted against a gluten free diet because the GI made it crystal clear to her that it was not necessary, and what fifteen year old (now twenty) wants to give up pizza and donuts if it isn't necessary? Thankfully, she is somewhat compliant with vitamins, which do help with many of her symptoms resulting from nutritional deficiency. I have not lost hope that she may one day be gluten free...probably when she has her first sick child.

The GI also made it crystal clear a gluten free diet wasn't necessary for my youngest daughter, but I thought it was worth a try... and we've never looked back. She had neurologic, digestive and skin symptoms that all resolved on a gluten free diet. We do not have the 'celiac' genes (but DQ1) , and she is not IgE 'allergic' to wheat.

The simple truths are:

Most doctors only care about celiac disease.

Most doctors only order a single antibody test as a screen, not the entire panel.

If the antigliadin antibody tests are run, most doctors disregard an isolated antigliadin IgG antibody test as inconsequential.

Most doctors do not recommend a gluten free diet trial in the absence of biopsy proven celiac disease, because they underestimate the significance of gluten sensitivity.

Many, many, many patients, with serious symptoms, continue to suffer because of the above.

Considering that there is no downside to a gluten free diet, other than a bit of inconvenience, I wish that more doctors would begin to recommend dietary trials to symptomatic patients who have negative tests.

If getting a positive stool test result provides the nudge some people need to proceed to a dietary trial, I support it. I cannot validate the stool test any better than the next guy, but my personal experience tells me the blood tests are not perfect by a longshot in identifying people who will benefit from the diet. I've known many people who went gluten free thanks to Enterolab tests after being dismissed by their GI's or other doctors...without any solutions for their symptoms.

Some of us are just misfits... I guess. I had three years of neurological problems and the beginnings of spinal cord damage...caused by B12 deficiency, with a B12 level in low NORMAL range. It took three years and eight specialists before one thought to even check it, and thankfully it was a savvy neurologist who realized a low normal level could cause problems. My family was plagued with medical problems for more than a decade, and it wasn't until I hit the Internet and began networking the medical underground...places like this..that I really found answers to all of it.

Diagnostic tests are not perfect. They are good, but not that good. When the treatment is safe, like dietary changes or nutritional therapy, why on earth don't our doctors err on the side of treatment when symptoms are suggestive.. including atypical symptoms? Why not tell patients the jury is still out, but a gluten free diet may help...and then let the patient decide whether they want to take a gamble on better health? This doesn't happen very often. Yet, they seem to have no trouble prescribing medications in hit or miss fashion...some of which are questionable in regard to safety and efficacy.

I probably won't continue to debate the sensitivity or specificity of diagnostic tests here because for one~ we'd have to agree on the criteria used to determine those factors in the first place.

I just love the Internet where patients can interact with one another, and we can learn from each other based on our real life experience. Mothers have know for eternity that letting our kids get chilled led to them getting sick, but it took all this time for someone to actually PROVE it...lol.

http://www.cnn.com/2005/HEALTH/11/14/cold.chill/index.html

Cara

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