Wary...

[CarrieinIowa]

I've been reading this list for awhile but have not posted yet. I was very interested to read this thread about Enterolab. Almost my entire family has been tested through Enterolab because of my search to feel better. My grandma was diagnosed with Celiac when she was in her 70's after about 50 years of intestinal problems. She died of non-hodgkins lymphoma a couple of years ago, in her mid-eighties. I don't believe she ever followed the diet the way she should have. I've had all of the conventional testing with negative results, some twice. I got the Enterolab test this summer as did my dad (because he has psoriasis) and I tested positive for IgA and ttg and casein and malabsorption. My dad did also. I have one celiac gene and one gluten sensitive gene and he has two celiac genes. After I found I had two genes, meaning I got one from each parent, my mom was tested. She has one gluten-sensitive gene and one celiac. One brother has two celiac genes, no malabsorption but 20 years of depression which may be related to gluten. We all tested positive for IgA. My other brother didn't have the gene test, just the stool and he is positive for gluten sensitivity and was shockingly high on malabsorption--1500. Any suggestions on what he should look into other the gluten sensitivity as to why he is malabsorbing so poorly?

I'm planning on doing a gene test on my kids but haven't yet because of $$. I think I am going to have them go ahead and go gluten free---they are just not feeling well far too often. Also, my house needs to be totally gluten free since I am turning out to be very sensitive to gluten contamination. I also want my husband to be tested since he has other autoimmune disorders that seem minor but maybe they are just symptomatic of gluten sensitivities---a skin disorder and canker sores.

I took my Enterolab results to my general Dr and he admitted he knew nothing about celiac disease (at least he didn't act like he knows everything) so he referred me to a GI. I ended up going to Mayo because I had already been a patient there and I love that you can get everything done quickly with quick results. Unfortunately, they didn't run the complete blood panel (only IgA and IgE) and only took 4 samples during the endoscopy. It was a very costly mistake for me---my insurance paid $500 out of $5000. Just think, I could've had my entire family tested through Enterolab and bought LOTS of healthy foods with that money. I haven't complained to Mayo yet but I intend to. Oh, and my doctor up there (with my Enterolab results in hand, mind you) said I had no problem with gluten and I could continue to eat it. I can't tell you how frustrated I am with doctors right now.

Unfortunately, the gluten free diet hasn't taken care of all of my problems but has made me feel MUCH, MUCH better. I still have upper right quadrant abdominal pain (constant for over a year except for the times I've taken low-dose anti-depressants that mask it for awhile) and I really think it is unrelated to gluten. Either that or it is going to take more than two months being gluten and casein free to resolve itself. My GP has no other ideas for tests or specialist consults for me--just a prescription for an anti-seizure medication for the chronic pain. I researched it and decided it wasn't something I want to put into my body. I am looking into a naturopathic or holistic doctor to help with that concern. I feel like I've exhausted all of the 'normal' routes for medical diagnosis.

All of that to say, I think Dr Fine is a Godsend and I hope in the very near future that he will publish so this testing can be more readily accepted and available. Unfortunately, that will probably make the cost for this testing rise. I guess I'm getting a little cynical about the medical community. In all of my testing, the best $ I spent was on Enterolab and probably the least expensive--my husband is self employed so we don't have the greatest insurance.

Thanks for 'listening',

Carrie

in Iowa

Neg biopsy 10/04 AND 9/05

Neg bloodwork 9/05

Postive stool IgA and ttG, casein and malabsorption through Enterolab 7/05

[ravenwoodglass]

Unfortunately, the gluten free diet hasn't taken care of all of my problems but has made me feel MUCH, MUCH better.  I still have upper right quadrant abdominal pain (constant for over a year except for the times I've taken low-dose anti-depressants that mask it for awhile) and I really think it is unrelated to gluten.  Either that or it is going to take more than two months being gluten and casein free to resolve itself.  My GP has no other ideas for tests or specialist consults for me--just a prescription for an anti-seizure medication for the chronic pain.  I researched it and decided it wasn't something I want to put into my body.  I am looking into a naturopathic or holistic doctor to help with that concern.  I feel like I've exhausted all of the 'normal' routes for medical diagnosis. 

Thanks for 'listening',

Carrie

in Iowa

Neg biopsy 10/04 AND 9/05

Neg bloodwork 9/05

Postive stool IgA and ttG, casein and malabsorption through Enterolab 7/05

<{POST_SNAPBACK}>

When I was dealing with chronic pain I found an acupuncturist to be VERY helpful. After a session I had relief from symptoms (pain) for a few days, and I was still undiagnosed at that time so it seemed something of a miracle. It didn't help the tummy problems but definately helped with the pain. It took a good 3 to 4 months (for some it takes longer) before all pain resolved gluten-free, I was just happy the D ended and was shocked when everything else went away, arthritis, fibro, gerd, gallbaldder, migraines and ataxia. Try an acupuncturist for the pain, it may help and it won't hurt. Our insurance covered much of the cost.

[kelliac]

How many loved ones have to get sick and die before doctors listen? Your story is unfortunately a very common one here where I live. Are we getting sicker because celiacs are marrying gluten sensitives and vice versa? Has this thing been in the making for generations?

Some of the things that have worked for me and my friends and family are: massage, craniosacral massage, reiki. Going gluten free is the first and most important step. Relaxing, taking time out and clearing our mind is probably right up there with diet. Some people don't believe in those types of therapies but what would it hurt?

Unfortunately your insurance is like my insurance and they don't pay for anything. The massage treatment once a week for a couple of weeks gets you started and then go once a month if you can afford it. Good luck.

[Rachel--24]

My other brother didn't have the gene test, just the stool and he is positive for gluten sensitivity and was shockingly high on malabsorption--1500.  Any suggestions on what he should look into other the gluten sensitivity as to why he is malabsorbing so poorly?

<{POST_SNAPBACK}>

Does your brother have obvious weight loss? My malabsorption was high at 912. I havent seen anyone post anything even close to that until now. I dont have a celiac gene. I'm DQ1 and DQ3. I didnt have a biopsy until 6 months gluten-free...so naturally it didnt answer any questions. I think in my case laeky gut is a big factor.

[danikali]

I have not yet been tested by enterolab (though I should get the tests tonight through mail) and I have a GI appt. next week. But I just want to say I AM SOOOOOOO HAPPY I FOUND THIS SITE, FINALLY, I AM FINDING PEOPLE WHO ARE GOING, OR WENT, THROUGH EVERYTHING THAT I HAVE FOR PRACTICALLY MY WHOLE LIFE! From panic attacks to food intolerences to indigestion problems to bone problems and feeling generally crappy all around!

I am also glad to see all of this about Dr. Fine because I was worried about those tests and wondered if that was "real" or what, even though I feel like it's my last resort and I am so desperate these days and will do anything to find an incling to my problems.

It's funny though how we ALL KNOW, AND KNEW (except the lucky few who actually HAD good doctors) that it had something to do with gluten, and even when a lot of you get the tests back from Dr. Fine and they are positive, and even though you've had bad experiences with doctors, and good outcomes with the gluten-free diet, you still need "proof."

Not that I am any better because for the whole two days I was completely gluten free, I FELT AMAZING!!!!!!!!! Energy, no pains, and HAPPY! But here I am, eating gluten again to get my "positive test results." It's just interesting.

[CarrieinIowa]

Does your brother have obvious weight loss? My malabsorption was high at 912. I havent seen anyone post anything even close to that until now. I dont have a celiac gene. I'm DQ1 and DQ3. I didnt have a biopsy until 6 months gluten-free...so naturally it didnt answer any questions. I think in my case laeky gut is a big factor.

<{POST_SNAPBACK}>

My brother doesn't have any obvious weight loss and feels perfectly fine. He had the test because I have been pushing everyone in my immediate family to be tested. He knew he had some sort of issue--probably with gluten because of symptoms such as excessive and foul gas. Leaky gut makes sense. I need to talk to him and see how he has followed up his results.

Carrie

Iowa

[CarrieinIowa]

When I was dealing with chronic pain I found an acupuncturist to be VERY helpful. After a session I had relief from symptoms (pain)  for a few days, and I was still undiagnosed at that time so it seemed something of a miracle. It didn't help the tummy problems but definately helped with the pain.  It took a good 3 to 4 months (for some it takes longer) before all pain resolved gluten-free, I was just happy the D ended and was shocked when everything else went away, arthritis, fibro, gerd, gallbaldder, migraines and ataxia.  Try an acupuncturist for the pain, it may help and it won't hurt. Our insurance covered much of the cost.

<{POST_SNAPBACK}>

I've had a good accupuncturist recommended to me. I need to go and check him out. I will be getting new insurance through my husbands new job on Dec 1st so I'm holding off on any visits for a couple of weeks. I hope this new insurance will cover more than my current one. I will check them out in December--an early Christmas present to me! I'm hoping to get some pain relief soon. Some days aren't too bad but it is chronic and that is wearing. I've had a couple of bad days recently and I'm hoping it was a fluke.

Carrie

Iowa

[Elsbels]

I do know someone who tested negative for celiac disease. Her daughter has it, she does not.

E

[gfp]

My questionaire stated that yes, I had been tested via bloodwork and those results were negative. However my Enterolab results were positive.

I would hesitate a guess that this will be used in his peer reviewed paper to show the effectiveness of the enterolab testing vs other methods.

The problem with clinical trials is they take so long... so if the entrolab catches and early diagnosis which is IgA and IgG negative then the test becomes validated when this person's celiac disease continues to develop and they are serum positive.

However I know lots of people who have met him at conferences etc. so he isn't exactly hiding but if you want to meet him you will need to make an effort.

[Warrior Woman]

I dont understand the NEED to meet with the doctor that runs the lab. I have never met any doctor in charge of the labs. I dont see how this makes a difference. The doctor's office has a contract with a lab and that is where it goes. Or you go to one of the lab's offices and they do the tests themselves. I just dont see the need to meet the doctor.

And so what if he sings. Does that make him any less of a doctor? It seems odd that people tend to see some people in certain job professions as perfect people, or lead lives that are pure and virutous. I am friends with a neurosurgeon and he is a regular person that happens to operate on brains. Teachers are another occupation that people tend to think live perfect 'teacherly' lives. I know a few and they are regular people too- just like anyone else.

just my 2 cents

Lorraine

[Nancym]

Dr. Fine probably pwns most other doctors out there, just look at his CV

Open Original Shared Link

Dr. Kenneth Fine

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.

Well in Australia my blood tests were considered enough for my doctor to tell me to stop eating gluten. Why is America being so anal about having the endoscopy???

LOL! I love that probably unintended pun.