A young girl's story about getting her ME diagnosed

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Zizzle
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A young girl's story about getting her ME diagnosed

Post by Zizzle »

I came across the blog of a young woman with Crohn's disease, and her horrible battle since she was 10 months old. She posted the story of another young woman who went to COUNTLESS doctors over YEARS to get a diagnosis of Mastocytic Enterocolitis. Her story is truly gut wrenching -- you want to reach out and strangle every one of her doctors!! Sadly, it mirrors some of the journeys people with MC have had. Unlucky for her, she needed a special stain in addition to the colonoscopy biopsies to be diagnosed. I wonder how many healthcare dollars are WASTED trying to find the traditional IBDs by clueless doctors? :roll: And antidepressants for IBS-D?!? :shock: I can't take it. Something has to change. How can doctors get away with being this clueless for so long?!?

Of course even her miracle doctor said this about ME:
It is an Inflammatory Bowel Disease. She called it ‘the other IBD.’
MC gets no respect!! :wink:

Anyway, enjoy...

http://agirlwithguts.tumblr.com/post/19 ... llys-story
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tex
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Post by tex »

Zizzle wrote:How can doctors get away with being this clueless for so long?!?


Simple -- they can afford to be clueless because they get paid regardless of whether or not they actually help any patients. Some take their responsibilities seriously, and obviously many of them don't.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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mbeezie
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Post by mbeezie »

Poor thing! Unfortunately I think she is still not being adequately treated. All of her contrast dye issues are indicative of some systemic mast cell issues. I posted a message encouraging her to see a mast cell specialist.

Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
brandy
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Post by brandy »

Hi Zizzle,

Hope the family is doing better!

Dr. Glover is my GI doc #2. She is a really smart cookie. She definitely gets the gluten link. She sent me two emails about trying GF for 8 weeks. She sent one email after my gene results came in and one email after the Shands lab retested my biopsy slide. ( I actually went GF months before after finding this forum.) I've only seen her once but I had read the Cordain book prior to my Dr visit and was impressed with the time spent on autoimmune history of my family and myself. GI doc #1 just blew it off when I mentioned Mom is celiac like it was irrelevant. I was in pretty good shape at the time of my appmt. I was 3 weeks off of Entocort and doing pretty well.

Dr. Glover is also heavily into mast cell research. She did not like my pathology report as it did not give a mast cell count and retested my biopsy slide. Mast cells don't appear to be one of my situations.

I'm not all that crazy about Shands. I feel for the folks who drive 4-5 hours for a Dr visit which is a lot of the Shands patients. I live local and could even ride my bike to Shands but you still have to take a day off of work even for a routine appmt due to the delays. The Shands Docs are frequently the Docs of last resort for patients that are struggling with health situations from SE Alabama, S Georgia and the state of FL.

Brandy

Sarah C. Glover, DO
Assistant Professor of Medicine
Division of Gastroenterology, Hepatology, and Nutrition
Southeastern Center for Inflammatory Bowel Diseases/Affiliate Faculty Biomedical Engineering

PO Box 100214
Gainesville, FL 32610-0214

Email: sarah.glover@medicine.ufl.edu

TEL: (352) 273-9400
FAX: (352) 392-3618

Dr. Glover grew up in the Pacific Northwest. As an undergraduate, she attended Seattle Pacific University where she completed a chemistry degree. During that time, she began her research career by working in the laboratory of Dr. Michael Gelb at the University of Washington. She attended medical school at Chicago College of Osteopathic Medicine, which is now part of Midwestern University where she was granted a Doctorate of Osteopathic Medicine in 1998. Dr. Glover completed her residency and fellowship training at the University of Illinois at Chicago. She was an assistant professor of medicine and bioengineering at UIC until 2010. She joined the faculty at UF in early 2011. Dr. Glover is an NIH funded investigator with clinic interests in allergic GI disorders and IBD.

Degree/Program Institution Field/Specialty
DO Midwestern University, CCOM Medicine
Residency University of Illinois at Chicago Internal Medicine
Fellowship University of Illinois at Chicago Gastroenterology

Academic Interests
Dr. Glover’s clinical practice is focused on inflammatory and allergic gastrointestinal disorders. In particular, she is interested in the role of food and environmental allergies in chronic abdominal pain and inflammatory bowel disease. She currently has one individual grant application and several collaborative grant applications that are pending to address these topics Dr. Glover’s research focuses on improving the understanding of how specific mechanical and luminal factors in the tumor microenvironment of colon cancer increase tumor cell invasion and metastasis. Currently, her NIH funded research is focused on how the mechanical features underlying malignant cells at the luminal interface influence tumor spread. The theory behind this project is that under normal circumstances cells in the colon, including colonic stem cells, follow a strict mechanical axis wherein they migrate from the bottom of the crypt to the top. In the setting of cancer, the axis is distorted and cells are permitted to move in both a two- and three-dimensional fashion. As such, significant changes occur in the topography underlying cells on the luminal side of a tumor. The data, thus far, suggests that these changes significantly alter mechanosensation and motility of cells and creates a pro-invasive cellular phenotype. Overall, Dr. Glover’s clinical and research interests are focused on understanding the role of gut microenvironment in both non-neoplastic and neoplastic gastrointestinal disorders.

Clinical Interests
Inflammatory Bowel Disease Autoimmune Gastrointestinal Disorders Eosinophilic Esophagitis Eosinophilic Gastroenteritis Eosinophilic Colitis Mast Cell Activation Syndrome Mastocytic Enterocolitis Food and Environmental Allergy and GI disorders

Publications
1.Glover, S.; de Carvalho, MS; Bayburt, T; Jonas, M.; Gelb, MH; and Others Translocation of the kDa Phospholipase A2 From Cytosol to the Nuclear Envelope in Rat Basophilic Leukemia Cells stimulated with Calcium lonophore or IgG Antigen. J. Biol. Chem.1995, June 23;270(25): 15359‑67.
2.Glover S. Tretiakova MS, Carroll RE, Benya RV. Gastrin-releasing peptide receptor gene mutations in human colon cancer. Mol Carcinog. 2003, 37:5-15.
3.Matkowskyj, KA, Keller, K Glover, S Kornberg, L Tran Son Tay, R Benya, RV Expression of GRP and its receptor in well differentiated colon cancer cells correlates with the presence of focal adhesion kinase phosphorylated at tyrosine 397 and 407. J. Histochem. Cytochem. 2003, 51:1041-1048.
4.Matkowskyj KA, Glover S, Benya RV. Quantitative immunohistochemistry (Q-IHC): A novel algorithm for measuring cumulative signal strength and predicting receptor number. Microscopy & Analysis, 2004; 18: (issue #66) 5-6.
5.S Glover, M Delaney, C Dematte, M. Frasco, L Kornberg, R Tran-Son-Tay, RV Benya. Phosphorylation of Tyrosine 397 Critically Mediates Gastrin-Releasing Peptide’s Morphogenic Properties. J. Cell. Phys.. 2004,199:77-88.
6.Matusiak, D. Glover, S. Nathaniel, R. Matkowskyj, K.A. Benya, R.V. Neuromedin B and Its Receptor are Mitogens in both Normal and Malignant Epithelial Cells Lining the Colon. AJP-Gastro. 2005, 288(4): G718-28.
7.Glover, S. Nathaniel,, R. Shakir, L. Perrault, C. Anderson, R.K. Tran-Son-Tay,R. and Benya, R. V. Transient up-regulation of GRP and its receptor critically regulates Caco-2 cell motility during remodeling. AJP-Gastro. 2005, 288(6): G1274-82.
8.Anderson, RA. Shakir, L. Anderson, E. Glover S, Image Analysis of Extracellular Matrix Topography of Colon Cancer Cells. Microscopy & Analysis, July 2006: 5-7
9.Vishnubhotla, R. and Sun, S. Huq, J. Bulic, M. Ramesh, A. Guzamn, G, Cho, M. Glover, S.C. ROCK-II Mediates Colon Cancer Invasion Via Regulation of MMP-2 and 13 at the Site of Invadopodia As Revealed By Multiphoton Imaging. Lab Invest. 7(11):1149-58.
10.Rapier,R. Huq,J. Vishnubhotla,R. Bulic,M. Perrault,CM .Metlushko,V. Cho,M. Tran Son Tay,R. Glover, SC. The Extracellular Matrix Microtopography Drives Critical Changes in Cellular Motility and Rho A Activity in Colon Cancer Cells. Cancer Cell International. 2010 28;10:24..
Abstracts:

1.Ece. A. Mutlu, Sarah C. Glover, Patrick M. Gillevet, Xavier Llor, Carline R. Quander, Masoumeh Sikaroodi , Phillip Engen, Samuel Bracamonte, Ali Keshavarzian. Bacterial microbiota fingerprints are altered in colon cancer. Gastroenterology 2008: 134(4): A296.
2.Sarah C. Glover, Marinka Bulic, Ramana V. Vishnubhotla, V. K. Viswanathan1, Michael Cho, Jennifer L. Roxas, Rebecca Mecum, Igor Titushkin A Loss of Symbiosis with Certain Strains of Commensal E. coli Leads to Increased Colon Cancer Invasion in an In Vitro Colon Cancer Model via activation of Rac and MMP-1. Gastroenterology 2008: 134 (4): A306.
3.Sarah C. Glover, Ravi J. Patel, Grace Guzman, Elizabeth L. Wiley, Ian Coelho. To Biopsy or Not to Biopsy in Chronic Constipation? A Possible Role for Eosinophils in this Irritating Condition. Gastroenterology 2009: 136 (5): A284.
4.Sarah C. Glover, Chinmay Chauhan, Crystal L. Foster, Shruthi Bharadwaj, Ramana V. Vishnubhotla, Victor Nekrasov. Polyethylene Glycol (PEG) Prevents Against the Pro-Invasive Effects of Both Commensal and Pathogenic E. coli and May Increase Chemoresponsiveness of Colon Cancer Cells By Increasing Proliferation. Gastroenterology 2009: 136 (5 Supp 1): A321.
5.Sarah C. Glover, Victor Nekrasov, Ramana V. Vishnubhotla, Shruthi Bharadwaj, Crystal L. Foster. Commensal E. coli Strains Have the Ability to Alter the ECM Topography Independent of Colonic Epithelial Cells. Gastroenterology 2009: 136 (5 Supp 1): A573.6.Ramana V. Vishnubhotla, Shruthi Bharadwaj, Victor Nekrasov, Sarah C. Glover. Colon Cancer and Rho Kinase: Is Rock-II Really the Most Active Rock? Gastroenterology 2010: 138 (5 Supp 1): S-736.7.Victor Nekrasov, Igor Titushkin, Michael Cho, Sarah C. Glover. In Vitro and In Vivo Evidence in Support of Differentiation of Colon Cancer Stem Cells Into Adipocyte-Like Cells. Gastroenterology 2010: 138 (5 Supp 1): S-570.8.S. Glover, N.R. Patel, P.K. Muniyappa. Gastrointestinal Mastocytosis: An Unexplored Etiology in Chronic Abdominal Pain and GI Dysmotility. Journal of Allergy and Clinical Immunology 127, (2, Supp) AB252.
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Gloria
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Post by Gloria »

Interesting, Brandy. My PCP's new associate is a D.O. and I'm thinking she might have some interest in dietary solutions. I guess I've always been a little less impressed with D.O.s because a M.D. friend of mine told me that most D.O.s can't get into regular medical school, so they become osteopaths instead. I heard that from an osteopath, too. But they are more holistic in their approach. I suspect that most patients don't even know whether their doctor is an osteopath or an M.D.

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Post by brandy »

Hi Gloria,

I'm impressed you picked up the D.O. thing. My girlfriend referred me to Shands UF as she works with all the GI docs at Shands UF as a dietician. Dr. Glover spoke at her local dieticians association meeting and my girlfriend thought Dr. Glover would be best for our disease. I didn't check out bio of GI doc #1 (big mistake) so when I checked out bio of Dr. Glover and saw she was a D.O. I was kind of surprised and had the thought of wondering if I was going to a second rate doctor.

After it was all said and done with maybe it's not a bad thing to see a D.O. The D.O.s can order tests and write prescriptions and perhaps have a more holistic approach.

As an aside the same girlfriend's husband was pressing me to go to Mayo in Mn as he was not crazy about the Shands UF GI docs although he never had met Dr. Glover. His son had a 3 year stint of U.C. and several hospital stays at Shands. He moved through GI docs at 3 hospitals in north FL, North Florida Regional (where my GI doc #1 was) he did not like GI docs there; Shands UF, then Mayo in Jacksonville then settled in with
Mayo in Minnesota for 3 surgeries and numerous trips to Minnesota. During two stays at Shands he had a tough time getting toilet paper for his son's room and after about 25 minutes of trying to get toilet paper I think he had to contact the GI doc to finally get toilet paper. That was the last Shands stay and was the impetous for the move to Mayo. Truly if you have an inflammatory bowel disease you shouldn't have to bring your own toilet paper to the hospital. The son is better but sadly my friend's marriage is crumbling. I think there was too much emphasis on the son's UC for three years and no time for fun or the relationship. It's been kind of an eye opener to not let a disease take over your life. :emptytoiletpaperroll:

Brandy
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MaggieRedwings
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Post by MaggieRedwings »

Morning Ladies,

All of my doctors are D.O's and I really do feel they have a better approach. I think most are DO's becuase they choose that path and not because they cannot attend regular medical school. Only MD was my GI who I fired.

Love, Maggie
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