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    Actress Jennifer Esposito Emerging as Advocate for Celiac Disease Awareness


    Jefferson Adams
    Image Caption: Photo: Wikipedia

    Celiac.com 11/09/2012 - From their position in the public eye, celebrities can often draw attention to worthy causes, and to advocate for awareness of those causes more effectively than people outside the media spotlight.


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    After being diagnosed with celiac disease in 2008, actress Jennifer Esposito is on a gluten-free diet, and though she's still recovering from the damage to her small intestines, the 'Blue Blood' actress is emerging as a strong advocate for celiac awareness.

    Photo: WikipediaLike so many others with celiac disease, Esposito suffered for many years with symptoms ranging from stomach upset, exhaustion, joint pain, sinus infections, dry skin and hair, panic attacks, depression, and back pain. In fact, nearly twenty years went by before she had a solid diagnosis.

    In a recent interview, Esposito told S. Z. Berg that she is still dealing with the "repercussions of improperly being diagnosed over the years." She points to a lack of awareness about the disease for consumers and that fact that only recently "is the medical field paying closer attention."

    In a line that may be familiar to many people with celiac disease, she points out the long struggle to fully recover, even after adopting a gluten-free diet, noting that even though "many of the stomach issues and other ailment start to subside," celiac disease is an autoimmune condition that requires daily attention.

    People with the disease, she says, must constantly be aware of what they eat and maintain a healthy lifestyle, along with healthy vitamin and mineral levels.

    She says that her recovery has been "a long journey... and one that I still am on. The severe panic attacks have subsided as well as the depression, but with one bad meal they are ready and waiting to come to the forefront."

    Her own struggles have left her "determined to educate and make people aware of the truth about this disease."

    Ultimately, Esposito had her celiac disease confirmed through blood test and biopsy, but in some ways, that was only the beginning of her challenges. She says she believes that the medical industry needs to focus on "treating the individual person, the whole person, body and mind and not about money and mass studies of a disease."

    She also bemoans what she calls the "one pill fits all mentality" of the medical profession, along with the fact that nutrition is something that gets addressed only after an individual has gotten diagnosed. She describes this as "negligence," and says that it has compounded the damage, and with it, her difficulties. "My life is dramatically different and my health is a struggle everyday," she says.

    To help others with their celiac disease struggles, Esposito has created a blog called Jennifer's Way. There, she hopes to help people learn more about celiac disease and share the struggles and triumphs of her journey toward wellness.

    Her blog includes tips, ideas, and advice on how to get started in this new life. I also share some of my favorite easy and good for you recipes that I've created.

    She's also founded Jennifer's Way Foundation for Celiac Education to help make sure that going forward there is proper education about this disease in addition to helping to generate awareness to help people live a healthy gluten-free life.

    Jennifer has a nonprofit organization, Jennifer's Way, to help educate the public about celiac disease. Her Twitter handle is @JennifersWayJE.

    Developing Story: Breaking news indicates that Jennifer Esposito has been dismissed from her role in Blue Bloods, for reasons she says have to do with her celiac disease. This story is developing, so stay tuned...

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    Good article, however I do not think she represents celiac disease well to the public/media. After being diagnosed and eating a strict gluten-free diet, there are a lot of celiacs that can lead fully functional lives working jobs with very long hours. I do not understand what makes her different, as she is an actress and can rest in a trailer when she is not working but on set. I wish I could have done that when working! She is not a good advocate for me - an advocate is someone who does something positive for the community, often without being asked or without public recognition.

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    Guest IrishHeart

    Posted

    Good article, however I do not think she represents celiac disease well to the public/media. After being diagnosed and eating a strict gluten-free diet, there are a lot of celiacs that can lead fully functional lives working jobs with very long hours. I do not understand what makes her different, as she is an actress and can rest in a trailer when she is not working but on set. I wish I could have done that when working! She is not a good advocate for me - an advocate is someone who does something positive for the community, often without being asked or without public recognition.

    But she has done something positive for the community. It says in the article she "founded the non-profit Jennifer's Way Foundation for Celiac Education... proper education about this disease in addition to helping to generate awareness to help people live a healthy gluten-free life".

     

    Regarding her having continuing health issues after going gluten free: well, many of us do. You may be one of the very lucky ones who could recover quickly enough to "lead fully functional lives" but some of us simply could not. I could never work a full day at my teaching job right now. I had many health problems because of celiac and my muscles and joints were deeply impacted. I work hard to rehab them. It's taken me 2 years to get this far.

     

    Not everyone goes gluten-free and magically heals.

     

    I think she represents a very accurate picture of the dire consequences of long undiagnosed celiac. She is a far better representative than the eternally perky Elizabeth Hasselbeck who had minimal symptoms and whose only contribution to the celiac world is to sell more gluten-free junk food.

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    I agree with Irish Heart. One of my co-workers' grandmother has celiac disease, but it took months and months before she was even diagnosed, and she was in constant pain and anguish. Her family also had to struggle with this disease - worrying about her unknown illness. I'm diabetic and I still have to struggle everyday to keep from ending up using insulin or knowing I could end up on dialysis. I support Jennifer all the way, and she is an actress I admire. Good luck to her and her new-founded foundation.

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    But she has done something positive for the community. It says in the article she "founded the non-profit Jennifer's Way Foundation for Celiac Education... proper education about this disease in addition to helping to generate awareness to help people live a healthy gluten-free life".

     

    Regarding her having continuing health issues after going gluten free: well, many of us do. You may be one of the very lucky ones who could recover quickly enough to "lead fully functional lives" but some of us simply could not. I could never work a full day at my teaching job right now. I had many health problems because of celiac and my muscles and joints were deeply impacted. I work hard to rehab them. It's taken me 2 years to get this far.

     

    Not everyone goes gluten-free and magically heals.

     

    I think she represents a very accurate picture of the dire consequences of long undiagnosed celiac. She is a far better representative than the eternally perky Elizabeth Hasselbeck who had minimal symptoms and whose only contribution to the celiac world is to sell more gluten-free junk food.

    I am a 37 year old white male with celiac disease. I have many bad days dealing with this. It is an everyday struggle for me. I had to take a leave of absence from my job. Let's not judge, and let's work to find a cure someday.

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    But she has done something positive for the community. It says in the article she "founded the non-profit Jennifer's Way Foundation for Celiac Education... proper education about this disease in addition to helping to generate awareness to help people live a healthy gluten-free life".

     

    Regarding her having continuing health issues after going gluten free: well, many of us do. You may be one of the very lucky ones who could recover quickly enough to "lead fully functional lives" but some of us simply could not. I could never work a full day at my teaching job right now. I had many health problems because of celiac and my muscles and joints were deeply impacted. I work hard to rehab them. It's taken me 2 years to get this far.

     

    Not everyone goes gluten-free and magically heals.

     

    I think she represents a very accurate picture of the dire consequences of long undiagnosed celiac. She is a far better representative than the eternally perky Elizabeth Hasselbeck who had minimal symptoms and whose only contribution to the celiac world is to sell more gluten-free junk food.

    I agree! Thanks to Elizabeth for bringing more awareness (always a good thing), but she kind of gives the impression that it's not THAT big of a deal because she's so healthy looking. I have a co-worker who constantly makes comments about how I don't eat wheat because I "don't want a stomach ache". I have told her countless times that we're not just talking a stomach ache; it's a huge amount of damage to my digestive system, but she doesn't get it. I actually get kind of excited when celiac disease is portrayed as life-threatening. I used to watch Blue Bloods and I loved Jennifer in it; I am very sad about this turn of events both for her personally and the message it sends to the public at large.

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    Guest Roberta

    Posted

    Thanks, Jennifer. I think it is great that you are willing to talk about this. In your industry, any controversy can make or break a career. We need more awareness, and anyone in the public eye who can get more recognition of this disease the better. My husband was probably gluten-free from birth, and he didn't get diagnosed till his 60's. We still didn't realize our daughter was full blown celiac till she had endoscopic surgery. We did the genetic test on our granddaughter (now 9) and sure enough, she carries the gene. On a gluten-free diet, she thrives where she was born in the -5% category.

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    Good article, however I do not think she represents celiac disease well to the public/media. After being diagnosed and eating a strict gluten-free diet, there are a lot of celiacs that can lead fully functional lives working jobs with very long hours. I do not understand what makes her different, as she is an actress and can rest in a trailer when she is not working but on set. I wish I could have done that when working! She is not a good advocate for me - an advocate is someone who does something positive for the community, often without being asked or without public recognition.

    It's as she says: each person is different, and their response to treatment will necessarily be so as well. Also, it is SO hard (as I'm sure you know, as a sufferer of celiac disease) to always completely avoid gluten contamination. In fact, your negative attitude indicates you may have been exposed to some, since irritability is a known side effect.

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    I agree with Irish Heart and Kurt. I have been celiac for 10 years, and I am very strict with my diet, but I still have health issues that relate to my celiac disease. I love the fact that someone like Jennifer is so honest and open about what she is going through, and I am very sad not to see her on Blue Bloods anymore.

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    Guest Barabal

    Posted

    If this exposure brings more understanding to the world, this could be the "celiac moment" we've been needing. Only 1 in 5,000 sufferers ever get diagnosed because there are about 300 different symptoms, which are all over the place. The awful truth is that about 1 in 132 individuals actually have the disease! We have a long way to go. Keep up the good work, Jennifer.

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    Guest Réjeanne

    Posted

    Good article, however I do not think she represents celiac disease well to the public/media. After being diagnosed and eating a strict gluten-free diet, there are a lot of celiacs that can lead fully functional lives working jobs with very long hours. I do not understand what makes her different, as she is an actress and can rest in a trailer when she is not working but on set. I wish I could have done that when working! She is not a good advocate for me - an advocate is someone who does something positive for the community, often without being asked or without public recognition.

    I understand what you are saying and respect your point of view. It is not easy to maintain a living and have to meet the day the same as others when your body is so weak and tired it can hardly carry you. However, anyone who is a celiac and takes this sickness to heart can be a candidate. Yes, Jennifer`s life style is a little different than yours or mine, but if she honestly believes that this disease is life threatening, I hope a lot of celiacs will listen to her. I know too many people who play with this sickness and think it is okay while it is not. This sickness is not a game to me, and it has attacked many in my family through to the second generation below me.

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    I am a 37 year old white male with celiac disease. I have many bad days dealing with this. It is an everyday struggle for me. I had to take a leave of absence from my job. Let's not judge, and let's work to find a cure someday.

    But you can cure celiac disease just by not eating gluten

     

    Celiac is not like a disease but an allergy to gluten, so why call it a disease? There is so much fuss about it when all you do is avoid gluten foods, just like any other food allergy.

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    No basis except from the mouth of a bad actress.

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    But you can cure celiac disease just by not eating gluten

     

    Celiac is not like a disease but an allergy to gluten, so why call it a disease? There is so much fuss about it when all you do is avoid gluten foods, just like any other food allergy.

    Wrong, it's not a "food allergy" it's an autoimmune disorder. In people with an autoimmune disorder, the immune system can't tell the difference between healthy body tissue and antigens. That causes an immune response that destroys normal body tissues. This response is a hypersensitivity reaction similar to the response in allergic conditions.

     

    In allergies, the immune system reacts to an outside substance that it normally would ignore. With autoimmune disorders, the immune system reacts to normal body tissues that it would normally ignore. So not the same as an allergy.

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    Guest Nancy

    Posted

    Good article, however I do not think she represents celiac disease well to the public/media. After being diagnosed and eating a strict gluten-free diet, there are a lot of celiacs that can lead fully functional lives working jobs with very long hours. I do not understand what makes her different, as she is an actress and can rest in a trailer when she is not working but on set. I wish I could have done that when working! She is not a good advocate for me - an advocate is someone who does something positive for the community, often without being asked or without public recognition.

    Totally disagree with your comment. I also was forced to leave my job, not because I wanted to but my health problem due to celiac disease was and still is controlling my daily living. Thank you Jennifer Esposito for making it aware that not all celiacs are alike.

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    Guest Johne

    Posted

    Wonderful blog! I found it while surfing around on Yahoo News.

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    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics