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    Doctors Causing Significant Delays in Celiac Diagnosis for Women


    Jefferson Adams
    Image Caption: Doctors are causing delays in diagnosing women with celiac disease. Photo: CC--Erik Wilde

    Celiac.com 09/22/2016 - There really hasn't been much study done on diagnostic delays and factors associated with celiac disease, as well as on its potential impact on the course of disease.


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    To get a better idea of the issue, a research team recently conducted a large systematic patient survey study among unselected celiac disease patients in Switzerland.

    The research team included SR Vavricka SR, N Vadasz, M Stotz, R Lehmann, D Studerus, T Greuter, P Frei, J Zeitz, M Scharl, B Misselwitz, D Pohl, M Fried, R Tutuian, A Fasano, AM Schoepfer, G Rogler, and L Biedermann. They are variously affiliated with the Division of Gastroenterology and Hepatology at Triemli Hospital Zurich in Zurich, Switzerland, IG Zöliakie, Basel, Switzerland, the Division of Gastroenterology and Hepatology at University Hospital Zurich, Zurich, Switzerland, the Division of Gastroenterology and Hepatology, Gastroenterology Bethanien, Zurich, Switzerland, the Division of Gastroenterology and Hepatology, Spital Tiefenau, Bern, Switzerland, the Pediatric Gastroenterology and Nutrition, MassGeneral Hospital for Children, Boston, USA,and with the Division of Gastroenterology and Hepatology, University Hospital Lausanne - CHUV, Lausanne, Switzerland.

    They broke their study down into patient-associated delays, and doctor-associated delays. They found an average total diagnostic delay of 87/24 months (IQR 5-96), with a range from 0 up to 780 months, which was fairly equally divided between doctor delay and patient delay. Both mean/median total (93.1/24 vs. 60.2/12, p<0.001) and doctors' (41.8/3 vs. 23.9/2, p<0.001) diagnostic delay were significantly higher when comparing female vs. male patients, and interestingly patients' delay was similar even after an irritable bowel syndrome diagnosis.

    Patients with a diagnostic delay shorter than 2 years showed a substantially lower dependence on steroids and/or immunosuppressants, better substitution for any nutritional deficiency, and were more likely to be symptom-free between 6 and 12 months after diagnosis.

    Regular, substantial delays in diagnosing celiac disease, are linked to worse clinical outcomes, and this data shows that such delays are significantly longer in female patients.

    This increased diagnostic delay in women is the fault of doctors, not patients, in part because the delay statistics cannot be explained by a diagnosis of IBS prior to celiac disease diagnosis.

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    This is SO true. I had to switch doctors because after 2 YEARS of telling him that my own mother has celiac, he still wouldn't listen. Went to a new doctor, ordered the test, came back positive...I could finally move on and feel good! I have to say, I hold my doctor accountable for the delay in my diagnosis of celiac disease.

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    My doctors told me it was depression, anxiety, and then perimenopause. Symptoms got really bad in my late teens, and I wasn't diagnosed until my 40's when I was bedridden and having trouble with blindness and neurological symptoms. Changing my diet eliminated all the "depression" and "anxiety."

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    Guest Cindy Maxwell

    Posted

    I am a woman diagnosed with IBS and have been pretty sure I have celiac disease, so been on gluten-free diet for 5 years, with several incidents of glutening. I know all too well the resulting symptoms. I wanted to get biopsy diagnosis and the Dr. tried to convince me I did not have celiac disease, but agreed to do the gastroscopy/biopsy anyway. I had to consume gluten daily for a month before the test. Still waiting for the results, but now I have read several reports from celiac disease sufferers who had negative biopsy results previous to their eventual positive biopsy result. Now I am feeling even if I get a negative result, I won't believe it. What a waste of time. And now I am suffering with diarrhea, mouth sores, blurred vision, fatigue, disrupted sleep patterns, and an itchy rash on my arms, legs and back. I have lost trust in the medical profession.

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    Guest Didi Magnin

    Posted

    How very true this has been for me - do I beat the record with 22 years? I made the diagnosis myself, thanks to the Microscopis Colitis Group and Dr. K. Fine. The diagnosis was confirmed only in 2013 by Prof. Michetti of Lausanne. I'd been seeing GPs and G-I specialists during these many years and no-one thought of looking, just IBS and microscopic colitis! My father and his brother always had gut problems and their cousin was only diagnosed at 68 - with acute osteoporosis, she lost 10 cm. height.

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    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
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    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). 
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