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chrissy

How Many Family Members With Celiac?

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how many family members in your family have celiac. my identical twin 14 year old girls have it, and my 10 year old daughter also. as far as we know, no one on either side of dh's or my family have it.

christine

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My Mother and Brother both have Celiac Disease, too.

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My father and an aunt on my mother's side. All other first-degree relatives tested and none have it.

richard

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The only other person brave enough to have the blood test in my family is my sister and that test is negative. The brothers are too chicken.

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My youngest son has Celiac. My husband, older son and I have been tested. My Mom was tested. We four are negative. No one else has been tested. I imagine it's because they have no symptoms, and I haven't really reminded them (with the exception of my sister) that Ty didn't have any symptoms either. In fact, other than my Mom & sister, none of our extended family have even asked if it is genetic or hereditary or what.

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In My family:

Daughter: DX Coeliac

Me: Gluten sensitive - Enterolabs Dx

Father of DX daughter: Alopecia, GI symptoms. blood tests (Ema only I think) Neg (falsly I think)

Sister 1: Exactly same symptoms as Me, been gluten-free too long to get meaninful blood/biopsy.

her son: 'Hyper' floaters, allways hungry, strange vascular anomoly in bowel. Getting tested soon.

Sister 2: Younger but same symptom at same age as me and Sis 1. gluten-free for 3 weeks feeling better.

Mother: Thin as a rake, rheumatoid A. Milk intolerant. oestoporosis. won't test.

Father: Motor neuron D. died. had lots of fractures and gastric issues.

Also various aunts and cousins on both sides of my family either really skinny or really overweight with GI problems. We are English/some Irish & french way back.

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My grandmother has celiac disease and I suspect that my aunt also has celiac disease. I think my mom may be gluten intolerant since she has tested negative for celiac disease.

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I am the only one "officially" diagnosed, but I swear my sister has it also.

I actually finally talked her into going for the bloodtest, and it came back negative. I can't believe the GI didn't want to pursue it further though. She has everything the same as I do except she has the big C instead of the big D.

I believe it is on my mom's side extensively. Both her sisters died of gastro problems and were basically skeletons when they died (also had severe osteoporosis). My grandmother has always had gastro issues.

I have had the girls checked but not the boys yet. Both girls tested negative for celiac but I swear Rhiannon has it.

Karen

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I have it and my middle daughter of 3 has it. I'm fairly certain my sister and possibly my brother have it but neither will be tested!!

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My dad and brother have the same symptoms that I did but don't seem to interested in changing.

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Guest Viola

I have it and our oldest daughter has it. I suspect my mom has it as well, but will likely never be tested.

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I'm the only dx one. I have some cousins that are sick all the time like me, but they will not get tested. My mother said that her father could only eat milk and cornmeal - everything else made him sick. He died when I was a baby, all his photos make him look like a small walking skelton. All that to say I suspect that he had celiac disease.

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Guest Rad

My three sisters have had problems all their lives with dermatitis. Tried to tell them that new research regarding this skin disorder relates it to gluten intolerance. They did want to hear this.

My dear brother committed suicide in 1982 thinking he had cancer. One of his symptons was undigested food in his stools.

Had a great grandmother with osteoporsis. And an aunt that died of colon cancer.

Have a son that's been told he has Irritible Bowel. After reading this Board, recently sent him a letter highly recommending he get tested for C/D.

Dianna

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My mother-in-law was DX a few years ago. My husb and son just DX recently. My husb's 3 siblings were tested with negative results.My brother-in-laws autistic son was tested negative also.

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I am the only official one diagnosed but we think many people in the family have it. They just won't get tested but alot have the same symptoms I did!!!

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My mother and I both have it! Sister tested negative for it...

However I think a few of my aunts on my mothers side have it as well.....

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My dear brother committed suicide in 1982 thinking he had cancer. One of his symptons was undigested food in his stools.

Dianna

Dianna,

That is tragic. If only celiac disease was more well known back then......

Hugs.

Karen

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Sister 1: Exactly same symptoms as Me, been gluten-free too long to get meaninful blood/biopsy.

her son: 'Hyper' floaters, allways hungry, strange vascular anomoly in bowel. Getting tested soon.

What do you mean by "hyper floaters"? Do you mean something that looks like transluscent grey amoeba-like thingys that float around your eyes? And when you look quickly in another direction by moving only your eyes, they follow?

Sorry for the weird description, that's the only way I can describe it.

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Let's see... My Grandmother had is as does my mother and my 6 yr old son. DH's Grandmother had it and I suspect his mother has it, but she keeps *forgetting* to be tested. DH will be tested next Tuesday and hopefully DS #2 will be tested after that (he's almost 5). I had a blood test which came out negative as did my sister and her children.

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As far as I know, I am the only one with celiac disease. That includes distant relatives as well.

Now that I think about it, maybe I was adopted.

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There seems to be a lot of emphasis on "ethnic groups", such as irish or European descent in regards to Celiac Disease. I'm a bit new at this (three week into my research, and awaiting test results). But from my readings so far, the newer research materials indicate that older studies may be flawed. What I'm getting is that newer research shows that Celiac Disease is an "equal opportunity" disease - no racism involved, so to speak. Personally, I think that a lot of poor people in the U.S. (poor Whites, Hispanics, African Americans, etc.) die without ever knowing that they have the disease, partly due to lack of access to good medical care, and partly due to lack of education in regards to health care. I live in California, and very few doctors take the state medical insurance (Medi-Cal) due to the low reinbursement fees. A surgeon friend of mine performed an operation on a Medi-Cal patient, and after all of his overhead, etc. was paid, he made 85 cents for performing the procedure. True story, even he got a laugh out of it. I've also had dealings with the "low income" clinics who take Medi-Cal (state insurance), and they want those patients in and out, so that they can see as many as possible in the shortest period of time in order to make a profit. Do you think those type of doctors are going to take the time to diagnose such complicated illnesses as Celiac Disease, Lupus, or some of the other rare diseases? Sadly, no. There are some illnesses such as Sickle Cell Anemia that are specific to certain ethic groups, but I don't think Celiac has a preference. Just my opinion so far, after limited research/reading about such immune system disorders as Celiacs and Lupus.

Chap

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My brother and I both have it. My late father had an iliostomy for ulcerative colitis over 20 years ago. I wonder if he had been tested for celiac disease, the results would have been positive?

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I find it sad that none of my relatives- including my parents-WILL NOT get tested even though they all witnessed how sick I was and how healthy I am now. I'm sure aout half of them have it but, they keep their heads in the sand :(

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My younger sister is gluten intolerant but wasn't diagnosed with celiac and my older sister was tested and is negative, my mom is negative as well. We don't know about my dad's family since we aren't in touch with any of them.

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    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    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.
    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). 
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    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.
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    Source:
    Alimentary Pharmacology & Therapeutics

    Jefferson Adams
    Celiac.com 06/12/2018 - A life-long gluten-free diet is the only proven treatment for celiac disease. However, current methods for assessing gluten-free diet compliance are lack the sensitivity to detect occasional dietary transgressions that may cause gut mucosal damage. So, basically, there’s currently no good way to tell if celiac patients are suffering gut damage from low-level gluten contamination.
    A team of researchers recently set out to develop a method to determine gluten intake and monitor gluten-free dietary compliance in patients with celiac disease, and to determine its correlation with mucosal damage. The research team included ML Moreno, Á Cebolla, A Muñoz-Suano, C Carrillo-Carrion, I Comino, Á Pizarro, F León, A Rodríguez-Herrera, and C Sousa. They are variously affiliated with Facultad de Farmacia, Departamento de Microbiología y Parasitología, Universidad de Sevilla, Sevilla, Spain; Biomedal S.L., Sevilla, Spain; Unidad Clínica de Aparato Digestivo, Hospital Universitario Virgen del Rocío, Sevilla, Spain; Celimmune, Bethesda, Maryland, USA; and the Unidad de Gastroenterología y Nutrición, Instituto Hispalense de Pediatría, Sevilla, Spain.
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    Source:
    Gut. 2017 Feb;66(2):250-257.  doi: 10.1136/gutjnl-2015-310148.