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Found 6 results

  1. Dear All, I am writing this post on behalf of my father, who at the age of 67 has been a diagnosed celiac for the last 37 years. He has a complete intollerance of gluten and has managed his disease extremely well over the last 37 years. However, starting approximately 12 months ago he started to lose weight, and started to suffer from low blood pressure and terrible headaches at the same time. He has terrible edema and fluids leak from his swellings. He has had several CT scans, endoscopies and blood tests. So far we know the following : he is currently in hospital in a bad way after being admitted 2 days ago. He has an albumin level of 14 when it should be around 60. He has little or no iron in his blood. His blood pressure when sitting was 70/55 and drops when he stands, so much so that the nurses are struggling to get a reading. he has terrible swellings in his legs and arms and stomach region. Fluid is leaking from the swellings. He has had a chest xray today and he has fluid in his lungs and his heart now looks enlarged. He is going for a heart scan this afternoon Please can anyone help us, or point us in the direction of a fix for this? the doctors have admitted that they have no idea how to even start fixing it - at the moment all they are doing are giving him a duretic via a port in his arm. lastly he has lost around 6 stone in the last 12 months. Its taken forever to get anything looked into and for a while they were looking into his heart as they had seen some markers in some blood tests and thought he was in heart failure...this has since been dismissed as incorrect. Thank you in advance for any help of advice you can possibly give. Rachel
  2. Celiac.com 05/22/2017 - After their seven-month-old baby died weighing less than 10 pounds, a mother and father in Beveren, Belgium, are standing trial on charges that they starved the child by negligently providing an alternative gluten-free diet, with no medical supervision. The couple, who ran a natural food store, put their son Lucas on an alternative gluten-free, lactose-free diet, which included quinoa milk, despite doctors describing it as unsuitable for developing infants. According to child gastroenterologist Elisabeth De Greef, from the University Hospital of Brussels, feeding quinoa milk and other such foods to infants is absolutely wrong. She says that "These kinds of milk, which you can buy in a supermarket, do not contain the necessary proteins, minerals and vitamins. They are not adjusted to infants and thus unsuitable." Lucas' mother said in a statement that "Lucas had an eating disorder. He got cramps when he was fed with a bottle and his parents tried out alternatives. Oat milk, rice milk, buckwheat milk, semolina milk, quinoa milk." These are all products the couple sold at their store. At the beginning of the trial, public prosecutors blamed the couple for their son's death. Prosecutors claim that the couple made their "own diagnosis that their child was gluten intolerant and had a lactose allergy," without any input from doctors. In fact, prosecutors allege that the couple kept the child away from doctors altogether. "Not a single doctor had a dossier about Lucas and child protection services did not know about them," said the public prosecutor. The infant's diet, said prosecutors, "led to him being less than half the expected weight for a boy his age," at the time of his death in June 6, 2014. An autopsy showed that Lucas' stomach was totally empty at the time of his death. Prosecutors say the parents did not seek medical attention, even when Lucas was gasping for air in the days before he died. When Lucas was in the final throes of starvation, and the parents finally did take action, prosecutors say that they compounded the child's medical crisis by driving to a homeopathic doctor on the other side of the country, instead of going to the nearest hospital. In their defense, Lucas's father, claimed the couple never took Lucas to a doctor "because we never noticed anything unusual." In fact, the parents believed Lucas had an eating problem, says the couple's lawyer. Under questioning, Lucas' tearful mother said that the couple never "wished for the death of our son." She also stated that Lucas ometimes…gained a little weight, sometimes he lost a little." Yet according the public prosecutor the actions by the couple amount to "intentionally denying food" to the boy. For now, the trial in this tragic case continues, with a verdict set for June 14. Read more: Metro.co.uk
  3. Has anyone else been diagnosed, but not had malnutrition issues? I am also extremely confused about the excessive bruising and severe muscle cramping. All my lab tests came back normal. any advice?
  4. Celiac.com 06/17/2015 - Refractory celiac disease type II (RCDII) and EATL (Enteropathy Associated T-cell Lymphoma) are pre-malignant complications of celiac disease. However, there is scant medical literature and data what role malnutrition and intestinal absorption may play in these conditions. With this in mind, a team of researchers set out to conduct a comprehensive assessment of nutritional status and intestinal absorption capacity of patients with RCDII and EATL, and to compare that with data of newly diagnosed celiac disease patients. The research team included N.J. Wierdsma, P. Nijeboer, M.A. de van der Schueren, M. Berkenpas, A.A. van Bodegraven, and C.J. Mulder. They are affiliated with the Department of Nutrition and Dietetics, the Department of Gastroenterology, the Celiac Centre Amsterdam, the Department of Nutrition and Dietetics at VU University Medical Centre in Amsterdam, The Netherlands; and with the Department of Internal Medicine, Gastroenterology and Geriatrics at ATRIUM-ORBIS Medical Centre, Sittard, The Netherlands. They conducted an observational study in tertiary care setting in for 24 RCDII patients, averaging 63.8 ± 8.2 years of age, 25 EATL patients averaging 62.3 ± 5.7 years of age, and 43 celiac disease patients averaging 45.6 ± 14.8 years of age. At diagnosis, the team evaluated anthropometry (BMI, unintentional weight loss, fat-free mass index (FFMI), handgrip strength (HGS), nutritional intake, fecal losses and Resting Energy Expenditure (REE)). They found low BMI (<18.5) more often in RCDII patients than in celiac disease or EATL patients (in 33%, 12% and 12%, respectively, p = 0.029). Also, 58% of EATL patients had unintentional weight loss greater than 10% of total weight, compared to 19% of celiac disease patients, and 39% for RCDII patients (p = 0.005/0.082). The team found energy malabsorption (below 85%) in 44% of RCDII patients, and in 33% of EATL patients, compared with 21.6% in celiac disease (NS). Fecal energy losses were higher in RCDII than in celiac disease patients (589 ± 451 vs 277 ± 137 kcal/d, p = 0.017). REE was lower than predicted, with reulst greater than 10% in 60% of RCDII, 89% of EATL, and 38% of celiac disease patients (p = 0.006). Between one third and two thirds of all patients showed Low FFMI and HGS. Patients with RCDII and EATL show far worse nutritional profiles than untreated naïve celiac disease patients at presentation. This malnutrition is at least partly due to malabsorption as well as hypermetabolism. This study shows the importance of proper diagnosis, and of nutrition in the treatment of these conditions. Source: Clin Nutr. 2015 Apr 30. pii: S0261-5614(15)00124-7. doi: 10.1016/j.clnu.2015.04.014.
  5. Hello all. I am posting today in hopes of gaining some knowledge and support as I battle what appears to be a worsening condition of celiac. I am a 38 yr old male who was diagnosed with celiac back in March of this year. Previous issues with diverticulitis and had surgery to remove a piece of my colon. Went to my doc as I had lost. 7 pounds. I weighed 163 before so I have always been skinny. After endoscopy and colonoscopy biopsy came back with early onset of celiac. Since then I have lived gluten free to the best of my abilities. I know I will still ingest on occasions when I am out to dinner and it becomes impossible to completely avoid. The first month or two I had no problems or issues, since then, the stomach pains and frequent bowel movements have become more common place. Two weeks ago I had flu like symptoms which resulted in 48hrs of diarrhea and nausea. Complete exhaustion and weight loss set in. Recovered and was back to normal with no concerns. Last night woke up at 4 and started with diarrhea again. Still battling as I am writing this now. Immodium does not eliminate anymore but only slows it down. Just noticed a tiny but of mucus in my stool. Obviously with my health issues I am fragile and concerned for my future, wife and child and a lot to live for. My gastro wanted me back for another endo and colonoscopy but it's so cost prohibitive I have been reluctant To go. Now I feel there is not much choice in the matter. Seems as though a lot of you all have similar issues and I was hoping to get advice on successful tempering of these symptoms. It seems living gluten free is not always enough and I am hopeful someone has found something that reduces the recurrence of these symptoms, It is now affecting my daily life with work, family and friends. Thanks for your time
  6. Celiac.com 06/27/2007 - It is well known that following a gluten-free diet brings about a remission in celiac disease. But what are the true physiological effects of such remission? A study published recently in the American Journal of Clinical Nutrition shows that even when people with celiac disease follow strict gluten-free diets, they frequently have inferior body composition and nutritional uptake compared to healthy people without celiac disease. Faced with a shortage of solid data on the long-term benefits of a gluten-free diet for celiac patients, a team of Italian doctors conducted a study to determine body composition and nutritional status. They looked at data for patients with celiac disease who are following a strict gluten-free diet, and who were in full clinical, biochemical, and histological remission. The research team was made up of Maria Teresa Bardella, Clara Fredella, Luigia Prampolini, Nicoletta Molteni, Anna Maria Giunta and Paolo A Bianchi. They looked at data from 71 patients. Subjects included 51 women and 20 men. Subjects ranged from 17 to 58 years of age. The average age of test subjects was 27 years. Subjects were assessed for the following factors: body mass index; bone mineral content (as measured by dual-energy X-ray absorptiometry); fat and lean mass; height and weight. The team conducted a 3-d dietary questionnaire. They also measured total daily energy, fat, carbohydrate, and protein intakes. Important for Celiacs to Follow Strict Gluten-Free Diet to Avoid Malnutrition - Lower Weight and Body Mass Index for Celiac Patients Compared to control subjects, celiac patients had a lower intake of total energy (9686 ± 1569 and 11297 ± 1318 kJ/d in males and 6736 ± 1318 and 7740 ± 1715 kJ/d in females). The male celiacs showed lower weight, height, and body mass index than their control counterparts. Female celiac patients showed substantially lower weight and body mass index. For both male and female celiac patients, fat and lean mass differed dramatically from the control group. Female celiac patients diagnosed as adults showed a markedly higher lower bone mineral content compared to the control group. Males showed no such disparity. In general and celiac patients ate an unbalanced diet that contained higher amounts of energy from fat and lower amounts of energy from carbohydrates. Researchers Recommend Strict Follow-ups and Nutritional Advice for Celiac Patients The study showed that even when celiacs faithfully follow a gluten-free diet and their celiac disease is in total remission; their body composition and nutritional uptake differ substantially from healthy non-celiacs. For that reason, and in order to prevent malnutrition, the researchers recommend that all celiacs receive strict follow-ups and dietary evaluations regarding the nutritional composition of their food choices. American Journal of Clinical Nutrition, Vol. 72, No. 4, 937-939, October 2000 health writer who lives in San Francisco and is a frequent author of articles for Celiac.com.
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