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  1. Celiac.com 07/26/2017 - People with fibromyalgia often experience symptoms similar to those seen in patients with gluten-related disorders. Could these patients have some kind of hidden gluten sensitivity? Could a gluten-free diet offer improvement in their condition? Is a gluten-free diet better than hypocaloric diet for these patients? A team of researchers recently set out to evaluate the effects of a gluten-free diet (GFD) compared with a hypocaloric diet (HCD) in a group of fibromyalgia patients. The research team included Mahmoud Slim PhD; Elena P Calandre MD; Juan M. Garcia-Leiva PhD; Fernando Rico-Villademoros MD; Roccia Molina-Barea MD; Carmen M Rodriguez-Lopez MD; and Piedad Morillas-Arques MD. They are variously affiliated with the Institute of Neurosciences "Federico Olóriz" University of Granada, Granada, and the Department of Neuroscience and Health Sciences, University of Almeria, Almeria, Spain. Over a 24-week period, the team fed either a gluten-free diet, or a hypo-caloric diet to adult patients diagnosed with fibromyalgia. Of the 75 total study subjects, 35 were randomly placed on gluten-free diet, and 40 on a hypo-caloric diet. The team focused mainly on symptoms related to gluten sensitivity. They also evaluated the following secondary outcomes: body mass index, Revised Fibromyalgia Impact Questionnaire, Pittsburgh Sleep Quality Index, Brief Pain Inventory, Beck Depression Inventory-II, State-Trait Anxiety Inventory, Short-Form Health Survey, Patient Global Impression Scale of Severity, Patient Global Impression Scale of Improvement, and adverse events. Their results showed that the least squares average change in the total number of gluten sensitivity symptoms from baseline were similar in both the gluten-free diet and hypo-caloric diet groups (−2.44±0.40 for the gluten-free diet; −2.10±0.37 for the hypo-caloric diet; P=0.343). Both diets were well tolerated, but neither was superior in terms of the remaining measured secondary outcomes. Patients in both groups saw similar beneficial outcomes in terms of fewer gluten sensitivity symptoms and improved secondary outcomes. However, despite better specificity, the gluten-free diet was not better than the hypo-caloric diet in reducing the number of gluten sensitivity symptoms or secondary outcomes. At the end of the day, the gluten-free diet was no better or worse than the hypo caloric diet in treating fibromyalgia. Source: Journal of Clinical Gastroenterology: July 2017 - Volume 51 - Issue 6 - p 500–507. doi: 10.1097/MCG.0000000000000651
  2. I have been dealing with pain for thirty some years. I have been diagnosed with RA (sed rate high) due to joint inflammation and nodules, OA due to xray, mri results, fibromyalgia at one point because they didn't want to tell me it was all in my head and, I have nodules on my thyroid. Other than my sed rate being high, my blood work comes back "normal" so, other than the Methotrexate for RA, I am on no meds for pain. I take Ibuprofen when needed. I do not take "pain meds" because I have a low tolerance to medication and I just cant function even if I take 800mg of Ibuprofen. Example . .. I get a cold and take children's cold medicine. I take 1/2 the dose of a six year old and it knocks me out. Some days the pain is so bad, I can barely walk. My husband bought me a hot tub a few years back for my birthday and it is my go to on bad days. I was tested for Celiac's and came back okay. The only other blood work that comes back out of whack are MCHC, low . . . MCH, low . . . RDW, high, . . . ESR, anywhere from 20 to 85 but normally around 40ish . . . TSH, 2.0 or below. But, the doctors say the first three are not so far out of range that we should worry about it, the ESR just means there is inflammation and the TSH is within normal range. I have recently gone gluten, dairy, and sugar free in an effort to combat symptoms, pain and weight. I have noticed a difference in the inflammation and in my general overall wellbeing. I seem to be more attentive, have more energy, and not is no much pain. My questions are: Does anyone else have similar issues while all blood work is coming back normal? And, any suggestions on how to introduce items back into my diet to test for reactions? Should I start with gluten or dairy? The sugar I can live without. Any info would be helpful. I look things up on the internet but end up with a bunch of pop up ads for things that are going to cure me. Thanks in advance.
  3. After my crash and burn gluten challenge of 2016, I wander off yet again Into the land of eastern and alternative medicine to heal. While I am grateful to many (not all) western medicine Dr s of the past , for the past 2 decades the ones who give me relief for my lifetime ails are the alternative/eastern practitioners. I'm not starting a debate as both branches have their strengths, often the shame is they are seperated in healthcare, for likely humanity and public health imo would be best served by their encouraged collaboration/mutual recognition,but alas not my problem to solve. Much bigger then me and quite frankly, I'm too busy healing to tackle that mountain. Regardless, I now have "shoes that fit my carpet bag " of decades of multiple misdiagnosis /undiagnosis collection. They can be combined and labeled celiac and fibromyalgia. I was shocked at first at the news, I consider those really serious. Is AWOL really that ill? I've read up more on both disciplines descriptons etc for these conditions, I'm in shock for the "shoes" fit perfectly . I know based on western test results I'm far from textbook/ gold standard celiac (but I failed to get past day 6 of my gluten challenge -likely speaks for itself) and fibromyalgia is quite demeaned/dismissed from my past knowledge amongst the western medicine world and greater society. (Friends /family in western medical fields) Is this still the case? My lifetime gi issues, the 30 plus years multiple chemical sensitivities ( go back to childhood-I keep very close to the vest), 20 plus years symptoms of muscle issues / myalgia, now have the names of celiac & fibromyalgia. Mixture of feelings of relief to be recognized, but also knowing my named illnesses are likely not recognized or are minimised by my western medicine trained family and friends and greater society. Can anyone offer some encouragement to help me cope at this time of healing? My accupuncture visits have been truly helpful, but my last visit is giving me a lot to process chemically, biologically, and spiritually. It's like someone unleashed the flood gates of all the symptoms of both illnesses at once in a combined package for me to experience in a one transparent package. Very enlightening and to be blunt I feel like crap. So it's time to accept the package names and all, the curtain was lifted and the waxing and waning symptoms of fibromyalgia we're released. Please share any positive support or stories you have on coping with celiac recovery, celiac/fibromyalgia, and healing by accupuncture. It will be much appreciated. As it is abundantly clear AWOL is here to stay on the celiac.com forums. Thanks
  4. I was just diagnosed with Celiac Disease six months ago at the age of 35. Five years ago (at age 30), I fell ill for days with flu-like symptoms and abdominal pain. My doctor's office did a blood test and sent me to the hospital where I underwent emergency surgery for "perforated diverticulitis". Until this point, I had always considered myself healthy. I am a non-smoker. I was 5'7", 145 lbs. I wasn't aware I had diverticulitis. Apparently it was so bad that it had burst open. My surgeon told me if I had waited 24 hours to seek medical attention, I would have likely died. Very scary. He also told me that this kind of illness at my age was extremely rare. This is the type of thing that they see in people over 80. I had to have 1.5 feet of large colon removed. I wore a colostomy bag for 3 months while I healed and I was able to have the reversal surgery after that. Following the surgeries, I've had a lot of digestive problems. I saw many specialists who told me it was anxiety that induced my symptoms. Finally I went to a new GI who found the celiac disease. After my endoscopy, he told me it was advanced. I know celiac is supposed to attack the small intestines, but I am curious to know if there is a link to large bowel issues as well. Has anyone had a similar experience? Or able to shed any light on this? I also have: Fibromyalgia Shadow block migraines bulging discs scoliosis acid reflux Chronic nausea peripheral neuropathy memory issues Chronic ear pain swollen lump under left ear (for two years) reynauds syndrome (all of which began after my surgeries) The only thing that appeared to get better after beginning a strict gluten free diet, is the acid reflux and chronic nausea. Everything else has gotten a lot worse.
  5. Celiac.com 04/10/2017 - Fibromyalgia syndrome is a debilitating condition of unknown cause, and only treatment approaches at present offer only limited relief from symptoms. Some fibromyalgia sufferers seem to benefit from a gluten-free diet, but there's not a great amount of data on the benefits of a gluten-free diet in fibromyalgia sufferers who do not have celiac disease. A team of researchers recently set out to describe 20 selected patients with fibromyalgia, but without celiac disease, whose symptoms improved when they followed a gluten-free diet. The research team included Carlos Isasi, Isabel Colmenero, Fernando Casco, Eva Tejerina, Natalia Fernandez, José I. Serrano-Vela, Maria J. Castro, and Luis F. Villa. They are variously associated with the Department of Rheumatology, Hospital Puerta de Hierro, Majadahonda Madrid, Spain; the Department of Pathology, Hospital Infantil Niño Jesús, Madrid, Spain; the Department of Pathology, Hospital Puerta de Hierro, Majadahonda Madrid, Spain; the Department of Gastroenterology, Hospital Puerta de Hierro, Majadahonda Madrid, Spain; the Celiac and Gluten Sensitive patients Association of Madrid, Madrid, Spain; and with the Department of Immunology, Hospital Doce de Octubre, Madrid, Spain. What researchers now call non-celiac gluten-sensitivity is a daily common, yet treatable condition, with a range of symptoms that dovetail with many symptoms of fibromyalgia, including chronic musculoskeletal pain, asthenia, and irritable bowel syndrome. All patients underwent anti-transglutaminase assay, duodenal biopsy, and HLA typing. To rule out celiac disease in their test subjects, the research team used negative anti-transglutaminase assay results, together with the absence of villous atrophy in the duodenal biopsy. All patients showed signs of intraepithelial lymphocytosis with no villous atrophy. The doctors defined a positive clinical response as the achievement of at least one of the following: remission of fibromyalgia-associated pain, return to work, return to normal life, or the discontinuation of opioids. Doctors followed on the patients from 5 to 31 months, with a follow-up period of 16 months, on average. The level of widespread chronic pain improved dramatically for all patients; for 15 patients, chronic widespread pain was no longer present, indicating remission of FM. Fifteen patients returned to work or normal life. In three patients who had been previously treated in pain units with opioids, these drugs were discontinued. Fatigue, gastrointestinal symptoms, migraine, and depression also improved together with pain. Patients #2 and #3, both with oral aphthae, went into complete remission for psoriatic arthritis and undifferentiated spondyloarthritis. These results strengthen the idea that non-celiac gluten sensitivity may play a key role in the development of fibromyalgia syndrome. Source: Rheumatol Int. 2014; 34(11): 1607–1612. Published online 2014 Apr 12. doi: 10.1007/s00296-014-2990-6
  6. To All those who have had other disease diagnosis's before your Celiac Diagnsosis, Someone more experienced on this board might set up a poll to see how many of the tags in the thread apply to those who have received either a celiac disease or NCGS diagnosis for those who read this board. See this new research as posted on Celiac.com today http://www.celiac.com/articles/24448/1/Gluten-Definitely-Triggers-Symptoms-in-Some-NCGS-Patients/Page1.html?utm_source=phplist1864&utm_medium=email&utm_content=HTML&utm_campaign=Celiac.com+Update%3A+Can+Some+Celiac+Disease+Be+Treated+with+More+than+Just+a+GFD%3F A survey how many diseases other than Celiac disease were you diagnosed with before you received your Celiac Diagnosis? Or what other disease(s) do you also have as a result of either not being diagnosed with Celiac disease sooner or that are occurring with (Co-Morbid) with your Celiac diagnosis: A Survey/Discussion of how Co-Morbidity i.e., Pellagra might explain some of the GI problems you might be experiencing with/as a Celiac patient. I know of at least one other person on this board who has shown symptom improvement when using Niacin (best taken in the Niacinamide form) a harder to find flush free form that is often used in skin creams to treat dermatitis issues that might be confused for D.H. among Celiac sufferer’s. I was wondering if others’ have used it (Niacin in the Niacinamide form) for symptom relief for their GI problems. I find among my friends who try it they experience much better control from contamination issues once the Vitamin induces/causes them to burp. Has anyone else experienced similar results? Am I alone? Or would you be willing to try Niacinamide to see if it might cause burping and improve CC issues for you too the way it has me. If so please join the discussion and comment. Posterboy,
  7. Hi! I was hoping some of you might be able to tell me if my symptoms seem like good reason to be tested for celiac disease... I actually asked my doctor to test me (years ago) and she told me she would not test me because the test is expensive... However, I am now desperate to figure out how to manage my health issues and am willing to find a doctor that WILL test me if my symptoms seem to point to celiac...Here they are: I have been diagnosed with all of the following over the last 12 years (I am 22 years old, and have always been a healthy weight/slightly underweight, and quite active): Irritable Bowel Syndrome Fibromyalgia Anorexia (started when I was 10, I have been mostly recovered since I was 14) Depression Anxiety Panic Attacks Horrible mood swings (from suicidal to totally fine in a matter of minutes) Chronic constipation and bloating Acne HOWEVER, no one in my family has been diagnosed with celiac....am I wrong to think I have it??
  8. Don Wiss forwarded the following post to me: I know you have studied celiac disease for a long time. However, I need to disagree with the statement that fibromyalgia indicates celiac disease. It has been proven that persons with fibromyalgia have a decreased amount of serotonin and an increased amount of substance P in their spinal fluid. This indicates it is a result of not enough serotonin in the brain. Many of us who suffer from fibromyalgia do not have any problems with the digestive system at all. There are also PET scans that indicate that fibromyalgia patients have less dopamine activity in the brain indicating it truly is more a brain disease than celiac. The posters first point differentiating celiac disease from fibromyalgia on the basis of reduced serotonin in fibromyalgia may be unaware of the finding that celiac patients have fewer serotonin receptors on their platelets (1). Although I dont know about the spinal fluid, elevated levels of substance P have also been reported in the intestinal mucosa of celiac patients (2,3,4,5). A lack of digestive problems does not rule out celiac disease, as one of the foremost researchers in that area has reported that 50% to 60% of untreated celiacs are asymptomatic (6). Altered dopamine activity has also been reported in celiac disease (7). As regards the posters contention that it is really more a brain disease than celiac disease, the connections between celiac disease and altered brain perfusion (8), epilepsy without cerebral calcifications (9), epilepsy with cerebral calcifications (10, 11), a wide variety of neuropathic symptoms (12), and a number of psychiatric ailments (13), all counter the posters perspective. Finally, if (the poster) says that her fibromyalgia symptoms go away when gluten-free, and return when she eats gluten, I believe her. Sources: Chiaravalloti G, et al. Platelet serotonin transporter in celiac disease. Acta Paediatr. 1997 Jul;86(7):696-9. Sjolund K, et al. Enteropathy of celiac disease in adults: Increased number of enterochromaffin cells the duodenal mucosa. Gut. 1982 Jan;23(1):42-8. Sjolund K, et al. Duodenal endocrine cells in adult celiac disease. Gut. 1979 Jul;20(7):547-52. Bloom SR. Hormonal peptides of the gastrointestinal tract. Eur J Clin Invest. 1979 Apr;9(2 Pt 1):111-3. Domschke S, et al. Celiac sprue: abnormalities of the hormone profile of gastroduodenal mucosa. Scand J Gastroenterol Suppl. 1989;167:86-9. Marsh MN, et al. Morphology of the mucosal lesion in gluten sensitivity. Baillieres Clin Gastroenterol. 1995 Jun;9(2): 273-93. Review. Hallert C, et al. Psychic disturbances in adult celiac disease. III. Reduced central monoamine metabolism and signs of depression. Scand J Gastroenterol. 1982 Jan;17(1):25-8. De Santis A, et al. Schizophrenic symptoms and SPECT abnormalities in a celiac patient: regression after a gluten-free diet. J Intern Med. 1997 Nov;242(5):421-3. Cronin CC, et al. Celiac disease and epilepsy. QJM. 1998 Apr;91(4):303-8. Bernasconi A, et al. Celiac disease, bilateral occipital calcifications and intractable epilepsy: mechanisms of seizure origin. Epilepsia. 1998 Mar;39(3):300-6. Hernandez MA, et al. Epilepsy, cerebral calcifications and clinical or subclinical celiac disease. Course and follow up with gluten-free diet. Seizure. 1998 Feb;7(1):49-54. Hadjivassiliou M, et al. Clinical, radiological, neurophysiological, and neuropathological characteristics of gluten ataxia. Lancet. 1998 Nov 14;352(9140):1582-5 Hoggan, R. Absolutisms Hidden Message for Medical Scientism. Interchange. 1997; 28(2/3): 183-189.
  9. Hi, I recently was diagnosed as being gluten intolerant. I didn't go through with the biopsy to confirm as having Celiac Disease and the ttg-IgA test came up negative as well. Due to having classic neurological and digestive issues associated to gluten and being suggested by a doctor, I decided to go off gluten and began to see a massive difference. One of my major issues were terrible fatigue, an oversleeping problem were my cycle would 'magically' shift to morning hours disrupting daily activities. Apart from these, I have constant nausea, joint pain, nerve pain tending mostly to the right side of my body, severe memory and thinking problems ( brain fog - this has not improved yet being on a gluten free diet for about 2 months now) , anxiety attacks and chronic mild migraine headache. Exactly 2 weeks ago, I glutened myself accidently and within 2 days all my health concerns came back full swing. I want to know whether it takes this long for the symptoms to reside and whether there is any treatment available for the sleep condition as it severely affects my daily life and my career. My sister who is 14 ( I am 22 ) has similar issues and her doctor just diagnosed her with fibromyalgia. Could I be having fibromyalgia too induced by gluten..or could this be Non-celiac gluten sensitivity? Is there a solidified connection between the two?
  10. Celiac.com 12/30/2013 - Irritable bowel syndrome (IBS) and fibromyalgia syndrome (FMS) often occur together, and research indicates that many people with IBS plus FMS (IBS/FMS) might actually suffer from undiagnosed celiac disease. To better understand the potential connection between the two, a team of researchers recently conducted an active case finding for celiac disease in two IBS cohorts, one constituted by IBS/FMS subjects and the other by people with isolated IBS. The research team included L. Rodrigo, I. Blanco, J. Bobes, F.J. de Serres. They are affiliated with the department of Gastroenterology at the Central University Hospital of Asturias (HUCA), Celestino Villamil in Oviedo in the Principality of Asturias, Spain. For their study, the team included 104 patients (89.4% females), fulfilling the 1990-ACR criteria for FMS and the Roma III criteria for IBS classification, along with 125 unrelated, age and sex matched IBS non-FMS patients. All patients underwent the following studies: hematological, coagulation and biochemistry test, serological and genetic markers for celiac disease (i.e., tissue-Transglutaminase-2, tTG-2, and major histocompatibility complex HLA-DQ2/DQ8); multiple gastric and duodenal biopsies; FMS tender points (TPs); fibromyalgia impact questionnaire (FIQ), health assessment questionnaire (HAQ), short form health survey (SF-36), and visual analogue scales (VAS) for tiredness and gastrointestinal complaints. Overall results showed that IBS/FMS patients scored much worse values in quality of life and VAS scales than those with isolated IBS (p These seven patients showed substantial improvement in digestion and symptoms once they adopted gluten-free diets. The findings of this screening indicate that a significant percentage of IBS/FMS patients actually have celiac disease. These patients can improve symptoms and possibly prevent long-term celiac-related complications with a strict lifelong gluten-free diet. Source: Arthritis Res Ther. 2013 Nov 27;15(6):R201.
  11. Just wondering who else here deals with fibromyalgia. I was diagnosed with having fibromyalgia in 2006-ish. It got so bad that medications weren't helping (Neurontin and Cymbalta), and the ones the doctors would prescribe that did provide some relief I could not take because they made me too tired (Tramadol and Flexeril.) I was diagnosed gluten intolerant last week, and my doctor told me to adhere to a gluten free diet. He also switched my medication to Savella. I am currently 5 days into the titration pack, as well as 5 days gluten free. I have already noticed a difference in my pain levels, I'd say so far they are decreased by about half! I am astounded (and very, very happy and relieved!) So who else has fibromyalgia? I'd like to hear your stories.
  12. Celiac.com 01/14/2002 - Researchers led by Dr. Joel S. Edman of the Center for Integrative Medicine at Thomas Jefferson University Hospital in Philadelphia, Pennsylvania recently conducted a small and preliminary study that suggests that people with fibromyalgia may experience reductions in their symptoms if they eliminate one or more foods from their diet. The results were presented in October 2001 at the annual meeting of the American College of Nutrition in Orlando, Florida. In the study researchers reviewed the medical charts of 17 fibromyalgia patients who agreed to eliminate items such as corn, wheat, dairy, citrus, soy and nuts from their diets for at least two weeks. After the elimination of the foods, nearly half of the patients reported a significant reduction of pain, and 76% reported a reduction in other symptoms such as bloating, heartburn, headache, fatigue, and breathing difficulties. Two patients, however, reported an increase in symptoms. After the two-week period the patients were re-introduced to the foods one at a time every 2-3 days, and many of their symptoms returned. The most common problem-causing foods for the patients in the study were corn, wheat, dairy, citrus and sugar. Dr. Edman emphasized that the findings of the study are preliminary and more research in this area needs to be done.