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Showing results for tags 'pain'.
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Celiac.com 10/16/2024 - Celiac disease and fibromyalgia are two medical conditions that affect a significant number of people worldwide. While celiac disease is an autoimmune disorder triggered by gluten, fibromyalgia is a chronic condition characterized by widespread musculoskeletal pain. Despite being distinct conditions, celiac disease and fibromyalgia share similar symptoms, such as fatigue, gastrointestinal issues, and muscle pain. This study aimed to investigate whether there is a relationship between the two conditions, focusing on whether individuals with celiac disease are more likely to develop fibromyalgia. Celiac Disease Overview Celiac disease is a disorder that causes the immune system to react negatively to gluten, a protein found in wheat, barley, and rye. When people with celiac disease consume gluten, their immune system attacks the small intestine, causing damage and preventing the absorption of nutrients. Celiac disease affects roughly 1% of the population, though it is more common in certain genetic groups. Symptoms of celiac disease vary and can include gastrointestinal distress, anemia, osteoporosis, skin conditions, and neurological symptoms. In many cases, people with celiac disease experience symptoms beyond the digestive tract. These extraintestinal manifestations, such as joint pain, chronic fatigue, and depression, can often resemble fibromyalgia symptoms, making it difficult to differentiate between the two conditions. Fibromyalgia Overview Fibromyalgia is a chronic condition that affects the musculoskeletal system and causes widespread pain, tenderness, and fatigue. It is estimated that fibromyalgia affects 2-5% of the population, predominantly women. Common symptoms of fibromyalgia include pain, morning stiffness, non-restorative sleep, and cognitive difficulties, often referred to as "fibro fog." Interestingly, many people with fibromyalgia also experience gastrointestinal issues, such as irritable bowel syndrome, which further blurs the line between the two conditions. This has led researchers to explore whether there is a deeper connection between fibromyalgia and other autoimmune disorders, such as celiac disease. Study Design and Methods This cross-sectional study examined 60 adult patients diagnosed with celiac disease based on criteria established by the American College of Gastroenterology. The study participants were evaluated for fibromyalgia symptoms using a series of diagnostic tools, including the Widespread Pain Index, the Symptom Severity Scale, and the Fibromyalgia Impact Questionnaire. These tools measure both the presence and severity of fibromyalgia in individuals. The study sought to determine whether there was a significant correlation between the presence of celiac disease and the development of fibromyalgia. The researchers also analyzed the relationship between specific celiac disease biomarkers, such as tissue transglutaminase antibodies and endomysium antibodies, and the likelihood of developing fibromyalgia. Results and Findings The study found no significant relationship between the clinical presentation of celiac disease and the likelihood of developing fibromyalgia. Similarly, the results showed no correlation between the severity of celiac disease and the presence of fibromyalgia. However, the study did find that individuals with positive antibody tests, such as tissue transglutaminase antibodies, were more likely to have fibromyalgia compared to those who did not test positive for these antibodies. This suggests that the immune response triggered by gluten in celiac disease may play a role in the development of fibromyalgia. Although the findings were not statistically significant in some areas, the study highlights the importance of recognizing the overlap between celiac disease and fibromyalgia symptoms. Given that both conditions share many similar symptoms, patients with celiac disease who experience extraintestinal manifestations, such as chronic pain and fatigue, may benefit from being evaluated for fibromyalgia. Discussion and Implications The potential link between celiac disease and fibromyalgia raises important questions for healthcare providers. Currently, the diagnosis of fibromyalgia is often made through exclusion, meaning that other conditions, such as autoimmune disorders, must be ruled out first. However, this study suggests that individuals with celiac disease, particularly those with positive antibody tests, may be more prone to developing fibromyalgia. The immune system's response to gluten in individuals with celiac disease could trigger or exacerbate the chronic pain and sensitivity seen in fibromyalgia. This connection suggests that treating one condition may help alleviate symptoms of the other. For instance, maintaining a strict gluten-free diet may not only improve gastrointestinal symptoms but also reduce the severity of fibromyalgia symptoms in celiac patients. Furthermore, the study underscores the importance of early diagnosis and treatment for both conditions. Since fibromyalgia is notoriously difficult to treat, identifying patients with celiac disease who may also have fibromyalgia could allow for more targeted therapies. Simultaneously managing the gastrointestinal symptoms of celiac disease and the musculoskeletal pain of fibromyalgia may lead to better overall outcomes for patients. Conclusion: What This Means for People with Celiac Disease This study's findings are particularly meaningful for individuals with celiac disease. Since celiac disease and fibromyalgia share many similar symptoms, recognizing the potential for co-occurrence could lead to earlier diagnoses and more effective treatments. For those with celiac disease, staying vigilant about extraintestinal symptoms, such as chronic pain, fatigue, and depression, may help detect fibromyalgia earlier. By working closely with healthcare providers to manage both conditions, people with celiac disease can achieve better symptom control and overall quality of life. The study also highlights the need for further research to explore the connection between these two conditions. While the results are not definitive, they provide a starting point for future studies that could lead to more comprehensive treatment approaches for individuals affected by both celiac disease and fibromyalgia. Read more at: hcplive.com
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Hello! I would like to preface this by saying I’m experiencing a lot of brain fog and gluten ataxia while writing this so I really apologize if this post seems disorganized. Also I’m a 24 year old woman to give this post some context. For a very long time now I’ve always had very very bad digestive issues that have only gotten worse over time. I was diagnosed with POTS when I was 14 and my doctor always told me my gut problems are from my pots. I also was diagnosed with Ankylosing Spondylitis at age 22. But I looked into celiac and have read so many articles and a few books about it and I realized I had so many symptoms in common with celiac. So I decided to cut gluten out of my diet and a week later my entire life changed. I didn’t have any digestive problems at all, my brain fog was cleared, I no longer felt uncoordinated, my arthritis was so much better, and all my pots symptoms vanished. It was incredible. But about a month and a half later I started feeling symptoms I’ve never felt before. I constantly felt nauseous and hungry at the same time, my head is constantly hurting, my digestive issues are worse than they’ve ever been, I’m constantly fatigued, my arthritis is so bad and crippling, my anxiety and depression are back and I have panic attacks every night and really struggle falling asleep. It’s complete and utter hell. I share a kitchen with my family and I do everything in my capacity to make sure my food doesn’t get cross contaminated. I’ve completely cut out dairy recently but it doesn’t seem to make a big difference. I can no longer function especially with my gluten ataxia and brain fog. Is this normal for symptoms to reappear in the healing process? I do everything in my power to make sure I don’t get anything cross contaminated and double triple check ingredients lists to make sure it doesn’t contain gluten or is processed in any facility with gluten. I don’t even eat at restaurants and cook everything at home. I’ve also checked medications, skincare products, and vitamins and supplements to make sure I’m not getting gluten from that.
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I was diagnosed with Celiac Disease back in October 2009. I seem to be OK as long as i stick to a strict gluten free regiment which can be challenging at times. It is difficult to know if a product is truly gluten free when its labeled as such. I only buy gluten free labeled products and i'm still having problems with my stomach, specifically pasta. In the past year i switched from Tinkyada brand pasta to Barilla. I had heard and read that the taste and consistency of the Barilla gluten free product was not much different from traditional pasta. Being Italian, we typically have pasta every Sunday so this was great for me. In the past few months my body has been rejecting the Barilla gluten free pasta and i'm not sure if its due to a cross contamination issue. I'm tired of feeling sick and being in pain and would like to get to the bottom of this ongoing problem. Has anyone else had any problem with the Barilla gluten free brand?
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Constant low back, abdominal and pelvic pain!
Aussienae posted a topic in Coping with Celiac Disease
I have spent endless hours researching and reading this forum. Thank you everyone for sharing your stories! I was diagnosed in mid Feb 22 with positive blood. The hospital said to go gluten free asap as my levels were very high and did not need to be confirmed in biopsy. Im 3 months in and some things have cleared up, symptoms that I didnt even realise were related (sore feet and hands in the morning, dry mouth and eyes) but I have ongoing constant dull lower back and abdo pain, its so low its pretty much in my pelvis/groin (similar to menstrual pain) Weirdly its not there in morning when I get up but appears around mid day even if i dont eat. Its the same every day, although somedays it can be more painful to the point I take pain relief. I also have the feeling my bowel is full but I dont have C or D and am regular I take probiotics, digestive enzymes, B complex and magnesium. Ive had CT with contrast (last December) and more recently a pelvic ultrasound. Last blood test my Ferritin was slightly low and my CRP is always high. But all other tests normal, except for celiac of course. Any suggestions???- 65 replies
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Celiac.com 10/04/2023 - Neuropathic pain is a challenging condition with complex diagnostic and treatment issues. Although we've made progress in understanding and treating neuropathy, many aspects of this condition remain unclear. One intriguing aspect of neuropathy is that it can cause both sensory loss and pain, despite being driven by abnormal nerve signaling. Voltage-gated sodium channels, crucial for proper nerve function and communication, can go awry in neuropathy, triggering hyperexcitability and pain. Even with a number of diagnostic tools available, neuropathy patients often face delays in getting an accurate diagnosis for the underlying cause. The research team included Giustino Varrassi, Stefano Tamburin, Panagiotis Zis, Vittorio A. Guardamagna, Antonella Paladini, and Martina Rekatsina. They are variously affiliated with the department of Pain Medicine, Paolo Procacci Foundation, Rome, ITA; the Department of Neurology, University of Verona, Verona, ITA; the Department of Neurology, University of Cyprus, Nicosia, CYP; the depertment of Anesthesia, IEO, Milano, ITA; the Department of MESVA, University of L'Aquila, L'Aquila, ITA; and the department of Pain Management, Basildon University Hospital, London, GBR. The prevalence of pain varies depending on the type of neuropathy, with chronic idiopathic axonal polyneuropathy being one of the most painful forms. In fact, more than half of patients with this condition experience pain. A newer consideration in the world of neuropathy is gluten neuropathy, a type of peripheral neuropathy. Detecting this condition may require specialized tests, like electrochemical conductance testing of the hands and feet to assess sudomotor dysfunction, aka sweat gland innervation. For people with confirmed gluten sensitivity or celiac disease, gluten neuropathy is a common neurological complication, and adopting a gluten-free diet can help alleviate some of the symptoms. In Greece, a neuropathic pain registry was established in 2014 to collect real-world data from neuropathic pain patients. While still in its early stages, this registry has already provided valuable demographic and treatment information. Interestingly, the data suggests that many patients are not receiving optimal prescriptions and recommended interventional procedures. Many Greek pain clinics are working to raise awareness among people who suffer from neuropathic pain, and to encourage their participation in this crucial registry, which could help to improve the understanding and management of neuropathic pain more broadly. Read more in Cureus.com
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Hello All, I was recently diagnosed with Celiac a little over a month ago after losing 25 pounds, excruciating abdominal pains & extreme anxiety. In my blood work they also found a pretty bad Vitamin D deficiency (17, when the lowest normal level is 30). I am currently on a 50,000 IU/week pill for this. After about 3 weeks of a gluten free diet, the abdominal pains have pretty much subsided. However, it seems I have developed pain on the right side of my body only as well as other sensations such as pins & needles/numbness. I was recently in the ER after I felt numbness down the whole right side of my body, but my brain CT & MRI came back normal. I am now scheduled to go the neurologist for a possible lumbar puncture & spinal MRI to try and rule out MS all together. I have been told that Celiac & Anxiety can cause weird pains and different for everyone. I was just wondering if anyone else has experienced a one sided pain or sensations previously mentioned as I feel like I am going crazy. Is there any other supplements people have taken to help as well. Any input will greatly be appreciated. Thanks
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Celiac.com 08/22/2022 - Researchers present a case series of patients with chronic low-back pain and spondyloarthritis related features, who respond well to the gluten-free diet, despite celiac disease being ruled out. Currently, people who suffer from chronic low-back pain, with spondyloarthritis related features, are treated with immunosupresive drugs for both diseases. Prior studies have shown that gut involvement is a well-known association of spondyloarthritis, but limited to a few disorders, such as inflammatory bowel disease. A team of researchers recently set out to test the hypothesis that non-celiac gluten sensitivity is associated with chronic low-back pain related to spondyloarthritis, and that treatment with a gluten-free diet would be beneficial in certain patients. Researchers Carlos Isasi, Alexander Stadnitsky, Fernando Casco, Eva Tejerina, Ana Royuela, Blanca Esteban, and Natalia Fernandez Puga present results from a case series of patients with chronic low-back pain, spondyloarthritis related features, and positive response to a gluten-free diet, despite celiac disease being ruled out. The team's retrospective case report covers 110 patients from a tertiary hospital rheumatology clinic, which specializes in treating chronic pain and gluten sensitivity. All patients suffered from refractory low-back pain and spondyloarthritis features, and all patients followed a gluten-free diet despite celiac disease being ruled out. The team sought a measure of improvement called, "demanding improvement," which they defined based on the achievement of at least one of the following improvements: Asymptomatic status, remission of chronic low-back pain, returning to normal life, returning to work, changing from confinement to bed/wheelchair to being able to walk, returning to self-sufficiency for hygiene and personal care, discontinuation of opioids. Average patient age at low-back onset pain was 30 years old, while the average disease duration was 15 years. Nearly eighty percent of the patients experienced improvement, while nearly seventy percent achieved demanding improvement. Average duration of a gluten-free diet in patients with demanding improvement was five years. A total of 56 out of 69 patients with demanding improvement ingested gluten, with 54 of those experiencing clinically worse symptoms, considered to have non-celiac gluten sensitivity. Two main factors for making demanding improvement were oral aphthae and having a relative with celiac disease. Nearly four out of five patients retrospectively classified with axial spondyloarthritis showed demanding improvement. Nearly all patients with uveitis showed demanding improvement. Meanwhile, well over half of patients with fibromyalgia showed demanding improvement. The team's data support the hypothesis that non-celiac gluten sensitivity is associated with chronic low-back pain related to spondyloarthritis, and a gluten free diet has a therapeutic benefit for some patients. These results are important, because the could point the way to using a positive response to a gluten-free diet in people with non-gluten sensitivity to help improve chronic low-back pain related to spondyloarthritis in those patients. Read more in Med Hypotheses. 2020 Feb 28;140:109646 The researchers in this study are variously affiliated with the Rheumatology Department of Hospital Universitario Puerta de Hierro, Majadahonda, Madrid, Spain; Family Medicine at Hospital Universitario Puerta de Hierro, Majadahonda, Madrid, Spain; the Pathological Anatomy Department of Unilabs, Madrid, Spain; the Pathological Anatomy Department of Hospital Universitario Puerta de Hierro, Majadahonda Madrid, Spain; the Biostatistics Unit, Instituto de Investigación Sanitaria Puerta de Hierro-Segovia de Arana, Majadahonda, Madrid, Spain; the Asociación de celíacos y sensibles al gluten de Madrid (Association of Celiacs and Gluten-Sensitives of Madrid, Spain; and the Digestive Medicine Department of Hospital Universitario Puerta de Hierro, Majadahonda, Madrid, Spain.
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Celiac.com 12/07/2021 - Fibromyalgia frequently occurs among those with celiac disease, but no published study to date provides prevalence data. However, one survey found that in cases of celiac disease that were initially misdiagnosed by physicians, 9% were initially diagnosed as having fibromyalgia(1,2,3). Fibromyalgia is defined as a chronic widespread pain lasting more than three months in all four body quadrants with pain present in at least 11 of 18 specific tender point sites. Fibromyalgia does not cause joint pain or swelling, as arthritis does, but produces pain in soft tissues around joints, in skin, and in organs throughout the body. A large variety of symptoms and syndromes are usually associated with fibromyalgia. These include fatigue, stiffness (especially upon awakening), disturbed sleep, dry mouth, dry eyes, dry skin, headaches, frequent urination, cold sensitivity, mental fog, dizziness, irritable bowl syndrome, restless legs syndrome, and more. Pain location and severity, as well as the severity of symptoms and syndromes, can vary in an individual from day to day. The characteristics of fibromyalgia differ widely from individual to individual. The condition can be long-term and extremely debilitating, affecting quality of life and limiting one’s employment options. People with chronic fatigue syndrome suffer many of the same symptoms of fibromyalgia suggesting a possible relationship(4,5). There is no laboratory test for fibromyalgia. Diagnosis is a process of ruling out other possible conditions through medical history and exam, and, finally, evaluating the 18 tender points. The number of tender points is found by a skilled examiner applying pressure to the tender points and the patient identifying whether pain is present upon pressure. As the number of tender points can vary from day to day, and the test relies on the skill of the examiner and the patient’s pain perceptions, rheumatologists are recognizing the shortcoming of this type of diagnosis. In fact, the number of tender points does not even correlate to the severity of the pain experienced by fibromyalgia patients. There is a view developing that those meeting the 11 out of 18 tender point criteria simply fall on one end of a spectrum of fibromyalgia-like chronic widespread pain. Some 80% of those diagnosed with fibromyalgia are women. Across different countries, the prevalence rate of fibromyalgia is 0.5% to 5%. Chronic widespread pain, where the criteria of having at least 11 tender points may not be met, affects 7.3% to 12.9% of the general population6 . This means there are many more people who suffer fibromyalgia-like pain and symptoms without technically being diagnosed as having fibromyalgia. This discussion is meant to include those people, as well, so when fibromyalgia is mentioned here, it will refer to the pain suffered by all with fibromyalgia-like symptoms regardless of the number of tender points. Medical science is still grappling over the issue of just what is the cause and nature of fibromyalgia. First thought to be an inflammation of the muscles and soft tissue, studies have found no inflammation and normal muscle response in patients(7,8). Now most researchers suspect that abnormalities of the brain and central nervous system are responsible for the disorder. Initiation or triggering of fibromyalgia has been attributed to injuries, stress, infections, or toxins, and frequently accompanies a number of autoimmune diseases. Treatment of fibromyalgia in the world of conventional medicine is limited to over-the-counter and prescription pain relievers including analgesics, anti-inflammatory medications, narcotics, and pain patches. Anti-depressants, muscle relaxants, anti-spasm and anti-convulsive medications, sleep medications and sedatives, and some newer neurological drugs are additionally prescribed. Therapies also include physical rehabilitation and nutrition. The effectiveness of these treatments varies widely among individuals, and none offers any potential of a cure. Many people turn to alternative medicine for remedy when conventional medicine fails to provide relief. Magazine and newspaper ads and Internet Web sites target the desperate, and sufferers may be more likely to be relieved of their money than their pain. My Symptoms I don’t know how many tender points I have had or may have had and never cared, but I have fibromyalgia-like chronic widespread pain and symptoms that became so bad I had to quit my job a few months ago. I am a self-diagnosed celiac, gluten-free for over six years. Over a year ago I developed a pain in my left shoulder which eventually shifted to the right shoulder. Then the pain moved into my legs, especially the right leg. I was fatigued. My mouth and throat were dry at night. I had to urinate frequently. I felt colder than normal. My right leg ached when lying in bed. I was extremely stiff in the morning. Bowel discomfort was already present from celiac disease, but fibromyalgia may have made it worse. There was often swelling in my ankles and feet. It became painful to walk or put on a shirt or a coat. And the symptoms continued to worsen, affecting both arms and shoulders, both legs and the right hip. Any small chore or physical activity became a challenge. Turning the steering wheel of my truck hurt. Grocery shopping was an absolute dread. I suspect my condition may have been triggered by years of exposure to chemicals and cleaning solvents present in the environment at my job in the automotive industry— chemicals I did not use—but they were used in quantity adjacent to my work area. This would not be the first time chemicals or toxins caused fibromyalgia-like pain. Seven years ago I underwent surgical repair of a right inguinal hernia (a tear in the tissue near the groin allowing the intestine to protrude beneath the skin), followed six months later by a repair of a left inguinal hernia. In each case, I was given an intravenous antibiotic, local anesthetic and sedation. After the first surgery, I experienced a sharp pain in the right leg that made it too painful to even move the leg or bend the knee. The pain died down after a day, but it took over a month to fully regain movement in the right leg without pain. After the second surgery, I did not experience any leg pain, but I did experience a strange dry, metallic cotton-like sensation in my mouth lasting more than a day. These two sensations would later come back to haunt me when I engaged in a self-experiment. After diagnosing myself with celiac disease, I wondered if an overabundance of bacteria could be responsible for continuing bowel discomfort. I wanted to try an antibiotic to see if it could provide relief. On the internet, I found that over-the-counter Pepto-Bismol tablets (bismuth subsalicylate) have antibiotic properties. It has been used to treat microscopic colitis and, in combination with other antibiotics, helicobacter pylori infection. Label instructions state that up to eight doses of Pepto-Bismol may be taken in a 24 hour period (for adults, a dose is two tablets.) The treatment for microscopic colitis is eight tablets a day for eight weeks, and I decided to try this treatment. It seemed safe enough. No warnings, no adverse reactions were indicated. Millions of people use Pepto-Bismol without any problems. From the beginning, Pepto-Bismol made me uncomfortable. I could only tolerate six tablets a day, instead of eight. After one week, I began to experience stiffness in my legs in the morning. At the end of two weeks I felt so bad that I decided to end the experiment—but it was too late. Even after stopping, the stiffness in the legs continued to worsen. A few days later, I experienced both the exact same intense pain in my right leg plus the strange, dry metallic cotton-like mouth sensation I had experienced after the hernia surgeries, only much worse. I was bed-ridden and unable to walk or go to work for three days. The pain was at first localized to my right leg, my right wrist, and a finger which had received stitches for a cut when I was seven years old, but after a few days the pain began to spread out. Eventually the pain spread to both shoulders and both legs and looked very much like fibromyalgia. The pain finally remained primarily in the right leg. Other symptoms were frequent urination, night chills, and night sweats that left my sheets soaked. After four months, the pain and symptoms finally went away, and I resumed “normal” activities hoping never to experience such pain again. In the case of the surgery and of the Pepto-Bismol, the trigger of the pain was clear and certain. Two weeks of Pepto-Bismol exposure resulted in four months of pain. I can only speculate on if and what chemical exposure may have caused my current condition, how long I may have been exposed to the chemicals, and have no idea how long the current symptoms may last. The question is why am I overly sensitive to these chemicals and drugs, and exactly what is the mechanism that causes fibromyalgia pain? Medical science offers no answers at this time. Therefore, it falls on me to try to come up with a reasonable hypothesis to explain fibromyalgia, and, perhaps, even find a treatment. What follows is a hypothesis which I believe successfully does just that. There are some assumptions I have to make. I have to assume that the nature of the chronic widespread pain I feel is similar to the pain experienced by other fibromyalgia sufferers. I can only relate to my own pain. I cannot get into the heads of others. I am also assuming that whatever mechanism is causing my own pain is the same mechanism that causes pain in most, if not all, fibromyalgia victims. Fibromyalgia: Neuropathy or Inflammation? Medical science believes abnormal brain and central nervous system response is behind fibromyalgia pain. I do not. My pain exists at specific body locations and intensifies with certain stretching and extension movements of the limbs. Intuitively, it feels to me like multiple local inflammations. If the central nervous system or brain is generating abnormal pain signals, then why is the pain not coming from points everywhere in my body instead of from specific locations and specific limb movements? Additionally, why would I have swelling in my ankles and feet? Finally, at times, I hear and feel “squishing” at the sites of pain when I move my limbs. The brain is certainly not creating this “squishing”. All signs point to a physical abnormality, and if inflammation is not present in the muscle tissue, then it must be somewhere else. In a review of medical publications, I first became intrigued by a reference to two Spanish sisters with alpha1- antitrypsin (AAT) deficiency and fibromyalgia. The liver produces alpha1-antitrypsin, an important anti-inflammatory and proteinase inhibitor that circulates in serum impregnating most body tissues. A study found in vitro that a low level of alpha1-antitrypsin induces human monocytes (white blood cells) to release pro-inflammatory substances. In those with AAT deficiency, a genetic flaw prevents liver cells from secreting alpha1-antitrypsin, and it builds up within the liver instead of being circulated. The risk of liver and lung disorders is increased in AAT deficient patients The two Spanish sisters underwent AAT replacement therapy, and, strikingly, their fibromyalgia symptoms vanished. During a worldwide commercial shortage of AAT replacement therapy, their therapy was halted for 4-6 months a year during each of 5 years of treatment. Each time therapy was halted and resumed, their fibromyalgia symptoms reappeared and vanished. This led their doctors to propose a hypothesis that fibromyalgia may be related to an imbalance between inflammatory and anti-inflammatory substances(9,10,11). A review of AAT deficiency websites and discussion sites did not provide any prevalence data for fibromyalgia among AAT deficient patients nor was fibromyalgia a significant topic of discussion, suggesting fibromyalgia requires more than just AAT deficiency. Low levels of AAT are found in patients testing positive for human immunodeficiency virus (HIV). Studies have found rates of fibromyalgia, based on tender points, in HIV positive patients at 11% and 29%(12,13,14,15). Interestingly, low levels of AAT were found in a significant percentage of a group of children from an industrial air pollution area compared to children from an unpolluted area. AAT levels were restored to normal in most of the children after a year and a half16. This suggests that chemicals in the environment may have an adverse affect on liver function, in turn, reducing AAT production, in turn, increasing the risk of developing fibromyalgia symptoms. At this point, my attention turned to liver function. Could abnormal liver function be a factor contributing to fibromyalgia? Liver dysfunction of any type in celiac disease at time of diagnosis has been reported in up to 42% of adults and 54% of children. The most common irregularity is a raised level of liver transaminase enzymes (released by damaged liver cells) which usually normalizes on a gluten-free diet. Chronic hepatitis, fibrosis, cirrhosis, fatty liver, primary biliary cirrhosis, primary sclerosing cholangitis, and autoimmune hepatitis have all been found present in celiac disease patients, usually achieving remission with treatment and a gluten-free diet. Increased intestinal permeability and gluten toxicity have both been proposed as mechanisms leading to liver dysfunction(17,18,19). The liver plays a number of crucial roles in maintaining the body. It regulates serum levels of substances such as glucose and cholesterol which it also synthesizes. It synthesizes and secretes numerous blood proteins. Bile, necessary for the digestion of fats, is also synthesized and secreted by the liver. The liver stores glucose, minerals such as copper and iron, fat soluble vitamins (vitamins A, D, E, and K), vitamin B12, folate, and other substances. Through processes of purification, transformation and clearance, the liver removes harmful substances from the blood (such as ammonia and toxins), breaking them down or transforming them into less harmful compounds. Most hormones and ingested drugs are metabolized by the liver into either more active or less active products. Many toxins or chemicals inhaled, digested, or absorbed through the skin are fat soluble, and it is the liver that can transform fat soluble toxins into water soluble products allowing them to be eliminated by the kidneys. The liver also filters out dead cells, various debris, and microorganisms including bacteria, viruses, fungi, and parasites. Pre-existing liver disease or dysfunction can compromise liver function causing hormonal imbalances, blood protein deficiencies, and inhibiting the liver’s ability to remove or transform toxins. The very same chemicals and toxins the liver is attempting to remove may cause liver dysfunction or damage creating a vicious cycle where the liver is unable to fight back allowing the chemicals and toxins to further accumulate and do still more harm. It is interesting that fibromyalgia researchers to date have not published anything on the relationship between liver function and fibromyalgia. Yet there is strong reason to suspect such a relationship. A relationship to alpha1-antitrypsin, synthesized and secreted by the liver, has already been discussed. Growth hormone deficiency has been linked to at least a subset of fibromyalgia patients. Some 30% of fibromyalgia patients have a low level of insulin-like growth factor-1 (IGF-1) (20). As it happens, IGF-1 is produced by the liver. Glutathione depletion has been suggested as factor in chronic fatigue syndrome, and by implication, therefore, a possible factor in fibromyalgia(21). Glutathione is most concentrated in the liver where it is both produced and stored. Thyroid hormone disorders have also been linked to fibromyalgia. In addition to the thyroid gland, the liver plays an important role in the regulation and circulation of thyroid hormones. And, of course, the liver removes chemicals and toxins, a suspected trigger of fibromyalgia. Thyroid hormones are a key to stimulating the body’s many metabolic activities. They increase protein synthesis in virtually every body tissue and increase oxygen consumption, and they are essential for normal growth, development, and the regulation of cellular energy metabolism. Neuromuscular complaints are extremely common in patients with thyroid dysfunction(22). There is a high prevalence of thyroid disorder among celiac disease patients(23). Thyroid function was tested in a small group of fibromyalgia patients. While basal thyroid hormone levels were in the normal range, when injected with thyrotropin-releasing hormone (TRH), the fibromyalgia patients responded with a significantly lower secretion of thyrotropin and thyroid hormones24. One chiropractic doctor, Dr. John C. Lowe, has been studying the thyroid status in fibromyalgia patients, coming to the conclusion that some form of thyroid disease may be present in up to 89% of fibromyalgia patients. He has been administering therapeutic dosages of T3 to his fibromyalgia patients who test normal for thyroid status with up to 75% showing improvement in fibromyalgia symptoms and theorizes these normal thyroid fibromyalgia patients may have “thyroid hormone resistance(25,26).” The thyroid gland secretes the hormones thyroxine (T4) and tri-idothyronine (T3) with T3 secreted in very small quantities compared to T4. T3, however, is the more active hormone, with ten times more T4 needed to produce the same physiological effect. Since T4 is the inactive hormone and the major product of the thyroid gland, it needs to be converted into the active T3 hormone. The liver accounts for a large percentage of T4 to T3 activation. Conversion of T4 to rT3 and T3 to T2, both inactive metabolites, also takes place in the liver. T3 and T4 are not water soluble, and, in order to circulate in the blood, must bind with plasma proteins. These binding proteins consist of thyroxin-binding globulin, thyroxin-binding prealbumin, and albumin, all of which are produced in the liver. The binding proteins also serve to protect T3 and T4 permitting a storage pool of hormones which can last for many days. More than 99% of the thyroid hormones are bound to these proteins, and it is the small free unbound hormone fraction that accounts for the biological activities of the hormones. Plasma concentrations of free T3 and T4 are held at a steady state, exposing tissues to the same concentrations of free hormone. Normal thyroid function is dependent on both a normally functioning thyroid and liver. Dysfunction in the liver can affect thyroid function, and vice versa(27,28). Glutathione is a tripeptide composed of the amino acids glutamate, cystine, and glycine and participates in numerous cellular reactions. It functions in many roles. As an antioxidant, it scavenges free radicals and other reactive species, removes hydrogen and lipid peroxides, and prevents oxidation of biomolecules. It acts in many metabolic activities, including storage and transport of cysteine. And it serves in the regulation of signal transduction and gene expression, DNA and protein synthesis, proteolysis, cell proliferation and apoptosis, cytokine production and immune response, mitochondrial function, and more. Glutathione, most highly concentrated in the liver, is a key to the liver’s ability to remove toxic substances where it is required in the process of converting fat-soluble substances into excretable water-soluble products. Liver disease can both cause and result from a glutathione deficiency. Intravenous infusions of glutathione are being used in therapy for chronic fatigue syndrome and fibromyalgia(29,30). Liver dysfunction and toxic substances appear to be involved in fibromyalgia, but what causes fibromyalgia pain and where is the pain centered? An answer to this question was inspired by a worsening of my own fibromyalgia pain symptoms. After quitting my job, my symptoms seemed to slowly improve. However, suddenly everything went downhill. The pain in my right leg and hip was especially bad. Lying in bed only intensified the pain, and it was impossible to find a comfortable position for my right leg. After keeping the right leg straight in one position for any length of time, the slightest motion would cause the hip joint to pop accompanied by a brief, sharp, excruciating pain at the hip joint. I saw this new pain and discomfort as a valuable opportunity and clue for solving the mystery of fibromyalgia pain. I realized that whatever was causing this sharp hip pain had to be related to the source of fibromyalgia pain. It’s Not the Muscle, It’s the Fat Up until the sharp hip pain, I felt my pain was centered in the muscles. But now, here was a pain specifically located in the hip joint. Joint popping results from the rubbing motion of uneven surfaces in the joint. Now if lying in bed for a time caused a slight gap between hip joint surfaces to open, inflamed and sensitive tissue in the immediate area could work its way into the gap. Then a slight leg movement would pop the joint, close the gap, and pinch the inflamed tissue causing the brief sharp pain. The question then becomes, just what is this inflamed tissue? That sent me to internet to find info on joint anatomy and joint pain. I came across a key paper published in December 2004 that seemed to provide the answers to all questions, “Adipose tissue at entheses: the rheumatological implications of its distribution. A potential site of pain and stress dissipation?”(31) Adipose tissue is fat tissue, composed of fat cells or adipocytes and is often mixed with fibrous tissue. Entheses are the attachment points on either side of a joint where muscle tendons and ligaments connect to the bone. Entheses exist everywhere joints exist, from the neck and shoulders down to the toes. The December 2004 paper is an anatomical study of entheses which found, “Adipose tissue was present at several different sites at numerous entheses. Many tendons/ligaments lay on a bed of well vascularised, highly innervated, “insertional angle fat.” Fat filled, meniscoid folds often protruded into joint cavities, immediately adjacent to attachment sites. The adipose tissue was not simply a collection of fat cells alone but it also contained nerves and blood vessels—with the proportions varying according to site. Thus ‘‘insertional angle fat’’ was generally more richly innervated than endotenon fat and some regions of fat may be more susceptible to inflammation than others by virtue of their greater blood supply.” (Insertional angle fat is found in the angle between tendon or ligament attachments to the bone.) The discovery of this paper was a moment of great enlightenment. Inflamed, highly innervated fat tissue protruding into and being pinched by a gap in the hip joint surely caused that sharp pain I experienced. Inflamed, highly innervated fat tissue at entheses fits in well as being the site and cause of all fibromyalgia pain. Indeed, the locations of all my fibromyalgia pain sites centered and radiated from the vicinity of either side of the joint, exactly where entheses are located. Any motion tugging on the tendons and ligaments at those sites could irritate sensitive nerves of inflamed adipose tissue producing pain. Thus fibromyalgia is not an abnormality of the brain or central nervous system. It is not an inflammation of muscle tissue. Fibromyalgia is fully explainable as an inflammation of innervated adipose tissue. And what could cause this inflammation? Fat soluble toxic substances, possibly in the presence of an abnormally low liver production level of anti-inflammatory proteins. Numerous potentially harmful chemicals and toxins are fat soluble and end up accumulating in adipose tissue where they can persist for many years or even a lifetime. Toxic fat soluble chemicals may be inhaled, ingested, or absorbed through the skin. Such chemicals include dioxins, PCBs, pesticides, petroleum distillates, hydrocarbons, metals, chemicals used in cleaning solvents and plastics, drugs, and even personal care products. Recent research has revealed that adipose tissue functions much more than just as a storage depository for fat. Fat cells or adipocytes are now considered part of one big adipose tissue endocrine organ secreting hormones and a wide range of proteins involved in inflammation and the immune system which have been collectively named “adipokines”. Taken together with the fact that nerves and blood vessels run through adipose tissue, it should not be unexpected that toxic substances accumulating in adipose tissue could give rise to an inflammatory response in adipocytes(32,33,34). With a dysfunctional or damaged liver, as might be present in celiac disease, the inability of the liver to remove harmful fat soluble substances increases the risk of accumulating toxic substances making one more susceptible to inflammation of adipose tissue and fibromyalgia. Increased intestinal permeability or leaky gut provides an additional pathway for harmful substances, undigested food proteins, and toxins to reach and accumulate in adipose tissue. Irritable bowl syndrome (IBS) caused by bacterial overgrowth is common in fibromyalgia, and bacterial overgrowth is a cause of leaky gut(35). Leaky gut is also present in celiac disease. It is now clear why celiac disease may leave one at higher risk for developing fibromyalgia. Women make up 80% of fibromyalgia patients. Why? The answer may lie in a relationship between estrogen, adipose tissue, and xenobiotic estrogens. Adipocytes express receptors that bind to estrogen. There are six known forms of estrogen receptors classified as ER-alpha and five forms of ER-beta1 thru ER-beta5. Fat deposition in females differs from fat deposition in males. Research has found that the type and number of estrogen receptors expressed in adipose tissue differs at different body locations. The concentration of estrogen in conjunction with adipocyte receptor type and number seems to control where fat is deposited in the body. Estrogen treatment in males can alter male fat distribution into female fat distribution. In addition, females express a significantly greater number of adipocyte estrogen receptors than males(36,37). Many of the same fat soluble toxic chemicals mentioned above have properties that mimic estrogens and are called xenobiotic estrogens or xenoestrogens. These xenoestrogens can bind to estrogen receptors and wreck havoc in the body. Exposure to xenoestrogens is believed to cause some breast cancers. Because females have a much greater number of adipocyte estrogen receptors than males, there is much more opportunity for these xenoestrogens to bind with adipocytes in females than in males. Binding with xenoestrogens may cause an inflammatory response in adipocytes. Additionally, fibromyalgia is more likely to occur in women after menopause, when estrogen levels drop. The lower estrogen levels mean there are more free adipocyte estrogen receptors available and less competition for them between estrogen and xenoestrogen, increasing the likelihood of adipose tissue inflammation and fibromyalgia in women after menopause. Thus it is the increased number of adipocyte estrogen receptors which may account for the higher incidence of fibromyalgia in women. Also, any condition which lowers estrogen levels in women (or men) might increase the risk of fibromyalgia(38,39,40,41). Preventing, treating, or curing fibromyalgia would seem to first require the elimination of exposure to whatever toxic or harmful substances may be causing inflammation of the adipose tissue. This may be very difficult to achieve if one has little or no knowledge of which substances one is exposed to or may be contributing to the problem. Is the substance in the air, water, at work—at home? Are they emitted by a factory or could the be chemicals used on the job or for a hobby? Is it a cleaning product or solvent, adhesive, a garden product or pesticide, a personal care product, a drug or medication, or a food? Could it come from a plastic product? Did a bacterial or viral infection seem to trigger the fibromyalgia? Was it inhaled, ingested, or absorbed through the skin? Everything must be considered. One study found that a reduced use of cosmetics in a group of women with fibromyalgia significantly improved their symptoms over a two year period(42). Olestra to the Rescue? Even if one successfully eliminates exposure to the harmful substance(s), those substances have already accumulated in the adipose tissue and could, depending on their properties, potentially reside there for many years causing inflammation until eventually being eliminated by the liver and body. I already mentioned that it took me four months to recover from a two week exposure to Pepto-Bismol. If the liver is damaged or dysfunctional, that time could increase even further. This explains why fibromyalgia often persists in individuals for months and years. Is there some way to “detoxify”? Is there a way to accelerate the elimination of these fat soluble substances? There are numerous Web sites promoting controversial methods of detoxification, including large doses of B vitamins, saunas, diet, herbal remedies, and chelation. Saunas, for instance, are used for “sweat” therapy. But sweating can only eliminate water soluble products and has no effect on eliminating fat soluble substances. However, there is one valid, medically proven treatment which can accelerate the removal of a number of fat soluble toxic substances. Oddly enough, this can be achieved by eating potato chips purchased directly off the shelves of local grocery stores. Olestra, the non-absorbable fat substitute from Procter & Gamble, has been successfully used to treat patients with high accumulations of dioxin and PCB. In one case, two Austrian women with record high levels of dioxin intoxication and suffering from chloracne were administered Olestra, both in pure form and as Olestra contained in fat-free potato chips, increasing fecal excretion of dioxin by eight to ten fold and reducing the normal elimination half-life of dioxin from seven years to one to two years. In another case, a Western Australian man suffering from PCB toxicity was treated with two once ounce servings of Pringles fat-free potato chips daily for two years. His PCB level dropped dramatically, and his chloracne vanished(43,44,45,46). The effects of diet restriction and Olestra on the tissue distribution of a chlorinated hydrocarbon were studied in one experiment. Mice were administered hexachlorobenzene labeled with radioactive carbon-14. When diet was restricted, carbon-14 increased by 3-fold in the brain and the total amount in adipose tissue did not change. On a restricted diet combined with Olestra, there was a 30-fold increase in the rate of carbon-14 excreted in stool compared to a diet without Olestra. Dietary Olestra also reduced the increase of carbon-14 into the brain resulting from a restricted diet by 50%(47). My fibromyalgia was quite likely caused by exposure to chemicals inhaled daily at work for years. Since I quit my job, I was no longer exposed to those chemicals. For my fibromyalgia symptoms to end, I needed to eliminate those chemicals which accumulated in my adipose tissue. If I did nothing but wait for the chemicals to be excreted over time, there was no way of knowing how long my fibromyalgia symptoms would last. There was a good chance that the chemicals I was exposed to are the type Olestra can help remove, but I could not be certain. If I decided to treat myself with Olestra, there was no way to know how long it would take for me to begin to see any improvement in fibromyalgia symptoms. But there was nothing to lose by trying. I had a choice of fat-free Pringles or Lays Light or Ruffles Light potato chips, all made with Olestra. Pringles contain cornstarch, and I have corn sensitivity. So my choice was two one ounce daily servings of either Lays Light Original or Ruffles Light Original potato chips. I saw no reason to alter my diet otherwise. I am already quite lean and trim, and do not need to lose weight. I would give it at least two months of treatment to see any improvement in symptoms, but I hoped to see at least some small improvement in as little as two weeks. After all, it had previously taken less than two weeks for Pepto-Bismol to cause pain symptoms. When I began Olestra treatment, my fibromyalgia symptoms were at their peak. My arms and shoulders ached. Reaching for anything was a dread. Walking any distance was nearly unbearable. My right leg and hip just plain hurt, and the pain was even worse lying in bed. I was still experiencing that sharp hip pain when my hip joint popped. I was greatly fatigued. I could do almost no exercise or stretching. Lifting grocery bags was a trial. After just two weeks of Olestra treatment, I was not disappointed. There was a small, but very definite improvement in my symptoms. The sharp hip joint pain and popping were going away. There was just enough overall decrease in pain to begin to do some limited stretching exercises. With the ability to do some daily stretching exercise, I could now monitor how well my symptoms were improving on the basis of an increased range of limb motion and flexibility as well as how well I could walk. Almost daily, there were unquestionable signs of improvement. The range of limb motion during exercise steadily increased in small, but definite increments. Pain levels decreased. Leg pain in bed became tolerable. I was able to add daily walks to my exercise regimen. Fatigue was decreasing. Into the11th week of treatment all seemed to be going great. I had recovered much flexibility in my legs. My arms no longer ached and I could reach all the way across my car seat to reach the latch to unlock the passenger door without pain. I was able to do some pushups, regained some arm strength, and was able to handle grocery bags. It looked as though a full recovery might be possible in just a few more weeks—but then came a setback. My left leg had been the least affected limb during my fibromyalgia. The left leg had always retained a degree of flexibility. But by the end of the 11th week of treatment, my left leg began to stiffen in pain. Fatigue increased. I had to curtail my exercise. On the plus side, however, despite this setback, flexibility and pain levels in my arms, shoulders, and right leg remained relatively unchanged. Overall, my condition was still vastly improved over what it was before starting Olestra treatment. I have no idea why my left leg suddenly became so affected. For a few days at that time, I was not feeling so great. Perhaps it was some minor bacterial or viral infection as I also experienced an increase in bowel discomfort at that time. All I could do was let the symptoms in the left leg run their course, and begin my exercise regimen once again just as soon as my left leg loosened up. As I write this, I am now into of my 15th week of Olestra treatment. My left leg is just beginning to loosen up. Symptoms in my other limbs remain in a stable improved condition. In a few days, I will begin to concentrate on my exercise and stretching routine, hoping to quickly restore flexibility in my left leg. Hopefully, I can make it to full recovery this time without any more setbacks. I am pretty well convinced that Olestra has played a significant role in dramatically improving my fibromyalgia symptoms. Loose Ends Before concluding, there are a few loose ends about fibromyalgia to consider. The increased discomfort in my legs experienced when lying in bed can readily be explained as a result of lateral displacement of the joints due to gravity. The lateral displacement pulls on the tendons and ligaments at the entheses, tugging on and aggravating the sensitized nerves within the inflamed adipose tissue at the attachment sites. This may also explain the cause of “restless legs syndrome” so common in fibromyalgia. Just the weight of the bed covers on my feet increases the tension in the leg tendons and ligaments adding to the discomfort. Bed “cradles” which can lift the bed covers above the feet and legs are available from health care product stores. I have noted, in addition to being very stiff in the mornings, my fibromyalgia pain seems to let up somewhat and be at its lowest level late in the evenings. The pain cycle seems to be on a 24-hour circadian clock and corresponds to levels of cortisol secreted by the adrenal glands. Cortisol, among many functions, is an anti-inflammatory. In the 24- hour cycle, cortisol secretion is at its lowest around 7:00 am, just about the time most of us need to get up in the morning. Cortisol secretion then picks up and peaks shortly after breakfast, gradually dropping off into the evening. Cortisol has the opportunity to infuse into the inflamed adipose tissue throughout the day, lowering the inflammation and providing pain relief. By late evening, the accumulation of cortisol in adipose tissue is apparently at its maximum. With little cortisol being secreted overnight the cortisol level drops off and the inflammation in the adipose tissue increases resulting in morning stiffness and pain. The relationship between cortisol secretion and fibromyalgia symptoms has been studied(48). Exercise and stretching have been a part of my therapy. While exercise works primarily on the muscles and not adipose tissue, I have found it beneficial if not overdone. Keeping up muscle tone, strength, and flexibility improves mobility and also seems to lower the level of fibromyalgia pain. Pain, however, can severely limit one’s ability to perform exercise. I usually take advantage of the reduced pain in the evening and perform my exercises then. I push myself to the threshold of pain tolerance when stretching my limbs. Exercise has been found to have important effects on the immune system. Anti-inflammatory cytokines, such as IL-6, are released by muscle tissue during exercise(49,50,51). Adipose tissue has also been found to secrete IL-6 during exercise under the influence of a release of epinephrine (better known as adrenaline)(52,53). As I perform my exercise, the pain level subsides, and my range of motion increases. It seems clear that anti-inflammatories released by muscle and adipose tissue during exercise actually make it possible to do more exercise with less pain. This pain relief is temporary and short-lived, however. Not long after I complete my exercise, I begin to stiffen up. Since liver dysfunction seems a part of fibromyalgia pathogenesis, can liver tests be useful? There are a number of liver function tests which can be performed which measure the blood serum levels of proteins and enzymes produced by the liver. However, these tests primarily assess liver injury rather than liver function. Abnormal test results often, but not always, indicate a liver problem and offer clues as to the nature of the problem. Normal liver function tests do not always mean the liver is normal(54). Physicians seeing patients for fibromyalgia should consider ordering liver function lab tests, but should not rule out liver dysfunction even if test results come back normal. Studies of the prevalence of liver abnormalities in celiac disease rely on the results of liver function tests. Since normal test results do not rule out the possibility of liver dysfunction, the incidence of liver abnormalities in celiac disease could be much higher than reported. Conclusion The current medically prevalent view that sees fibromyalgia as a condition involving brain and central nervous system abnormalities does not adequately explain the symptoms manifested during my own experience with fibromyalgia. An inflammation of highly innervated and vascularised adipose tissue in the vicinity of entheses readily offers a full explanation of the source of fibromyalgia pain. The inflammation of adipose tissue can be attributed to an accumulation of fat soluble toxic substances within the tissue. The accumulation of fat soluble toxic substances and susceptibility to fibromyalgia likely involves liver dysfunction as well as exposure to toxic substances. Liver dysfunction decreases the liver’s ability to remove fat Unraveling Fibromyalgia, continued soluble substances. Liver dysfunction may also reduce the level of anti-inflammatory proteins produced and secreted by the liver, and this, too, may be a factor in the initiation of inflammation in adipose tissue. Conditions such as celiac disease have a high prevalence of liver abnormalities and a high prevalence of fibromyalgia. Increased intestinal permeability, common with bacterial overgrowth and celiac disease, provides an additional pathway for toxins, undigested proteins, and other harmful substances to overload the liver and accumulate in adipose tissue. Olestra, a non-absorbable fat substitute readily available as an additive in fat-free potato chips, holds great promise as a treatment to accelerate the removal of fat soluble toxic substances from inflamed adipose tissue offering a potential fibromyalgia cure. References: Frissora CL, Koch KL. Symptom overlap and comorbidity of irritable bowel syndrome with other conditions. Curr Gastroenterol Rep. 2005 Aug;7(4):264-71. Wallace DJ, Hallegua DS. Fibromyalgia: the gastrointestinal link. Curr Pain Headache Rep. 2004 Oct;8(5):364-8. Zipser RD, Patel S, Yahya KZ, Baisch DW, Monarch E. 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Hey Guys, I'll post the question first in case you don't have time to read my story. Does/can gluten expose cause burning pain in the gut area? It seems when I MIGHT have a gluten exposure I get a "flare" of burning pain in my gut - mostly my left upper area. If I KNOW I've eaten gluten I get the burning plus the awful cramps and like I have constipation and diarrhea at the same time, my joints hurt like crazy and feel a little dizzy and this goes on strong for at least two days and takes what seems two to three weeks to go away. Backstory: My gut has been sick for 5 years. My gastro doc ran the basic tests (colonoscopy, endoscopy with all the biopsies, etc.) and my GP ran all the other stuff (CT scan, Echo of gallbladder, bloodwork). ALL normal except slight gastritis in stomach and a few diverticuli along my colon. Gastro doc said I have classic IBS. I have seriously tried every single diet change on the planet to heal up, and some have been quite extreme. The ONE thing I found for sure is that if I go strict without gluten and dairy for, say, 3 weeks, and then eat gluten again I get sicker than a dog. Now, during all my tests, my gastro doc biopsied me for celiac but at the time I didn't KNOW he was going to test me for it and HE didn't know I wasn't eating gluten. When he told me the celiac came back negative I said that was good because I hadn't been eating gluten for awhile anyway. The gasto doc was shocked and said the NEGATIVE results could totally be wrong. He told me to "Go eat all the bread that God made and come see me so we can redo the test". I took some gluten afterwards and immediately got sick. I didn't go back to my gastro doc because I wasn't about to continue to eat the gluten for 2 weeks. My GP doc says he wants to diagnose me with celiac just based on my symptoms alone. Now, the burning pain in my left upper side is so awful. Like a 6 or 7 on my pain scale.. and I've birthed 6 children with no meds. It used to come and go and now it's mostly here. I try hard to stay away from gluten but since the pandemic have been eating out "gluten free" and I think I get exposed. Yet, I'm still not sure if I am even celiac! I read somewhere that if a person is highly sensitive to gluten that an exposure can make them sick for up to a year? Now my GP doc wants to run more tests to see if I have other issues. My main question is whether gluten exposure can cause this type of burning pain? Has anyone else experienced this? Thanks, Missi
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Hello, I've just made my account today, but i've read lots of posts in the past that helped me throw the bad days. I've been diagnosed with celiac 3 months ago (after 6 months of pain, gas, bloating, constipation, brain fog and fatigue) and i tried to be strictly gluten, corn, diary, soy (only 1 month) free. I also cut most of sugars, and other grains besides rice. I eat mostly veggies, fruits, fish, chicken, rice and quinoa. Sins then i've been back and forth with my symptoms as i had good and bad (more often) days . I learned that i need to be patient and give my gut time to heal, but for some time i have a continuously pain in lower right side of my abdomen, a pain that feels like i have a knife inside my gut. It gets worse after i eat and food arrives where small intestine meets the colon. I'm pretty sure i am gluten free and that i'm not experience any CC cause i have a food journal, the pain is a little different and i don't get fatigue, brain fog and depression symptoms. Does anyone of you have this kind of pain? Is this a part of healing process? I should give my gut more time to heal or i should go to take some tests?
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Prior to being diagnosed with Celiac, I experienced very severe upper abdominal pains. Literally, I thought I was having a heart attack. I was diagnosed with Celiac, four years ago and have been gluten-free since. Every now-and-then, I will get the pains. I attribute it to possible gluten contamination (mostly from restaurants). Although, I have had these pains periodically for the last 3 days. It is probably the worst pain I have ever experienced. I wonder if it is something else? Something not related to Celiac. Does anyone else get upper abdominal pains this severe? If so, what do you do to get rid of them? Thank you.
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Celiac.com 10/19/2020 - A team of researchers recently set out to determine the rates of functional abdominal pain disorders (FAPDs) and functional constipation in children with celiac disease on a strict gluten free diet. The research team included Fernanda Cristofori, MD; Mariaelena Tripaldi, MD; Giusi Lorusso, MD; Flavia Indrio, MD; Vincenzo Rutigliano, MD PhD; Domenico Piscitelli, MD; Stefania Castellaneta, MD; Vincenzo Bentivoglio, MD; and Ruggiero Francavilla, MD, PhD. They are variously affiliated with the Interdisciplinary Department of Medicine-Paediatric Section, University of Bari, Italy; the Department of Paediatrics San Paolo Hospital, Bari, Italy; Section of Pathology, Department of Emergency and Organ Transplantation, University of Bari, Italy; the San Giacomo Hospital, Monopoli (BA), Italy; the Faculty of Medicine, Paediatrics Specialization School University of Padua; and the “B. Trambusti” Department Giovanni XXIII Hospital- Via Amendola 207 Bari, Italy. For their prospective study, the team looked at 154 males and 263 women at a tertiary care center in Italy from 2016 through 2018. All patients were diagnosed with celiac disease according to ESPGHAN criteria, followed a strict gluten-free diet for more than 1 year, and also had negative results from serologic tests. Patients with celiac disease had higher rates of FAPDs, at 11.5%, compared to 6.7% for control subjects, while the relative risk was nearly 2%. Nearly 20% of celiac patients had functional constipation (functional constipation), and more than 7% had irritable bowel syndrome (IBS), defined by the Rome IV criteria, compared with more than 10% and 3.2% respectively for control subjects. Parents and children over 10 years old answered questions about pediatric gastrointestinal symptoms, according Rome IV criteria. As a control group, the team used 145 male and 227 female siblings or cousins, who had negative results from serologic test for celiac disease. People with celiac disease face an increased risk of both IBS and functional constipation. The team stresses the importance of strategies for managing IBS and functional constipation in celiac patients. Read more in CGHjournal.com
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Hi there, I’m due for an endoscopy (currently no longer have a date due to COVID) and am just very nervous about what to expect. I have quite a low pain tolerance and an awful gag reflex, would it be worth me requesting sedation for the procedure or is it not that bad? I’m the first member of my family (that I know of) to have one so just don’t know what to expect. Any guidance would be greatly appreciated (please be brutally honest)
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Hi, I’ve been really struggling to manage my symptoms of possible celiac disease and was just hoping for some guidance. (This is about to be very long so I’m sorry) Early December I had a bad fall and suffered some trauma to the head and was also under a lot of stress due to mock examinations. For a while I had been feeling fatigue but all of this was amplified after the fall and I was struggling to stay awake in lessons/ would just collapse after college. I was also having bad pain sometimes after eating and would get my worst fatigue after meals/ during the afternoon/ evening. I paid a visit to the GP and got some blood work done which came back low in iron and also high for celiac (very surprised but I do have a cousin with very bad celiac, been hospitalised etc). I got put on iron tablets and booked in for an endoscopy however this got cancelled due to the COVID-19 situation. My issue now is that my GP has advised to stay on the iron (I am starting my 5th month on 210mg 3x a day) and also keep eating gluten as we don’t know when my endoscopy will be as it could be a quick turn over (as in find out about it and then have it the week of) so we want to minimise chances of a false response. However I’m in such bad pain and so fatigue, my bloating is so severe I go up a dress size/ 2 and it’s like rock solid. My mum thinks I should cut out gluten for the foreseeable future to ease my pain. Just wondering if anyone can help with suggestions/ a bit of hope that things won’t stay like this. Many thanks
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Dear all, I was recently informed buy my doctor (in Finland) that I have celiac disease. What's funny is that another doctor who did some genetic testing informed me that I had the risk of celiac as I had the following genes: HLA-DQ2 and HLA-DQ8. He advised that I eat a gluten-free diet and this has helped a lot with gastro-intestinal problems/pain. In fact, I'm now on very restricted vegan diet and prescribed a lot of supplements by my doctors. Anyway, the reason that I am posting here is that over the past 8 years I have had some rather nasty health problems. These started with chronic pain in my right leg in particular, but along the way I have had many other health problems including repeated bouts of pneumonia, vitamin and mineral deficiencies despite a healthy diet/anaemia, repeated ulcers, and the development of intolerances to many foods including dairy products, tomato, onion/leek/etc., sweet potato, zucchini/squash/etc. and quite a few other foods, and several bones that have broken too easily (2 x ankle, wrist and clavicle). Also, I have lost the ability to fight off even mild illnesses, as I have a crazy autoimmune response. Do any other people on here have similar experiences? Have you found that any other health problems improved after you've been diagnosed with coeliac disease? Thank you for any help/advice you can offer. Best wishes, Peter
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Symptoms ongoing
nataliet24 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Is it worrying that I still don’t feel any better after being gluten free for nearly 7 months. Still have constant belly pain everyday and brain fog. Worrying I will have refractory coeliac I’m only 22 and had total villous atrophy -
Hi everyone, I apologize if this is a long post, but I am in desperate need of help. I started having neurological symptoms in Dec 2018. Muscle twitching, muscle weakness, balance problems, joint and muscle pain. Became TERRIFIED of ALS. Went to the neurologist. She did a blood test and diagnosed me with Non-Celiac Gluten Sensitivity. 1.This is where my first problem starts. Other doctors have told me that NCGS isn’t real. I have also read the blood tests aren’t reliable, but this neurologist is swearing by it? 2.I admit I haven’t managed to stay gluten free for a whole 2 weeks yet. It seems that my muscle twitching (I have no vitamin deficiencies) gets way worse when I stop eating gluten, and gets better when I reintroduce gluten. Is this some sort of weird withdrawal? 3.I have a dull ache that only happens on the right side of my body. On my palm, my butt bone, and bottom of my foot. It also feels like my ankle and wrist are weak when I walk. Does anybody else have this? I will be so grateful if someone can answer these questions. I live in Alabama and unfortunately gluten free is laughed at around here which has led me to believe I have ALS even though I have had 2 clean EMGs. I don’t mean to be dramatic but I just can’t function with this worry. Thank you Erica
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So I was diagnosed with " Severe Celiacs disease " last year, but I was told nothing was seen in biopsy and I haven't done blood work yet, the only thing that indicated Celiacs was the damage done to my villi.... before I was diagnosed I was very sick I couldn't eat at all, like throwing up, diarrhea, chest pain, neurological problems and headaches, thought I had cancer. Ok skip forward, I've been on this gluten free diet since November of last year and decided to go ahead and cheat my diet, well I've been eating nothing but gluten for over a week and wasn't getting sick but now I'm starting to get chest pain, weird headaches and a little bit of an upset stomach... Is it possible I wasn't getting sick because I'm now I silent celiac even tho before symptoms were obvious, or could I have been misdiagnosed? Still haven't done blood work and nothing was in the biopsy, However my villi is damaged severely, is more positive I'm sensitive to gluten and the damage of the villi is caused by something else? Please help me, I'm so frustrated with my body because of all this and even more frustrated I wasn't getting sick before but now I think I am.
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Hello! I have been searching extensively for a topic similar to this and I haven't been able to find anything - sorry if this has already been addressed. I had a blood test for lots of different things a few months back and it transpired I had shown up as having Coeliac disease. The doctor suggested I go on a gluten-free diet (what a turd) before getting my appointment for a gastroscopy to 'rigorously confirm' my diagnosis. Went on the gluten-free diet - felt amazing. Two months after this I had my appointment date for the gastroscopy and started my 6 week Gluten Challenge. First three weeks were okay - minor tummy discomfort, lots of tiredness but generally fine. Last three weeks weren't great. I had my gastroscopy on Thursday 5th July - it was awful but quick. I had no sedation and went home the same day with some discomfort but nothing unbearable. Since then, however, things haven't been fantastic. For the last few days I've adopted a low FODMAP diet (as well as back to Gluten-Free) to try to ease my problems which has helped, but it seems like on the two occasions this weeks I've eaten/tried kidney beans/haricot beans/chickpeas/lentils I have THE WORST STOMACH EVER. What is going on?! I'm Vegan and I gotta say this stuff makes (and made) up quick a large chunk of my diet. Has anybody else had any extra sensitivities after their Gluten Challenge/Gastroscopy? I'm taking charcoal tablets, drinking peppermint tea.. All that jazz. I was so looking forward to going back to normal and it's just not happening. Would love to know if I'm not alone with these issues! Yours fed-upedly, Beth
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Summary:History of gluten intolerance, symptoms have returned despite no change in diet after 5 years of the same gluten sensitivity, I now seemingly react to the smallest cross-contamination and am not getting symptom relief. Do I need to worry about refractory sprue? I posted this on the celiac sub-reddit about two weeks ago but now I thought I could get more input here. A little background. When I was 14 years old, I started having strange joint pains in my wrists, persistent neuropathies and tingling in my hands, and other strange symptoms. Pains were seemingly inflammation of the tendons, made worse by exercise, and the inflammation responded well to NSAIDs. Went to a ton of doctors, tested for RA, MS, and anything else under the sun, but everything came back negative. "We don't know." My digestive health wasn't too bad or too good: I got constipated and got diarrhea from time to time, but not too often. I didn't really experience severe abdominal pains on a consistent basis so I didn't think anything of my digestive symptoms. As a result, no one checked anything digestive. The inflammation went away with NSAIDS. The only lasting effect after was that I absolutely couldn't exercise without developing terrible tendonitis and Joint pain within a few days, which caused a lot of depression. The disease remained stable in nature for a while until when I turned 21 or so. The chronic tendinitis spread to my ankles in addition to my wrists. The inflammation began to happen without any exercise, just from me existing. I also began having some more severe digestive problems, loose stools, poorly-formed stools, stomach pains, and felt like I was in a fog all the time. I tested negative for everything rheumatological. During a late-night research session, I googled a bunch of my symptoms and found out that a lot of people with gluten intolerance experience these same symptoms. I immediately went gluten-free. Over the course of the next two weeks, my digestive health was completely restored, and my joint pains were decreased by about 80% after about 1-2 months. I had an enormous amount of energy. I felt like a new person. I went to the doctor and got tested for Celiac, but the antibody test came up negative. I was already on a gluten-free diet, so I know that probably meant little. I know that my symptoms are not reflective of traditional Celiac and I apologize for self-diagnosing (no positive test). All I know is that going gluten-free absolutely changed my life and restored my health. Over the past five years, I've had absolutely no baseline changes in my gluten sensitivity. I cook most of my food, and eat at places like Chipotle and occasionally eat at restaurants and make sure not to order anything with wheat, rye, or barley. I get "gluten-fee" pizza at pizza places knowing that it's cooked in the same ovens with bread and do fine. I avoid beer and am careful with my alcohol selection, but basically, I was always able to tolerate cross-contamination. On the one occasion when I did eat bread, I had diarrhea for a week or two and then was back to normal. I was still tremendously prone to repetitive strain injuries and inflammation, but not to the same degree I had been before and ONLY after exercise. I was living my life. ... Fast forward to about 2-3 months ago. I have been going through a very stressful period in my life, and I think the stress triggered something. Simultaneously, I have a "glutening:" for a period of a couple of weeks, on 3 or 4 occasions, I eat sushi with imitation crab meat and rice binder that has wheat in it. I start having the pains in my ankles again. X-rays have shown that my ankles are swollen, and I haven't done anything but stayed on my feet and walked. Start developing tendonitis in my wrists again. The loose stools and indigestion are back and I feel like my brain is in a fog. I only get a little bit of symptom improvement if I eat the food I cook for myself. . I now respond to foods I wasn't responding to before. Eating at the same cafeteria I was eating at 5 months ago without a problem now causes a reaction. I have seemingly become very sensitive to ANY cross-contamination whereas just half-a year ago I could tolerate it without a problem. This is after five years of absolutely no change in my baseline reactivity. What the hell is going on? I've HAD glutenings before years back, and they never caused my symptoms to return and persist as they have now! And they NEVER changed my baseline sensitivity to gluten. All of my rheumatological tests have come up negative. I finally spoke to gastroenterolist yesterday and he agreed that this could be Celiac's disease, but had no answer for me on whether my baseline sensitivity would improve. I'm not willing to gluten myself for 6 weeks to get a positive blood test. The symptoms are too much to bare and I am trying to finish graduate school. My question is... if I do have Celiac... Has it suddenly gotten worse? Is it normal to have a sudden worsening of this condition, after 5 years at steady-state? I feel like I'm losing my mind, and have no idea what to do. I'm in constant pain and it's miserable. Whatever this is, it has taken such a huge toll on my life now.
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Idk if this is the correct way to ask a question on here but I couldn’t figure it out lol but I was diagnosed with celiacs disease about 2 and a half years ago and I have been okay since then I have been what I thought has been a completely gluten free diet and am really good on stayin on top of my diet but I have recently been getting vertigo and a burning feeling in my stomach as well as bloating! I don’t get diarrhea just serious bloating and abdominal pain! I’m always having some kind of issue and want help because it’s horrible and painful. I am tryin g to cut dairy out of my diet because I am lactose intolerant but not bad, but this is just now happening. Anyone else getting symptoms like these?:/
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Hello all. I suspect that I am gluten intolerant. I went gluten free last Monday. About two days after that I felt great! However, yesterday I started feeling bad again. Today is even worse. I'm having leg cramps again, bloating (it's like I went up two sizes in two days!), bad cramps, muscle spasms and joint pain. Is it possible to go through gluten withdrawl after feeling better? I've also been very careful with my diet too. I've also been more on edge and angry. I am not an angry person...
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