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Showing content with the highest reputation since 10/11/2018 in all areas

  1. 3 points
    Have they done a celiac panel on you? Also with the MRI were there any white spots that the neuro considered 'normal'? I ask that because your symptoms are much like mine before diagnosis and I had white spots on the MRI suggestive of MS but after a spinal tap ruled out MS my neurologist said they were normal 'lots of folks have them'. He didn't know they were diagnostic of gluten ataxia. I would suffer for a few more years before I was finally diagnosed celiac. If the doctors have done all testing for celiac then IMHO you should try the diet strictly for at least 6 months. In addition have they done testing for your B12 levels? If they have what were the results? They should be over 500. If you have had more than one test for B12 check the results and see if the levels have been dropping. Your body can stop being able to utilize B12 before the levels drop below normal levels. A sublingual B12 may be helpful with the tingling sensation and it is a water soluable vitamin so don't be disturbed by the high levels in the vitamin tablets as your body will excrete any excess. I hope you get some relief soon. Do read the Newbie 101 thread at the top of the Coping section as it will have a lot of good info on what you need to do to be as strict as possible. Do make sure that your doctors have finished all celiac related testing before starting the diet as being gluten free will cause a false negative on celiac testing. The gluten free diet will not impact testing for other disorders.
  2. 2 points
    Your doctor does appear to be correct, if these are your blood test results, so be sure to discuss them in more detail with her. Before starting a gluten-free diet it is possible that she may want you to undergo an endoscopy to confirm the diagnosis, so be sure not to go gluten-free until directed by your doctor. On a positive note, if this is the source of your various health issues you should see a big improvement of your symptoms once you do go gluten-free.
  3. 2 points
    Hi muscle wasting was one of the first signs that I was not well at all! I had significant neuro issues and debilitating vertigo until a few weeks ago after being diagnosed and going gluten-free. Twitching still happens especially when tired. The vision issues plagued me: I couldn't even read properly for months. Now? Absolutely PERFECT! Muscles are far more co-ordinated now that I am off gluten entirely. This disease wreaks havoc in the neuro system for some of us and I am so so blessed that most have gone permanently since going gluten-free. I had severe vertigo within 30 minutes of having a spice in dinner that had gluten in it! Then could barely walK for two days. Look into your magnesium levels too for a lot of your symptoms...I use a spray on my aching muscles but not too much. Taking lots of pea protein etc to increase muscle gain, slippery elm yo heal the gut: lots out there. I had almost all your symptoms! Good luck! This is such a hard journey but we do get it! Vent away ♡
  4. 2 points
    I did have muscle twitching & muscle wasting. In fact, one of my 1st signs of cross contamination is a muscle under my right eye starts twitching. Drives me batty!!!! That thing twitched for a solid year pre diagnosis.
  5. 2 points
    It is not always malabsorption with celiac disease. Celiacs seem to have leaky gut issues due to excess Zonulin. Researchers think it might be the key to many other illnesses (e.g. autoimmune) where inflammation is involved. Celiac disease is definitely systemic. The impact to the neurological system is still being studied. Learn more: https://m.youtube.com/watch?v=wha30RSxE6w
  6. 1 point
    I agree. Make sure you keep eating gluten until after the endoscopy. Yes, I'm sure she's probably swamped but do try to get clarification on whether she's going to refer you to a GI. If your insurance does not require a referral then you could go ahead & make an appt. yourself. I hope you & your home are okay. If you're talking about Michael, I'm about 200 mi east of that area & will be eternally thankful it did not track this way.
  7. 1 point
    He can also get the celiac blood tests as well. If you go with a skin biopsy, make sure the dermatologist knows how to properly biospy the rash specifically for DH. https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/ All first-degree relatives should be tested even if they are asymptomatic. DH is celiac disease! It just presents on the skin. It can develop at any time in your life!
  8. 1 point
    Hi, They test for DH by taking a small skin biopsy from clear skin next to a lesion. A dermatologist is the person to go to. Don't have him quit eating gluten until all testing is done though. He needs to eat enough gluten each day to keep the antibodies active. A half slice of regular wheat bread should to it.
  9. 1 point
    Raven hit it on the nail, you would need the Celiac Blood testing to rule out celiac, and need to be eating gluten for the test. I had gluten ataxia, and magnesium deficiency which both caused the odd feeling issues with the legs and muscles. The ataxia later damaged my spine and brain causing long term damage, lack of feeling, messed up connections hampering pancreas and stomach functions, and brain damage causing cognitive issues. The Magnesium Deficiency caused a fire like pin and needles feeling in my legs, and arms at its worst, random other problems including extreme constipation issues. Look it up and see just how many other issues correspond with what your dealing with. Natural Vitality Calm can be used to address this. Start at 2g (1/4tsp) and up dose 2g a day til you get loose stools then back it down 2g dosing to tolerance. B-vitamins, not just b12 should be taken, many work synergistically, Liquid Health makes a Energy & Stress Formula and a Neurological Support Formula that you can take. Again these can cause many of the issues your dealing with. Supplementing can help, but you need to find the cause of many issues, if it is ataxia the triggers need to be removed form the diet. If your indeed celiac then gluten free. Celiac Disease can result in poor absorption of nutrients like b-vitamins, magnesium, iron, vitamin D etc. So we often have to supplement either short or long term depending on damage and complications. You other issues with intolerance and sensitivities to foods are something we also get, we either do not break down foods enough or get leaky gut issues. Combined with our immune systems being on guard, confused, and a mess we have other foods take flack from our systems.
  10. 1 point
    Celiac.com 10/08/2018 - A new population based study reveals that celiac disease is associated with a wide range of medical conditions, including liver disease, glossitis, pancreatitis, Down syndrome, and autism, according to a database study of more than 35 million people. Moreover, people with autism have celiac disease at rates almost 20 times higher than in those without autism, reported lead investigator Daniel Karb, MD, a second-year resident at University Hospitals Case Medical Center in Cleveland. That raises the question of whether people with autism should be screened for celiac disease, and whether they might benefit form a gluten-free diet. "If you have a patient who is autistic and they have all these unusual symptoms, you might want to screen them for celiac disease," Dr. Karb told the World Congress of Gastroenterology last year. It is known that there are unusual symptoms of celiac disease, which include anything outside the classic symptoms of malabsorption, steatorrhea, malnutrition, abdominal pain, and cramping after eating, "but this is putting numbers to it," said Dr Karb. For their study, Karb and his fellow researchers used the Explorys database to pull health record data from 26 major integrated healthcare systems in the United States. Their search covered the period from 2012 to 2017. Of 35,854,260 people in the database, they found 83,090 with diagnosed celiac disease. Overall, the age-adjusted prevalence of celiac disease in that group was 0.22%, which is much lower than the 1% to 2% range previously estimated. Those numbers are not unusual, said Dr. Karb says that the researchers “don't think there are fewer people with celiac disease, just that it may be under-diagnosed.” The rates are, he says, “what you might expect when you screen asymptomatic people." Overall, the team found a significant connection between celiac disease and 13 other autoimmune disorders, such as type 1 diabetes, Crohn's disease, and ulcerative colitis. Moreover, celiac disease is associated with every autoimmune disease the team looked at, except for primary biliary cholangitis, Dr Karb says. This is some pretty startling study data. We knew that celiac disease was linked to other autoimmune conditions, and there has been some surprising data about gluten-free diets helping patients with autism, but these numbers are enlightening. It seems that people with autism should definitely be screened for celiac disease, and placed a gluten-free diet, if tests confirm celiac disease. Stay tuned for more information on this important celiac disease topic. Source: World Congress of Gastroenterology 2017
  11. 1 point
    Hi! It is up to you whether or not you want to push for additional celiac disease testing with the NHS. I am not a doctor, but taking supplements will 8mprove you blood work. The problem is that if you have celiac disease (or another underlying issue), you will become deficient again once you stop the supplements. Keep in mind that you did not receive the entire celiac panel and some 10% of celiacs are seronegative. Learn more from this forum member who is a Neonatologist (preemie baby doctor) and also has celiac disease: http://www.jessicamaddenmd.com/JESS-Blog/May-2017/The-Alphabet-Soup-of-Celiac-Blood-Testing
  12. 1 point
    "He had no interest in...what could be causing the stomach aches. " There are a lot of medical practices these days that are set up as factories, processing patients. It is all to rare to find a doctor who takes the time to LISTEN and treat a patient with respect. Sometimes, you just need to say outright "Doctor, can you take care of this or should I go to someone else?" and sometimes it is simpler to just find a new doctor, hard as that may be. I had a family member to a specialty clinic at a generally respected local hospital last year. From what I had read, the treatment was not only inappropriate but could be detrimental. When I was not allowed in with them to see the doctor, and forced to wait an additional 90 minutes before they figured out I wasn't going away and was going to see that doctor, I finally was allowed to talk to them. I asked "Why are you using a product with ---- in it?" and the doctor actually tried telling me that the key ingredient in the product wasn't in it. Two days later we snagged an appointment at a regional top-name clinic for a second opinion. First words out of the doctor's mouth? "That's appropriate for a third world clinic in the jungle, but we have higher standards of care in the industrialized world." Yes, one "really good" doctor and clinic were insisting on using a product that literally could have quadrupled healing time, causing incidental damage along the way. Sometimes, you need to fire the doctor. If you're off base, it is THEIR JOB to explain the situation to you, and to put you at ease. If they can't do that? Stick to your gut feeling, fire the doctor.
  13. 1 point
    I do not know anything about the immunotherapy you will undergo, but if you have celiac disease, you will never get gluten back. It stays with you for life, but it can go into remission while on a gluten free diet. The therapy might help if you have a wheat allergy (IgE). If you have been on the Fasano diet for years and saw no improvement, I would think that you are not dealing with a celiac-related issue. It must be something else. Has Lyme disease been ruled out? Mast Cell Activation? Maybe get an endoscopy? I had a repeat endoscopy after not getting a response from the Fasano diet. Turns out my small intestine was completely healed. Celiac disease was not my current issue. Gastric biopsies revealed Chronic Autoimmune Gastritis. I was doing a great job at being gluten free.
  14. 1 point
    Those look like gluten removed beers and are not really gluten free. They are made with barley and wheat and supposedly the “special” brewing process reduces or elimates the gluten below 20 ppm. But the celiac community says these beers are not gluten free enough to be safe for celiacs. Consider selecting a distilled alcohol beverage, wine or a gluten free beer (not made from gluten) in the future. https://www.gluten.org/branchnews/gigbeerstudy/ https://www.gluten.org/toxic-truth-gluten-free-beer/ https://glutendude.com/alcohol/do-not-trust-gluten-removed-beer/ I hope you feel better soon.
  15. 1 point
    Just curious if a metallic/strange taste in the mouth when eating gluten foods in a symptom of celiac. My child has the genetic markers for celiac and positive on one blood test but not a confirmed diagnosis. Recently she stopped eating some gluten foods because she said they taste funny to her - give her a metallic / bad taste in mouth. Just curious if this a symptom anyone else has had.
  16. 1 point
    Celiac.com 02/08/2007 - There are no signs or symptoms typical for all people with celiac disease. Signs and symptoms and can vary greatly from person to person. People with celiac disease often have general gastric complaints, such as intermittent diarrhea, abdominal pain and bloating. Some people with celiac disease, however, suffer no gastrointestinal discomfort at all. To make matters of diagnosing celiac disease even more challenging, celiac symptoms can also mimic symptoms of other conditions, such as anemia, Crohns disease, gastric ulcers, irritable bowel, parasitic infection, even various skin disorders or nervous conditions. It is not uncommon for celiac disease to present itself with symptoms that are far more vague. Such symptoms can include: dental and bone disorders (such as osteoporosis), depression, irritability, joint pain, mouth sores, muscle cramps, skin rash, stomach discomfort, and even tingling in the legs and feet (neuropathy). Celiac disease results in malabsorption of nutrients. Depending on the degree of malabsorption, the signs and symptoms of celiac disease vary among individuals, ranging from no symptoms, few or mild signs and symptoms, to many or severe signs and symptoms. There are two categories of signs and symptoms: Signs and Symptoms of Malabsorption, Malnutrition, Vitamin and/or Mineral Deficiencies Associated with Celiac Disease: Abdominal cramps, gas and bloating Anemia Borborygmi (stomach rumbling) Coetaneous bleeding Diarrhea Easy bruising Epistaxis (nose bleeding) Failure to thrive Fatigue or general weakness Flatulence Fluid retention Foul-smelling or grayish stools that are often fatty or oily Gastrointestinal symptoms Gastrointestinal hemorrhage Hematuria (red urine) Hypocalcaemia/ hypomagnesaemia Infertility Iron deficiency anemia Lymphocytic gastritis Muscle weakness Muscle wasting Nausea No obvious physical symptoms (just fatigue, overall not feeling well) Osteoporosis Pallor (unhealthy pale appearance) Panic Attacks Peripheral neuropathy (nerve damage) Stunted growth in children Vertigo Vitamin B12 deficiency Vitamin D deficiency Vitamin K deficiency Vomiting Voracious appetite Weight loss Obesity Conditions and Disorders Associated with Celiac Disease: Addison's Disease and Celiac Disease Anemia and Celiac Disease Anorexia Nervosa, Bulimia and Celiac Disease Arthritis and Celiac Disease Asthma and Celiac Disease Ataxia, Nerve Disease, Neuropathy, Brain Damage and Celiac Disease Attention Deficit Disorder and Celiac Disease Autism and Celiac Disease Bacterial Overgrowth and Celiac Disease Cancer, Lymphoma and Celiac Disease Candida Albicans and Celiac Disease Canker Sores (Aphthous Stomatitis) & Celiac Disease Casein / Cows Milk Intolerance and Celiac Disease Chronic Fatigue Syndrome and Celiac Disease Cognitive Impairment and Celiac Disease Crohn's Disease and Celiac Disease Depression and Celiac Disease Dermatitis Herpetiformis: Skin Condition Associated with Celiac Disease Diabetes and Celiac Disease Down Syndrome and Celiac Disease Dyspepsia, Acid Reflux and Celiac Disease Epilepsy and Celiac Disease Eye Problems, Cataract and Celiac Disease Fertility, Pregnancy, Miscarriage and Celiac Disease Fibromyalgia and Celiac Disease Flatulence (Gas) and Celiac Disease Gall Bladder Disease and Celiac Disease Gastrointestinal Bleeding and Celiac Disease Geographic Tongue (Glossitis) and Celiac Disease Growth Hormone Deficiency and Celiac Disease Heart Failure and Celiac Disease Infertility, Impotency and Celiac Disease Inflammatory Bowel Disease and Celiac Disease Intestinal Permeability and Celiac Disease Irritable Bowel Syndrome and Celiac Disease Kidney Disease and Celiac Disease Liver Disease and Celiac Disease Lupus and Celiac Disease Malnutrition, Body Mass Index and Celiac Disease Migraine Headaches and Celiac Disease Multiple Sclerosis and Celiac Disease Myasthenia Gravis Celiac Disease Obesity, Overweight & Celiac Disease Osteoporosis, Osteomalacia, Bone Density and Celiac Disease Psoriasis and Celiac Disease Refractory Celiac Disease & Collagenous Sprue Sarcoidosis and Celiac Disease Scleroderma and Celiac Disease Schizophrenia / Mental Problems and Celiac Disease Sepsis and Celiac Disease Sjogrens Syndrome and Celiac Disease Skin Problems and Celiac Disease Sleep Disorders and Celiac Disease Thrombocytopenic Purpura and Celiac Disease Thyroid & Pancreatic Disorders and Celiac Disease Tuberculosis and Celiac Disease Lastly, Dermatitis herpetiformis is an itchy, blistering skin disease that also associated with gluten intolerance. Rashes usually occurs on the elbows, knees and buttocks. Dermatitis herpetiformis can also cause significant intestinal damage identical to that of celiac disease. However, people who suffer from Dermatitis herpetiformis may also be entirely free of noticeable digestive symptoms. Treatment with a gluten-free diet, in addition to medication to control the rash, usually brings about significant improvement.
  17. 1 point
    Five years later, this is still true. General Mills shares this label policy with Unilever and Kraft, among others. Product formulas may have changed, but the policy regarding clear disclosure of any gluten has not. ALWAYS READ LABELS.