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Found 5 results

  1. I feel like I just discovered a way to have access to my brain all day. I figured out that if I eat only protein (eggs, steak, ham, black coffee), I don't get foggy. I wanted to share this with anyone who needs a good day. Let me know if this works for you as well. I think I need my other food groups in the early evening but for now I want to try protein for breakfast and lunch. I took my D,B12,and Multi vitamins and still have a brain. This is a huge breakthrough for me.
  2. 2001- suddenly and without warning developed hay fever 2002 - went to the doctors complaining of constant diarrhoea 2003- diagnosed with carpal tunnel syndrom after getting numb hands and arms and persistent pins and needles along with shooting pains which felt like hot pokers were being inserted in my body. 2006- starting to get easily fatigued and tired, often fall asleep when coming home, sometimes while lying on the floor playing with my daughter 2010-went to doctors with consistent pain in lower right side of rib cage, so bad at times that I couldn't sleep on my right side. Scan revealed no alcoholic fatty liver disease and raised alt 2011- starting to get major headaches and neck ache at the base of my skull 2012-memory starting to get bad 2013-memory still deteriorating and starting to get bouts of confusion, gave up clay pigeon shooting as I had a confusion attack while shooting and felt that for people's safety I needed to stop. Starting to get ringing in ears. 2014- confusion attacks and memory getting so bad that I felt I was developing dementia at 44! Started recording in my phone details of symptoms and problems. Ringing in left ear constant but occasionally progresses to right ear as well. Occasionally getting dizzy spells with the confusion. 2015-heard about lymes disease on the radio and the symptoms seemed to click (also knew I had been bitten by a tick in the past) decided to get checked out-my doctor actually laughed at me and said you can't have lymes disease! Blood test taken and not lymes but symptoms carried on....went and seen another doctor (this time a trainee) she decided to check my folate and B12 levels. Bingo! Low folate of 4.1 minimum should be 4.7. Put on folic acid and went on healthy eating binge with lots of fresh meat and green leafy vegetables. Amazing improvement....felt better and folate level went up to 20 in 4 weeks, also gave the doctor a copy of my multi vitamins I was taking for 7-8 months prior to blood test-containing the recommend daily dose of B12 and folic acid (so how could my folate be so low?) told to stop folic acid, eat normally and come back in 4 weeks, folate level dropped to 7 in space of 4 weeks, feeling crappy again. Told to take folic acid for a year but keep eating leafy greens (I now eat more spinach than Popeye!) refused referral to memory specialist and gastroenterologist. Dizzy spells getting worse. Gland in right side of neck under ear always swollen when I'm feeling really bad. 2 more doctors visits refused memory specialist/neurologist and a gastroenterologist again and again. Told I have IBS and that's it. however- memory still pants, and carpal tunnel and numbness headaches etc still happening, liver pain intermittent, starting to get spasms in my arms and legs sometimes like a bug is crawling under my skin. Kept going to doctors as feeling down and lacking any excitement for life in general, told I am depressed and need anti depressants. These gave me the worst headaches of my life and stopped them after a week without any improvement in my mood I might add. Doctors again in December of 2015- this time doctor tests me for Coeliac disease, eeerrrr ok ?! Had the blood test and went gluten free until I got the results. WOW what a difference!! No aches or pains anywhere for like the first time in 14-15 years, headaches cleared after 2 weeks, no carpal tunnel, diarrhoea stopped too. Sleeping better, and no confusion although my memory didn't improve. blood test results- one of the two was inconclusive 2nd said non-coeliac ??????????? Puzzled but as I was feeling better I carried on with the gluten free diet and I had some Peronni grand reserva lagers on New Year's Eve, bad idea! In bed within 2 hours, bloated, headaches feeling like I have flu. Next day-major dizzy spells and god awful ringing in both ears. Took 3 days to feel better. Still on gluten free diet as I was feeling so much better. mid January 2016- accidentally had gluten in the form of barley in a 10gm sachet of brown sauce on a breakfast of tomatoes, bacon, eggs and mushrooms. Two hours later headache, diarrhoea, feeling sick as hell, home to bed. Next day couldn't even stand up dizzy spells were so bad as was the ringing in my ears. Decided to see a gastroenterologist privately. Spent 3 days in bed with what I would describe as severe flu but no cough or runny nose. tested for coeliac disease again, but doctor seemed to ask me more pertinent questions, concerned about my liver and 13 years of diarrhoea. Books me in for an endoscopy and colonoscopy straight away (on the nhs as he is private and nhs) runs some bloods, iga comes back as 3.7-normal, elevated liver enzymes, elevated ige. Writes letter to my gp saying I might need an mri depending on results of biopsies. Suggests to my gp in his letter that I might be seronegative. Go to my gp, told him I am in for a biopsies and he says make sure you are eating gluten, still wants me to go on anti depressants and says I'm unlikely to be coeliac due to my iga results (in a period of 5 weeks when I accidentally ate gluten twice two weeks apart). 17-03-16 still waiting for biopsies, but remembered something after reading the posts on here.... I often get insanely itchy blisters on my ears, full of lager coloured fluid(usually I pop them to make them scab and disappear quicker) I also remember getting similar ones but not so fluid filled on a couple of my fingers, so itchy that I would take a nail clipper and pop them to get some relief. Last few weeks of being back on gluten I have been getting the odd very itchy red spot on my forearms.. So decided to go to the doctors again with this new information as it looks like dermatitis herpetiformis .....result? No! Told I am severely depressed and need anti depressants, and promptly gives me a sick note signing me of work for two weeks with depression and wheat intolerance?!?!?!? I'm self employed and own my own business with people working for me!!! So what the hell was the point in the sick note? i honestly think I'm going crazy, certainly my gp thinks I am! but would like to hear feedback on whether people think I'm mad or whether I'm coeliac or gluten intolerant. And whether my symptoms sound consistent with other people's. thanks justin
  3. I just noticed that some Talenti gelato flavors that were previously labeled "gluten-free" on the tubs no longer have that statement. Is it possible that these flavors are no longer gluten-free? On their website, it says they are gluten-free, but no indication on the label. I'm talking about the Mediterrenean Mint and Butter Pecan in particular. What is the deal with this?
  4. Hi everyone, This is the first time I've made a post to a forum like this. Similar to most people posting on these boards I've suffered from undiagnosable and chronic ailments that have severely damaged my quality of life. My main symptoms are neurological but I have reason to believe the root problem is dietary. My mother recently had a bout with Breast cancer. She is in remission now, but the experience has made me want to make the most of my life. I have decided that it isn't enough to just trudge through life going through the motions. I want things to be easy for me like they seem to be for everyone else. I don't want getting out of bed in the morning to be a Herculean accomplishment anymore. I just want a chance, a fair chance to compete out in the world. I feel like I wasn't made for the world that I live in. I want to have a career and a family, but I fear without getting my health under control I won't be able to. It would be vert helpful if anyone said that my symptoms even sound familiar to them. I have been to doctor after doctor and very few have made any comments beyond "I dont know". Basic history: gender: female height: 5'7" weight: 113 lbs BMI: 17.7 Age: 23 Main symptoms: 1. Traumatic birth: I was born about a week late at 11 lbs 4 ounces, a very large baby delivered naturally through a very traumatic birth (forceps were used). Within hours of my mother first holding me in her arms she noticed me moving oddly, as if I was shivering from the cold. This shivering can be seen on home video footage. 2. Involuntary movements and tics: My entire childhood I suffered from severe tics and involuntary movements. I could not sit still for the life of me. I mean I could barely sit for ten minutes to watch a cartoon, and when the commercials came on I would leap from my seat and run around the house in circles. As I got older I got better at holding my tics in, and I would come home from school after a day of holding all that excess energy in and release it by literally sprinting up and down the stairs in my house for hours at a time with little relief. 3. Chronic fatigue: When I was 8 my grandmother passed away. Around that same time I felt that my tics had worsened, and I began to develop severe fatigue. The level of fatigue I reached is almost indescribable. A healthy person would only be able to reach that level of exhaustion after years of physical torture, and I say that understanding the full weight of that statement. I always thought that it was a coincidence that my health deteriorated so rapidly after my grandmother's death, but after reading that emotional upheaval can trigger dietary responses I'm not so sure anymore. 4. Persisting chronic fatigue: I maintained that level of fatigue until I was a freshman in high school. The years between age 8 and age 15 were the worst of my life. I completely lost these years. I was so tired sometimes that I felt like I was hallucinating, and I would intentional hurt myself to know whether I was awake or asleep. It felt like no matter how much I slept nothing changed the way I felt. 5. Diagnosed with Akathisia at age 15: Akathisia is a term for a chronic inability to be still and a feeling of inner restlessness. There is always a precursor for this disorder such as heavy drug use or brain damage, both of which do not apply to me. It's been explained to me that my neurological problems come from deep within the brain. The traumatic birth I experienced would not have been sufficient to cause Akathisia. I would've had to have brain damage to the point that I would not be a functioning human being. However, I was medicated with Clonodine which helped me enormously. This calmed the excess electrical energy in my brain and allowed me to sleep better and get my tics under control. 6. Persisting fatigue and low body weight: After being medicated with Clonodine it was like I was being freed from a prison. I was still tired and not able to function as well as my peers, but anything was better than what I had been living with. The euphoria from making some progress on my health problems was enough to keep my concerns at bay for about 5 years. 7. Pelvic floor dysfunction: After about 3 years of searching I diagnosed myself with Pelvic Floor Dysfunction. Intercourse is excruciatingly painful for me. This is because the muscles and ligaments of my lower abdomen have been inflamed to the point where they are tense and immoveable. Physical therapy has helped me a lot with this however my progress is slow and quick to reverse if I don't keep up with it, $200 a week for physical therapy and 20 minutes of exercise a day. I am so thankful I have the resources to pay for my doctors visits, but for someone like me who is working a full time job (and who has the added full time job of managing my various illnesses) that is really hard for me to keep up with. I certainly have some source of inflammation in my abdomen, I believe it's leaky gut. 8. Low weight: I am very skinny and always have been despite caloric intake or lifestyle. I've been told since I was 6 years old that I was shockingly skinny. Strangers feel compelled to comment on my weight and ask if I'm sick. Teachers and coaches pulled my aside in school to ask me if I had a problem with eating. At every turn my whole life people have iterated to me that I look sickly, pale, and anorexic. I managed to get my BMI into the normal range my senior year of college (yay, haha) by eating 8,000 calories a day, being completely sedentary, and with the help of an illegal appetite stimulant 9. Sinus infections and bronchitis: I would estimate prior to being medicated with Clonodine I got a sinus infection about once every six weeks and bronchitis twice a winter. After being medicated those numbers have about been cut in half. 10. Alcohol intolerance: I have never tolerated alcohol well but as I have got older its gotten worse. I used to simply turn a deep shade of purple when I drank, now I get nauseous and vomit almost every time I drink. 11. Insomnia: I have always had troubles with sleeping, however I am at the point where I cannot sleep without deadening my nervous system. My body only sleeps when I take something that addresses the excess neurological activity in my brain with marijuana, klonopin, opiates, alcohol, etc. I can take heavy doses of sleep medication and not be able to sleep. 12. Indigestion and diarrhea: I have diarrhea about four to five times a day and am always very gassy. I have gas pains sometimes that are so intense that it takes my breath away and I jump out of my seat in pain. 13. Poor concentration and OCD: I can't concentrate on anything very well and I have obsessive racing thoughts constantly. 14. Confusion and cloudiness of the mind: I constantly mess up what I mean to say. I often swap words within the same sentence. I often only say parts of sentences (ex: I meant to say "Where is he from?" but I end up saying "Where is he?"). I have identified this as a problem, however my family is reluctant to confirm this for me because they don't want to make me feel bad I think (more ridiculousness to deal with, although it comes from a good place). I will ask my mother if she notices me doing this and she'll say "that happens to everyone". But when I have a particularly bad moment of faltering with my words I'll ask my mother later what she thought about that incident and she'll respond by saying "I just said to myself you were having a bad day". (Confusion all around! Haha. I'm confused about whether or not I am confused, you gotta laugh at it sometimes!) CONCLUSION: If you've gotten to this point, thank you from the bottom of my heart for taking the time out of your day to try to understand whats wrong with me and offer guidance or helpful advice. It would be nice for someone to even say that they've been in my position. I've always assumed that I was the only human being on the planet walking around with a mysterious disorder called "Generalized Akathisia", but maybe I'm not and maybe theres something more that can be done to help me. At this point my family and close friends think that stress is causing the bulk of my problems, like I'm crazy and imagining this entire thing. I do think that stress plays a major role because every time my symptoms have worsened and health has deteriorated further this has been accompanied by a major stressor. But shouldn't I be able to handle stress the way everyone else does? Breaking up with a boyfriend and taking care of your sick mother are normal parts of life. What am I supposed to do? Move to a farm with no electricity and cut myself off from the world? ps: just ordered tests from Entero Lab, sample will be sent next week. Thoughts? Comments? Doctor recommendations in the Greater New York area?
  5. Rivkah Roth D.O., D.N.M.

    The Celiac Disease Confusion

    Celiac.com 08/28/2012 - What's In A Name and When Does Celiac Predisposition Become A Disease? No doubt that global awareness about celiac disease and its possible involvement in a myriad of other (mostly autoimmune response related) conditions is growing. Growing, unfortunately, is confusion about terminologies and medical implications. The “Common” Understanding "Celiac disease" has become a generic blanket term not unlike how "Kleenex" today signifies no more than a box of tissue paper of any brand. So, in the public mind, "celiac disease" today stands for everything connected to a reaction to gluten.[1] Such an approach is highly imprecise and misses the need for distinction between non-celiac and/or celiac gluten sensitivity and the fact that a predisposition does not necessarily constitute disease. The 2012 Internationally Accepted Definition In an attempt to bring some clarity to the medical community, the world’s leading celiac minds earlier in 2012 met for an international convention in Oslo, Norway.[2] During that convention, and after considering many of the most commonly used terms, they recognized …the presence of genetic, predisposing patterns… and called for a …distinction between "celiac disease" versus "gluten-related disorders"… [3] Let us be clear: This terminology refers solely to the underlying toxic effect of gluten rather than the possibly resulting disorders that may be based on other, additional triggers as well. Genotyping Tells Non-Celiac from Celiac Gluten Sensitivity Along with ever mounting genotype-related research, detailed HLA-DQ2/DQ8 human leukocyte antigen genotyping[4] today allows us to distinguish between predispositions to non-celiac and/or celiac gluten sensitivity (NCCGS) predisposition. Increasingly, research results link gluten issues to a considerable list of specific conditions and, therefore, allow for and promote a “natural” approach (i.e. gluten free diet and lifestyle) to resolve a complex panel of non-obvious signs and symptoms. Accordingly, "Celiac" is not (yet) a disease but a metabolic predisposition, i.e. the body’s inability to digest certain grain proteins, prolamines, etc.—much like a gasoline fueled car will sputter and eventually corrode on diesel fuel. Predisposition vs. Disease A genetic predisposition to celiac only becomes a disease (e.g. celiac disease or one of the non-celiac gluten sensitivity enabled conditions)[5] if the body’s inability to digest gluten and certain other grain proteins is ignored at the expense of the immune system.[6] In other words, an individual genetic predisposition to celiac only develops into full blown disease if that particular individual does not adhere to a gluten-free diet and lifestyle. An European Union et al commissioned research paper concluded: The environment clearly plays a crucial role in the development of celiac disease: No gluten, no disease!…. …Because gluten is present in relatively large amounts in a variety of common food products, the daily gluten intake in a Western diet is high. In combination, we see that every HLA-DQ2– and/or -DQ8–positive individual is exposed to a large repertoire of immunogenic and abundant gluten peptides, and this may be an important factor determining disease development. There is, at present, no evidence linking additional environmental factors to celiac disease. [7] Big Business: Catering to a Gluten Free Diet The facts are everywhere and are illustrated further by these research abstract numbers posted on PubMed: 18,565 on “celiac disease” (607 alone in 2012 – Jan. to Jly.) 9,689 on “gluten” (385 in 2012 – Jan. to Jly.) 3,447 on “glutenfree” (192 in 2012 – Jan. to Jly.) In addition, 38,878 abstracts deal with wheat research, whereof 1,862 in 2011, and 1,384 in 2012 to date (Jan. to Jly.). Clearly: $6.1bn spent 2011 on gluten-free foods in the USA—and a 30% growth from 2006 to 2010 in Canada to $2.64bn—indicate “Big Business” complete with the risk of missed, omitted, and mis-information for the goal of promoting greater consumption of gluten-free processed foods. The Challenge Our present naming confusion, therefore, may end up fuelling potential manipulation and mismanagement of the patient and consumer from the part of medical, pharmaceutical, supplement, and food industries. Even the above mentioned latest attempt at coordinating nomenclature and distinction between non-celiac and/or celiac gluten sensitivity brings with it several major flaws and challenges: It may take years for new naming conventions to become accepted throughout the international medical and dietary community. Recognizing a term such as "gluten-related disorders" or “non-celiac gluten sensitivity” calls for a total revamping of our medical and diagnostic systems in order for the large number (so far about 160) of autoimmune and other disorders to be recognized as gluten-related. In addition, future questions will arise as research identifies and confirms more genetic links: Already, clinic practice shows that some of the "celiac" patients, previously diagnosed by positive intestinal biopsy[8] and serological findings now, on genotyping[9], turn out to carry "non-celiac" and not “celiac” gluten sensitivity alleles. Where does this leave such individuals on the traditionally used "celiac disease" versus "gluten-related disorder" specter? Clearly, despite good intention for a more precise naming distinction, it appears that additional work is needed in order to entrench new medical terminology and disease pictures. Conclusion Until then, whenever one of my patients receives a positive HLA gene test, I will adhere for clarity’s sake to the terms of “non-celiac” and/or “celiac gluten sensitivity” (NCCGS). This terminology refers solely to the underlying toxic effect of gluten and prevents a wrong implication of predisposition=disease diagnosis. Instead, “non-celiac and/or celiac gluten sensitivity” will simply point to the inherited underlying predisposition to specific additional triggers and complications if exposed to gluten. Most importantly, I will make sure to instill in my patients that disease is not the inevitable outcome of their genetic predisposition, and that a 100% gluten-free diet and lifestyle allows for avoidance, control, and perhaps even reversal of a complex web of interrelated autoimmune-based conditions and disorders, both for non-celiac and for celiac gluten sensitivity related disorders. [1] http://www.ncbi.nlm.nih.gov/pubmed/22351716 Ann Intern Med. 2012 Feb 21;156(4):309-11. Nonceliac gluten sensitivity: sense or sensibility? [2] http://www.ncbi.nlm.nih.gov/pubmed/22345659 Gut. 2012 Feb 16. [Epub ahead of print] The Oslo definitions for coeliac disease and related terms. [3] http://www.ncbi.nlm.nih.gov/pubmed/19940509 Int Arch Allergy Immunol. 2010;152(1):75-80. Epub 2009 Nov 24. Differential mucosal IL-17 expression in two gliadin-induced disorders: gluten sensitivity and the autoimmune enteropathy celiac disease. [4] http://www.ncbi.nlm.nih.gov/pubmed/22123644 Curr Opin Gastroenterol. 2012 Mar;28(2):104-12. Advances in coeliac disease. [5] See future articles posted in these pages... [6] http://www.ncbi.nlm.nih.gov/pubmed/21787225 Int Rev Immunol. 2011 Aug;30(4):197-206. Important lessons derived from animal models of celiac disease. [7] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC209453/?tool=pmcentrez J Clin Invest. 2001 November 1; 108(9): 1261–1266. doi: 10.1172/JCI14344 PMCID: PMC209453 Interplay between genetics and the environment in the development of celiac disease: perspectives for a healthy life. [8] http://www.ncbi.nlm.nih.gov/pubmed/22742547 Arch Pathol Lab Med. 2012 Jul;136(7):735-45. An update on celiac disease histopathology and the road ahead. [9] http://www.ncbi.nlm.nih.gov/pubmed/21593645 J Pediatr Gastroenterol Nutr. 2011 Jun;52(6):729-33. HLA-DQ genotyping combined with serological markers for the diagnosis of celiac disease: is intestinal biopsy still mandatory?
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