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Found 28 results

  1. Hi, Im a bit confused about my symptoms so hoping for some insight. I have been suffering from a range of symptoms, which all started just after I had my second child (who is nearly 3 now). I have constipation on and off, mucoua in stool, undigested food in stool, insomnia which sometimes is very severe...I cannot sleep for days, migraines, sinus pain, vertigo, burning feeling in ears, sore joints, pain in knees and lower back pain. I also suffer from wind when I am constipated. I dont really feel bloated and my stomach doesnt swell or anything. I didnt connect it to anything I was eating until recently. I assumed it was stress related. However I have noticed that when I eat grains, they come out undigested and I almost alseays have constipation about 2 or 3 days later. I ate the grain feekah a few days ago...and now am constipated again...with fully recognisable grains. Sorry for tmi! I am wondering if the fact the grains are undigested...is this a reliable way of determining that it is the culprit food and that is causing problems? Is it possible just to have an intolerence to grains but be ok with other wheat sources such as bread etc? I am also wondering if wheat allergy and/or gluten intolerence or celiac disease, can just develop out of the blue? I havent had any problems before until the past 2-3 years. Also, can it be triggered by stress/ pregnancy/giving birth? My doctors arent the best tbh...so I havent really gone back as I get fobbed off. Im going to try eliminating foods from diet to try to see what helps. Any advise etc greatly appreciated. Karolina
  2. dylannn

    poops!!

    i have been having health issues for a while so i'm finally giving up gluten to see if i'm gluten sensitive and if that's the issue. it's been 48 hours since i've had gluten and prior to this point i had been constipated for months. in the last two days i've gone 6 or 7 times. is my body getting rid of all the bad stuff like a detox? am i doing something wrong or is my body telling me this is right??
  3. ok today is officially one week i've been gluten free and i haven't made any noticeable differences in feeling better. my first question is: how long should i wait to expect changes to occur? am i not giving it enough time? prior to going gluten free one of my issues was constipstion, as well as other health issues usually involving an upset stomach, nausea or an uneasy feeling in my stomach. but since going gluten free i have had a bowel movement different from usual. and today it was more loose and diarrhea like and it is very rarely like that. oh and about half way through the week i got a random rash pop up on one ankle???? advice or suggestions??
  4. Celiac.com 12/23/2009 - One of the main and largely unrecognized health problems facing the Western world and people on diets of highly refined, processed and starchy foods, which are often low in or devoid of dietary fiber, is that of constipation. This is a particular issue with Celiacs where the gluten-free flours they use are largely starch based and often low in protein and dietary fiber. Unfortunately, we live in a world where it is often considered normal and acceptable to empty the bowels perhaps 2 -3 times a week, rather than the more desirable 2 – 3 times per day. What are the difficulties in this you may ask? Firstly the lymphatic system drains through the bowels and if the bowels are clogged and constipated the lymph system, which is a major part of the human body’s excretory system, does not function properly. This means that instead of continuously draining, as it should, the lymph system becomes a long term storage system for the body’s waste matter when confronted with a constipated digestive system, which provides a home and breeding ground for bacteria and perhaps becoming a precursor for infection and many chronic health problems including cancer. Constipation also leads to dry and hard stools which are difficult to pass and may contribute to the development of hemorrhoids or “piles”, as they are commonly known, and possibly longer term issues leading to colon and rectal cancers. Constipation also leads to greatly increased and undesirable residence time for waste matter in the body which solidifies and putrifies in the process possibly contributing to various forms of gastric and bowel cancer. Other parts of the body’s excretory systems including the sinuses; the lungs and the skin, the body’s largest excretory organ, can also become overloaded if the bowels and lymph system are not functioning correctly. Sinus overload can be reflected in having heavy mucus discharge via a cold or the flu, glandular fever and in nasal, eye and ear infections, from infected, stored mucus. Lung overload may be reflected by mucus discharges associated with a cold or influenza, pleurisy, pneumonia and various other forms of mucus containing fluid which may also become infected by hostile germs and bacteria. Skin overload can be reflected in rashes, eczema, psoriasis, measles, hives, shingles, chicken pox and the like: all symptoms of an acidic body condition and an overloaded elimination or excretory system. If the body cannot dispose of its waste matter by other means, it often resorts to throwing the waste matter out through the skin. Chronic fatigue syndrome is possibly another manifestation of this same issue. Sadly, the vast majority of the human race, end their lives with all of their excretory organs, lungs and blood circulatory systems overloaded with stored waste matter with significantly shortened life expectancy and diminished quality of life as a result. None of the latter problems have anything to do with or need to be part of the aging process. For example, I have a very spry, mentally alert 90 year old father, A blood group type, who still works on a daily basis, drives a car, is totally medication free, has no prostrate, heart or cancer problems and has a good head of hair; clear skin, eyes, arteries and lungs. He should be the model of normality. Sadly, he is not typical. How and why? A fairly spartan diet based mainly upon fruit and vegetables with very sparing consumption of meat, dairy products, fried foods, salt, sugar, animal fats, cakes, lollies, convenience foods and alcohol. He has never smoked. He drinks mainly water and fresh juice with fresh citrus juice first thing every morning. He eats slowly and chews his food thoroughly. He never overeats. He remains curious, physically active and engaged with the world. My paternal grandmother, Daisy, was still walking around without the aid of a stick at age 106 – 107 with all her faculties and complaining about all the other “old chooks” in the nursing home on their walking frames etc: many of them 40 years her junior. Adequate sleep and minimizing stress is also critical to maintaining good health. Most of the chronic health problems facing our community are mainly unnecessary consequences of over indulgence and the accumulations of a lifetime’s bad habits and, in most instances, with a little care these habits are largely avoidable. Fevers and colds are natural processes. They are part of the body’s armoury of natural defense mechanisms for dealing with a cleansing crisis. All too often these and other natural processes are medically suppressed rather than being allowed to run their natural course. They are one of the body’s ways of saying it is overloaded with waste matter and that it needs a chance to deal with this problem. Antibiotics, taken orally, also tend to indiscriminately kill both good and bad gut bacteria often inadvertently disrupting the long term performance of the digestive system to the long term detriment of the patient’s health especially when no restorative probiotics are prescribed as part of the process: which is mainly the case. How do we avoid these problems? By a host of small, simple and easily implemented strategies over a lifetime: by a little self discipline and the formulation of good eating and nutritional habits which enable our bodies to function effectively, naturally, healthily and sustainably for a lifetime, as they are intended to. Ill health is not our natural state but one we impose upon ourselves, or otherwise, through our dietary and lifestyle choices, both individually and collectively.
  5. Prologue I never know what to call a post. What Else Could it Be; Co-Morbidity in Celiac disease and what else could be causing your Celiac like symptoms or I had Celiac Disease and developed Pellagra. This is my story yours may be similar. I have tried to write as much as I could of this beforehand to summarize some of my experience and research since I was first serology confirmed a Celiac and why I think Pellagra explains if not all the complications a Celiac develops at least many of them seem common in undiagnosed Pellagra but I find formatting and links can be a challenge. This is not meant to be an answer to all your questions but a beginning, posterboy by God’s Grace. See post that follows “I had Celiac disease and developed Pellagra”. Good luck on your journey. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things”. I had Celiac Disease and developed Pellagra I try and educate about how Pellagra can be confused for Celiac disease and/or GI problems like IBS, GERD, Ulcer’s, UC etc. after having received a Celiac diagnosis and my symptom’s improved greatly after taking Niacinamide (the non-flushing form of Niacin). And almost without fail people do not see the connection. They say but I have … . fill in the blank. They don’t see the connection. But if I say it this way maybe it will help you “I am a Celiac who developed Pellagra” or fill in the blank … . heartburn, IBS, UC, Chron’s etc. I named this post this because another board/forum member said as much in a thread post on this forum and it struck with me. She had the digestive problems of a Celiac but also the dermatitis issues of DH and her itching got better after taking Niacin. What we fail to understand often with any diagnosis there is continuum of disease/symptoms. Since this happens gradually you develop heartburn first then you have IBS, and Constipation and diarrhea then maybe an ulcer etc we don’t often see the connection. But all along it was the same disease in a more pronounced condition. If we catch it early enough say at IBS then the ulcer or UC might not develop. When we think spectrum of disease it helps us to understand these diseases’ can be and are more related that we often understand. They are all bound by STRESS. Do not all these conditions worsen when you are stressed does not the heartburn turn into IBS i.e. your constipation and diarrhea flare up? Yet we think of them as separate diseases Right? No there is a continuum of disease bound by STRESS and TIME. The longer the stress the more your symptom’s Right! You just haven’t stopped to think about the relationship. Relationship and time is important to a proper diagnosis. So how are these related? Our mucus membranes are always in a constant state of repair either of repairing or rebuilding what is broken or maintaining our bodies defenses. This takes energy and lots of it and one is not able to make enough energy to repair the lining of our stomach without enough Niacin and Pellagra develops. I am not even saying I have been cured of Celiac disease. I say my GI symptoms are in remission which leads me to Pellagra as a cause and effect relationship of stress and our environment — Epigenetics. I am saying I was/am a Celiac who developed Pellagra. The International Journal of Celiac disease notes that both Pellagra and Celiac disease does often occur in the same person. How do we know this? The Journal of Celiac in an issue entitled Celiac Disease Intestinal Heart and Skin Interconnections http://pubs.sciepub.com/ijcd/3/1/6/ when listing common aspects of both diseases’ says and I quote “The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease.” Which also explains why a Genetic disease can increase in two or three generations because our stress changes our genes. There is a trigger. Stress — it is not your day to day stress. We can handle all that kind of stuff but TRAUMA lasting 3 or 4 more months at a time. Think when Celiac disease was first studied as a Disease? It was during and directly after WWII and I dare say a stressful time to say the least. Not to mention all the energy needed day to day to just survive. Europe almost starved after the war. So much so he U.S. government had to step in and help deliver/air drop humanitarian aid to Europe. It was called the Marshall Plan named after the man who devised the relief plan and it is credited with keeping Europe alive after WWII and averting another possible world war because of the infighting that would have developed from a starving Europe. 3 to 4 months is approx. the exact time we can store B Vitamins. Anything that triggers the fight or flight high energy response (TRAUMA) that depletes our bodies reserve’s. Stress is coincidently what Niacin helps us control. It (Niacin) helps control our stress response’s in the body without which cellular disfunction happens (are membranes brake down). Like the alternating constipation and diarrhea you have had for years if you have developed Celiac disease. Things like a Car Accident, difficult divorce, injury to our kids, extended care giving, surgery etc. can and often does trigger GI problem’s. And yes the stress of pregnancy. And it (STRESS) is common with with/before a pregnant lady gives birth triggering heartburn. A good example is pregnant women in their 3rd trimester often develop heartburn that’s goes away when the child is born. Those who are predisposed continue to have heartburn and GI problems because their body couldn’t meet their need. Half of pregnant women develop heartburn during pregnancy that goes away in all but about 1/3 of those who get heartburn when the child is born. Think of Heartburn as infant Celiac disease if it helps you to think in these terms. The older/longer the heartburn persists or the more GI symptom’s (heartburn/GERD/IBS, Constipation, diarrhea, ulcer etc) reoccur the more serious the conditions and diagnosis becomes. The genetic component is that 1/3 are predispose to high Niacin consumption when stressed. It is those1/3 of us who had Pellagra and Celiac disease developed is who I am trying to help. But it should be noted up and until your Celiac diagnosis things like the Ulcer, UC, IBS etc can/could be helped also if Pellagra is the Parent diseases and all these other diseases are its children. Co-Morbidity is the term. A B-Vitamin deficiency can be inherited but does not have to be permanent. It is a reversible condition. See this new research that ties eczema in babies to low Niacinamide in the mother during pregnancy. Nicotinamide is usually the way Europeans spell Niacinamide. Both names refer to the same amide form of Niacin. https://www.sciencedaily.com/releases/2016/09/160923092924.htm The very definition of a Vitamin (especially in the case of B vitamins) a vital (life giving) nutrient/substance needed in a minimum amount without which we become sick. Your continuum of diseases are completely reversible if your symptom’s look like Pellagra (digestive, dermatitis and dementia’s) in nature and your respond (BURP in 3 to 4 months) to Niacinamide you might have Pellagra and the doctors have not figured it out in a clinical setting (they are sub-clinical) yet or at least you (may) have Pellagra and Celiac Diseases Co-Morbid. If one is critically low in Niacin the 3 D’s of Pellagra (Dementias, Dermatitis’s, and Digestive Issues) show up. Really there are 4 D’s more on that latter but we are trying to catch Pellagra before it gets that far. The International Journal of Celiac Disease notes this co-morbidity when they note in 58% of Celiac -- Pellagra ALSO occurs. See this link http://pubs.sciepub.com/ijcd/3/1/6/ Quoting their paragraph 3 on the Co-Morbidity of Celiac and Pellagra together 3. Pellagra and Celiac Disease “The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38]. The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40]. “ 58% of the time (that is a majority folks) Celiac’s go on to develop Pellagra too! Or is it really the other way around? Have you had Pellagra all along and now you have developed Celiac from it (Pellagra) undiagnosed. The later may be more true than you know. Ask your friends if they have ever heard of Pellagra. I dare say it a low percentage that knows Pellagra a once rampant disease especially in the rural south can cause many of the GI problems you are now experiencing as a Celiac disease patient or even the Non-Celiac Gluten Sensitivity (NCGS) patients that have not yet received a Celiac diagnosis. And it maybe a lower percentage today that know what Pellagra (or even that they could have it) is than have heard of Celiac disease or think they have Celiac disease instead. Think beri beri, rickets, scurvy etc all complex diseases completely forgotten about today that were/are completely reversible conditions. As Dr. Heaney points out about Pellagra today! That as Creighton’s University Dr. Heaney says “In the United States, at least, Pellagra is a disease of the past – fortunately – and it is doubtful today that most health professionals would recognize it if a case happened to come to their attention.” See Dr. Heaney’s Professor of Medicine post here at this link http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ The knowledge of Pellagra (if you have ever heard of it) is in that same state of forgotten diseases now thought relegated to the history books. If you have Pellagra co-morbid then you just have to take a Vitamin to get rid of this morbidity. This is a summary of my 10 year journey. I researched these things for 3 to 4 year (2 Tim 2:7) before I had the courage in my conviction to test this Pellagra theory. But I think most people would rather hear from some who has suffered like them and has been able to help themselves. This is not theory anymore for me. It is my story. In case this is the only post you read I will repeat here for knowledge sakes ****** the number one mistake people make when taking Niacinamide is they don’t take it often or long enough. It should be taken UNTIL you are burping. Most people will burp when taking Niacinamide in 3 to 4 months or less taking it 3/daily — ie with each meal. What do I mean by burping? This confuses some people sometimes. I don’t mean the little burp you get with drink some carbonated beverage or burp a little in the first 20 minutes after eating but also are bloated. But your new normal BURPING the natural order of things burping – The burp will come later after the meal the longer you take the vitamin. Burping will occur the more frequently the less you eat. Soon water will cause you to burp -- Burping without the bloat and distension (pain from gas) that comes later. When your stool begin sinking your body is digesting the carbs and proteins that were causing you the backwash (heartburn/GERD/IBS) before when you only burped a little or occasionally or when you drank something carbonated. Now BURPING will occur two hours after you ate something. Long after you have finished your meal you will burp if you have taken the Niacinamide 3/day for 3 to 4 months at a minimum. Dr. Prousky proved this 15 years ago this past November that Niacinamide treats digestive problems. http://www.yourhealthbase.com/database/a124b.htm Yet 15 years later people still are bemused when you mention Pellagra let alone that Pellagra could be contributing to your Co-Morbid Celiac disease. I for one will tell those will listen. I am a Celiac who developed Pellagra. Learn from my mistakes so you don’t have to repeat them and get your doctor to test you for a Niacin deficiency. Pellagra once rampant early in the 20th Century is now known TODAY as Celiac disease in the 21st Century (I believe) or at least in a good majority of cases could be. To paraphrase William Shakespeare “Disease by another name hurts just as much” and maybe more because if you get the right disease you can get better! You know have the power to help yourself forum reader (because knowledge is power) the question is what will you do about it? This blog post is a store house of 10 years of research learned from life experiences. The blog’s author has been stung so you don’t have to be. Learn from my mistakes. No man is so dumb as the man who won’t learn from other people’s mistakes. Take as much honey (knowledge) as you can from my mistakes so bad health will not sting your quality of life. Is it any wonder God’s promised land was described as a land flowing with milk and honey? Where knowledge flows there is health of mind and body. Feel free to ladle and dollop your life with the sweet stickiness of the truth (knowledge) found/ gained today. For honey like truth stick to you once in contact and you can’t just wash it away. Don’t let them the doctor’ almost kill you before you are willing to take a Vitamin to see if it is really the Co-Morbid Pellagra as the International Journal of Celiac Disease notes that could be causing your Celiac symptom’s in the MAJORITY of Celiac patients if the International Journal of Celiac disease is correct. Quoting again from the IJCD “The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38].” See this link provided again for easy reference http://pubs.sciepub.com/ijcd/3/1/6/ Stop the madness! Admit the MAJORITY of Celiac Patients today are Co-Morbid with Pellagra and if you treat the co-morbid disease you can get better from that morbidity. The Celiac Posterboy might say “(Unfortunately) for most patients it (Pellagra) is not recognized as Disease TODAY! By their admission (a professor of medicine/health professionals/doctors) Pellagra is OMITTED as a disease in most doctor’s differential diagnosis TODAY!” If you have (a) Celiac disease diagnosis then you have been stung with/by this ignorance. That as Creighton’s Dr. Heaney says “In the United States, at least, Pellagra is a disease of the past – fortunately – and it is doubtful today that most health professionals would recognize it if a case happened to come to their attention.” See Dr. Heaney’s Professor of Medicine discussion about why Pellagra is not diagnosed today here at this link http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ This blog post is about the ignorance (of) Pellagra cost’s you when the doctor’s diagnose you with Celiac Disease/NCGS when 58% of their patients is/are Co-Morbid with Pellagra and they get the wrong “key” diagnosis. **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen. But I have found and my friends have found if you take it (Niacinamide) like an antibiotic (UNTIL BURPING) and your stool SINK then 95% of your GI stress will be in remission. You could still have other things that are bothering you but it won’t be Pellagra. If you take fiber and still have GI trouble then eliminating supplemental dietary fiber for 30 days (like you did to see if gluten was your’ problem) might help you figure out whether the fiber is helping or hurting your GI problems. People do have bad reactions to fiber sometimes that can be confused for IBS problems and unless you try eliminating it for 30 days you won’t know for sure if it is causing or contributing to the remaining GI problems you might still be having after taking Niacin until burping if any. As I am fond of saying “To Educate is to truly Free”. But do not do as I did! Learn from my mistakes. DO NOT take Niacin or Niacinamide or any form of Niacin UNTIL you have your doctor’s test you for it (Pellagra). If you notice the IJCD link these were clinical observations only. Quoting the IJCD again “It is the first description of celiac disease . . . .and Pellagra in the same person, however, only associative linkscan be established, but not cause and effect relationships. Unfortunately, the patient was not diagnosed biochemically as pellagra and died before gluten free diet was initiated.” You probably know this by now if you are a Celiac or even a NCGS patient the diagnosis rate for Celiac disease can be a horrible and if you have Pellagra it is even worse because the doctor’s like Celiac disease 15 or 20 years ago are not even looking for it today. One more test needs to be done to differentiate Pellagra from Celiac and it is not being done today as Dr. Heaney correctly noted. Doctor’s don’t know to look for it (Pellagra) much less in a Celiac patient. See this link to the Merck Manual a commonly used traditional desk reference for Physician’s when they need to look up a diagnosis. http://www.merckmanuals.com/professional/nutritional-disorders/vitamin-deficiency,-dependency,-and-toxicity/niacin Quoting from the Merck Manual “If available, laboratory testing can help confirm the diagnosis, particularly when the diagnosis is otherwise unclear. Urinary excretion of N1-methylnicotinamide (NMN) is decreased; < 0.8 mg/day (< 5.8 mcmol/day) suggests a niacin deficiency.” No, doctors don’t know everything they have to look things up from time to time too. And when they do look up Pellagra when you ask them to test you for it the way some people on this board went to their doctor’s to have them test for Celiac disease instead of accepting as Gemini on this board said and say you had IBS instead “I Be Stumped” they learned/were taught by their patient’s that Celiac is not as rare as once thought. And neither is Pellagra. Quoting the Celiac Posterboy “Pathology presumably would qualify the Pellagra patient as a Celiac Patient if the Pellgarin was first diagnosed as a Celiac first as often is the case TODAY!” Why is this? The pellagra disease blog explains why this is https://pellagradisease.wordpress.com/ Quoting Niki Frost “Since pellagra is (thought to be my words) such a rare disease today, few people recognize it based on their symptoms alone (any of the three D’s: dementia, dermatitis, and diarrhea). Pellagra patients are consequently (constantly being my words) referred to specialists in fields that are ultimately unrelated to the underlying nutritional deficiency and metabolic nature of the disease.” So the cycle repeats. Since these specialists don’t consider you in a subgroup that is prone to be diagnosed with Pellagra then Celiac/NCGS disease is diagnosed if you are lucky and not some other GI problem like chrons, IBS, UC etc because in these cases the GI specialists is not even looking for Gluten as a possible trigger. This is not to even mention the other D’s of Pellagra today being diagnosed as various degrees’ of Dermatitis like ezcema, psorsias, Dermatitis Herpetiformis (DH) etc which are related to skin presentations of Pellagra. Pellagra when it was first named means rough/sour skin in Italian and people forget that today. Or the dementia’s of Pellagra like depression (40 percent of Celiac’s are depressed) or the “brain fog” a Celiac develops after being “glutened” I could go on and on but you get the idea. But unless you are tested for it your doctor’ won’t know to look for it in their next Celiac patient because they do not know to look for it in GI patients today remember the war on Pellagra ended 75+years ago so they don’t look for (see) Pellagra anymore in a clinical setting unless you are in a subgroup like being an alcoholic etc . The same way they didn’t or might not of known to test their IBS patients for a Celiac diagnosis 10 or 15 years ago. I am not saying this will help you the way it seemed to help me. But I am saying have your doctor verify these things for you before doing these things because if you are a Celiac that has developed Pellagra also then it needs to be documented. If you want to read more about my story search for the posterboy on this board to read my other forum threads or visit the website in my profile. I have specifically left out dosage amounts because the frequency you take a B-Vitamin is more important than the amount you take of it. Because B-Vitamins are water soluble 2 or 3 hours later if one is deficient in that Vitamin then the body can absorb more of it. So taking higher doses don’t necessary help you any more than lower doses. They (higher doses 500mg) can be easier to find especially if you are taking it (Niacin) for cholesterol management but it doesn’t help you any quicker than smaller amounts more frequently and higher Niacin causing flushing (which can be mitigated to some degree by taking Niacin with food) where the Niacinamide form doesn’t. In fact taking smaller amounts frequently 3/day with meals will help approximately 40 percent faster than one larger 500mg capsule/tablet only once daily. And why if given a specific amount and you retain it (is low in the urine) is a sign you are low in Niacin. I do prefer the Niacinamide form because it is a naturally flush free form. The Merck Manual notes this quoting “Nicotinamide is usually used to treat niacin deficiency, because nicotinamide, unlike nicotinic acid (the most common form of niacin ), does not cause flushing, itching, burning, or tingling sensations. Nicotinamide is given in doses in doses of 250 to 500 mg po daily.” But a Slo-Niacin can work just as well. The Townsend Letter makes note of this in their Feb/Mar 2003 edition. http://www.townsendletter.com/FebMar_2003/inositol0203.htm This will be a cycle. You will take it until burping 2 hours after you finish your meal and your stool sinks where before it floated and even water now causes burping without bloating or gas or distension. It might be 3 or 4 months for some people or it might be even 6 months or longer for some people. But it is a cycle. Usually people feel better when they begin burping for the first time in years and their stool now sinks when before it always floated. I do not now take Niacinamide and haven’t for several years since my symptoms’ are in remission. I stopped taking it when I had rebound acid reflux. By that I mean I begin to have acid reflux symptoms when I had no food in my stomach that when away when I ate something. Timeline is important in any diagnosis. All heartburn is not equal. IF your stomach acid was HIGH as you often hear then eating food (carbs, greasy things or your other triggers) wouldn’t bother you because it would only weaken it. BUT if it is low to start with then food will WEAKEN our/your acid so that you lose the food fight you are in and things (carbs/fats) become to ferment, rancidify and cause heart burn. The excess pressure from fermented carbs push open the trap door allowing the low acid you have burn the lining of your esophagus. TRUE heartburn from too HIGH acid happens between meals when there is no food in your stomach to tamp it down and will occur if you take Niacinamide too long and how I knew I needed to stop taking Niacinamide. When low in stomach acid for too long in time this can lead to Non-Celiac disease first and with enough injury to Marsh lesions qualifying you for diagnosis as a Celiac candidate/patient. How do we know this? Low stomach acid has now been linked to a probable cause of damage to the Small Intestine before and/or occurring with a Non-Celiac Gluten Sensitivity (NCGS) or Celiac diagnosis. Celiac.com reports these findings http://www.celiac.com/articles/23432/1/Do-Proton-Pump-Inhibitors-Increase-Risk-of-Celiac-Disease/Page1.html Note how the researcher’s starts the article “Rates of celiac disease and the use of drugs to inhibit the secretion of stomach acid have both increased in recent decades. A research team recently set out to explore the association between anti-secretory medication exposure and subsequent development of celiac disease.” If these medicine are lowering stomach acid what cause effect relationship does/ could this have on Celaic/NCGS diagnosis is what they are postulating. They go on to say without being very technical (read the whole article for yourself) that “The data clearly show that patients who use anti-secretory medications are at much greater risk for developing celiac disease following the use of these medicines.” . . .. Summarizing their findings “The fact that this connection persisted even after the team excluded prescriptions for anti-secretory medicines in the year preceding the celiac disease diagnosis suggests a causal relationship”. Now the term causal is not used lightly. To prove causal is much harder than casual (occurring with) like the 58% of Celiac who are also casually observed as having Pellagra. Gluten Free works summarizes a casual association of a Niacin deficiency very well at this link https://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/ They only note a casual association only noting similar symptoms occur in Pellagrin’s too. Quoting “ Inadequate levels of niacin slows metabolism and impairs functioning of the brain and nervous system, digestion, skin, DNA repair and other key cell processes, and steroid and sex hormone production. Severe deficiency of niacin causes the disease pellagra.2 “ I can not prove that Niacin helped me because I did not know to test for it or have the doctor test me for it but you can teach your doctor to look for i it in you if you are an IBS, NCGS, or Celiac patient by sharing the information in the Merck Manual with him/her. To prove causal you will have to have your doctor test you for a Niacin deficiency verifying the International Journal of Celiac disease casual observation that the majority of Celiac are co-morbid with Pellagra establishing if not a causal link that it at least contributes to your concomitant GI conditions in at least the 50 percent of Celiacs’ who are low in Niacin and don’t know it. Taking the Niacinamide as the Merck Manual notes in their key points for doctors can confirm the diagnosis. Quoting “Use nicotinamide/Niacinamide to treat the deficiency; a favorable response can confirm the diagnosis.” If you want to research more about Pellagra and how it can present as so many different diseases and its clinical presentation(s). I say presentation(s) because if it begins with a “D” i.e., dementia, dermatitis or Digestive Disorders(s) (I added the S to Digestive Disorder because I think it speaks to the spectrum of diseases) that Pellagra can and is often confused for in modern medicine. And could be added to dementia(s) and dermatitis (s) see above about depression and Celiac and Pellagra meaning rough/sour skin in Italian and the Hindai link below to do more research on Pellagra if this blog post is not enough to answer all of your questions. Read this great Hindawi article linked below for a great synopsis of Pellagra https://www.hindawi.com/journals/cggr/2012/302875/ where they pose the question what role does Pellagra play in contemporary disease (today) In one of their breakout paragraphs talking about Pellagra today! They discuss how Pellagra is still prevalent today in contemporary disease pathways entitled “Is Subclinical Pellagra Relevant to Contemporary Disease?” And they list a dozen plus ways it is and I whole-heartily agree and I hope you do too after reading this post. And doing some of the research listed therein. It bears repeating though I said it earlier **** Note: This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen. Good luck on your journey and I hope it helps you the way it seemed to help me. Posterboy by God’s Grace! 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Blessed are those who will hear and take a Vitamin for their health or at least have their doctor check their Vitamin levels so they can get better from that morbidity if indeed as the International Journal of Celiac disease notes – Celiac’s are co-morbid with Pellagra in the Majority of celiac patients and the doctor’s don’t know yet to test for it but by having your doctor test your urine for low levels of Niacin it indicates you are retaining Niacin to maintain and repair your membranes the doctor can treat you for this morbidity a sign of undiagnosed Pellagra today.
  6. Hello, My name is Bryan and I'm 23 years old. I've never made an account on any website to talk about this, so this is my first because I have a lot to say and I have been avoiding this. I guess I'll start off giving some history of the issues that I have been having. When I was 18 I was getting pretty serious about lifting weights. I started off at about 160 lbs and got to about 180 when I was about 20. Once I hit 20 years old I injured my back pretty bad to where I was in bed for 3 months, and during the time I started to have some GI symptoms around this time. At the time I thought I was literally having heart attacks due to a serious pain in my chest. It would show up sometimes when I ate food, and especially when I drank caffeine (I never really cared for caffeine, but at this time a preworkout Jack3D got me hooked on it). However, I ended up going to Dr. and he ended up telling me I had GERD within 10 minutes, shortly after that he left the room and came back with Nexium (had to be prescribed at the time). I took Nexium for a while and it helped, but once I got off things were worse. I also couldn't take it anymore because I had a SERIOUS pain in the center of my lumbar spine that would only go away if I went #2. So, I tried the holistic path to get rid of this heartburn. Good news is that I beat heartburn, it's been years since I ever even had it. This event was from about 19 to 20 years of age (Just turning 20 it ended). On the flip side, right when I was turning 21 something else slowly started to happen. I first started off with symptoms of being EXTREMELY TIRED 30 minutes eating a lot of the time. When I was 21, I was working at a dollar store and the first time I noticed one of these episodes I was so tired that I couldn't stand up. So, I just sat on the floor. It felt like a tiredness that was almost induced from a drug, it was a different kind of tired. I worked at this dollar store about 2-3 times a week for 3 years, until I was 23. Me and my boss had subway for probably about 90% of our lunches through the course of these 3 years. Subway 2-3 times a week, every week (I eat NO other fast food, just how I was raised). After I noticed this tiredness I started to pay attention to my stool. It was yellow, inconsistent, and I was going anywhere from 2-5 times a day. Once I was aware of being being tired and not being able to go to the bathroom right, I started to get this shoulder tightness that started from under my right scapula at the rib cage. It crept up from my rib under my scapula, to the rhomboid, to my rear deltoid and scapula, and finally to my neck. This shoulder irritation got so bad I considered death thousands of times. Sometimes I was so happy thinking about death that I would literally smile about it, realizing that this would all one day end. Mentally at this point I have developed a serious anxiety. Everyday I woke up as if I had a grenade go off in my head, as if I was drinking ALL night. I would get a full 8 hours without waking up once just to wake up each morning to have a messed up head. Somewhere down the line I started to experience something very strange with my head. Many times before I ate my head would feel "jared". It's like my eyes wanted to roll back into my head and have a seizure, but what would I know, I never had one. Sometimes I thought I would fall on the ground. This would also happen when I would hear something loud or high pitch, a baby screaming, motorcycle going by, or if someone were to throw a beer bottle away in the garbage if it hit another bottle (making the glass hitting each other). I don't drink, smoke, or do any drugs. I have quit caffeine completely out of my life since the beginning of 2016. I forgot to mention, but caffeine and me no longer get along. It is as if I have a complete intolerance to it. I have had -Endoscopy -Colonoscopy -Blood tests for H-Pyl, Celiac, others I can't remember -Taken antibiotics for SIBO -Gallbladder scan -Liver scan -Pancreas is fine If I remember right -I will update more if I remember anything else. This all came up clear. I have had 2 different General Practitioners tell me that I have anxiety. For a long time I put off anxiety medication and have told them I'm not interested. Eventually I caved and got on zoloft, but I started to have bad side effects. Then they put me on Wellbutrin, currently on 300mg a day. Wellbutrin helps, but I feel it's not the answer. I still get tight shoulder issues, bathroom problems, and I forgot to mention that I have a throat clearing issue that's so consistent that it's simply ruining my life. I have tried gluten free 2 different times, both times I've lasted two weeks being 100% gluten-free. My symptoms are still there, but I don't THINK they are as severe. However I caved Sunday 11/6/2016 (ending my two week and two day streak), gluten-free Monday, and caved again yesterday (being Tuesday). Tuesday was the only day I noticed anything, I was super bloated/gassy/tight shoulder/bad head space. I was just unsure how to feel about it seeing as I only had symptoms on Tuesday when I caved and not Sunday. I'm sorry this is long and so jumbled, still have bad head space. Symptoms: Right shoulder tightness, bloating, gas, food cravings for sweets/chocolate (very noticeable while gluten-free), waking up tired, anxiety, symptoms 30 minutes after eating, will add more as I remember and experience them.
  7. So i am undiagnosed and have been having severe problems for about 9 months. Ive had stomach problems my whole life. i had a small part of my bowel removed when i was a newborn and had a colostomy bag for 6 months but recovered. I was always active as a child and teen but still had problems, but nothing like this. So now I'm 21 and one day i got really sick in a car and it all started from there! Got very dizzy and wanted to puke. But then i started to have abdominal pain, bloating and bad chest pain. I thought it was a bug and let it pass but it went on for weeks. Then i got constipation and started getting very fatigue and weak. Could barley got to work. One day at work i started having suck bad lower abdominal cramps that they wheeled me out on a cart because i could not walk. I went to the er that night after they went away but since then i have had a lot of symptoms. Mostly lower abdominal pain around my pelvis.( By the way I'm a 22 year old male) . But i have been having bad fatigue, arthritis in my fingers when i wake up, severe abdominal pain that only goes away on occasions, testicular tenderness mostly when I'm constipated, severe stress mostly because of my sickness, bad mouth ulcers, and I'm sure there is a lot of symptoms I'm missing but i have been to doctors and even had a colonoscopy which came back good but I've never been tested for celiac or crohns that i know of. Sometimes i really feel like i dying, the depression had led me to hate everything. I can't really enjoy my wife and kids anymore, can't go out anywhere and have fun because I'm always sick. Im going to see a new family doctor this thursday and try to get some test ran but does anybody have symptoms like me and does this sound like celiac? Help me please i just want my life back. Also i have recently gotten itchy bumps on my hands, wrists and inner forearms and on the right side of my neck( kinda like bug bites all over).
  8. Well, I'm new to the forum- and thankful to have found it! I wanted to be able to share my story with someone who would understand, as my family of origin doesn't really understand or "get it." (I do have a supportive husband, but he doesn't really understand it fully, either.) Well, where to start? I've just finished a rough 14 days of constant diarrhea when I ate anything. I'm talking about ever 15 minutes I was in the bathroom- around the clock- for the first 9 days, and then finally it subsided a bit and while I was still dealing with the bathroom issues, they weren't as frequent. At the same time a lovely rash showed up and I had horrible bloating and cramping. It was miserable. I finally figured out that I had been glutened; I don't know how or where as we keep our entire home gluten free, but it had happened. It was awful. I wouldn't wish it on anyone. Thinking about it, my stomach is gurgling and churning. Yuck. It happened right after a really high stress situation - some acute stress, and some a bit more prolonged, but it all coincided. During this most recent episode, I went to our chiropractor for an adjustment, allergy testing, and some supplements to get me through the horrible ordeal. (I am a natural healing practitioner and utilize these methods first and foremost for myself/my family.) He specializes in nutrition, and I asked him based on the testing if he saw anything unusual or that raised red flags. His response was that I really should never have gluten containing anything again, and that I most likely will need to avoid dairy for a long while while I am healing. I asked him about celiac testing, and his response was that if I wanted to put my body through being on gluten for 12 weeks, I would then be able to go and be tested, but that it likely wasn't worth it based on this most recent exposure. I grabbed my supplements and headed home. I have wrestled with his words for a few days. I have been gluten free for 6 weeks, and on a low-fodmap diet because it was assumed I was dealing with IBS issues. Something about the finality of being gluten free forever was difficult for me to digest. But it made sense. I have had issues with gluten my whole life, but they were either ignored. explained away, or they were not connected to celiac disease by medical professionals, or holistic professionals. My chiropractor (and now I) believes it started when I was a little girl: I had my tonsils removed at age 3 because I got strep at least 8 times a year, I had nasty diaper rashes often- but my mother refused to believe that I was reacting to foods; when I was a teenager I had horrible candida in my intestines and gut, I craved breads and pastas but would either be horrible constipated or have diarrhea; as a young adult I dealt with some pretty intense monthly cycles - they were either awful or non-existant, and my candida continued to rear its ugly head into my college years/into my graduate studies; when I was married and we had our first baby, I started to only eat whole wheat or sprouted wheat- and my blood pressure was sky high, but my doctors continued to tell me that whole grain wheat was good for me and that it was better than not eating wheat. I started to get a rash somewhat regularly on my body, and developed "chicken skin" on my arms from a vitamin deficiency- later that year, I saw a natural healing practitioner who said that my on-going depression and awful mood swings were likely caused by wheat but she didn't want to diagnose me yet, she just wanted me to go gluten free to see how I felt. Well, I was scared and panicked and did it for 2 days before I went back to eating whole wheat. I should have listened to her then! After out first was born, we miscarried 6 babied in 3 years. I was devastated. I thought I was broken, and no one had answers for me- except that maybe it was PCOS or maybe it was because we were following a vegan diet. I started to ponder more about what she had said a few years prior and felt it might be time to go gluten free. So, I went "gluten light"- mostly gluten free but I still made (and ate) whole wheat sourdough bread, sourdough muffins, sourdough cinnamon rolls, etc. for another year or so. I tried eating Einkorn, because I was told that people with gluten issues could tolerate it better than regular wheat. We eventually conceived again and my sweet baby girl was born a year ago. I was gluten free (with very few exceptions) during her pregnancy, and after she was born I ended up having to cut out gluten because I was breastfeeding and she would have horrible reactions whenever I would nurse her and I had eaten wheat. She was diagnosed as failure to thrive while I was still eating gluten and they ran so many tests I felt dizzy doing to every specialist they had us running off to. Her celiac panel came back positive but they wouldn't diagnose her without a biopsy and her ingesting wheat on her own for 3-6 months. I couldn't risk it with her- she was just too tiny and below the bottom 3% for growth. So gluten free is was. And I was really good about it, except for cross contamination after she started thriving again. She had gained enough weight that I thought it was okay to start eating gluten again- and being lax about cross contamination. (I swear, it is like a drug sometimes! But what is harder is that I have fond memories of my mothers homemade bread being made and rising and then eating it warm with honey and butter- and giving up having those memories with my own children was more difficult.) Finally, something clicked 6 weeks ago- well, 8 at this point. I was having constipation and diarrhea off and on, candida flare ups (which happened all along, but have gotten progressively worse with the more gluten I ate), and I was tired of feeling so tired and sick all the time. I hated being "that" mom- the sick one who couldn't ever do anything with her kids or family or friends without being wiped out for days afterward. So, I stopped eating gluten. Our house became a ZERO tolerance for gluten zone, and I started to heal. I felt nourished and not constantly hungry all the time- even after eating a meal. My sinus issues stopped. My tummy troubles stopped. My cycles that I have had were normal... and on and on and on. Then, the gluten-ing happened. (Probably from eating out at a restaurant that wasn't so good about cross contamination.) And my chiropractor meeting happened. And the rash, and all of the other things. Bottom line: I don't have an official diagnosis with a stamp of approval from a licensed physician. But I do have my chiro's assessment, and I have my own body's proof. Oh- and my birth family (I am adopted) gave me my family medical history-- that is another piece to this puzzle. Both my birth parents have bowel issues- constipation, diarrhea, bloating (she has been asked when she is due with her baby almost monthly for as long as I have known her-- for 20 years). I've been gluten free for 8 weeks now, and finally feel like I have my life back again- minus the little cross contamination crisis 2 weeks ago. So two questions- is going back to gluten worth the official diagnosis for you? and How do you handle family members who think that this is just a fad and all in your head/made up? My family thinks that this is all crazy and that there is no possible way this could come on so suddenly. It's a bit toxic to be around them sometimes because of the side comments that are made, or being reminded how awful gluten free food tastes/how terrible the texture is from them, or being told that something can't really be bread (or cake or pie, etc.) because it isn't made with wheat flour. I would love to hear you share your stories and thoughts, if you are willing to share.
  9. Hi all--- I know this is long but I'm really grateful for any response even if you just skip to the end... This question is about my colonoscopy results and upcoming endoscopy but here is a bit of background on why I am being tested. I am a 21 year old currently in the process of testing for celiac disease. I exercise almost every day, drink plenty of water, and eat plenty of fiber. I have had serious constipation since December of last year (only going if I took a laxative and often not even then, so maybe once a week). Between March of last year and this past December, I had occasional constipation every few months and before March of last year never had constipation and actually frequently had the opposite problem, which my regular doctor thought was because of Lactose intolerance or anxiety (I first went to the doctor for stomach discomfort in 6th grade). That same March I also began having horrible panic attacks that became frighteningly frequent last December at the same time that the constipation really kicked up. My period also became irregular that March despite the fact that I am on the pill. Changing pills did not help. I followed a dairy-free diet for about 9 years before the constipation began, though I was never tested for lactose intolerance. At the suggestion of a friend who has celiac disease, I tried going gluten free in February of this year and began to have BMs without any laxatives within four days of starting the diet. Within a few weeks my panic attacks had also stopped, and I seemed to be able to eat way more food than I ever had before and was even losing weight. I had always thought I had a really slow metabolism. What a great time that was for at least a little while. During this one-year period from March of 2014 to March of 2015 I also saw my doctor several times, but was always told that the digestive problems were the result of a panic disorder, not the cause and that I needed to relax. I saw a therapist and was prescribed Ativan---- which medication, btw, doctors then loved to say was the cause of my constipation even though the constipation came first. Anyways, the gluten free diet seemed to be fixing the constipation as well (not perfectly) until a few months ago (April). I then suggested to my doctor again that I might be celiac, but she looked at my arm and said that she wouldn't test me because I didn't have a rash. She told me for yet again to relax and eat fiber. Getting no help from her, I then started taking magnesium which really really helped for about a month (even though the poop was liquid and pretty much undigested) until a couple of months ago (May), when I got backed up again. I then cut out my daily packet of "gluten-free" oats. After that it felt like months of piled up BMs were pouring out of me every day for about a week. My panic attacks after cutting out oats have completely gone away, and as long as I take the magnesium (less now so it's not liquid) and eat gluten and lactose free I have a relatively normal BM every day. Testing By now you have probably realized the issue with only being tested now, months after going gluten free. I went to a gastroenterologist about three weeks ago. She found blood in my stool and what she called a "pocket" in my rectum from straining. I got blood tests for all sorts of deficiencies and for celiac as well as a stool sample taken for parasites. No surprise on a gluten free diet, these all came back normal. About a week later I had an anorectal manometry (to test my pushing ability). The day after that I had a colonoscopy. Both were normal. Here is my first question: About a week after the colonoscopy I was told that the biopsy they had taken was positive for celiac, and that I would need to come in for an endoscopy in two weeks. Is this possible? I have heard that sometimes doctors are able to reach the end of the small intestine (which my report said that they had) during a colonoscopy and to take a biopsy from there. I have also heard that only an endoscopic biopsy can diagnose celiac disease. Here is my second question: My gastro doctor knows that I have not been eating gluten for a long time and has never mentioned to me that I need to eat gluten before any of these tests. My endoscopy is in exactly one week. After my blood work came back negative, I tried eating gluten, thinking f*** it. I got a really bad headache and what felt like the worst sort of menstrual cramps, as well as a lot of gas. The small BM I had the next day was very painful, and I had only had a few whole wheat crackers. Either way I wanted to test what would happen if I went back to eating as much gluten as I used to and I drunkenly ate three pieces of white bread one night. The next day my voice was gone and I could hardly move. It felt like I had appendicitis-- I'm sure the alcohol was a contributing factor though I definitely did not have enough for it to cause this much pain, as I rarely ever have lasting hangovers. My hands were shaking like they used to after a panic attack and I thought I might be about to have one. After that little experiment, I decided I would eat gluten free even if the test results were negative. Two days of gluten-free eating went by and I was beginning to feel human again when I got the call about the colonoscopy and scheduled the endoscopy. Again, no mention of needing to eat gluten before the test. Should I eat gluten before the test? For obvious reasons I'm a little nervous about the idea. A few hours ago I ate about two pieces of bread just in case when I call tomorrow they say that I need to. Within two hours I was very gassy and began to get a headache (Can a reaction even happen that fast or is this all in my head?). Also, is it too late to eat gluten before the test? I did technically start last Thursday though it was only a few crackers a day until the drunk bread eating debacle on Saturday night, after which I had a two day break.
  10. This is my story. If anyone could give me ideas, put in input, ANYTHING, it would be greatly appreactiated. I'm running out of hope. Bear with me, I know it's long but I just need to get this out to people who understand. My symptoms started December 7th 2013. They appeared out of the blue. One day I felt so blissfully healthy and the next day I was in horrible pain. It was like waking up into my new life. I'm only 17. Every day I'm suffering so badly from the constipation, the BLOATING, the gas, the pain. Nothing seems to help. December 27th I was diagnosed with Celiac Disease after bloodwork and a biopsy and was told that because my intestines were in pretty good shape considering, I would start to feel better almost instantly after going gluten free. That was 4 months ago and I don't feel any better in any little way! I'm not only gluten free, but dairy free and even grain free. I'm on an (almost) paleo diet and have been for 2 months with no change. I was told by doctor after doctor to just "give it time, you'll get better soon" until one day I was told "You have ibs and there's no cure." I'm so depressed because of this horrible illness! I was taken out of school to be homeschooled, I rarely go out, I don't go a day without crying. I'm not myself anymore. I used to have so much life... I used to have what I thought a perfect body (Yes, I was cocky.) Yea, that's gone now. I've lost so much weight I look sickly, but my stomach is constantly bloated. I used to have such a flat stomach and now I look 6 months pregnant even when I don't eat a single thing! Summer is coming up but it won't be any summer for me. I'm trying to figure out something else it can be, something else I can do. I refuse to believe this is the start of my new life. It appeared so upbrupty and for a reason! It was the Celiac Disease. So why am I not healing whatsoever? I'm not still eating gluten. I even got a bloodtest to be sure. I've been taking Rifxain for 2 weeks to see if it's SIBO but surprise, surprise there's still NO change. Before I found out I had Celiac Disease and became crazy about health and nutrition, I was the kind of person who ate ice crea every single day. I'd have doritos for breakfast and remained 100 pounds no matter what. I didn't even need to exercize. Now I do everyday but nothing helps. I look and feel like a whale. And not only is it ugly but it's painful. I used to do a lot of recreational drugs and drink a lot. I used to eat and act like someoe who's SO unhealthy but my body seemed perfectly healthy. I now have an extremely healthy diet and haven't even sipped a glass of wine in 4 months. But I feel and look horrible. It was supposed to be over at Gluten free. I feel WORSE than I did before. I'm on so many different supplements. Fish oil, L-Glutamine, Digestive Advantage Constipation Formula, Acidophilus probiotics, and I take digestive enzymes with every meal. What more can I do? What can make this all go away? If this is supposed to be the rest of my life I don't want to live. Is it ibs? Refractory Celiac? It doesn't make any sense!!!
  11. I was diagnosed with Celiac Disease about two years ago, and I feel so much better. My 84 year old mother has been complaining about her daily constipation and arthritis feeling much much worse lately. Am I right in thinking she should try going gluten free for a month to see if that helps? I know there's a genetic component, so that may be part of it, but even if she doesn't have Celiac, will this help her at all, or will it likely be a placebo effect (assuming she really sticks to it). And yes, I know that at 84, these are not awful complaints, but she's a very active person and I hate to see this slowing her down.
  12. Hello, I'd love a little advice/information from people who probably know more about this than I do. Sorry for the slightly long post... I am 32 and female. The only real health problem I have had is endometriosis, which was diagnosed and treated in 2002 and I have had no real problems with since. I am generally very healthy. Last year, in May 2014, in began having some abdominal tenderness just above my belly button if the area was pressed (usually by my toddler's rather enthusiastic hugs!) and left-sided discomfort (waist level) at my back sort of radiating round to the side. I also felt quite full after eating only a little. My GP ordered an ultrasound, which was normal, and a whole range of blood tests, also all normal. Things continued and in September, my GP ordered a coeliac screen which came back positive. My tTGA was 15.3 (normal range 0-6.9) and endomysial antibodies were positive. At the end of November I had an endoscopy and biopsy (4 samples were taken), which came back negative for coeliac disease. In December I started experiencing problems with upper abdominal bloating and also constipation (sorry if tmi, but I could actually go four or five times a day, but just a couple of very tiny little pellets). I also began feeling lightheaded after eating and, with the exception of feeling hungry, felt so much better if I didn't eat or drink at all. So my GP repeated the coeliac screen to see if the first test was an anomaly. This time my tTGA was 35.7 (normal range 0-6.9) and endomysial antibodies were positive. My gastroenterologist (who discharged me back to my GP after the normal biopsy) said I categorically do not have coeliac disease because of the negative biopsy and to continue as normal (with no guidance as to what was causing or would help my current symptoms). My GP agrees that I don't have coeliac disease. So, my question: is there anything else that can cause a positive result on a tTGA blood test other than coeliac disease? My GP and the gastroenterologist both said false positives can occur. My GP suggested I trial a gluten-free diet, but I'm concerned this is a very strict diet and unneccesary if I don't have coeliac disease and will delay/prevent an accurate diagnosis if I do. I have a two year old son, so if I do have coeliac diease, I understand he should be tested? I don't know where to go with this now. Prior to all this starting last year, I had never even heard of coeliac disease. I also don't know if these blood tests are clouding the issue of what is actually causing my symptoms if they really are just false positives... I would really appreciate any advice or insight... Many thanks in advance!
  13. Can anyone recommend a natural product to take to help with chronic constipation? I appreciate any advice or suggestions. Thank you.
  14. So after being strict paleo for almost 6 months after my celiac diagnosis with no relief, I finally found my answer I took a breath test for small intestinal bacterial overgrowth today and it cmd out very, very positive. The doctor was able to tell me it was positive not even half way through the test! There's a very large amount of methane, which explains my severe bloating, gas, and constipation that's been worsening every day since going gluten free. I was so happy to have an answer I burst into tears, while simultaneously cracking up and hugging the nurse who told me it was positive (whom I'd just met that hour…) Needless to say, this was the best news I've ever heard. I finally get to have a life again! I'll get to go out, eat normal amounts of food, wear tighter clothes again without having to worry about my swollen gut showing lol. I'm pretty much ecstatic!!!(: Now my questions are….well, what do I do now? Is there anyone else who experienced this? Not getting better after going gluten free then finding out SIBO's the culprit? My doctor prescribed me Rifaximin twice a day for 10 days and then Neomycin twice a day for another 10 days afterwards. But she also mentioned that a large amount of methane as opposed to hydrogen in the intestine is harder to treat and less common /: (with my luck) This scares me and makes me feel like I should be extra careful. Is there anything else to do to kill off the bacteria? What probiotics would be good for helping to treat sibo? I already take Acidophilus but is there one that would work better? WHat about diet? I know the bacteria feeds of sugar and carbs? What sort of diet it recommended when treating SIBO, if there is any? And most importantly.. did this simple fix, the antibiotic, cure your ongoing symptoms? I feel like in a way it's too good to be true. I've been living in unbearable constant pain from the time I wake up till I go to bed for so long I feel like I've grown accustomed to it! Could this really be the end? Support is desperately needed here. Thanks everyone!
  15. Hi everyone. I'm a nineteen year old female. A year ago I began to get lots of stomach pain, constipation, and diarrhea. I also experienced an increase in fatigue, anxiety, and depression. I also have autism, diagnosed at age thirteen. A few weeks ago I got blood test results that strongly suggested the possibility of having Celiac disease. My endoscopy and colonoscopy are scheduled for July 11. I'm so nervous. Hoping the doctor will be able to tell me that they know what's wrong. Looking for support, but if anyone else is going through similar stuff, feel free to message me or post on this thread- either way.
  16. Hi, I have recently been having stomachaches after eating almost everything. I was wondering what was wrong so I went to the doctor today. I gave my doctor a food diary and she seemed to think it may be dairy and she said possibly Celiac but probably not because I had no symptoms after eating plain white rice. According to her white rice has gluten and that Is not true,right. Anyways so she ordered an x ray for me to check for constipation. I thought this was crazy because I have never had trouble "going". Surprisingly the x-Ray showed that there was a little backup. I know that constipation can also be a symptom of celiac so that also leads me to think its celiac. Anyways the doctor also ordered blood tests for celiac among many other things and I was told to stay off dairy until I get my test results. I think my issues with dairy may have to do with the damage celiac has done to my intestines. Anyways I'm jut looking for what you guys think of all this. Thanks, Stephanie
  17. I was diagnosed with IBS-constipation about 40 years ago. Last year, my bowels changed and I went from constipation to diarrhea. This May (2014) I underwent an endoscopy for celiac along with a 10-year re-check colonoscopy (my first one was normal except for evidence of IBS). The prep was agonizing for me and I've yet to feel healthy since those two procedures done in early May. Within a week after the procedures (and while being gluten-free), my bowels returned to constipation. I'm finding it extremely hard to find a good diet that is gluten-free while also having enough fiber in it to assist with the constipation. Is there anyone else who suffers with both of these situations? If so, what are you eating? Any help is much appreciated!
  18. Hi, I am new to these boards and am looking for some advice. I have been doing the Amazing doctor race for over 25 years now and the best anyone can come up with is Chronic Fatigue Syndrome / Fibromyalgia. I have been battling this illness for over 25 years now and I just need something to end. About every few years I see a new doctor who wants to figure out what I "really" have besides Fibro. They do some tests, send me to some specialists and all roads lead back to Fibromyalgia. UNTIL LAST WEEK. I just moved to another state and started with a new Dr. A nurse practitioner with her doctorate in medicine and a well known diagnostician around here. So I went with intentions of getting back on Fibromylagia meds. Rewind, about 3 1/2 years ago I was given a glimmer of hope for all my problems. Cymbolta. Yes, it helped. Made some of my joint pain go away, made me a little less angry. But that was about it. I lasted about a year and then I wanted to try and get pregnant again (I already have one child). So I had to go off it. Going off this medication really pin pointed the decline of my health. Two miscarriage after that and now I can't get pregnant after being able to get pregnant 5 times quick in my life. Fertility doctor has no answer despite my eggs being a little less great due to my age. But he said it is still possible. All my fertility tests normal. Back to the new nurse practitioner. Of course, like so many, after seeing me for my initial visit, reading my thousands of medical records, listening to me list my host of one million symptoms from the past 25 years (chronic sleep deprivation, chronic fatigue, no memory, exercise intolerance, massive brain fog getting worse, chills that come and go, stomach bloating, chronic constipation, random bouts of IBS, unexplained weigh gain, thyroid cancer (fine now and levels are always fine), Wolf Parkinsons White (heart was ablated, fine now with that), eye swelling upon waking like an allergic reaction, massive scabs and head dandruff, pin and needles in feet and hands, arthritis in neck, chronic neck pain after injury, burning muscles and eyes after exertion, weird bladder issues, choliostatis of the liver when pregnant, muscle stiffness that is worse on awaking, chronic headaches plus migraines (sugar induced I think), weird chemical sensitives that come and go over the years, late puberty, miscarriage and infertility for no reason, loss of tooth enamel for no reason all of the sudden ( black on my tooth but dentist said loss of enamel, nothing else), stomach acid, cystic acne, irregular periods all of the sudden in the last few years, weird rashes and extreme itching for no reason, concentration issues, ringing in ears, eye twitching, eye sensitivity to light and night driving, hoarseness, muscle cramps, etc... And the list goes on), she decided she wanted to get to the bottom of "this Fibromylagia", and she actually used quotes with her fingers when she said it. She looked at some older tests I have, said I had some slight elevated liver enzymes (I have had this for years and years), and wanted to send me for a stomach ultrasound. It came back fine. Nothing wrong. The she sent me for a host of blood work. Different panels, didn't tell me what they were. Went and came back for the results. She said again I have slightly elevated liver enzymes, slight elevated cholesterol level (which I had had before as well despite eating a low fat diet my whole life). She said I have an elevated cortisol level, she said it could be why I can't lose weight but I needed to see an endo for it. I also had a large vitamin D deficiency requiring prescription in a huge dose once a week. The she hits me with the whopper. She did something called a Celiac panel and I have Celiacs. If you want to live, you can't eat wheat. No gluten, ever again. WHAT??? This women must have been out of her mind. Did she know who she was talking to? I am the carb queen. I live for it. Bagels, cereal, low fat cookies. No way lady, you must be wrong. There is no way I can stop eating that stuff. Quickly tears swelled up in my eyes. First I thought she was some holistic freak. Then I doubted it because no doctor has ever told me I had anything wrong with my blood work. I just didn't believe her. I left mad and sad. I went home to process. Here we're my numbers.... Immunoglobulin A : 128 (normal, range 70-400) Gliadin IGA Deamidated: 2.1 (normal, <20) Transglutaminase IGA Autoabe: 20.8 (out of range <15.1) I started reading and reading and reading. Could this really be? Could this be the answer I have been chasing for the past 25 years? I read more and started to wonder why she didn't advise me to go see a Gastro, the next obvious choice. She scared me. I immediately stopped gluten, just in case and to see what would happen. She said it would take time but maybe in two weeks I would have some relief. I researched, dropped $300 on gluten free products, bought every type of everything you could imagine, got schooled by another gluten free person, etc... I also immediately called her asking why she didn't recommend me for an upper endoscopy. She said she didn't need to, this is what I have. I asked her for a recommendation anyway. I had to know, I have to know. There is no way I can not know. I make the appointment for five days later and I go on my gluten free way. Five days of gluten free, maybe a little more clear but not so much difference. My stomach was doing circles, it's like my system didn't know what to do. I was in the bathroom straight for the first 24 hours, which is usually the opposite of what happens to me. Five days later, I go to the 1st Gastro. His nurse practitioner sakes me some questions, takes my vitals and puts me in the Dr's office. The guy walks in, doesn't shake my hand or introduce himself, looks over my blood for two seconds, says I don't know if you really have this but I will do the test, signs me up and walks out. Five whole minutes this jerk spent with me and asked me nothing. He says, don't worry, you can eat gluten. It doesn't matter either way, it won't effect the test. I asked him about the liver and the vitamin D, he replies it has nothing to do with any of this. I leave with a endoscopy planned for a week from that day. I left feeling upset. I got home and decided this was not a doctor I wanted to give my money to nor is he a doctor I want doing a procedure one me. What happens if I don't have Celiacs and I still have to deal with this guy to help me find something else? No way. I left and went to a dinner. I ate my first dose of gluten in form of two pieces of rye bread. Instant bloating. Wow, that's weird. I never even realized all these years that feeling in my stomach was bloating. I always just thought I could feel myself gaining weight every time I ate a carb. Lol. I continued that night with a bowl of ziti. It happened again. Wow. I went on to eat some cheese crackers before bed, just to see what would happen. Besides feeling like crap all day and exhausted (as usual), I woke in the morning with massive swelling under my eyes, like I had bee stings. Black circles with bee stings on top. You could see the blood vessels popping out. Stomach rumbling all the next day. Constipation comes back. I was shocked. Cold adding the gluten back in really make me feel something? I never in my life associated any of my pain or ailments with bread or pasta, never with gluten, I didn't even know what gluten was till five days ago. Wow! I decided from that moment on, no matter what, I NEVER WANT TO EAT GLUTEN AGAIN. It just didn't make me feel good. Since I added it back, my body is in what I call a "serious Fibromyalgia state". Eyes burning, body hurting, feels like I haven't slept in 10 years. My cognitive is so, so bad. Stomach is turning, bloated. And guess who just joined me? My hemmiroid decided to make an appearance all of the sudden. It's been a while but we reunite. Thanks! I go home, get some good recommendations from family to a good Gasto. I go. He spends an hour with me, learning my case, listening to everything from the beginning. Checking all my blood. Says this is a possibility that I have Celiacs, he sees it more and more and if I don't have celiacs, I probably have a sensitivity to gluten. He tells me he wants to do the endoscopy but now that I ate gluten free for five days, he wants to be sure we don't skew the results and wants me to wait another two weeks. And here is the kicker... You must eat gluten the whole time. SERIOUSLY??? Oh God, I'm going to die! I go home, cry some more, eat my gluten (and sneak in a few non-gluten things here and there, hope it's OK?) and now I wait. I am so anxious. This all makes so much sense. I can't stop researching and can't saying "WHAT If" "WHAT IF"??? What if this is my answer? What if this women is my savor? What if I have been poising myself and killing off my organs for 25 years and no one found it? What if??? That is why I come to this board, turning to people with I'm sure similar stories. I have endured so much. I have a sweet little five year old that is denied a functional mother. I have a great business that is suffering. I have a relationship with my husband that could be so much better. I have so much rage and anger and pain and I want there just to be an answer. Please, there has to be, please let this be it! Opinions from my test results? I know it sounds like I have it from everything I'm saying but what about the blood? How likely is it that I have this? Thanks for listening!!! I will post my endoscopy results here in two weeks, I promise. From the girl that couldn't imagine giving up "carbs" to the girl that is dying to, literally.
  19. I got in to see a new gastro, and the visit really didn't amount to much, but at least he seemed somewhat interested in finding a solution to my issues, but he wanted to see what would happen if I added metamucil into my diet for a while, I had never actually tried anything like that for fear it would hurt me. He assured me it wouldn't but low and behold it is causing issues. The first week wasn't to bad, it seemed to make me go more at 1 teaspoon a morning, it wasn't ideal but the discomfort after going seemed to lessen quite a bit, I was enthused that it was working. Then however for whatever reason, my Dermatitus hepiformus started raging at me, hair got super oily despite just showering the day previous, really itchy, the scalp blisters, you know the drill if you have DH. To be honest I was willing to cope if it was going to really improve the bowels but then when I went up (following his little metamucil guide sheet) to 2 teaspoons a day, 1 morning and 1 night I got wicked constipated and learned online you need to drink a TON of water, so I basically drained our well doing so, and no improvement. I then went back down to 1 teaspoon a day and lots of water and there wasn't much improvement so after 2 days constipation I stopped taking it. I've noticed now when I try it, it will mess up my sleeping pattern, like I wake up in the middle of the night and then it's insomnia and a broken sleep. Has anyone ever had Insomnia or a broken sleep pattern from taking Metamucil? I'm taking "Metamucil with real sugar" as it was the only one that had just Psyillum husk and sugar as the ingredients.
  20. Hi I am 10 months gluten free, and starting about 2 months ago my stools became looser and looser. It is now bordering on diarrhea, although it is still kind of hard to get out, i.e. still a little constipated but not at all like it was 6 months ago. Is this normal?
  21. I have not been tested for Celiac disease yet. But I decided to start a new topic about some of the symptoms I have so that I can learn. Not sure if this is a symptom of Celiac or not but it's something that is an annoyance to me. Tinging. I get tingling in my left upper thigh mostly. It happened while I was sitting down eating my pasta and it happens a lot when I lay down. I also get tingling in my hands, but not as frequent as the thigh tingling has been.
  22. Hi. I'm quite new with Celiac, about 3.5 months gluten-free. The problem is I don't feel a lot better... 1. I have constipation. 2. I have pain in my lower stomach (abdomen?), especially after I eat. 3. I have acne. Also I wanteed to ask if before everytime I eat I need to wash the plate and cutlery with water to make sure it's not glutened. Any ideas? Hope you can help me. Thanks
  23. Ok, well I'm new to all this. I've been looking in to Celiac due to a whole range of symptoms: Chronic constipation [i've gone more than 21 days without going-had problems for at least 14 years] Vomiting [As a kid I had a 'nervous stomach' and threw up a lot randomly but never had a fever or ongoing sickness. Still do it now sometimes.] Hypothyroidism [i asked my endo about testing for my antibodies but she said she was pretty sure they'd come back positive anyway so I pretty much have Hashimoto's – not as concrete as I'd like but...] Horrible gas and bloating [i've been keeping an eye on symptoms and food and last night my stomach went from 24.5 inches to 29 inches. Very uncomfortable. I also happen to burp and they are bad. It's embarrassing and nothing helps much.] Vitamin D deficiency and borderline calcium [This was awhile back but I've been bad about taking vitamins...and I take a lot.] Diaherra [i don't think I have a motility issue but I did have a ten day period about 3 months ago. It was bad and nothing would stop it.] horrible fatigue, tons of cavities, nausea, vomiting-occasionally undigested food, back pain, acid reflux, PCOS, anxiety, depression, brain fog, panic attacks, dry skin and nails that crack and bleed, super pale skin, always cold, dizziness/car sickness/vertigo So, now that you know all my symptoms, and if you're still reading...I finally went to the gastro for the first time today. I think there was some miscommunication by language barriers but he did have me do a blood test. I think it was the full celiac work up...maybe? He's also having me do an endoscopy, a colonoscopy, an xray this Thursday, and he said something about doing a marker test. Before all of this though he gave me a sheet and told me to follow a low-fiber diet. But it looks almost completely gluten free. If the blood test comes back negative like it does a lot....by the time I do the endoscopy there could be nothing there to see. Not even sure if he'd still be looking for Celiac if the blood test was negative. Thanks for reading this book. I guess my question is: "According to my symptoms, does this sound like celiac? Furthermore, how much did you have to fight for a diagnosis?"
  24. Hi, fellow celiacs I have some questions on how this celiac thing is going to work out. Hopefully there´s someone out there with a story similar to mine: The first two and a half months on the gluten free diet, I felt crap basically. Two weeks ago I started sleeping less and being able to do more during the day. Then came this weekend and I am feeling crap again with balloon-belly and constipation. During the night I wake up every three hours because I am so thirsty and my mouth feels dried out. I then drink a litre or so of water, eat a couple of prunes to help get my system working, go to sleep again and repeat until morning. I was diagnosed with celiac disease 3 months ago by gastroscopy with "moderate atrophy Marsh 3b". Anti-deaminated gliadin IgG was 49 in September 2012 (down to 11 in January this year). I am a male in his mid twenties. The celiac was discovered after me being ill and partially bedridden during two years, for what doctors thought was "postviral fatigue syndrome". I have no other known illnesses. I regularly drink probiotics and try to keep a high-fibre diet. I work around two hours from home every day and do very little apart from that. If I talk too much I become hoarse and feel thirsty again. If I try to exercise more than a brief swim once a week, my limbs become heavy and I just start feeling incredibly tired. Staying out of bed then turns into an exercise in determination and self-discipline. After years of being ill I want a social life, be able to do sports and to get ahead in my career like everyone else. WHEN will there be an end to this? WHY am I tired, constipated, bloated and extremely thirsty? HOW will I know if I am heading in the right direction recoverywise?
  25. Hi guys, I'm new here and just wanted some advice. I'm gluten intolerant (pretty sure I've been all my life but it only became apparent until it got really bad at the beginning of last year). I had colic when i was a baby (don't know if this is a connection), I've had keratosis pilaris since i was 5 (it progessively got worse and spread all across my entire body) and constipation for as long as I can remember. I'm now 19 and I've had severe constipaton for about 2 years (go less than once a week and it's painful) i have an ENORMOUS amount of gas and get really bloated to the point that I'm on the floor in pain because my stomach is so huge and I only get some relief if I'm able to release some gas. I've also recently started noticing undigested food particles and I've just started developing eczema. I've got chronic fatigue syndrome and a hormone imbalance and a range of nutritional deficiencies. I've had the blood test for celiac disease twice, but both times it comes back negative for the celiac antibodies but i have a high C-reactive protein. Going gluten free has in no way cured me, and I find that i only get some relief when I don't eat starchy or sugary things. Basically what I'm wondering is whether I should be on the Specific Carbohydrate Diet (normal/advanced) or the GAPS diet? I have no clue and my doctor is extremely unhelpful! Everything I'm reading is relating to celiac disease and diarrhoea, but nothing talks about constipation. If I do either diet, am i still supposed to cook the veges etc or should I be having it raw so there's more fibre? Any advice would be much appreciated!!!
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