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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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Found 27 results

  1. My daughter has her yearly GI specialist appointment in a couple weeks. She was diagnosed almost 3 years ago. She’s very strict with her eating but has still been having a lot of gut issues for at least the last 6 months. She spends a lot of time in the bathroom - usually diarrhea but occasionally constipation. She’s also very dizzy whenever she stands up or exercises. I was going to ask about testing for iron and other vitamin deficiencies but I wasn’t sure what other tests I should request. She did have Non-Hodgkin lymphoma a couple years before the celiac diagnosis and as a result had a bowel resection - so I may ask for an u/s just to recheck her bowels. Any other suggestions?
  2. Anger?

    Hello everyone, I am new to join this forum, though I have been look at your posts since I was diagnosed in September (it's now end of October). Just wanted to introduce myself. My name is Lori. I'm 43, female, and have had stomach issues for my whole life. As a child, I was ALWAYS tired. My doctor couldn't figure out what was wrong with me and just told my mom to get me into sports to help tire me out at night. I missed a lot of school because I was sick quite a bit, but got good grades so no one seemed to be bothered by it. Over the past 2 years my symptoms were consistently getting worse. Just before I had my gallbladder removed (gall bladder attacks that were getting longer), I started vomiting on a regular basis. Didn't seem to matter if I had an empty or full stomach or if I felt okay. I would be vomiting at least 2 times a week and chewing on ginger tablets constantly. Diarrhea also got worse but I didn't think much of it because I had been diagnosed with IBS when I was 20 and the celiac biopsies came back negative. I was taking 2 to 4 Immodium gel pills every day just to get through work. My doctor did numerous tests to find out why I was so sick all the time but no positive results for anything. She decided to send me for another gastroscopy and colonoscopy since it had been over 20 years since my last one. There, the doctor found out that I have a sliding hiatus hernia, ulcers, and bile reflux. He also did some biopsies which came back "blunted villi" so he recommended that my doctor send me for celiac blood tests. Sure enough, they both came back positive. This after a psychiatrist told me I should be tested again - years ago when the depression medication didn't work and my inflammation levels were through the roof. Today I also found out I have osteopenia. I thought I had worked through the anger that I hadn't been diagnosed years ago (when it wasn't too late to prevent a lot of the issues I have now), but it has raised it's ugly head again. My question to all of you is, how did you get past the anger at all the missed/wrong diagnoses over the years? I would have gone back and insisted on the doctor doing something if I hadn't assumed I had IBS for over 20 years. Maybe I could have had children. Maybe I could have prevented the bone loss and hair loss. Also, did anyone find that their hair grew back? How long did it take? Happy to have found all of you! Lori Here are my symptoms/related illnesses: Depression (diagnosed at 19 with intermittent success with medication combinations) Chronic inflammation Joint pain Skin rashes Chronic fatigue B12 and Iron deficiency anemia for years - I have had to take strong supplements for over 20 years. Hair loss PCOS (but I still ovulate so I'm wondering if this is true) Insulin resistant/pre-diabetic Very overweight beginning in 20s with difficulty losing weight for years (except the time I eliminated ALL grains)
  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. 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??
  5. I have been strictly gluten free for 90 days now. I went through a detox for two weeks after being gluten-free then started to do better but then 4 or 3 weeks ago I just got very very sick again. All my symptoms came back, but worse plus new symptoms. I have had diarrhea for 3 weeks every day now. I am in so much pain all I can do is sit in bed and go to school. Doctors won't see me because they don't know what is wrong. I am out of money for other docs. I don't know what to do or if celiac is really is my issue. So much fatigue and pain I had to quit my job and sit in bed all day. I am just getting worse and I don't know where to go for help.
  6. I have been strictly gluten free for 90 days now. I went through a detox for two weeks after being gluten-free then started to do better but then 4 or 3 weeks ago I just got very very sick again. All my symptoms came back, but worse plus new symptoms. I have had diarrhea for 3 weeks every day now. I am in so much pain all I can do is sit in bed and go to school. Doctors won't see me because they don't know what is wrong. I am out of money for other docs. I don't know what to do or if celiac is really is my issue. So much fatigue and pain I had to quit my job and sit in bed all day. I am just getting worse and I don't know where to go for help.
  7. 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.
  8. I was diagnosed with celiac on October 4th 2016. That day I switched my diet to gluten free everything. For a week or two after the diagnosis I felt alright. Anxiety was my worst symptom until recently. I haven't had a solid stool in about 8 to 10 days. I changed my cookware, sanitized my kitchen throughly, did just about everything I could prior to this cronic diahrrea. I did eat out once the day the symptom started. But it was at a place that claimed everything was gluten-free. (This could be one issue). Since eating out, for the past 10 days my diet has been boiled chicken and white rice with a little bit of the broth from the chicken and Greek yogurt. Every now and then a small piece of an apple. I did this for about 5 days straight and noticed that I had some hard stools and then it became challenging to go to the bathroom. On day 6 I added a small amount of carrots and spinach to the boiled chicken thinking that might help me go. It did, the next morning my stool was diarrhea again. So now I'm back to white rice and boiled chicken with a little bit of the broth from that. I added Gluten free oats yesterday morning and this morning along with a small slice of an apple. My questions are one, is diarrhea just something you are going to experience when you are first diagnosed with celiac and changing your diet? Second, is there any way to reduce this? I've been drinking lots of water to stay hydrated and my muscle twitching and cramps have gone up due to all this I believe. Finally, am I doing the right thing with this simple diet? I'd like to start some vitamin D3 and magnesium since I've heard that helps in the healing/recovery process. But I know magnesium may not be a good idea while having bouts of diarrhea. My first visit with my GI doctor is November the 9th. Is there any other foods I could eat right now? Thank you for the support!
  9. I've been struggling with a lot of symptoms for over 7 years now. I've gone on many wild goose chases to get a diagnoses, but I always seem to wind up with negative test results, or an answer that doesn't account for most of my symptoms. Most of my symptoms first started when I was in my sophomore year of high school (I am 23 years old now). I started to experience disassociation, brain fog, and fatigue first, shortly followed by visual snow. I developed tinnitus in both ears around this time also. Since then, none of these symptoms have alleviated; my visual snow and tinnitus have become a constant for me, though they are thankfully relatively easy to ignore. I've experienced headaches commonly throughout my life, but for years now they have become much more frequent. I used to rarely (if ever) experience tension headaches, but now I have tension headaches much more frequently than vascular ones. I also experience (thankfully rare) ocular migraines where I lose portions of my vision for 30 minutes to an hour in both eyes. I've become extremely sensitive to light and stimuli (especially visual and auditory). I've always been sensitive to loud noises and bright colours, but now I can hardly walk through a colourful, fluorescent-lit store without walking out feeling fatigued and in a fog. The enamel on my front teeth has been shot since I was a child, and I've always been prone to canker sores. I have very stubborn dark circles under my eyes, and rough, bumpy skin on my upper arms. My joints feel too stiff and sore for my age, and I have very painful periods (that may skip a month occasionally). My memory is poor, and I struggle with OCD, tourettes, anxiety, and depression. What lead me to look into celiac, however, was the development of gastrointestinal issues. I can't remember when these issues first started-- I think they've been slowly working into my system for years-- but they became much more pronounced over the last year or two. I feel bloated nearly all the time, and frequently have either diarrhea or constipation. I also have acid reflux, as well as frequent abdominal pain and discomfort. My diet is very heavy in foods that contain gluten, and I've noticed my gastrointestinal symptoms definitely worsen when I increase my intake of these foods. Just a couple of days ago, a pb&j sandwich and poptart were all that I ate in the evening; I went to sleep with abdominal discomfort, and woke up with much worse discomfort and diarrhea. Each flareup seems to be similarly marked by consuming gluten. I've had a CT scan of my head, several in-depth eye exams, tests for diabetes, iron and vitamin deficiencies, and high blood pressure. I've had an x-ray of my neck and spine, an MRI of my jaw (for TMJD), an EEG-- all came back negative, except for one that determined I have hypothyroidism and the MRI that showed a deformity in the right side of my jaw, neither of which account for most of my symptoms. I also had one single test for celiac (I believe it was the tTG test), which also came back negative. The negative test result I had for celiac has not convinced me that gluten isn't to blame for my issues, however. I feel that too many of my symptoms line up with celiac disease to not at least treat it as a high possibility. I've also read about the possibility of the test I had showing false negatives, which gives me some hope that my negative test result for celiac wasn't just another dead end. I'm not sure where to move from here, however. I truly feel that I have reasonable cause to suspect celiac, but I've also felt that way with many other tests that provided no answers. I wonder, though, if I should pursue more testing for celiac, or just try a gluten-free diet for a few months and see if it improves my symptoms. I am not interested in having an endoscopy; I feel that a positive blood test, or positive results from a gluten-free diet are all I want for answers (plus, sedatives and anesthesia give me wicked anxiety). I guess I'm making this forum for two reasons-- 1. I would like to know if people here that have been formally diagnosed with celiac feel that I have reason to suspect celiac based on my symptoms; 2. I would also like an opinion on trying the diet vs getting a diagnosis prior I'd also love a full list of tests that I should look into if the primary one came back negative Thank you to anyone that reads and/or replies to this, and sorry for how wordy this is ahhh
  10. First, I want to say thanks to the veterans of this site who read through thousands of posts from people like me and take the time to respond you have been there for me in rough times before and I'm bummed that I am back with confusion! I have been on a gluten free diet for 4 years and I occasionally have these rapid gastric dumping issues where I eat a meal and then within 30 minutes I am running to the bathroom for an urgent diarrhea evacuation (that's basically vomit because its all the food i just ate completely undigested). I have had no stomach surgeries or gastric bypass- none of that. I also off and on have phases where i am nauseous and nothing sounds good. My metabolism has always been high but i get so frustrated trying to find something that 1. is gluten free, 2. sounds appetizing enough to eat and 3. is semi healthy! I crave stuff like pizza and nachos. Anyways- sometimes just 30-60 minutes after eating i am hungry again! Sick of eating!!! I saw my doctor yesterday and she wants me to try dairy free for 30 days. I die. I eat dairy all the time- greek full fat yogurt and cheese are a staple in my diet for protein and calcium- I don't drink much milk so I don't see how if I eat dairy every day this causes intermittent dumping? I am depressed just thinking about doing DF and gluten-free (sorry to those who already do it I admire your strength) i am having a hard enough time just being gluten-free. SOOO my question is from y'all's experience: Is this gastric dumping/urgent evacuation caused by cross contamination of gluten? ( I have a 16 month old that eats gluten so this may be increasing my exposure) Or do you think this could really be lactose intolerance? Also my immune system has been s$#& this fall and I already had hand foot mouth and now a KILLER cold. That is all- thanks for any input!! -lj
  11. Hi! So I've never posted in a medical forum but y'all seem super helpful so I figured I'd throw this out there! Sorry if this is long lol. Basically, I'm a 22 year old who has stomach problems for as long as I can remember and it's recently gotten worse. I remember having bad stomach aches and diarrhea off and on since I was little. I finally told my parents and saw a GI in high school who took an xray, said it was IBS, and told me to eat more fiber. Around the same time I was feeling weak all the time and I was having what kinda felt like panic attack symptoms without the actual psychological panic. It kind of felt like a hot flash or too much adrenaline? I just kept telling the doctors that I felt "off". I was also diagnosed with atrial flutter, sinus tach, and asthma for no apparent reason, and I just felt like crap in general some days with no explanation. I leaned to deal with my stomach problems because everything seemed to come and go. Oddly enough when I went away to college it was a little better for my first year or two. Fast forward to about a year ago, and it started getting more consistent so I went to a new GI. She ordered an ultrasound of my abdomen and from there I actually found out that I had a poorly functioning gallbladder (without stones). I had that taken out in November and have not felt any better since. What's weird is that I never had what I would consider "gallbladder pain", as there really isn't a particular spot that hurts every time. Also I want to add that I am a super levelheaded person, so my doctor telling me it's IBS and to cut stress and see if it helps makes me roll my eyes. This is often how my diarrhea starts off these days: I'll feel bad hot flashes or just "off" and foggy for no reason, then hear the gurgles, get pain, and then diarrhea. Most of the time I feel better after that; sometimes I don't. But I think it's weird that I often feel fluish before my stomach even starts hurting. Basically I just have all these weird vague symptoms that don't seem related and have been coming and going since at least high school. My current GI doc ordered IGA and IGG tests last summer which came back negative. She also did a colonoscopy a few weeks ago and that was negative too. Now she wants to do a small bowel xray with barium. Here are my main symptoms: diarrhea 2-6 x a day (it ranges from just loose stools to full-on watery) severe bloating to the point I look pregnant weird hot flashes that seem correlated to my stomach problems headaches had my gallbladder taken out even though I'm 22 and normal weight short stature (4' 10") nausea bad eczema Does this really seem like IBS or could my blood results be wrong? My doctor seems to think she's thoroughly tested me for celiac. Would the small intestine xray show any of that? Thanks in advance!!!
  12. Is it normal after an upper endoscopy to have water diarrhea. I ate after procedure and drank two beers. And I'm a smoker. I no you should wait to smoke
  13. 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.
  14. Hey everyone, I was 21, had an increasing diarrhoea problem for months docs could not find why? Then a gastroenterology specialist asked for celiac disease blood tests. Whoops, came positive on anti-gliadin IgA and IgG as well as anti-endomissium IgA and IgG. Had to get a biopsy somewhere else by a general surgeon and that came negative. But the previous doc told me that could happen, to go gluten-free anyway as I showed positive on 4 bloodtests. After I went off gluten the months-old diarrhoea problem eased up and disappeared in a couple weeks. Now I am 24 and obliged to join the army (Turkish, btw). Army docs want me to get sick to get me off duty. So I have been on gluten again for 10 days. I havent had any problems yet, and have been eating like crazy. Read that some people here suffered enormously even after one meal. I do have a strong body, even the worst cases of diarrhoea days, I had no other visible problems and all my other stuff looked/looks fine. Now I am curious of all this, if I have it or not at all. The blood was all positive and the symptom stopped. But no problem for 10 days, when do the symptoms usually show? what was your experience or do you have any advise on this? wish y'all a healthy life! Hasan
  15. Hello all. I am posting today in hopes of gaining some knowledge and support as I battle what appears to be a worsening condition of celiac. I am a 38 yr old male who was diagnosed with celiac back in March of this year. Previous issues with diverticulitis and had surgery to remove a piece of my colon. Went to my doc as I had lost. 7 pounds. I weighed 163 before so I have always been skinny. After endoscopy and colonoscopy biopsy came back with early onset of celiac. Since then I have lived gluten free to the best of my abilities. I know I will still ingest on occasions when I am out to dinner and it becomes impossible to completely avoid. The first month or two I had no problems or issues, since then, the stomach pains and frequent bowel movements have become more common place. Two weeks ago I had flu like symptoms which resulted in 48hrs of diarrhea and nausea. Complete exhaustion and weight loss set in. Recovered and was back to normal with no concerns. Last night woke up at 4 and started with diarrhea again. Still battling as I am writing this now. Immodium does not eliminate anymore but only slows it down. Just noticed a tiny but of mucus in my stool. Obviously with my health issues I am fragile and concerned for my future, wife and child and a lot to live for. My gastro wanted me back for another endo and colonoscopy but it's so cost prohibitive I have been reluctant To go. Now I feel there is not much choice in the matter. Seems as though a lot of you all have similar issues and I was hoping to get advice on successful tempering of these symptoms. It seems living gluten free is not always enough and I am hopeful someone has found something that reduces the recurrence of these symptoms, It is now affecting my daily life with work, family and friends. Thanks for your time
  16. I am feeling so frustrated that I just want to cry. It really feels like it's always something and all I want is to feel good and be healthy so I can take care of my kids. I've been gluten free since diagnosis on January 23rd. I am only eating whole foods that I prepare and I'm starting to feel like I'm getting the hang of this thing. 3 weeks ago I got a uti. Ugh. The doctor put me on an antibiotic...it cleared up. But 5 days later I was hit with the worst case of D since diagnosis. Watery...10 -20 times a day. Felt so awful. On the 4th day I went to see my doctor because I was getting dehydration and I was scared about c. Diff. He had me do stool samples and as of yesterday I ever heard nothing on those. The D went away thankfully...but 2 nights ago the uti symptoms start again. I spent all of yesterday drinking water and cranberry juice...hoping somehow to flush it out. But after waking up many times last night in pain I went in this morning and sure enough...I have another one. She put me on macrobid. Also...she's sending it off to be cultured to see what it is. Anyway...I'm so tired of feeling bad! I can't believe I'm on antibiotics for the 3rd time this year...I had to take them in January for h.Pylori. I'm really worried about what they will do to my poor gut and if I'm ever going to get to a point where I don't have D for a month...feel good for a month. Thanks for letting me vent. Any suggestions are always appreciated. Or feel free to share your own frustrations.
  17. 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.
  18. So I've been gluten free for two months, and finally started to see my stomach symptoms abading. This last week, I was on a THREE week no diarrhea streak, so I thought I finally got my situation together. Then BAM, last night I got sick. My husband tells me that sometimes people just get an upset stomach, and it might not have anything to do with celiac. I know he could be right, but there's this nagging feeling that maybe I got it wrong on a few things I ate in the last few days. Do you think any of these could be the culprit? 1. Kimchi - the label doesnt indicate anything with wheat - although MSG is an ingredient. My symptoms started over 24 hours after eating it. 2. white wine/champagne at various points over the weekend - maybe i just had too much and it caught up with me? 3. Gluten free labeled Oat Scones. They were made in a certified gluten-free bakery- but I've heard oats can cause a problem in some?? 4. I'm on antibiotics - so maybe they just upset my stomach? or maybe wine/antibiotics together? On another note, it's hard for me not to get really down about these slips when I was doing so well. What do you do do keep your head up and keep trucking? I was doing so well! I was barely eating out, strictly reading labels, the whole shebang. ~Ami
  19. I feel hopeless and overwhelmed I’m a 29-year-old mom and newlywed undergoing testing for Celiac/NCGS, and I’m fairly certain that my dear husband is tired of hearing about it all the time…. So here I am. We’ve been together for three years, and I have to tell my husband that I swear that there was a time in my life where I was “normal.” I’m always achy, have crazy GI issues (not great for our sex life), my skin does insane things, and I alternate between raging irritability, anxiety, and depression. Basically, I’m not much fun to be around. We can’t eat out with friends. I don’t do fun things with my daughter. My life revolves around food and my stupid body. I just want to crawl in a hole and stay there. I started my gluten trial 11 months ago after realizing that the host of symptoms that I was experiencing weren’t normal and could potentially be diet-related. I mentioned the idea of cutting out gluten to some nurse (who, in hindsight, didn’t know jack!) and she told me to go ahead, “cut it out for four weeks and then reintroduce it and see what happens.” Then I could “‘call back’ and they’d enter a gluten allergy into my file.” Yes, she seriously said that. And in my naiveté I followed her advice—little did I know that any attempt at an actual diagnosis would be thwarted from there on out. Anyways, I was diagnosed with Salmonella after eating a bag of recalled lettuce in 2010. But other than that, I’ve always had an iron stomach. Nothing fazed me. But over the past four years my health has gradually deteriorated--and this has been so gradual a process that I can’t even pinpoint any onset, and I never even realized that what was happening to me wasn’t normal. [in case you’re curious, here’s a list of some of my symptoms: Neurological—anxiety (dx); depression (dx); irritability; brain fog; and memory problems. General—chronic rhinitis (dx); chronic sinus infections (dx); headaches; joint pain; weak dental enamel; fatigue; chronic dehydration; UTIs; dysmenorrhea (abnormal periods); night sweats; and water retention. GI—nausea; insatiable appetite; chronic diarrhea (dx); hemorrhoids (dx); painful gas; abdominal pain; and bloating. Skin—keratosis pilaris (dx); geographic tongue (dx); dark circles; adult onset cystic acne (dx); dry skin; eczema; and strange petechiae like rashes that look like I’m bleeding under my skin on my legs.] I do yoga. I’m a runner. I eat organic. I don’t eat processed food. I haven’t had fast food in over a decade (literally). I’m 5’6”, and depending on my water retention, range from either 112-120lbs. I’ve always considered myself a healthy individual. But over the past few years that notion has been destroyed. It finally took my husband, my daughter, and my family calling me out on my “antisocialness” to realize that something was wrong. I would seriously rather lie on my bed or sofa in my sweatpants than go anywhere, do anything, or see anyone. My stomach pain interfered with my quality of life that much! It was like there was a war going on inside. And my previously clear skin looked like a 16-year-olds! It was humiliating. I tried everything for that—clarisonic, topical antibiotics, prescription retinoids, creams, washes, masks, birth control—all to no avail. Over time, I guess I just assumed that multiple loose bowel movements a day was normal; that the stomach gurgling, gas, pain, and bloating were just unfortunate; and that the acne was just hormonal [P.S. That went away as soon as I cut out dairy. Quel surprise!] At that point I was desperate. I did a bunch of research online, and I decided I’d try cutting out gluten like the nurse suggested. And it helped! And when I cut out dairy a few months later it was like heaven on earth! All of my symptoms either went away or started to go away. And when I reintroduced either of them, all of my symptoms came back; so I knew something was up. I’ve since learned that I can’t tolerate dairy or gluten (all grains except for rice, and especially not corn). And it’s been do-able. Not fun, but do-able. [i used to consider myself a “foodie,” but not so much anymore]. The problem is, my husband and I are pushing 30 and we want to try to have another kid soon. Since I’m nervous about having such a restrictive diet, potential allergies, or a serious disease, as well as the impact that my health could have on a child, I talked to my PCP about it and she suggested that I see an allergist and a Gastroenterologist. So I did one more reintroduction test (wheat only) just to make sure, and lo and behold, my body freaked out! Except this time I got a crazy rash that I’d never had before (which four doctors haven’t been able to visually identify). That was in February. In March I did a second reintroduction test (again wheat only). The dumb rash came back. So I went to an allergist. She did a full food allergy blood panel on me and they all came back negative. She also did a Celiac panel on me and that came back negative too (though it’s no surprise since I had only eaten one serving of gluten/day for four days, and had been gluten-free for nine months prior). My PCP told me the blood work means nothing because of that. Anyways, a little over a week ago I got sick again, only this time, it was on accident. And the dumb rash came back, except it's spread more this time. My stomach is freaking out, I’ve had diarrhea for ten days, blood in my stool for three, and am passing undigested food. Basically anything I eat goes right through me. I’m starving, dehydrated, and look and feel like death. I saw my PCP and she said I need to go in for a colonoscopy and probably an endoscopy. I’m scared, frustrated, tired, and feel sort of crazy. I’m so tired of feeling like this! I don’t know what I’ll do when the GI tells me that I’m going to have to start eating gluten again! If I could hide I would. So this is where I’m at now. I truly appreciate those of you who took the time to read this! I just know I need to stop relying on my husband as my sole support because it’s not very healthy, and my family just doesn’t understand. Any words of advice, insight, or comfort would be much appreciated! Shannon Gluten-free since May 2013 DF since Sept 2013 Grain free (excl. rice) since Sept 2013 Allergy testing (negative) Mar 2014
  20. Hi everyone, this is my first post. Every time I do a search on celiac, the most helpful responses seem to be this website/forum, so I figured I would sign up. I am recently diagnosed with a wheat allergy. I've dealth with years of gastrointestinal distress. I went to a few GIs in the last two years. One called my problems IBS without running any tests and sent me out the door. Another doctor did a colonoscopy, which came back negative, and also chalked up my symptoms to IBS. I've dealth with alternating diarrhea, constipation., gas, bloating, and a number of other non-GI related symptoms - asthma, finger swelling, hives, runny nose, nauseau. My symptoms seem to come and go every few years but it's back and I've decided I'm not willing to deal with this anymore. My gen practicioner found the wheat allergy, and I decided to make an appointment with a GI on my own to further investigate. Seems a lot of my symptoms could point to a potential celiac or gluten sensitivity issue. I am pending the results of a celiac genetic test.My doctor said it would be the test of choice since I've already been gluten-free for a few weeks (since my wheat allergy diagnosis). I do have a few questions: 1. Doctor's assistant wanted me to come in to review my results of the genetic test, saying it was a complicated result, based on percentages, and it better to review with the doctor in person. Is this legit? I know the doctor ran a celiac profile - would this also test of antibodies, or just genetic testing? Does anyone have an idea of what I can expect once I go in. I can't wait to hear the results. As crazy as it sounds, I want a positive result so I can just work on getting myself better again. 2. On a somewhat related topic, I figured I woudl ask ... how do you all deal with the anxiety of going out in public, when there's always a chance of the big d? I'm in constant fear of public D, to the point where I sometimes cancel plans because I am too embarassed. I don't go all the time, but it's enough where there's a chance it could happen, and I'd rather not deal with it. I know my friends won't judge me, but regardless, I am embarassed to go to the bathroom multiple times, esp in public. I'm afraid strangers will judge me, or that i won't get to a bathroom in time. thanks in advance! I'm looking forward to getting you know you all more here ~Ami
  21. I think I've been glutened...but I'm not sure. I've been feeling better daily until today. Had the big D after a week and a half without. Stomach cramping, achy joints, fuzzy head. Awful...tired...etc. I ate out for the first time on Saturday...felt fine then, Sunday and yesterday. Then today it's awful. Could it take this long? I've looked at everything else I've eaten and prepared myself and I don't see anything. Thanks
  22. Hi Guys! Has anyone had a strong reaction to Levothroid or another thyroid medication? I've been gluten-free now for two or three months and I seem to be very sensitive. Don't tolerate gluten-free oats, rice, corn, soy, dairy, nightshades, bananas, shrimp, yeasts, fermented foods and others I forget. So, I've been really incapacitated by all this (or that, who knows by now?) and had eventually narrowed my diet down sooooo far, just to avoid reactions but with no health improvements. THEN I made the gluten connection and that led to figuring out the other grains so now . . . there's some progress and have so much hope for improvement. Amazing-to-me is that I now have bangs on my forehead that were never there before - about three inches of hair growth in the front where it must have been bald for the past ten years or so. Now that's a problem I hadn't even known about until it grew back, but I LOOOOVE that visual evidence of healing. I don't feel so ravenously hungry all the time and now I eat my salad with a fork instead of with my hands like a starving refugee - I hope other things will keep getting better and better. (I had a negative blood test, but THAT dr would only order one most basic and I felt it was urgent to get off gluten without waiting for more tests) I only experienced diarrhea as a symptom in the last couple years, long after I was knocked far down by other issues with a body just not working. ( I have something that looks like possible D. H., so perhaps that is why? Still have lots more to learn of DH, but think I read it can have fewer digestive symptoms? hope to have it checked out later). After many many years on thyroid supplementation (autoimmune thyroid issues), I "knew" I needed to stop taking my thyroid medication, that it was making things worse. I couldn't explain it, but trusted my instinct (the doctors appreciated THAT!). In the past, I'd taken a lot, even 200mcg at the highest. I took myself off and it's been a year or two now. Now I really want to get back the benefits from thyroid supplementation and my bloodwork still shows the need for it. Most of all, I want to get some sleep. Yesterday for the first time I took Levothyroid (50mcg), a pretty small dose for me, then had immediate, ridiculous diarrhea after my dose, followed by a few later bouts and other pains / sensations in my stomach areas, like I would get from grains and stuff. I took another dose today with the same result, again most severe within a minute of taking it. Please, does anyone have insight into this reaction to the Levothroid? I would really appreciate it. I guess my post also turned into sort of an introduction, so HI! and I would dearly love to hear from those with a similar situation to mine, it'd be so good to hear experiences of coming back from all this, that it's worthwhile trying the 9,999th thing. Thank you Thank you ))))
  23. 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?
  24. Short intro - after 25 years of constant sickness I was diagnosed celiac. Two years and 3 months later I have been gluten free and healthy and happier than I ever knew was possible. For the first time ever I am able to live a semi-normal life. In the beginning I learned the hard way about getting glutened by roommatees, restaurants and from makeup products. I'm fairly sensitive. we had to clean out our entire house and start over and I don't eat out ever under any circumstances. It is a boring existence but a healthy one. It has been a year and a half since I've been accidentally glutened and I have finally felt confidence that I will not have issues with that ever again because I am VIGILANT. About five days ago, out of nowhere I had stomach cramps and had to go to the bathroom a LOT. But I had been a little constipated and I thought that was probably just catching up to me. Then three days ago I was trying to take an hour off work for myself and all of a sudden I got dizzy, couldn't catch my breath and felt sick. I ate a gluten free sandwich and then almost immediately got diarrhea. This is devastating to me as I do everything to avoid getting the D. I have checked my list and my symptoms - I don't believe I am glutened unless I am not having a normal reaction. I have a very standard reaction every time and this hasn't been it. Well the whole thing upset me so much I spent the entire day crying and stressed out. My husband came home and he convinced me that my incredible amount of stress is causing the tummy ache. He says that he watched a change happen in me when he decided to switch jobs, which in turn made us rely financially more on the business I was just starting. I believed him but still have been worried about what I am eating and if I have developed some other sort of sensitivity (I already cannot have gluten, eggs, peanuts, almonds, sulfites, or salycilates). Anyway, I am making this too long. Yesterday my bowel movement wasn't normal but no D and I finally started eating meals again. Today I struggled all morning, bawling my eyes out about the stress of my business and the 90 hour weeks I am working. I decided that it was in fact stress and I needed to just cancel my entire day and spend it relaxing. I haven't had a day off of work in about 6 weeks. That would be enough to stress anyone I'm sure. So I cancelled my day and tried to just sit at home with a puzzle and occupy my mind. I think I did good although I did spend about three hours back and forth on emails setting up appointments :/ I ate a good dinner and now BAM the D again. It hurts, I"m cramping and miserable. And I'm so scared! I don't know what is wrong with me. Husband says its stress. That I'm not having any sort of regular gluten reaction, no other symptoms. I don't know that stress could make my stomach be jacked up for 3 days like this. Especially when I'm making a marked effort to try to take some time off. He says I didn't really take time off and I"m just sitting here stressed about not working. That is true but I'm not sure I can see that causing these awful stomach upsets. What do you think? I'm feeling pretty alone and upset about all of this. I can't afford to get a reputation for cancelling people when I'm just starting out my business. I should be HAPPY not stressed - I have as much work as I want and am making money and working more than full time for the first time since I was diagnosed. I never had the confidence to work, I always felt like I was in recovery. Now I am finally able to contribute and I"m falling apart and don't know why.
  25. 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?
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