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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 1,759 results

  1. So my 7 month daughter is having issues with corn. I have Celiac and am nursing so she has never even been in contact with gluten. I read today during some research that corn can sometimes cause the same symptoms as gluten in a Celiac patient. If you have experienced with this please leave a comment with your symptoms. Diarrhea, upset stomach, rashes, vomiting? I want to see if there could be a possible correlation as I feel like my daughter is immunosuppressed but the allergist claims it is not an immune response to the corn. Anyone that has experience with their own children I would love to hear from you.
  2. Hello, I've just made my account today, but i've read lots of posts in the past that helped me throw the bad days. I've been diagnosed with celiac 3 months ago (after 6 months of pain, gas, bloating, constipation, brain fog and fatigue) and i tried to be strictly gluten, corn, diary, soy (only 1 month) free. I also cut most of sugars, and other grains besides rice. I eat mostly veggies, fruits, fish, chicken, rice and quinoa. Sins then i've been back and forth with my symptoms as i had good and bad (more often) days . I learned that i need to be patient and give my gut time to heal, but for some time i have a continuously pain in lower right side of my abdomen, a pain that feels like i have a knife inside my gut. It gets worse after i eat and food arrives where small intestine meets the colon. I'm pretty sure i am gluten free and that i'm not experience any CC cause i have a food journal, the pain is a little different and i don't get fatigue, brain fog and depression symptoms. Does anyone of you have this kind of pain? Is this a part of healing process? I should give my gut more time to heal or i should go to take some tests?
  3. Hi, it's me again. A quick question for you guys! Im waiting to see a gastro in June, but as symptoms have been almost unbearable, i decided to do a DNA test in the interim to see if I had the hladq2 or hladq8 markers. Got the results back a couple days ago, and i have neither of those markers, and have been told i have a low risk of developing the disease. What I would like to know is this, can you test negative for the dq2/dq8 markers and still go on to develop celiac disease? Any thoughts, opinions etc would be very appreciated! Thank you
  4. Hey guys so I have had this rash going on for a few months and my doctor just looked at it and said she didn't know what it was and to just use a steroid cream. The cream only works sometimes and generally just stops itching and the blisters from getting bad but never clears it up. I have questioned gluten sensitivity in the past because every time I eat it I immediately get hiccups. Anyhow my rash is on the sides of my ring and middle finger about 2 inches long. It starts as little clear water pockets under the skin and is incredibly itchy. Then it turns to red scaly and peeling and the blisters become raised. Does this sound like something anyone is experienced? Any suggestions for how to get my dr. To look into it more? I'm just nervous because last visit she charged me 800$ to tell me she didn't know what it was and send my home with a prescription that doesn't even work really. Thanks so much in advance!
  5. Hello! I am a 59-year-old, newly diagnosed with allergies (I also suspect that i have some form of celiac or gluten intolerance). I haven't done the food allergy tests or challenges yet - but from what i've read, i may have OAS when it comes to certain foods, but i'm not sure. I'm not sure I would do a celiac test at this point, because that would require me eating mostly gluten - i've been eating mostly gluten-free - i don't know what else to do and i need some tips - HELP!
  6. Okay. Long story short - I've had itching blisters coming and going for at least 10 years, I'm 27 now. When I was 23 I got diagnosed with an autoimmune kidney disease. Ever since then I've been very careful with my diet and avoiding, but not completely cutting out gluten. I've had stomach problems since I was a kid. Had acne since I was 14. Diagnosed with PCO. Always feeling tired. Can eat tons of food and never gaining any weight. Recently I found out I am anemic, Ferritin was 7 (range is 10-70 I think) I was also deficient in D-vitamin. They took transglutaminas tests but it was negative. I started eating gluten again in February, and my blisters and ezcema like rashes came back quite quickly. I know a gastroenterologist and told him about my low iron, my blisters etc. And he immediately said that it sounds like celiac disease. He scheduled a gastroscopy (they go in with a camera through the mouth and take biopsies from the small intestine) that I did today. The doctor took 3 biopsies and said that it looked like the villi was flattened. He also said that I could start a gluten free diet if I wanted to before the test results comes back. I'm just confused right now... shouldn't they do a skin biopsy on my blisters as well? I read about ppl having DH who do that and get diagnosed that way. how can the blood tests be negative and the biopsy not? if i go on a non gluten diet now, my blisters and rashes will go away which is good ofc, but then if the biopsy come back negative, they can't do a skin biopsy? It would make so much sense to me if I'm celiac. Therefore I'm scared the biopsy wont show anything since I've been going on and off gluten for years. Although the doctor said it looked like I am celiac? And the blisters can't be anything else than DH!! And the low iron and everything. Ugh. I just want the results now... And know for sure.
  7. I'm a 30 year old female. All of my life I've had extreme bloating after eating. About 4 years ago I started having upper stomach pain. It's dead center below my rib cage where the diaphragm is located. As the years have passed the pain became more intense and more frequent until it was daily and affecting my ability to function. I had 2 drs say it was gastritis but prilosec did nothing to help. My head got to where it always hurt and I was exhausted constantly. If the pain and head fog wasn't already enough my joints started to hurt and swell making it hard to get out of bed. I'm 4ft 11 inches and was 130 pounds and my blood pressure was staying 160/105. I've always suffered with spells of constipation then episodes of D. I was getting mouth sores and had random rashes and itching mostly on my legs. I've also suffered anemia. When my stomach pain is at its worst I have foul smelling stools. All my liver and pancreas testing have come back normal. I tested negative for h pylori but am currently on carafate for ulcers. I'm going for another gallbladder ultrasound in 3 days as 9 years ago the ultrasound showed sludge so the dr is wanting to recheck. I've done research for a while now on gluten and have cut it out for over a month. I have noticed a significant improvement since stopping it and only have flare ups if I accidently consume gluten. So my question is does this sound like anything you've experienced and been positive for celiac? I also have numbness and tingling in my feet and hands
  8. Summary:History of gluten intolerance, symptoms have returned despite no change in diet after 5 years of the same gluten sensitivity, I now seemingly react to the smallest cross-contamination and am not getting symptom relief. Do I need to worry about refractory sprue? I posted this on the celiac sub-reddit about two weeks ago but now I thought I could get more input here. A little background. When I was 14 years old, I started having strange joint pains in my wrists, persistent neuropathies and tingling in my hands, and other strange symptoms. Pains were seemingly inflammation of the tendons, made worse by exercise, and the inflammation responded well to NSAIDs. Went to a ton of doctors, tested for RA, MS, and anything else under the sun, but everything came back negative. "We don't know." My digestive health wasn't too bad or too good: I got constipated and got diarrhea from time to time, but not too often. I didn't really experience severe abdominal pains on a consistent basis so I didn't think anything of my digestive symptoms. As a result, no one checked anything digestive. The inflammation went away with NSAIDS. The only lasting effect after was that I absolutely couldn't exercise without developing terrible tendonitis and Joint pain within a few days, which caused a lot of depression. The disease remained stable in nature for a while until when I turned 21 or so. The chronic tendinitis spread to my ankles in addition to my wrists. The inflammation began to happen without any exercise, just from me existing. I also began having some more severe digestive problems, loose stools, poorly-formed stools, stomach pains, and felt like I was in a fog all the time. I tested negative for everything rheumatological. During a late-night research session, I googled a bunch of my symptoms and found out that a lot of people with gluten intolerance experience these same symptoms. I immediately went gluten-free. Over the course of the next two weeks, my digestive health was completely restored, and my joint pains were decreased by about 80% after about 1-2 months. I had an enormous amount of energy. I felt like a new person. I went to the doctor and got tested for Celiac, but the antibody test came up negative. I was already on a gluten-free diet, so I know that probably meant little. I know that my symptoms are not reflective of traditional Celiac and I apologize for self-diagnosing (no positive test). All I know is that going gluten-free absolutely changed my life and restored my health. Over the past five years, I've had absolutely no baseline changes in my gluten sensitivity. I cook most of my food, and eat at places like Chipotle and occasionally eat at restaurants and make sure not to order anything with wheat, rye, or barley. I get "gluten-fee" pizza at pizza places knowing that it's cooked in the same ovens with bread and do fine. I avoid beer and am careful with my alcohol selection, but basically, I was always able to tolerate cross-contamination. On the one occasion when I did eat bread, I had diarrhea for a week or two and then was back to normal. I was still tremendously prone to repetitive strain injuries and inflammation, but not to the same degree I had been before and ONLY after exercise. I was living my life. ... Fast forward to about 2-3 months ago. I have been going through a very stressful period in my life, and I think the stress triggered something. Simultaneously, I have a "glutening:" for a period of a couple of weeks, on 3 or 4 occasions, I eat sushi with imitation crab meat and rice binder that has wheat in it. I start having the pains in my ankles again. X-rays have shown that my ankles are swollen, and I haven't done anything but stayed on my feet and walked. Start developing tendonitis in my wrists again. The loose stools and indigestion are back and I feel like my brain is in a fog. I only get a little bit of symptom improvement if I eat the food I cook for myself. . I now respond to foods I wasn't responding to before. Eating at the same cafeteria I was eating at 5 months ago without a problem now causes a reaction. I have seemingly become very sensitive to ANY cross-contamination whereas just half-a year ago I could tolerate it without a problem. This is after five years of absolutely no change in my baseline reactivity. What the hell is going on? I've HAD glutenings before years back, and they never caused my symptoms to return and persist as they have now! And they NEVER changed my baseline sensitivity to gluten. All of my rheumatological tests have come up negative. I finally spoke to gastroenterolist yesterday and he agreed that this could be Celiac's disease, but had no answer for me on whether my baseline sensitivity would improve. I'm not willing to gluten myself for 6 weeks to get a positive blood test. The symptoms are too much to bare and I am trying to finish graduate school. My question is... if I do have Celiac... Has it suddenly gotten worse? Is it normal to have a sudden worsening of this condition, after 5 years at steady-state? I feel like I'm losing my mind, and have no idea what to do. I'm in constant pain and it's miserable. Whatever this is, it has taken such a huge toll on my life now.
  9. Hello! I am a new mom of a 7 month old baby. At the age of 6 months I began to feed my daughter vegetable based foods and also cereal with wheat, she developed two small dots on her face (one near chin, the other on her cheek.) I thought it was just baby acne since she had had it before.. Little did i know this "acne" would spread. Within a weekend of being on vacation and having limited access to her vegetable based food, I opted to feeding her mostly the cereal. My mistake. The two dots began getting larger and spreading to her cheeks. I began to research to try and find a skin condition that matched hers, the closes thing was Celiac Disease and DH Dermatitis Herpetiformis. I could see the areas being affected were on the back of her neck, cheeks, arms and elbows, and her ankles. It became blistery obviously itchy and uncomfortable. My husband did a DNA test that showed that he carries the genetic trait for Celiac Disease, so I have no doubt thats what it is. I stopped the cereal within immediate realization that she could have a gluten intolerance. Which I suppose I shouldn't have done because thats the only way to find out if they are indeed intolerant. Within a few days of gluten being withheld from her diet her face began to clear up again, but still from time to time will flair back up. (its only been about two weeks.) Is there a chance gluten is still in her system?? I also am breastfeeding, which I have read different things about it passing through the milk. As of now I am trying to keep my gluten intake level at a 0. Is there anyone who knows more information about Celiac in infants and how long a rash will last? or where I can find information for my sweet baby girl? Thank you in advance <3
  10. I tend to get bruising frequently on my upper legs/hips. I've always assumed it was because I'm pretty clumsy but they're in a spot that doesn't match door knobs or my desk even. The most recent bruise has popped up in the last day and I know that I've been especially careful so I'm not sure where it's coming from. They are on the same spot on both my left and right legs. Does anyone else have a problem with frequent bruising? Especially in the same spot?
  11. Forum Members, Has anyone else seen this new research on the Epstein-Barr Virus and it possible link to various Auto-immune diseases including Celiac disease. https://medicalxpress.com/news/2018-04-epstein-barr-virus-linked-diseases.html I will quote the whole article for easy reading as it appeared on Medical Express. It is very similar to the research reported by Popular Science approx. a year that mentioned the link between a reovirus (rotavirus) and how it might trigger higher Celiac rates in Finland. I think Ennis_tx started a thread on it. Epstein-Barr virus linked to seven serious diseases April 16, 2018, Cincinnati Children's Hospital Medical Center This electron microscopic image of two Epstein Barr Virus virions (viral particles) shows round capsids—protein-encased genetic material—loosely surrounded by the membrane envelope. Credit: DOI: 10.1371/journal.pbio.0030430.g001 A far-reaching study conducted by scientists at Cincinnati Children's reports that the Epstein-Barr virus (EBV)—best known for causing mononucleosis—also increases the risks for some people of developing seven other major diseases. Those diseases are: systemic lupus erythematosus (SLE), multiple sclerosis (MS), rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), inflammatory bowel disease (IBD), celiac disease, and type 1 diabetes. Combined, these seven diseases affect nearly 8 million people in the U.S. Study results published April 12 in the journal Nature Genetics. The project was led by three scientists: John Harley, MD, PhD, Director of the Center for Autoimmune Genomics and Etiology (CAGE) at Cincinnati Children's and a faculty member of the Cincinnati VA Medical Center; Leah Kottyan, PhD, an immunobiology expert with CAGE; and Matthew Weirauch, PhD, a computational biologist with the center. Critical contributions were provided by Xiaoting Chen, PhD, and Mario Pujato, PhD, both also in CAGE. The study shows that a protein produced by the Epstein-Barr virus, called EBNA2, binds to multiple locations along the human genome that are associated with these seven diseases. Overall, the study sheds new light on how environmental factors, such as viral or bacterial infections, poor diet, pollution or other hazardous exposures, can interact with the human genetic blueprint and have disease-influencing consequences. "Now, using genomic methods that were not available 10 years ago, it appears that components made by the virus interact with human DNA in the places where the genetic risk of disease is increased," Harley says. "And not just for lupus, but all these other diseases, too." The full impact of this study could take years to explore. Here are some of the initial implications: New concern about the 'kissing disease' EBV is a strikingly common virus. In the US and other developed nations, more than 90 percent of the population becomes infected by age 20. In less-developed nations, 90 percent of people become infected by age 2. Once infected, the virus remains in people for their entire lives. Mononucleosis, which causes weeks of extreme fatigue, is the most common illness caused by EBV. Mono was nicknamed the "kissing disease" years ago because the virus spreads primarily via contact with saliva. Over the years, scientists have linked EBV to a few other rare conditions, including certain cancers of the lymphatic system. Harley, who has devoted much of his career to studying lupus, found possible connections between lupus and EBV years ago. That work includes proposing mechanisms that the immune system uses in response to the virus that lead to lupus, and showing that children with lupus almost always are infected with EBV. Today's study adds weight to those lupus findings and adds six more well-known diseases to the list. "This discovery is probably fundamental enough that it will spur many other scientists around the world to reconsider this virus in these disorders," Harley says. "As a consequence, and assuming that others can replicate our findings, that could lead to therapies, ways of prevention, and ways of anticipating disease that don't now exist."So far, no vaccine exists that will prevent EBV infection. "I think we've come up with a really strong rationale for encouraging people to come up with more of an effort," Kottyan says. "Some EBV vaccines are under development. I think this study might well encourage them to push forward faster and with rededicated effort." How EBV hijacks our immune system When viral and bacterial infections strike, our bodies respond by commanding B cells within our immune systems to crank out antibodies to battle the invaders. However, when EBV infections occur, something unusual happens. The EBV virus invades the B cells themselves, re-programs them, and takes over control of their functions. The Cincinnati Children's research team has discovered a new clue about how the virus does this, a process that involves tiny proteins called transcription factors. Our bodies have about 1,600 known transcription factors at work within our genome. Each cell uses a subset of these to become what they are and to respond to their environment. These proteins constantly move along the strands of our DNA, turning specific genes on and off to make sure cells function as expected. Credit: Cincinnati Children's However, when the transcription factors change what they do, the normal functions of the cell can also change, and that can lead to disease. The Cincinnati Children's team suspects that the EBNA2 transcription factor from EBV is helping change how infected B cells operate, and how the body responds to those infected cells. The new paper shows that seven seemingly unrelated disease states actually share a common set of abnormal transcription factors, each affected by the EBNA2 protein from the Epstein-Barr virus. When these EBNA2-related clusters of transcription factors attach themselves to one portion of the genetic code, the risk of lupus appears to rise. When those same transcription factors land on another part of the code, the risk of multiple sclerosis appears to rise. And so on. "Normally, we think of the transcription factors that regulate human gene expression as being human," Kottyan says. "But in this case, when this virus infects cells, the virus makes its own transcription factors, and those sit on the human genome at lupus risk variants (and at the variants for other diseases) and that's what we suspect is increasing risk for the disease." New leads emerge for improving treatment It remains unclear how many cases of the seven diseases listed in the study can be traced to prior EBV infection. More genomic analyses involving many more patients with these diseases will be required to make reliable estimates. "The impact of the virus is likely to vary across the diseases," Harley says. "In lupus and MS, for example, the virus could account for a large percentage of those cases. We do not have a sense of the proportion in which the virus could be important in the other EBNA2-associated diseases." However, the breakthrough identification of specific transcription factors connected to EBV infections opens new lines of study that could accelerate efforts to find cures. "This same cast of characters is a villain in multiple immune-related diseases," Weirauch says. "They're playing that role through different ways, and doing it at different places in your genome, but it's the same sinister characters. So if we could develop therapies to stop them from doing this, then it would help multiple diseases." A number of compounds—some experimental, some approved as medications for other conditions—already are known to be capable of blocking some of the high-risk transcription factors listed in the paper, Weirauch says. Teams at Cincinnati Children's have begun deeper studies of some of these compounds. Findings go far, far beyond EBV While the EBV-related findings involved more than 60 human proteins linked to seven diseases, the Cincinnati Children's research team already has taken a huge next step. They applied the same analytic techniques to tease out connections between all 1,600 known transcription factors and the known gene variants associated with more than 200 diseases. The results of that massive cross-analysis also appear in today's study. Intriguing associations were documented involving 94 conditions. "Our study has uncovered potential leads for many other diseases, including breast cancer," Harley says. "We cannot possibly follow up on all of these, but we are hoping that other scientists will." After devoting decades of research to hunting down the causes of lupus, Harley says this study represents the most important discovery of his career. "I've been a co-author in almost 500 papers. This one is more important than all of the rest put together. It is a capstone to a career in medical research," he says. Software behind discoveries to be made public Detecting and tracking the activities of these transcription factors took years of work involving dozens of laboratory and computational experts. The project required gathering massive sets of genetic data, then analyzing every genetic change affecting the activity of the virus. Doing this required creating two new algorithms, called RELI and MARIO, which were developed at Cincinnati Children's by Weirauch and colleagues. Both software tools and a related website will be made publicly available. "We are going to great lengths to not only make the computer code available, but all of the data and all of the results," Weirauch says. "We think it's an interesting approach that could have implications for many diseases, so we're contacting experts on the various diseases and sharing the results and seeing if they want to collaborate to follow up on them." Explore further: Study: Epstein Barr virus protects against autoimmune disease More information: John B. Harley et al, Transcription factors operate across disease loci, with EBNA2 implicated in autoimmunity, Nature Genetics (2018). DOI: 10.1038/s41588-018-0102-3 Journal reference: Nature Genetics Provided by: Cincinnati Children's Hospital Medical Center It is me again. What do you think have they found the trigger for Celiac disease. We know stress is common before a Celiac disease diagnosis and having Mono would definitely qualify for stress. Has one one else thought stress was their trigger? And why I was tested for Mononucleosis in the fifth grade I don't think it was the cause of my Celiac disease since I always had GI problems as a kid but in cause you have had Mono/EBV it might be something worth being aware of. I have had herpe simplex which is a similar disease that causes mouth sores often and my sores (ulcers) virtually went away when I started my gluten free diet. . . . later keep in check by taking the amino acid Lysine. Though who knows it (EBV/Mono) might of made it worse. Maybe I was only NCGS at the time and this could/might of pushed into the Celiac territory? (this would make great article on celiac.com by the way) if the admin thinks it is something worth reporting on. Here is a great overview on EBV/Mono "Kissing Disease" if you have ever wanted to know/wondered what it is and if you have ever had it. http://archive.boston.com/news/health/articles/2008/10/06/why_is_there_no_vaccine_against_infectious_mononucleosis/ *****This is is not medical advice but I hope it is helpful. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.” 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,
  12. Hello Everyone! A little background history, about 4 years ago, I was diagnosed with Hypothyroidism and Hashimoto's Disease. I had half of my thyroid removed due to an irregular biopsy. No cancer, but a plethora of daily meds for the rest of my life! My Endocrynologist ran a full comprehensive blood test and it showed that I was anemic as well as my liver functions were low. She recommended that I visit my PCM and have him check both of them more extensively. Well, I did go visit my PCM, and he ran a Celiac Panel and a Ferritin test. The Ferritin came back slightly anemic but my hemoglobin levels were fine! However....my Celiac Panel came back with what seems to me to be a mess. My Gliadin Ab IgG is 160 higher than normal, Gliadin Ab IgA is 234 higher than normal, my tissue transglutaminase Ab IgG is normal at 2 but my tissue transglutaminase Ab IgA is >100 higher than normal and my IgA is normal at 258. His nurse called me this afternoon and told me that my results "indicated" celiacs and that I was being referred to a Gastroenterologist as well as a nutritionist. "Indicated", could you please be a bit more descript????? Can anyone enlighten me as to what these results actually mean??? Do I have Celiacs? And I Gluten Intolerant, or have a gluten intolerance??? This is just so frustrated?!?!
  13. Hi everyone! Brand new here !! Still trying to figure out how this all works So, a few months ago I started feeling absolutely terrible. Muscle Pains, palpitations and tingling sensations, as well skin sensitivity and rosacea. I did not notice at the time that it was related to food until I had a few "poisonings" that I thought came from shellfish. I have always suffered from severe C but never D. Anyways.. I was incredibly sick for about 3 months and I got tested for everything under the sun: even lyme disease, toxoplasmosis etc. Then I got a brain scan that showed I had T2 non specific white matter lesions that could be consistent with MS ( which of course scared me A LOT) These were seen by 3 neurologists who thankfully ruled out MS, but also did not give me a reason for them. Interestingly enough, I got a 23 and me test kit as a gift for Christmas, and when it came back, it showed I had a variant in the HLA-DQA1 which increased my chances of developing celiac. When I saw that it was like a light bulb came on immediately !! . I just knew that it had to be related to gluten at that point. So, I went to at least 3 doctors who completely dismissed me ( one said those tests were not accurate at all , another said my symptoms were psycosomatic and refered me to a psychiatrist.. ) until finally I had one doctor send me for testing. Upon finding my ttg A elevated and the EMA positive, she refered me to a gastroenterologist to get more tests. This gastroenterologist sees my husband for his Chron's Disease and he is very good for that, but when I showed him my ttgA result and the EMA, he said he did not believe I had Celiac because I did not have D, only C, which put his celiac's expertise in question IMHO. ANyways, he repeated all the tests, and added more including genetic testing. Below are the results. He now says he is sure I have celiac but won't give me the diagnosis unless I get a biopsy to confirm. I asked, "so what else could the tests mean?" and he said, " I'm sure you have celiac, but I need the bipsy before I impose this lifelong diet on you " My insurance is not very good and it will cost me over $1000 to have this done, which is steep for me at the moment. I know that it is a personal choice and I am not looking for any medical advice, but I want to know people's opinions on wether you guys think it is really necessary. All my tests seem to point to Celiac's direction and makes me wonder if maybe I should look for another doctor, or just start on the gluten-free diet, ( I've tried to lower my gluten consumption but still kept eating it to prepare for the endoscopy" ) Or wether I should get it done to establish a baseline. I worry that the exam will be a false positve, seeing how unacurate they can be, and also lowering gluten could maybe alter it ? Finally, if anyone knows a Dr in the Miami / Fort Lauderdale area that specializes in Celiac I would reallly appreciate it Sooo sorry this got soo long, but i appreciate any advice TEST RESULTS: TISSUE TRANSGLUTAMINASE IgA - 9 Ref: <4 TISSUE TRANSGLUTAMINASE IgG - 15 Ref: <6 GLIADIN (DEAMIDATED) IgA - 21 Ref: <20 GLIADIN (DEAMIDATED) IgG - 38 Ref: <20 ENDOMYSIAL ANTIBODY SCR AMD (IGA) W/REFL TO TITER Positive ENDOMYSIAL ANTIBODY AMD TITER - 1:5 Ref: <1:5 IMMUNOGLOBULIN A: 135 Ref: 81-463 HLA TYPING FOR CELAIC DISEASE: •HLA DQ2: POSITIVE •HLA DQ8: NEGATIVE •HLA VARIANTS DETECTED: HLA DQA1 : 02 HLA DQA1 : 05 HLA DQB1 : 0202 HLA DQB1 : 0301
  14. I'll try to give a brief history before I ask my question to give some context. About two and a half years ago I noticed myself feeling "unusual" after eating meals, particularly lunch. I would nearly faint or my vision quickly black out over a second or two after standing in particular that sent me to my primary care, thinking I had developed orthostatic hypotension at only 29 years old. Ran MRI and CT of my brain, and MRA of my carotids, did some labs, and all was well so he pretty much wrote me off. A few months later and the left side of my body from face to toes would feel weak and burn (but without actual weakness) in sudden bouts lasting a couple hours. Naturally I freaked out and went to the ER thinking in having a TIA, again at an unusually young age. Well everything was normal. This got worse and lasted longer, and when my foot began to get "floppy", I sought out a neurologist. He did some basic labs which were normal and an EMG that was borderline and thought I had CIDP. I sought a second opinion with a university neurology department, had a lumbar puncture and MS protocol MRI including down my spine, all normal, told I had idiopathic small fiber naturopathy. Sought a third opinion (now just over two years have elapsed since seeing my PCP due to long follow-up intervals) from a neurologist that's double board certified in this area, did a thorough lab workup, and DGP IgG was very high (otherwise the celiac panel was normal), and everything else under the sun was normal. He said "looks like you got celiac disease. Better clean out your pantry." By this time I thought I was losing my mind, my whole body would feel like hellfire for hours a day and my feet flopped and my hands dropped things randomly. After about a week of a gluten free diet the burning was 75% better. I accidentally ate a chik-fil-a sandwich driving home late 3 weeks into it, not thinking until after I ate it. My gut felt like something was ripping it open and my body burned for 5 straight days. Never forgot again. Also pretty much confirmed the diagnosis since I'm still waiting on my upper endoscopy. So the question is this: do those of you with celiac neuropathy tend to have random sudden onset of numb or weak sensation on the whole of one side of your body, that switches sides, even on the same day? Lately my cheek around my left side of the lip and my left side of my tongue got numb too. I ask my neurologist these things whenever I follow-up and his answer is always "small fiber neuropathy causes all kinds of weird symptoms". I know what peripheral neuropathy is supposed to present as, but these autoimmune neuropathies don't seem to follow any rules. By the way, the burning and orthostatic hypotension are pretty much gone now on a gluten free diet for 5 months. The feet ate still floppy though.
  15. I was wondering if someone can help me understand my results. I got wishy washy responses from two different doctors and I am still pretty confused. I attached an image of my results, but in case you aren't able to view it, my Gliadin IgA is high, but everything else seems to be in low and in normal range. Anyone know what this means? At the time of this test, I was on a pretty low to no-gluten diet. I'd appreciate any insight you all can provide!
  16. I'll try to keep this short. My daughter has always been in the lower percentile on weight since she was about 1 years old. She was born a healthy size but the first week we had her, we had to return to the hospital and have her stay under some UV lights because of Jaundice. She's always been a picky eater, and she always wants to drink something instead of eat. I started to take notice of her stool. Even as a baby her stool was always a light color, almost off-white or pale yellow. It was runny that way, or even perfectly formed it was pale and yellow. My wife didn't really see anything to be concerned about. When she turned three and she continued to be lower on the weight chart, and her stool consistently was this weird pale color, I basically convinced my wife to get a blood test done. Also, our child's behavior was incredibly bad. She had mood swings, tantrums, uncontrollable crying for no reason. It was hell. After the test, she tested TTG IGA over 100, which was almost a confirmation of Celiac. Relief, we finally figured out the issue. We quickly switched her to a gluten free diet and she started to see minimal improvements, then sometimes she would have a normal stool (brown, healthy) and she seemed better, but then as if for no reason she would go right back to having weird mood and her stool went back to being yellow and pale. She's almost 4 years old now and she's been "Gluten free" since October of 2017. She's had maybe a week of improvement but she continues to have symptoms of pale stool, gas, irritability, poor sleep, attitude, tantrums, bad behavior etc. She never once complains that her tummy hurts, but she still doesn't like to eat. We monitor what food we give her, but I'm starting to worry that there is something else going on. She doesn't have jaundice, it's very clear that she doesn't. Her eyes are bright white and her skin is normal, her urine is clear to yellow. She has tons of energy and is happy for the most part, but she is prone to wild mood swings and is very defiant. She is also very smart and learns very quickly, but something is gnawing at the back of my head that something is very wrong with her and I can't sleep well at night. Basically I just want to know if there are any other people out there that suffer with this or have a child with this that see this kind of "relapse" in symptoms even after going gluten free. We even eliminated dairy in fear that it was also causing issues and she continues to have problems. We make her food every day and avoid cross contamination and it doesn't seem to make a difference. Maybe it's the products we're feeding her? The gluten free bread or Vans waffles? Maple syrup? Peanut butter?
  17. To Forum Members, I recently was doing research in PubMed about low stomach acid and came across intriguing old research that details it's presence in/with a Celiac and DH diagnosis. see this link https://www.ncbi.nlm.nih.gov/pubmed/3992169 Here is the abstract in it's entirety. Scand J Gastroenterol. 1985 Mar;20(2):133-40. Gastric morphology and function in dermatitis herpetiformis and in coeliac disease. Gillberg R, Kastrup W, Mobacken H, Stockbrügger R, Ahren C. Abstract "Gastric acid secretory capacity was evaluated in 116 patients with dermatitis herpetiformis by means of the pentagastrin test. Endoscopic gastric mucosal biopsy specimens were obtained from both the body and the antrum in 90 of them. Forty-eight patients (41%) had a maximal acid output less than 10 mmol/h, and 30 of them (26%) were achlorhydric. The frequency of achlorhydria increased with age, and 27 out of 58 patients (47%) more than 50 years old were achlorhydric. Antrum-sparing chronic atrophic gastritis was present in 92% of the achlorhydric patients, and hypergastrinaemia and serum parietal cell antibodies were found in most of them. The prevalence of chronic gastritis of the body and of the antrum increased with age. There was no correlation between atrophic gastritis or achlorhydria and small-intestinal villous atrophy, the results of the D-xylose test, and blood folate and serum zinc determinations. The transferrin saturation index was lower in patients with achlorhydria. The frequency of achlorhydria was significantly higher in patients with dermatitis herpetiformis than in 69 patients with coeliac disease." The question is what does it mean? I see the high association between no stomach acid and DH as causal. (triggering) at 90+ percent a direct association. But the relatively high association of Low Stomach could only be casual (associated with) but not definitely triggering but possibly causing someone with Low/No stomach acid to be diagnosed as Celiac/NCGS patients instead. This research being 30+ years old it can be easily over looked. I have found treating my Low Stomach acid helped my GI problems. If it is an Esophageal pH Test could confirm your stomach acid levels. https://www.verywell.com/acid-reflux-ph-test-1742254 Is this definitive research in your mind that indeed no stomach acid is triggering this immune reaction. I was not expecting to find previous research that studied this topic. More Recent research on PPIs indicate low stomach caused by the use of PPIs can/could trigger a Celiac diagnosis. see this article about this topic. Does/Is low or even No stomach acid being confused for Celiac disease today? I would love to hear your thoughts? I share this research in the hope that it will rediscovered again and studied again to see if it can replicated in the hopes that treating one's Low/No stomach acid might help others. This does not mean you yourself will have low stomach acid . . but you won't know if you don't test for it. I think with this high association in those who have received a Celiac diagnosis further testing to rule low/no stomach acid is warranted. Share your thoughts, opinion, ideas and feedback. I start this thread to kick start your thinking? And to invite honest inquiry as the role stomach acid plays in GI health. It is (low stomach/no stomach) is known to be linked/occur in chronic gastritis so it seems only logical it would at least be casual in Celiac/NCGS patient. See this link on Chronic Gastritis and the prevalence of Low/No stomach in chronic gastritis. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4673514/ they estimate quoting "One may estimate that more than half of the world population have this disease in some degree and extent, indicating that even many hundreds of millions of people worldwide may have chronic gastritis in a form or other." What if the 1/3 of the population that might develop NCGS or celiac disease is just another clinical presentation of chronic gastritis? I think it what the research says to me . . triggered by either low or no stomach acid? Your thoughts and comments are encouraged but I found treating my low stomach acid helped my chronic gastritis. 2 Timothy 2:7 Please Consider what this research says and may the Lord lead you on your continued journey. I hope this research jogs your thinking. I know it confirmed mine . . but I am open to being wrong. A man/woman who corrects me is my friend. I hope this newly rediscovered research helps your thinking about how low/no stomach acid could be causing some of your GI problems forum members/friends. We are all trying to find something that works for us and why we participate to share on this forum to help others with the same help knowledge we have gained on our way/journey God being our help. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (starfish), by the comfort wherewith we ourselves are comforted of God.” Posterboy by the grace of God,
  18. WHAT IS CELIAC DISEASE? Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems. Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases. Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. CLASSIC CELIAC DISEASE SYMPTOMS Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others. LESS OBVIOUS SYMPTOMS Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important. NO SYMPTOMS Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. CELIAC DISEASE VS. GLUTEN INTOLERANCE Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS) Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there. There are four main differences between celiac disease and non-celiac gluten sensitivity: No Hereditary Link in NCGS Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)? IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS. To add more confusion, many cases of IBS are, in fact, celiac disease in disguise. That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. Crohn’s Disease and celiac disease share many common symptoms, though causes are different. In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis. Crohn’s treatment consists of changes to diet and possible surgery. Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection. Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS Diagnosis of celiac disease can be difficult. Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult. Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis. TESTING There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis. Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products. BIOPSY Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide. WHY A GLUTEN-FREE DIET? Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years. For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease. WHAT ABOUT ENZYMES, VACCINES, ETC.? There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease. There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes. Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement. ASSOCIATED DISEASES The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions: Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include: Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers: Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES: Celiac Disease Center, Columbia University Gluten Intolerance Group National Institutes of Health U.S. National Library of Medicine Mayo Clinic University of Chicago Celiac Disease Center
  19. Hello all! I'm fairly new to this community. Although I've been reading many posts on here for a while, this is only my second posting! I am pre-diagnosis, although I am almost 100% certain that I am at least gluten sensitive. Due to time, I'll make another post later on detailing more of my symptoms and my experiences on this crazy journey. Currently on a gluten-free diet because it is not worth the suffering (cheated enough times that now just looking at a cookie makes my everything hurt). This question is more towards anybody who has a good understanding of genes, alleles, etc. I have finally coughed up the dough to get genetic testing done, and my alleles are HLA-DQ 8 and HLA-DQ 3. To my very elementary understanding, HLA-DQ 8 is one of the two HLA genes associated with the development of celiac disease. There is also some controversial and currently unreplicated data suggesting that HLA-DQ 3 is associated with gluten sensitivity. Regardless of that controversial piece, it is also my understanding that HLA-DQ 8 is a "form" of the HLA-3 allele. If HLA-DQ 8 is a form of HLA-DQ 3, what is the difference between HLA-DQ 3 and HLA-DQ 8, that I have both of them? In other words, what makes it HLA-DQ 3, instead of one of its sub-categories or forms? Not sure if the question makes sense, or if anybody knows! Thanks for any info!!
  20. Celiac Coach?

    I was speaking with someone, and thinking this could be very helpful for newly diagnosed people. Especially if it's for your child. To figure out what is OK in your kitchen, how to read labels at the supermarket, how to eat at restaurants, kid's parties, schools, travel, etc. I hope the poll works - curious to see what people think. Thanks!!
  21. Hi guys, this is a question specifically for those living in the UK who are under the NHS. If any of you have read my previous posts on iga deficiency you'll know i've been finding it difficult trying to get blood tests to check if i have a deficiency or not. I was just wondering if anyone in the UK, but also if anyone has had issues regarding this issue internationally your experiences are welcome too. I ask people within the UK, because I am being told by different doctors that IGA deficiency isn't available on NHS, but that it could be, and then i have also been told that depending on the results of my celiac panel they would test further for iga deficency.. But surely if you have a false negative celiac panel (which i have many times) then you should check for an iga deficiency or at least could be worth checking for that? But its so hard to get any doctor to listen properly. If its available on NHS, i'd like to try my hardest to get it done on the NHS as I am currently out of work because of how chronic my digestive issues are now. Maybe i've got my wires crossed on iga deficiency in which case if anyone has any links, or would like to correct me with some facts, that would be greatly appreciated. I ask because I have booked another appointment to see the fourth doctor within a month, and would like some idea on how to approach it and to know if i can request an iga deficiency blood test ( i believe its Igg blood test?) Any help appreciated, the sooner the better! thanks guys
  22. In Part 1 I mentioned many of the GI issues diseases I think this might help and have seen it help. But most people only think of an “official diagnosis” and not co-morbidities in the same person. Treating your Vitamin deficiency lets you treat your co-morbidities. It is known as a 2ndary diagnosis in Sjorgen’s diesease as Pellagra has also been diagnosed with SJD for example. https://www.researchgate.net/publication/263324686_Pellagra_in_a_patient_with_primary_Sjogren's_syndrome Despite the conditions responding to Niacin(amide) --- Pellagra was still considered the 2ndary disease. This is more common than people realize often. You hear often “you” the average person doesn’t need to take a Vitamin but if you are reading this blog you are not average. People with Celiac disease and other GI problems are known to be low in a range of Vitamins. See this link for appropriate supplementation with a celiac diagnosis. https://www.ncbi.nlm.nih.gov/pubmed/24195595 Niacin(amide) was not mentioned in this study but should be added/studied since B-Vitamins are known to help Celiac’s. At 58% co-morbidity of Pellagra in Celiac’s there is better than 50/50 chance your symptom’s can be in remission in 6 months? If you are ONE of the many Pellagrins being diagnosed as Celiac disease today. Gluten free works actually summarizes this topic well. https://glutenfreeworks.com/blog/2017/07/18/niacin-vitamin-b3-deficiency-in-celiac-disease/ But still people are afraid to take a water soluble Vitamin that is known to help digestion problems. Are you Afraid of a Vitamin? You needn’t bee! Praise bee to God! I must always say *** 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 it helped me. And I think it can help you too and why I share for “Sharing is Caring”. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God, *****Addendum I mean this to be some kind of “Opus”. My story! Yours might be different. Now the onus is on you to try? What you can do is urge your doctor to have you tested for Pellagra (though I doubt very seriously you will test low). See this posterboy blog post that explains the difference in Primary and 2ndary Pellagra. https://www.celiac.com/gluten-free/blogs/entry/2119-a-devastating-delay-celiac-pellagra-and-the-implementation-clinical-gap-in-recognizing-one-forover-the-other-which-twin-to-choosesave/ Anyone who eats a protein rich diet will not test low enough to be diagnosed as a Pellagrin at least in the Western world. You have bee near death, an alcoholic or homeless to be diagnosed as a Pellagrin today or maybe an alcoholic homeless fellow who has severe Psorsias. . . might test positive for Pellagra if they knew to test for it. And why it usually shows up in war torn areas today because protein is limited in war. (and Alcoholics) as seen in this House MD episode on Celiacs called Forever because Alcoholics have poor diets and thus low in protein in their diets. https://www.bing.com/videos/search?q=house+season+2+episode+22+forever+daily+motion&view=detail&mid=C2050653028DE02DBDE6C2050653028DE02DBDE6&FORM=VIRE What needs to be done to change this oft over looked fact is a study with Niacin to see if it helps Celiac’s. See here where other B-Vitamins were shown to help Celiac’s. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html this study was only as to how it (B-Vitamin supplementation) effects homeocysteine levels in people diagnosed with Celiac disease. Not if taking a B-complex or specifically the Niacinamide version of Niacin could help treat or alleviate gluten antibodies in Celiacs with cross contamination. A double blind study would have to be done but could be effectively tested with some time and effort. This is only antidotal information with no confirmed medical research unless someone else takes the ball and runs with it. Plumbago you come to mind. But it doesn’t matter who it is. The time has come to test this hypothesis to see if it is a “working theory”. I only know it helped me and helps other I give the Vitamin B-3 as Niacinamide to . . . up to and including people who have had an official NCGS diagnosis. Which tells’ me it would help other Celiac’s too if they would try it (Niaciamide) 3/day for 6 months. Note: No Follow up is done at two years to see if they are in remission after cross contamination or if they have adhered strictly to a gluten free diet. But their clinical outcomes (symptom relief) appear to greatly improve at 6 months including re-introducing problem foods such as dairy which they now tolerate without GI distress. I have tried to be a witness to what I have experienced. (I speak as a man) that no other person Pellagin being diagnosed as Celiac disease instead would be in the dark about this fact. Romans 10:13-15 King James Version (KJV) 13 For whosoever shall call upon the name of the Lord shall be saved. 14 How then shall they call on him in whom they have not believed? and how shall they believe in him of whom they have not heard? and how shall they hear without a preacher? 15 And how shall they preach, except they be sent? as it is written, How beautiful are the feet of them that preach the gospel of peace, and bring glad tidings of good things! When you get the right/correct diagnosis (if Pellagra is correct/parent diagnosis) it’s unruly child Celiac will get better. See this posterboy celiac.com blog post. https://www.celiac.com/gluten-free/blogs/entry/2124-is-non-celiac-gluten-sensitivity-andor-celiac-disease-really-pellagra-in-disguise-in-the-21st-century-a-thoughtful-review-of-whether-to-supplement-or-to-not-supplement-by-the-posterboy-of-both-celiac-and-pellagra-a-fellow-sufferers-journey-to-peace/ I only know it is a devastating delay. To ignore one disease at the expense of the other. https://www.celiac.com/gluten-free/blogs/entry/2119-a-devastating-delay-celiac-pellagra-and-the-implementation-clinical-gap-in-recognizing-one-forover-the-other-which-twin-to-choosesave/ quoting the celiac posterboy again “A differential diagnosis is one of the best standard of medicine rarely practiced today and how specialists decide between competing diseases like UC or Chron’s or IBS or Celiac Disease and if I am right Co-Morbid Pellagra now forgotten for 75+ years since the “War on Pellagra” is now over according to medical professionals’ but sadly the battle rages on for at least for the potential 3 Million American’s who are now being diagnosed as Celiac disease today instead.” AS someone who has had BOTH Celiac and Pellagra. I can tell you that it can be difficult to tell them apart sometimes (most times). What we fail to understand often with any diagnosis there is continuum of disease/symptoms. Yet we think of them as separate diseases Right? I have unwittingly become the Celiac and Pellagra Posterboy . Learn from my mistakes! I have made too many (mistakes) to count. Take as much honey (knowledge) as you can from my mistakes so bad (lack of knowledge) health will not sting your quality of life. So let’s say. Today they find a miraculous cure for Celiac disease or NCGS. . . it would take on average 17 years for doctor’s in Clinical settings to apply these technique’s to eradicate new Celiac cases/diagnosis’s from occurring. Now in this hypothetical case (which doesn’t exist yet or does IT? As a differential diagnosis the answer is a definite YES) it would take another 17 years on average for doctors if they knew today that Pellagra (which they don’t) can mimic Celiac disease in a Clinical setting. But one does exist (it is not hypothetical) – a cure for Pellagra exists today. It has in fact existed for 100+ years and still doctors don’t recognize it today. I share/write these posterboy blog post’s so that others might not have to suffer the same things’ I have again in the future someday. . . I pray soon! Now that you have the knowledge of my experience what will you do with it? Every hour/patient/person matters. And why I have tried diligently to educate other Celiac’s of this maddening fact. All those who have ears to hear may they listen! Feel free to read all my posterboy blog post’s if this pique’s your curiosity/interest but there is only so much in a/one blog post than can be explained but it really Is not necessary or visit the website/blog in my profile where I have told the same story hundreds of time that ONE fellow sufferer like myself may/might be helped by the same wisdom, I found God being my help, when I learned Pellagra and Celiac disease are Siamese twins and separating one (supplementing one to death) will kill the other (cause the other to go into remission). And I believe you can too! Praise bee to God! 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them (fellow sufferer) which are in any trouble, by the comfort wherewith we ourselves are comforted of God.” Posterboy by the Grace of God, EPILOGUE A simple self-test is to prove this works for you and your friends. It is to take Niacin as NIACINAMIDE usually one 300 count bottle is enough for a 3month supply. I call it the NIACINAMIDE CHALLENGE. You and a friend/family member begin taking it at the same rate. Whatever that rate is – is fine. But it needs to be at the same rate – consistently. 2/day or 3/day works (i.e., with each meal) works for most people. If so two things will happen for you/them (if Pellagra is indeed Co-Morbid presenting as Celiac Disease) then you/they will begin BURPING for the first time in years and years (if at all) and their stool will begin to SINK to the bottom of the bowl. ***Not twenty minutes after eating something with bloating or burping with carbonation/soda or beer etc. but BURPING 2 hours after a meal without the bloating you used to have. It will start slowly and then be your new normal. The burping within a month of each other will match up with your stool beginning to SINK where it did not before (or it did for me). A witness of two is “true”. Usually it takes 3 to 4 months taking the Niacinamide 1/day to notice these results Usually it takes 2 to 3 months taking the Niacinamide 2/day to notice these results Usually it takes 6 weeks to 2 months taking the Niacinamide 3/day to notice these results If these are your results then together ya’ll have completed a self-test to confirm Pellagra was causing your GI problems. If it is the Vitamin making the difference your GI symptoms’ will improve. It is as simple as that. I would recommend a 6 months regimen for most people. Two 300 count bottles equal $50 Dollars worth of a B-Vitamin. As I called this an open a letter to the many GI sufferers etc. It doesn’t matter what part phase (spectrum) of the disease you are in it will (should) get better. GERD, IBS, UC, NCGS or even Celiac disease if (low Niacin(amide) was the cause) you will have a cause and effect reaction. If you had Pellagra Co-Morbid and your GI improves with supplementation. This almost always works if you are not now taking PPI’s like Nexium or Prilosec etc. . . . If you are taking PPI’s then your “Way Back” may be a little longer but the trip back is the same. ****Again this is not medical advice but it is too cheap not to try and see if it works for you . . . I have found it work for others. ****Note: I am only reporting what medical journals have concluded. It is just not well understood today one disease is being diagnosed as the other because it can take a generation for this knowledge to filter down to the clinical level. Again a “Witness of Two” – you Both having the same reaction to the Vitamin proves Pellagra was causing your symptom’s and the doctor’s don’t recognize it today in a Clinical setting. The Journal of Psychosomatics says its well and I can’t say it better. https://www.sciencedirect.com/science/article/pii/S003331821070668X?via%3Dihub quoting the abstract Pellagra: An Old Enemy of Timeless Importance Author links open overlay panelThomas M.BrownM.D. Show more https://doi.org/10.1016/S0033-3182(10)70668-XGet rights and content Background “In the United States, pellagra is infrequently reported. Yet this disorder does occur among malnourished persons. Objective The author seeks to clarify diagnosis and treatment. Method The author describes various presentations and effects of this disorder. Results Knowledge of classic and atypical presentations can assist in making the diagnosis. The author presents two cases of pellagra that exemplify the classic and atypical presentations. Conclusion The typically robust response of the disorder to physiologic doses of niacin can assist in confirming the 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 am your witness people, have and do get better using this technique realizing a mistake has been made in your/their diagnosis. It is the time honored medical “Second Opinion” AKA a Differential Diagnosis. Isn’t it about time to see if supplementing with Niacinamide will help your co-morbid Pellagra symptom’s to see if your Celiac disease diagnosis was arrived at in error – no matter well intended has keep you from getting better from Pellagra. Quoting an old friend J. Dan Gill when he talks about the power of Truth to Free us! Where/when he (Dan) talks about the difference between Truth and Error. “The Truth is Always Better The Truth, whatever it is, Is always better than error, Whatever it is.” By J. Dan Gill The truth is when an error/mistake is made. Admit it and move on to the correct/better diagnosis so you can then get better! And we have known how to treat Pellagra for a 100+ years but this generation having not seen it in their lifetimes have forgot how to diagnose it! When they see it in its earliest forms. .. they do not recognize it in a clinical setting anymore! Those that have ears to hear? Listen! You can get better from Co-morbid Pellagra. SADLY! Few listen. But some (Celiac’s) have heard (listened to) the good news that Pellagra is reversible and have gotten better. Don’t be the Last! ****Again this is not medical advice but it is too easy, simple and cheap not too try and see if it works for you too!. . . I have found it works for others. . . not already taking a Proton Pump Inhibitor (PPIs) like Nexium or Prilosec etc . . . Praise bee to God! To those who have listened and got better! Just trying to help those still suffering (I believe) unnecessarily. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.” Posterboy by the Grace of God, 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.
  23. Hello, I don't know if my topic fits better here, but I didn't know where to categorize it. In 2011 I've been diagnosed with celiac disease and since then I've been on a very strict diet, finally starting to feel better in 2014. In the meanwhile, I also had a laparoscopic surgery for 3rd stage endometriosis, and last year I was diagnosed with IBS, lactose intolerance, as well as insulin resistance and systemic candidiasis. Since last month I'm also on therapy for IBD (the doctors are suspecting microscopic colitis, but colonoscopies confirmed atypical inflammation only). Therapy for Candida (Diflucan) didn't help, and I've been recommended to adapt my diet. I was wondering if anyone has experience in dealing with other diets, in particular for Candida? Most of the gluten-free products are starchy, so what do you actually eat? Foods usually recommended for this, like leafy vegetables as well as spices, are impossible for me to eat - actually, I feel sometimes like most of the foods make me feel even worse and I keep losing weight. I hope someone can share their experience, thank you!
  24. Hi all! I have fatigue bloating and gas with stomach pain and sometimes diarrhea for a couple of years until I figured it might be gluten related. No matter how much I sleep I am exhausted. I have “chicken “ skin for years and feel foggy minded. I recently tested positive for the two or more Celiac genes hla dqa1 05 and DQ2.2. Also higher risk for autoimmune disorders. My mom also has gluten intolerance. Been as gluten free as possible with some relief but fatigue and sinus headaches all the time and some bloating remains. I know with celiac testing you need t eat gluten before you get tested. I’m just worried that that might trigger for me to get more sick. Does anyone else feel this way in regards to testing?
  25. So I posted back in early February2017 about having some extreme brain fog, light headed, vision problems amongst other symptoms. I thought it was because I had started a strict gluten-free diet again (after eating carelessly for a couple months and being a celiac) and was possibly have gluten withdrawals or even cross contamination some how in my diet. I literally went to 3 different MD’s and even my Optometrist. And they all told me I needed to eat more and get better “quality” sleep. After a year of strict sleeping/eating schedules the symptoms never went away and it felt like this constant drunk state of going about my day. Finally I switched to a Holistic Doctor (I think that’s what type of Doctor he is). Anyways after the first appointment he pretty much knew what I had and sent my home with two take home tests. One for SIBO, the other for Adrenal Fatigue. I tested positive for both with extremely solid results. I always told myself I’d come back on this forum to share my info if I ever figured out what was wrong with me because no one seemed to know exactly what was going on and looked at me like I was some crazy lady making up stuff. I am one week on the Rx. and already feel so much better. My ability to communicate and focus in conversations is much better. I literally felt buzzed when talking before and it took way too much effort to really even stay on topic with people. And even if I did stay on topic I couldn’t remember hardly what was discussed. As of right now my vision is still slightly off, even though my optometrist said I have perfect vision. It’s more so like the room has a hard time catching up with itself when I redirect my focus. But my energy is up and I can only assume my results will keep getting better with each passing day. I hope this helps someone who’s trying to figure out what’s going on with themselves.