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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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jebby last won the day on October 24 2014

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  1. Your symptoms sound a lot like mast cell activation syndrome, which is my celiac "tag along" diagnosis which led me to continue to be quite ill after feeling better on the gluten-free diet. If you've ever had to submit a 24 hour urine collection for methylhistamine and urinary prostaglandins, which had to be kept chilled, then you've been tested for it. If you haven't, then chances are that your doctor(s) have not thought about it. Please take the time to read about it and advocate for testing. Good luck!
  2. Icelandgirl, It will get better, I promise! I remember hitting a point about 2 years ago when I seriously wished that I would never have to eat anything again because I felt like I was getting sick from everything. Your kids will be okay. None of my kids seem to even remember that I was in such a bad place a few years ago. As for bread, have you ever come across socca bread? Jess
  3. I am in Green Bay and it's a sad state of affairs up here, Celiac-Wise. I agree that you should head to U Chicago or Mayo, if you possiby can.
  4. Hi Bekkaz, I am in the 1-2% of celiacs who are DQ2/DQ8 negative and so is my mom. We are DQ7/DQ7. We are Sicilian. My TTG IgA and Endomysial IgA were very, very high before I was diagnosed though. There was a poster at the International Celiac Disease Synposium in Sept 2013 showing that 9% of Brazilian celiacs are DQ2/DQ8 negative, just some food for thought. Were you gluten free when your celiac antibody panels and endoscopies were done? J
  5. Hi nvsmom, I haven't been on here much, but I was in a similar situation to you about 2 years ago with lingering symptoms and they ended up being due to mast cell activation syndrome. I actually wrote a similar post looking for help. Like you I have both celiac and thyroid disease. I haven't had a chance to look through all the replies on my thread, but it looks like Irish Heart and Gotta Ski have shared some info about MCAS and histamine too... Since starting on treatment for MCAS almost all of my lingering symptoms, that I had initially attributed to celiac disease, have disappeared. Jess
  6. The current “gold standard” tests for celiac disease include testing for celiac antibodies in patients’ blood and performing an endoscopy to obtain small bowel biopsies. In order for these tests to be accurate, one has to be eating gluten up until the time of testing. If a patient is already on the gluten-free diet when these tests are done, the diagnosis of celiac disease can easily be missed. I’ve encountered many people who have decided that they’d like to be tested for celiac disease after starting on the gluten-free diet. Per the celiac disease experts, a “gluten challenge” must be performed in these cases to assist in the diagnosis of celiac disease. A gluten challenge requires eating foods containing gluten for a prescribed period of time prior to an endoscopy and/or blood testing for celiac disease. The length of time and amount of gluten that need to be consumed for a gluten challenge vary from source to source. Here are some examples of different recommendations for a gluten challenge (current as of July 5, 2014): University of Chicago Celiac Disease Center: “For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge. Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy.” Celiac Disease Center at Columbia University: “In individuals who are willing to further pursue the question of whether they have celiac disease, we will advise a gluten challenge. This consists of ingesting at least 4 slices of bread a day for one to three months followed by an endoscopy and biopsy. There is no evidence that following antibody tests is beneficial in establishing a diagnosis of celiac disease because these tests are not sensitive in this setting.” Celiac Disease Center at Beth Israel Deaconess Medical Center: “Gluten is reintroduced into the diet and after a period of time (ideally 6 to 8 weeks if the challenge can be tolerated for that long) blood tests and an intestinal biopsy are performed. If the gluten challenge is not tolerable for the full 8-week period blood tests and biopsy can be performed sooner but this can lead to a false negative result.” In addition, Dr. Leffler and colleagues published a paper in 2013 showing that the majority of patients with celiac disease will test positive after eating >3g gluten/day for 2 weeks. A typical piece of wheat bread contains about 5g of gluten. Despite all of the confusion, there is hope on the horizon for a shorter gluten challenge in the future. Researchers at the Walter and Eliza Hall Institute in Australia have been developing a blood test that measures gluten-reactive T cells, immune cells that increase in response to gluten in those with celiac disease, via cytokine release assays. In a pilot study published earlier this year, patients with celiac disease had a significant jump in blood levels of gluten-responsive T cells, compared to controls, after only 3 days of consuming gluten. Per Dr. Jason Tye-Din, one of the researchers working on this test, “We hope that larger studies can validate these findings and establish its role in the diagnosis of celiac disease.” For the sake of my gluten-light kids, and everyone else who is in a similar situation in regards to diagnosis, I hope he is right. A press release regarding the study can be found here. Out of curiosity, have any of you been diagnosed with celiac after doing a gluten challenge? If so, do you remember how much gluten you had to eat and for how long prior to testing? Full reference: Ontiveros N, Tye-Din JA, Hardy MY, Anderson RP. Ex-vivo whole blood secretion of interferon (IFN)-γ and IFN-γ-inducible protein-10 measured by enzyme-linked immunosorbent assay are as sensitive as IFN-γ enzyme-linked immunospot for the detection of gluten-reactive T cells in human leucocyte antigen (HLA)-DQ2·5(+) -associated coeliac disease. Clin Exp Immunol. 2014 Feb;175(2):305-15.[/font][/color]
  7. I first came across the term “celiac disease autoimmunity” a few weeks ago as I read summaries of the article “Risk of Pediatric Celiac Disease According to HLA Haplotype and Country” that was published in the July 3, 2014 issue of the New England Journal of Medicine(NEJM). Based on my reading and interpretation of the article, it seems that celiac disease autoimmunity is interchangeable with the more commonly used term “potential celiac disease.” Both are used to describe cases in which people have abnormally high levels of celiac antibodies (TTG IgA) in their blood but their small intestinal biopsies do not show changes consistent with celiac disease. In other words, there is an autoimmune response to gluten that has yet to cause destruction to the villi of the small intestine. For the sake of this study, the subjects had to have abnormally high TTG IgA levels on 2 separate occasions, at least 3 months apart, to be labeled as having celiac disease autoimmunity. The results published in NEJM come from the multinational TEDDY study, which is prospectively following a large cohort of children who are at genetically at risk of developing Type 1 (juvenile) diabetes mellitus. Since some children with both Type 1 diabetes and celiac disease share the same “at-risk” genes, HLA-DQ2 and DQ8, the researchers have also been able to follow a large group of genetically-susceptible children for the development of celiac disease. The study is ongoing and subjects are being followed for the development of both diabetes and celiac disease from infancy until age 15. This is one of many papers that have already come from the TEDDY study. Thus far, 6403 study subjects have been found to have genes that predispose to celiac disease. Subjects have been placed into 4 risk groups: -HLA DQ2/HLA DQ2 (homozygous for DQ2) -HLA DQ2/HLA DQ8 -HLA DQ8/HLA DQ8 (homozygous for DQ8) -HLA DQ8/HLA DQ4 As you can see, the first 3 groups of kids all have 2 copies of celiac-risk genes, and the 4thgroup has only one copy of DQ8, so only one gene associated with celiac disease. Subjects’ testing for celiac disease autoimmunity started at age 24 months and has been repeated every year. In all, 786 of the 6403 (11%) at risk subjects were found to have celiac disease autoimmunity (elevated blood TTG IgA antibodies at least twice) at time of data analysis Overall, 25% of the children with celiac disease autoimmunity had a diagnosis of celiac disease by age 3. The researchers broke down the risk of both celiac disease autoimmunity and celiac disease by genes and found the following risks by age 5: Celiac Disease Autoimmunity Risk in Children with Celiac Genes by Age 5: HLA DQ2/HLA DQ2 (homozygous for DQ2): 26% HLA DQ2/HLA DQ8: 11% HLA DQ8/HLA DQ8 (homozygous for DQ8): 8% HLA DQ8/HLA DQ4: 3% Celiac Disease Risk in Children with Celiac Genes by Age 5: HLA DQ2/HLA DQ2 (homozygous for DQ2): 11% HLA DQ2/HLA DQ8: 3% HLA DQ8/HLA DQ8 (homozygous for DQ8): 3% HLA DQ8/HLA DQ4: less than 1% Children with both celiac disease and celiac disease autoimmunity were found to be at a higher risk of having diabetes than the general population (1% for celiac disease autoimmunity and 2% for celiac disease v. 0.3% risk for general U.S. population). In summary, in this large study, over 25% of children with the DQ2/DQ2 genotype were found to have celiac disease autoimmunity by age 5 and greater than 10% with DQ2/DQ2 were diagnosed with celiac disease by age 5. Over half of these children had no symptoms of celiac disease, therefore, there is a good chance that many of these diagnoses would have been missed if these children had not been subjects in this study. After reading this article I am a much stronger proponent of genetic testing of children at risk for celiac disease, if possible. And, as my husband and I both carry genes associated with celiac disease, I feel much less guilty for making my own kids get screened for celiac disease, via TTG IgA blood testing, every 2 years. Lastly, I feel much more at peace for making my at-risk youngest go through having an endoscopy and small bowel biopsy earlier this summer. The statistics from this study are definitely eye-opening. Reference: Liu E, Lee HS, Aronsson CA, et al. TEDDY Study Group. Risk of pediatric celiac disease according to HLA haplotype and country. N Engl J Med. 2014 Jul 3;371(1):42-9. Also, if you are a research geek like I am, here are some other interesting findings from the TEDDY study thus far (found via a Pubmed.gov search): The HLA-DQ2/2 genotype may predispose to obesity among 2-4-year-old children. Between 15% and 20% of the infants in the study were introduced to solid foods before the age of 4 months. The median age of early-onset diabetes is at 2.3 years. 33% of the subjects with an early diagnosis of diabetes had no symptoms of diabetes. Findings have not supported the presence of viremia (recent viral infection) around the time of seroconversion in young children with rapid-onset type 1 diabetes.
  8. There is a well-established relationship between celiac disease (and non-celiac gluten sensitivity) and the development of neurologic problems in adults. According to Dr. Marios Hadjivassiliou, a neurologist in the UK who is one of the world’s experts in this area, up to 50% of adults with newly diagnosed celiac disease have signs or symptoms of neurological problems. I have personally experienced a peripheral neuropathy (nerve damage) as a result of celiac disease and it was my neuropathy that prompted me to start writing about my experiences in 2012. If you are interested in learning more about gluten-related neurologic problems in adults, I urge you to read Christine Boyd’s article “Gluten and Your Brain” in the April/May 2014 issue of Living Without Magazine. The article contains a wealth of information from experts, including Drs. Fasano and Hadjivassiliou. Although there is definitely a link between gluten-related disorders and nerve and brain problems in adults, much less in known about the neurologic signs and symptoms in children with gluten sensitivity. This may be in part due to a 2008 paper in the Journal of Pediatrics that concluded that neurologic problems in children with celiac disease are rare. I have personally interacted with many parents of children with both celiac disease and non-celiac gluten sensitivity who have had their children’s neurologic and behavioral symptoms improve on the gluten-free diet. In addition, in just the last few weeks, there have been several published case reports regarding gluten-induced neurologic problems in kids. If you are interested in learning about the case reports, I have summarized them below: The 1st case report is of a 15 year old girl with celiac disease who developed a peripheral neuropathy out of the blue that consisted of weakness and a pricking sensation in her legs. It was discovered that she had been accidentally eating biscuits that contained gluten for about 2 months prior to the neuropathy starting. Her neuropathic symptoms resolved when she stopped eating the non-gluten-free biscuits (see reference #3). The 2nd case report is of a 3 year old girl who developed an acute disseminated encephalomyelitis (brain inflammation) and white matter lesions that were visible on her brain MRI. After going on the gluten-free diet her neurological symptoms resolved and the white matter lesions stopped growing in size (see reference #4). The 3rd case report is of a 2 year old boy with epilepsy who continued to have seizures despite being on multiple seizure medications. He did not have any digestive symptoms, outside of canker sores in his mouth, but was found to carry one of the 2 main celiac genes (HLA-DQ8). Within 6 months of being on the gluten-free diet, his seizures improved, his EEG became normal, and he was able to be weaned off of all his seizure medications (see reference #5). According to Dr. Guandlini, the founder and medical director of The University of Chicago Celiac Disease Center, who wrote a recent review article about celiac disease in children, neurologic signs and symptoms of celiac disease in the pediatric population can include all of the following: cerebellar ataxia, recurring headaches, peripheral neuropathy, seizures, and psychiatric disorders, including anxiety, panic attacks, and depression. In writing and sharing this post I am not trying to state that all neurologic problems in kids are as a result of gluten, as this is clearly not the case. I am sharing this information in hopes that both celiac disease and non-celiac gluten sensitivity may be on both parents’ and doctors’ radars when neurologic signs and symptoms appear in kids, as well as to help prevent others from having a long delay in diagnosis like I did. Thank you for reading and please feel free to share your personal experiences in the comments section. References: Hadjivassiliou, M, Sanders, D, Grubewald, R, et al. Gluten sensitivity: from gut to brain. The Lancet. March 2010. 9: 318-330. Ruggieri M, Incorpora G, Polizzi A, et al. Low prevalence of neurologic and psychiatric manifestations in children with gluten sensitivity. J Pediatr. 2008 Feb; 152(2):244-9. Boskovic A, Stankovic I. Axonal and demyelinating polyneuropathy associated with celiac disease. Indian Pediatr. 2014 Apr 8; 51(4):311-2. Jorge R, Aguiar C, Espinheira C, et al. A pediatric case of gluten sensitivity with severe neurological presentation. Eur J Pediatr. 2014 May 13. [Epub ahead of print] Bruni O, Dosi C, Luchetti A, et al. An unusual case of drug-resistant epilepsy in a child with non-celiac gluten sensitivity. Seizure. 2014 Apr 18. pii: S1059-1311(14)00106-X. doi: 10.1016/j.seizure.2014.04.005. [Epub ahead of print]
  9. Hi JMG, I am glad that this helped you. Sometimes I have no idea if anyone is reading…I have some family members who get very ill from gluten but have tested negative for celiac disease.  They are all GF and I suspect that at least a few of them actually have celiac disease that was not picked up on testing.  All the best to you. This is a great website for advice, guidance, and support. Jess
  10. Back Up Food

    Hi, Zing Bars are gluten-free, soy free and dairy free. Can be ordered by the case on Amazon. I discovered them last year and they are my "go to" bar for traveling, working long shifts, etc. after getting tired of Larabars and Kind Bars.
  11. I think most of us have met people who have symptoms of celiac disease, but when tested, are told that their celiac antibody blood tests and biopsy results are negative (normal). Some of these people are labeled “gluten intolerant” or “gluten sensitive” by their doctors, others are told they may have “early” celiac disease, or “pre” celiac disease, and the rest are told that they have nothing wrong and are often advised to continue to eat gluten. Many continue to eat gluten and find themselves getting sicker and sicker, with an improvement or disappearance of symptoms when they go gluten-free. Then, when they go gluten-free, since they are “gluten intolerant” as opposed to having celiac disease, it is unclear how closely they need to be followed for vitamin deficiencies, the development of additional autoimmune disorders, and other problems that are associated with long-standing celiac disease. Whenever I hear that a person is “gluten intolerant” I wonder whether or not the diagnosis of celiac disease was actually missed. Celiac blood antibody testing can be unreliable in infants and toddlers, people who have a condition called serum IgA deficiency (occurs in up to 3% of celiacs), and when patients are tested after they have already started on the gluten-free diet. Likewise, endoscopies and biopsies are often done incorrectly which can lead to celiac-induced intestinal damage being missed. I recently read, with much interest, an article called, “Intestinal-mucosa anti-transglutaminase antibody assays to test for genetic gluten intolerance,” which was published this month by a group of celiac researchers in Italy. Although it’s a bit technical, I will do my best to summarize it for you. In this study, the gluten-intolerant subjects consisted of 78 pediatric patients who had symptoms of celiac disease but normal celiac antibodies (anti-TTG, also called TTG IgA) and normal small bowel biopsies. None of the subjects were IgA deficient. Of the 78 gluten intolerant subjects, 12 were found to have anti-TTG antibodies present in the tissue biopsies from their intestines–to clarify, anti-TTG antibodies were found in their intestines, but not in their blood. 3 of the 12 patients in this “gluten intolerant” group, with TTG antibodies localized to the intestine only, were started on a GFD diet and they all had improvement in symptoms and anemia after 24 months on the gluten-free diet. Of the 9 patients with anti-TTG antibodies in the intestines who were continued on a gluten-containing diet, 2 of the 12 had celiac disease at 24 month follow-up. The remaining 7 “gluten intolerant” subjects who remained on gluten-containing diets appeared to have an improvement in symptoms at the 24 month mark, but it is unclear if this reflected a period of remission v. a true resolution of the intestinal antibody response, as there has been no long term follow-up, and as far as I can tell, biopsies were not repeated. Although this study has a very small sample size, it demonstrates that there are some “gluten intolerant” patients who actually have subclinical celiac disease. In these cases, the celiac immune response is contained to the intestines only and villous atrophy (the hallmark of celiac disease) has not yet occurred. It appears that these individuals benefit from treatment with the gluten free diet. I am curious to see if the long-term follow-up of the remaining 7 gluten intolerant subjects will be published in the future, and if some of them will also go on the develop celiac disease. I am also curious to see if celiac antibody testing of intestinal biopsy specimens will eventually become part of the standard of care in the clinical investigation of celiac disease. Reference: Quaglia, S, De Leo, L, Ziberna, F, et al. Intestinal-mucosa anti-transglutaminase antibody assays to test for genetic gluten intolerance. Cellular and Molecular Immunology advance online publication, 28 April 2014; doi:10.1038/cmi.2014.32.
  12. Hi Frieze, That's a good thought, but I had the 23 and me testing done last year and I do not have a genetic profile associated with any of the common methylation problems, such as MTHFR. Is that what you meant? Jess
  13. Hi, I've tried to learn a lot about this topic. From what I can tell, as long as you yourself do not have celiac disease or non celiac gluten sensitivity, there is no need for you to go gluten-free during pregnancy. Plus, even with your husband's history of celiac, the risk that your babies will actually develop it is 1 in 10. As a new mother, the best way to try to prevent celiac is to breastfeed your babies so that they have a healthy microbiome (population of gut bacteria) established. Good luck with everything! J
  14. Hi celiacandme, I am Jess. I have not been on here much but your story worries me and I can't help speaking up. Your abnormally elevated celiac antibodies and endoscopy with villous atrophy mean that you have celiac disease. There is no scientific evidence that lousy causes villous atrophy, I was unable to come up with even a single case report. You may have both lupus and celiac disease, but your rheumatologist seems to be misguided. I was diagnosed as having atypical lupus about 10 years ago but refused the medications because my gut instinct was that the diagnosis was wrong (it was) and although I didn't know that I had untreated celiac at the time, things didn't add up. I have never heard of a rheumatologist stating lupus medications without at least having the lab tests back to confirm lupus. Just my 2 cents, I hope that I don't come across as being too bossy or assertive, just that I agree with what others have advised you.
  15. Hi Celeste, I am one of the celiac and mast cell people on here. My major celiac symptoms have been joint issues and neurologic (brain fog, fatigue, difficulty concentrating). I react to the smallest possible traces of gluten, sulfites, and foods with a high histamine load (some of my histamine and sulfite symptoms are fatigue, brain fog, and forgetfulness and difficult concentrating). Like you I have hypothyroidism and a positive ANA. My B12 levels have always been >1200 but I have never been able to figure out why. I'll let you know if I find anything as I hit the books. Jess