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jebby last won the day on October 24 2014

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  1. 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 per
  2. 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 intestin
  3. 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 ab
  4. 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
  5. 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
  6. Hi Kittyluvr, It sounds like it could be...we are really in a new world of medicine these days, especially with problems related to celiac disease. There are some really good resources online and also a few Facebook groups that have been invaluable to me on this journey. Good luck! Jess
  7. Unexplained joint pains (arthralgias) were one of the main symptoms that I dealt with prior to my celiac diagnosis. Throughout my twenties I had pain and stiffness in my fingers, knees and ankles that would come and go with no apparent explanation. I ran track for part of high school and continued to run for fitness during college, but shortly after graduating had to stop running for a long time due to my joint issues. I was evaluated over and over again for lupus, rheumatoid arthritis, Lyme Disease, etc. but there were never any answers for why I had developed the pains. So I learned to live
  8. You are welcome! I appreciate the feedback and am glad that you found it helpful! Happy weekend! J
  9. Drs. Guandalini and Assiri have written a summary of pediatric celiac disease that was published in the online edition of the journal JAMA Pediatrics last week. In this post I will share some of the highlights of their review article. Although the overall prevalence of celiac disease is 1% in the pediatric population, only 10-15% of children with celiac disease have been diagnosed and treated. The celiac genes (HLA-DQ2 and DQ8) contribute 40% of the risk of developing celiac. Environmental risk factors for celiac disease include infant feeding patterns, early infections, gut microbiota
  10. In the pediatric population, the DGP-IgA can become positive when there is early bowel damage from celiac disease, long before villous atrophy and a positive TTG IgA occur. I can't help but assume that the same may happen in adults.
  11. At this time last year I had never heard of mast cell activation syndrome (MCAS) and the first time that I heard the name I thought that it was a “made up” disease. Since then I have come to realize that it is a real diagnosis and I have learned a ton about it, including the following: MCAS is a newly recognized disease of the innate immune system (our bodies’ first line of defense against bacteria, viruses, parasites, and other invaders). Women make up the majority of patients with MCAS. Symptoms are caused by having too much histamine in one's system and can affect almost any part of t
  12. Hi Newtoitall, Based on the available research this 5 to 6 months seems to be the optimal window, but keep in mind that every few years the recommendations seem to change! Good luck to you on your gluten-free journey! Jess
  13. I was thrilled to come across a paper about non-celiac gluten sensitivity in children in the Journal of Pediatrics, one of the main pediatric journals. Many of my pediatrician colleagues read this journal on a regular basis. In this article, a group of Italian researchers has described the symptoms and lab test results in 15 children with gluten sensitivity (GS) compared to 15 children with active celiac disease and 15 controls (children with IBS-type symptoms that have no correlation with gluten intake). None of the children included in the GS group had an IgE-mediated wheat allergy causing s
  14. **This is the first guest post on my page by Cristen, an incredibly talented scientist and mother of two children. Her youngest child was diagnosed with Celiac disease earlier this year. Many thanks to Cristen for tackling this challenging topic! Celiac is known to have a large genetic component and people with Celiac disease carry the HLA-DQ2 or HLA-DQ8 genes. However, only around 4% of people that carry these genes develop Celiac (http://www.ncbi.nlm.nih.gov/pubmed/20419830). The big question then is, what else is contributing to the development of Celiac? Scientists are currently looking
  15. Hi Itchy Abby, 2 interesting things: 1. TTG 3 is only available for research purposes at the current time 2. During the opening lecture on Mon. September 23rd Dr. Peter Green point blank stated that if a patient has dermatitis herpetiformis that they have Celiac Disease (no biopsy needed). It is the only time that I have ever heard him claim that a biopsy is not needed. Jess
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