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jebby

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by jebby

  1. jebby
    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 ce...
  2. jebby
    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...
  3. jebby
    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 p...
  4. jebby
    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 f...
  5. jebby
    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 th...
  6. jebby
    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. jebby
    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...
  8. jebby
    You are welcome! I appreciate the feedback and am glad that you found it helpful! Happy weekend! J
  9. jebby
    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...
  10. jebby
    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. jebby
    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 (ou...
  12. jebby
    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. jebby
    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...
  14. jebby
    **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-DQ...
  15. jebby
    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...
  16. jebby
    Hi again, I suspect that if/when the other TTG types are tested for, that the rates of diagnosis will skyrocket! Also, I am in the same boat with you with my family members. About 20% have gotten tested (my mom and I both have it) and the rest have refused, even those with other autoimmune diseases. Sometimes I feel it is easier to convince strangers to...
  17. jebby
    Hi Irish Heart, It truly was the development of the neuropathy that made me decide to start to write about all of this. Thanks for sharing your story too. I am so glad that you opted to not take medication for fibromyalgia and that you finally were able to get to the root cause of all of your problems (Celiac). I have to throughly review the obstetric records...
  18. jebby
    You are welcome. I'll be posting more soon!
  19. jebby
    The second to last session on day one of the 2013 International Celiac Disease Symposium (ICDS) was a talk entitled, “Melting the Celiac Iceberg-potential, latent, silent: to treat or not to treat?” I was very confused about these terms when I first came across them in the Celiac medical and research literature a few years ago. “Silent” Celiac Disease refers ...
  20. jebby
    Hi, It was discussed as being a good alternative to the TTG IgA, especially in children under 2. One of the major themes repeated over and over again during the ICDS is that tons of biopsies are still being done incorrectly (not enough samples of small bowel tissue taken, needs to be at least 4 to 6, and/or wrong areas being sampled).
  21. jebby
    The introductory lecture of the clinical forum of the International Celiac Disease Symposium (ICDS) 2013 in Chicago last week was entitled “Celiac Disease Today: An Overview” given by Drs. Alessio Fasano and Peter Green. Although the official slides and presentations from the symposium are not yet available for purchase, based on my notes the following top...
  22. jebby
    Hi Susan, I am so sorry to hear about all of the suffering that your little boy has experienced. It seems like in most cases the biggest source of cross contamination is when people keep a shared home and kitchen? Is your entire house GF? If it isn't, it am help to take all gluten out of the home. I am just about the most Type A person in the world, and...
  23. jebby
    Hi NoPainNoGrain, Thank you for sharing your story. It sounds like your intestines may not be fully healed yet (and, hence, not ready for grains). I hope that you find a diet this works for you. Jess
  24. jebby
    I spent a good chunk of last Christmas Eve in an MRI scanner, getting my spine analyzed for the white matter lesions of multiple sclerosis (MS). Mike, the MRI technician, piped George Winston’s “December” celiac disease through my MRI headphones, but the music did little to drown out the loud hammering sounds of the MRI and the thoughts that were racing in my...
  25. jebby
    Hi Josie, I am sorry that I am just seeing this now. I think that you are getting differing advice because you fall into such a gray area of what to do. Although it makes sense to wait to heal, improve your bowel absorption, and rest (as I wrote about in this paper when I reviewed this topic), if you are 37, your fertility is rapidly dwindling. Although...
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