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jebby

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Everything posted by jebby

  1. jebby
    Your story sounds a lot like mine. I am a "super sensitive" celiac and my health continued to deteriorate despite being strictly gluten-free. I was diagnosed with mast cell activation syndrome late last summer, like T.H.
  2. jebby
    I agree with Lisa that there are too many variables to be able to answer your question for sure. I am on a relatively large mast cell forum and there are many who have minimal symptoms from eating histamine-releasing foods but who have other triggers for MCAS, such as exercise, heat and cold, etc. Although I am have been diagnosed for less than a year, I...
  3. jebby
    Hi G, The feeling is mutual. Thank you so much for giving me the opportunity to share my experiences! J
  4. jebby
    Hi again Irish Heart, Thanks for sharing this list. My worst reactions, but far, since 2012 have been from foods and drinks with added sulfites, such as dried fruits, wine, vinegar, etc. As I've gotten the MCAS under control with antihistamines, quercetin, and probiotics, as well as keeping my histamine intake low, I have been able to add some of the foods...
  5. jebby
    Hi Shellie, Good luck with your appointment. My allergist, who is also a friend of mine, did not initially believe that I could have MCAS because he had never seen a case of it before me (he actually had, but since he didn't know about it, he didn't know to evaluate his patients for it). Through my conversations with Dr. Afrin, who I am pretty sure did not...
  6. jebby
    I love my probiotic, Florajen 3. It's made a huge difference.
  7. 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...
  8. jebby
    If you PM me I can send you some info about celiac and multiple food intolerances.
  9. jebby
    Hi Diana. I have had the same experience as Gemini, my Raynaud's has virtually disappeared since going gluten-free in 2010.
  10. jebby
    All of my IBS-type reactions to wine are all related to sulfites/histamine.
  11. jebby
    Agree with all of the above. I am personally not a fan of GMOs but there is absolutely no scientific evidence that GMOs cause celiac disease. At this point it is all speculation.
  12. jebby
    Hi glutenmaestro, Welcome! Dr. Benjamin Lebwohl, one of the celiac researchers at Columbia University, just published a review of all that is known about risk factors for celiac disease and he did not include travel. The link to his paper is here: Open Original Shared Link. J
  13. jebby
    Hi all, Not sure if this thread is still active or not, but I was diagnosed with celiac disease in 2010 and then developed a bizarre sulfite intolerance in 2012 out of the blue (through food journaling I realized that wine, dried fruits, molasses, etc. we're causing me to have flushing, wheezing, tongue numbness, irritable bowel symptoms/diarrhea, and headaches...
  14. jebby
    Most people with celiac disease are DQ2/DQ8 positive, but it is possible to have it without the genes (depending on the source I've seen that between 1 and 4 percent of celiacs do not have of the main genes). I was diagnosed 4 years ago with celiac disease, then found out after the fact that I am DQ2/DQ8 negative. I am double DQ7. So is my mom, who also has...
  15. 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
  16. 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...
  17. jebby
    I ended up watching the day 5 video on colostrum and once again, the "reference" that we get is the speakers' anecdotal research. I am terrified by the idea of people with autoimmune diseases, like celiac disease, watching Dr. Keech's video and deciding to take bovine colostrum as a treatment. I take care of newborn and premature babies and it's scary enough...
  18. jebby
    I have not watched any of the videos but am extremely concerned by a lot of the information that I am hearing is coming out of the summit in the social media world (that we can drink all types of beer, that should all be taking bovine colostrum, that cross reactive foods, like in the tragic case you just shared, make those of us sick with Celiac sick, that...
  19. 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...
  20. 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...
  21. 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...
  22. 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...
  23. jebby
    You are welcome. I'll be posting more soon!
  24. 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 ...
  25. 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).
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