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jebby

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Everything posted by jebby

  1. jebby
    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...
  2. jebby
    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...
  3. jebby
    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. jebby
    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...
  5. jebby
    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...
  6. 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...
  7. 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...
  8. 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...
  9. 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...
  10. jebby

    ARCHIVED Back Up Food

    jebby replied to Telith's topic in Coping with Celiac Disease

    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. 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...
  12. jebby
    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. jebby
    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...
  14. jebby
    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...
  15. jebby
    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...
  16. 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
  17. jebby
    Hi Greenbeanie, I have been away from this thread for a long time. In my case my tryptase level was totally normal at baseline. If my allergist had not proceeded with further testing (including a repeat tryptase to show that it increased with symptoms and urine tests) I would never have been diagnosed with MCAS. He fortunately took this time to read...
  18. jebby
    Hi CMC and Laura, Laura did email me and I am very grateful that she did, and I am sorry about any confusion. Dr. Marsh, the founder of the a Marsh grading system for the small intestinal changes seen in celiac disease, gave a talk at the ICDS, and he is the one who I paraphrased in my blog post. From what Dr. Marsh said during the lecture, if a patient...
  19. 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...
  20. jebby
    You are welcome! I appreciate the feedback and am glad that you found it helpful! Happy weekend! J
  21. 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...
  22. 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.
  23. jebby
    Hi Bart, Welcome to this MCAS thread! Your posting popped up while I was on this forum. You really have a ton of the symptoms of MCAS. In my original post that IH linked to, one of the references is a recent German study showing the 17 percent rate in the general population. Back when I was diagnosed last year I reacting to a lot of the foods, but not...
  24. jebby
    There are a few Facebook closed groups for mast cell disorders. I am part of one called MCAD. The Low Histamine Chef, Yasmina, also has one called Histamine Intolerance. I am not aware of any other online support groups but am interested to know if anyone else knows of any.
  25. jebby
    Hi Shellie, In my case I thought it was important to have an answer for my bizarre multi-systemic symptoms, and since taking regular doses of antihistamines did not control my symptoms at all, I wanted to have other mast cell stabilizers prescribed (and covered by my insurance). I also wanted to be able to be 100% sure that I had the diagnosis of MCAS before...
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