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Nevadan

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Everything posted by Nevadan

  1. Nevadan
    Bette, I don't know how common the lactulose/mannitol test is. I just discoved it in some searches within the last couple of days. Perhaps Gina discussed with her GI dr today and can answer your question. George
  2. Nevadan
    I just ran across this report today referenced from BrainTalk forums. It describes various intestinal damage including some attributed to "nonceliac food-induced enteropathy". There is much discussion of the potential damage by casein as well as other foods. Open Original Shared Link Quote " Biopsy In allergic eosinophilic esophagitis, esophageal...
  3. Nevadan
    Matilda, That's very interesting about casein and your allergy response. In my case the casein seems to cause skin irritations mostly. I have almost no allergy (pollen, dust, etc) reactions anyway; however, my wife who still drinks cows milk on her gluten-free cereal in the mornings does suffer a lot from hay fever due airborne stuff. How much milk...
  4. Nevadan
    Gina, Since you have a GI appt shortly, you might want to read up a bit on Leaky Gut Syndrone in case that might raise some questions you could ask. There are many LGS sites; this one is pretty typical in terms of viewpoint: Open Original Shared Link The interesting thing re LGS for me is that it is a slightly different view of the causes of a lot...
  5. Nevadan
    Have you had a bone density test lately? Osteoporosis occurs in over 50% of people with celiac disease, symptoms or not. George
  6. Nevadan
    For a general how-to type book I would recommend "Wheat Free, Worry Free" by Dana Korn. For a more scientific overview of the problems of consuming gluten I recommend "Dangerous Grains" by Braly & Hoggan (it's already been mentioned in this thread) One consolation: gluten-free diets can be very healthy. If you can, focus on having as much naturally...
  7. Nevadan
    I recently got my York test results back (posted partial results at Open Original Shared Link ) and I'm still trying to figure out their value. My highest reactions were to the grain (wheat, gluten, giadin, etc) family and the milk family (casein, whey, etc) which was consistent with my dietary experiments and Enterolab results. I was already gluten-free...
  8. Nevadan
    I'm looking. I've been doing a lot of research over the last several weeks trying to become more educated re celiac, gluten sensitivity, leaky gut, etc. One article I remember was related to casein's relationship to autism in patients who test negative for celiac disease. They put casein into the "food irritant group causing intestinal irritation leading...
  9. Nevadan
    While researching casein, I found several references reporting that casein can create a "leaky gut" without any help from celiac disease - it's essentially a parallel path to gut damage. Goggle "leaky gut" and you will find several websites with pretty good evidence that casein is quite damaging to a high percentage of people, even without celiac disease...
  10. Nevadan
    Gina, your situation sounds all too familiar. I, too, tested positive for gliadin and casein with Enterolab and York. (York testing also found a few more which I've listed on a separate post). The only recognisable symptom I've found related to casein is a very painful splitting of the skin on the tips of my fingers. After researching casein, I found...
  11. Nevadan
    I've been having an interesting read here and wasn't planning on joining in since I think this is largely a matter of symantics. But..... It is widely accepted that there is lots of confusion within the medical profession regarding the use of the terms like intolerance, sensitivity, celiac, etc. Unfortunately I think this is one of the obstacles to progress...
  12. Nevadan
    Hi Michelle, This is a very interesting thread. All research is appreciated. You quoted a passage in "Dangerous Grains" that has perplexed me since I first read it. In the "From our perspective....." paragraph did they mean "added to" instead of "removed", or am I missing something? I know this is a small technicality, but it has been bugging...
  13. Nevadan
    AMEN to jknnej's comment!! Skijoe, As someone else said, at 75 you have potentially many more yrs left and particularly for these years, it's the quality of life that counts. I would worry about the related diseases and what they could mean for you. BTW I'm a 60 yr old male with only moderate reactions to gluten, but I already have been dx'ed with...
  14. Nevadan
    Welcome to the board. Sorry to hear about your daughter; however, Type 1 Diabetes and celiac disease are very related genetic diseases. Without the elimination of gluten, folks with celiac disease are subject to all kinds on dire auto-immune diseases. Speaking of genetics, you and your wife and any other children you may have should also be tested for...
  15. Nevadan
    The main BrainTalk forums index is at: Open Original Shared Link? Scroll about 1/4 way down this very long page to find the forums for "specific neurological conditons" listed alphabetically. The "Gluten Sensitivity/Celiac Disease" forum is at: Open Original Shared Link Of special interest is the 2nd item on this index, "The Gluten File" with lots...
  16. Nevadan
    I had my DNA tested at Enterolab for gluten sensitivity. They seem to look for the largest number of gene alleles (variations) compared to other labs I found. The DNA gene nomenclature is very confusing, but here's info mostly from Enterolab. The older methods of DNA analysis provided what is called serologic results. Today they do molecular DNA testing...
  17. Nevadan
    I hear you on the testing costs - they add up pretty quickly. Your strategy makes excellent sense. Sorry about the redundant recommendations, but I tend to loose track of who seems familiar with which info. I find myself probably too often trying to educate re "not celiac disease - just gluten sensitivity", but there seems to be a need - even on a celiac...
  18. Nevadan
    I, too, think Rachel has described gluten intolerance (or sensitivity) very well with some good comments by Matilda and others. For those interested in getting more info on "the iceberg of which celiac disease is only the tip" I recommend reading "Dangerous Grains" by Braly & Hoggan. I think there is clear evidence that gluten sensitivity has many...
  19. Nevadan
    Claire, According to what I saw on the Kimball website their Celiac DNA test only looks for the DQ2 and DQ8 Celiac versions of the HLA-DBQ1 gene. Given your neuro symptoms, if this is indeed true, I would recommend having the DNA testing done by Enterolab where they check for not only celiac disease gene alleles but also non-celiac disease gluten sensitivity...
  20. Nevadan
    Sensitivity, intolerance, celiac disease - it's all very confusing. However according to some of the leading edge researchers, celiac disease is just one manifestation of gluten sensitivity - "celiac disease is the tip of the GS iceberg". There are non-celiac disease GS people who instead of having villi damage are likely to have other equally life threatening...
  21. Nevadan

    ARCHIVED Did A 'test'

    Nevadan replied to Bonnie's topic in Coping with Celiac Disease

    I also agree that you already have a good dx just by your body's reactions to gluten. However, should you need more justification for getting other relatives tested you might do just a DNA test - it requires no gluten consumption and clearly documents hereditary tendencies. I had mine tested by Enterolab. The DNA test alone there is about $150. George
  22. Nevadan

    ARCHIVED Wary...

    Nevadan replied to AmandaD's topic in Doctors

    Hi Joe, I may have started the rumor that you didn't have a celiac disease gene due to my earlier post. I did a quick reference to my Enterolab report and under "The serologic equivalents are as follows:" I see "If the molecular type is 0302, the serologic equivalent is DQ3 subtype DQ8" which according to my understanding means a version of DQ3. Now...
  23. Nevadan
    Rachel, Thanks for your feedback. I'm still trying to understand more about the different antibodies IgA, IgG,IgE hoping I can make some sense out of all this. I'm doing quite a bit of studying now, and if I feel like I learn enough to be worthwhile, I'll do a post. Meanwhile just from what I've learned so far, perhaps your reaction to those ...
  24. Nevadan

    ARCHIVED Wary...

    Nevadan replied to AmandaD's topic in Doctors

    AmandaD, I share your skepticism re Enterolab, but I did submit for their testing after self-diagnosing some gluten sensitivity by diet changes. As a scientist myself I too am concerned about the testing that has not been peer reviewed; however, I have some confidence in the DNA testing done by Enterolab (I read somewhere that they acutally subcontract...
  25. Nevadan

    ARCHIVED Wary...

    Nevadan replied to AmandaD's topic in Doctors

    Joe, Here's my Enterolab experience as far as it goes: I self-diagnosed by alternating gluten-free/non-gluten-free (3 times -I'm a true skeptic, or maybe just a slow learner) after reading an article reporting that osteoporosis and celiac disease are often concurrent - I'm a male w/osteo. I found some gastro symptoms that I had come to accept as normal...
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