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Ninja

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Everything posted by Ninja

  1. Ninja
    Hi ezgoindude, I am on the fly and will come back with a more thorough reply but a few things. . . Yes, I am on a sort of hybrid paleo/Mediterranean/anti-inflammatory diet. I do not eat any grains, which made a huge difference for me all the way around, but I do eat yogurt (all other dairy I avoid). It's been quite a journey to figure out what my...
  2. Ninja
    The elevated eosinophils in your colon are certainly suspect. . . Is your new doctor by chance willing to do a repeat colonoscopy with biopsy to look for further evidence of eosinophil infiltration (or lack thereof given your elimination diet)? Otherwise, would s/he repeat the colonoscopy + biopsy after a trial course of steroids/immunosuppressives?
  3. Ninja
    How far are you willing to travel? There is a wonderful restaurant in White Rock, BC (5-10 minutes from the border and near the water: beautiful!) called Uli's. I've been there many times and have had no issues, despite being super sensitive to gluten CC. It is one of only a handful of places I can eat with no ill-effects. They do a fantastic job! Open Original...
  4. Ninja
    Hi there, Here are two really good links (particularly the second one) that may help explain 23andme's weird reporting system as it relates to the more common DQ type nomenclature: Open Original Shared Link Open Original Shared Link!po=53.1250 – This is actually a study. Very informative and interesting if you choose to read through the whole t...
  5. Ninja
    This seems to come up a fair amount, thus I thought it might be helpful to have a collection of relevant information all in one spot. [if you are only looking to interpret your results, skip down to the asterisks.] Per current knowledge, if you do not possess any of the celiac genes you are not considered to be at risk for developing the disease at any...
  6. Ninja
    Hi there, It looks like you have HLA-DQ9 as well as HLA-DQ6. The problem with the enterolab genetic tests is that they are not fully comprehensive as they only look for the beta unit (the B1 part) of a particular gene and not the alpha unit, therefore they cannot be used to determine whether celiac can be ruled out on the basis of genetics. In other words...
  7. Ninja
    Potentially not. Though I imagine it might be if you were to end up positive for one or more of the celiac genes! A shot in the dark, kinda. Even so, if you have the resources and would prefer to avoid going through a doctor (which it sounds like), I would encourage you to get it done: it could end up being an important piece of the puzzle.
  8. Ninja
    Usually the beta and alpha units correspond with each other: if you have beta DQ2 present you are more likely to have alpha DQ2 present as well, however that doesn't always happen. Celiac can be observed in individuals with positive alpha and beta 'celiac genes' (DQ2, DQ8) or positive for either the beta portion or the alpha portion of those celiac genes...
  9. Ninja
    I went through enterolab and no, they do not report on both the alpha and beta units – only beta.
  10. Ninja
    My absolute pleasure. This board is amazing and such a huge source of information, support and guidance. So grateful it exists! Welcome to the fold.
  11. Ninja
    I'm sorry to hear that you are getting more sensitive to gluten, though that seems to be par for the course for those of us with celiac or NCGI. Personally, I would not (and did not, for that matter) go back on gluten for the tests because my quality of life is so much diminished. I want to spend as much time of my life feeling good! I figure as testing...
  12. Ninja
    Thanks! I am happy that it could help. @Cindy, having the genes plus symptoms can only give cause for further investigation via blood test and/or endoscopic biopsy. Both of those would require you to remain on gluten for accurate results. If you have family members with celiac or other kinds of autoimmune diseases, especially Type 1 diabetes and Hashimoto...
  13. Ninja
    Hi Cindy, All of the above are variations of what are considered the "celiac genes" (HLA-DQ2, -DQ8 and -DQ7). HLA-DQB1 *0201 + HLA-DQA1 *0501 make up the HLA-DQ2.5 haplotype. This is the most common haplotype in celiac disease and is said to confer the "most" risk. However, this haplotype is also generally pretty common across the U.S. (and it...
  14. Ninja
    Hi ClevelandRocks, I know you have said that you are IGA deficient, I am wondering if the doctors have looked at serum quantities of the other immunoglobulins (namely IGM and IGG)? Common Variable Immunodeficiency (CVID) can cause some GI issues and malabsorption if there is also damage in the small intestine. Here is a good resource for more in depth...
  15. Ninja
    Hi dilettantesteph, Totally understand your concern, however MTHFR is well studied by MD's as well. I encourage anyone who has questions about the validity of either of the Dr.'s I have mentioned to do a PubMed (or equivalent) search. I do not agree with everything they say, but have found some helpful information. I am only reporting what has worked...
  16. Ninja
    If you decide to try Methyl B12, I suggest you start low and go slow. I noticed a huge difference in my fatigue, muscle weakness and brain fog when I began supplementing with Methyl B12.. huge! However, I soon after discovered that I am sensitive to too many methyl groups (of which methyl B12 is one); I get wired and can't sleep at all. It is not fun! Listen...
  17. Ninja
    Hi there! It looks like you have one copy (you are a heterozygote) of a well researched celiac gene (HLA-DQB1*0201); this is DQ2. Most people with celiac disease have DQ2, however it is also a common genotype in general: 30% of the US population carries it but only 1% of the US population will develop celiac disease. You also have one copy of DQ...
  18. Ninja
    I have two friends (they are siblings) who were diagnosed in their late twenties. Neither of them have the most common genetic variation that predisposes to the more severe form of CF. One has more issues with her lungs, while the other has more significant GI issues and very little lung involvement. I believe they were diagnosed via the sweat test and subsequently...
  19. Ninja
    I totally understand! I was hesitant to try the Betaine HCL myself out of fear that it would make the pain and symptoms worse. Thankfully that has not been the case! I started off taking just one tablet even though the bottle said to take two; eventually I worked up to two, which has been helpful for me. Keep us posted!
  20. Ninja
    I definitely second GottaSki's recommendation. PPI's did not work for my GERD, either. I just recently started taking Betaine HCL and digestive enzymes (Digest Spectrum by enzymedica) with meals. I've noticed a significant difference thus far! Best wishes, Ninja
  21. Ninja
    I've wondered this too! In all the literature I've read, it is extremely rare for a person to develop celiac without a variation of DQ2 or DQ8. However, the individuals in those studies were tested for all variations of the genes and both alpha and beta units on each loci. It is very unusual to stumble across a doctor who orders that thorough of a genetic...
  22. Ninja
    Thank you both! I am still going to make an appointment with my doctors, but I did find out that a family member has been using a basting brush (I think this is the correct term? - the bristles look like hair) that was used during pre-gluten-free days for sauces that did have wheat in them. He has been using the brush to make these sandwiches, which we only...
  23. Ninja
    Thanks. I've since decided to return to my PCP and GI doctor. Mr. gluten-free in Indiana: Prior to determining that gluten was, in fact, an issue I spent countless hours reading and researching medical journals from pubmed and similar places. I have done blind gluten challenges on a few occasions simply to rule out the possibility of "my brain playing...
  24. Ninja
    Hi everyone, I'm looking for some advice. Brief history for those who do not know it: I went to see a N.D./M.D. in October 2011 after realizing that my constant illness, fatigue and intestinal issues were not normal. At that time I was on an anti-inflammatory and nasal steroid. The doc ordered a full Celiac panel which came back negative. I went gluten...
  25. Ninja
    I'm at 14 months and can handle all dairy - foods with high amounts of lactose in moderation. I don't think I'll ever go back to drinking cow's milk straight though... Thanks for sharing, I love reading about progress others have made/continue to make.
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