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Ninja

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Ninja last won the day on April 19 2014

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    USA

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About Me

I've struggled with "difficult-to-pin-down" type symptoms for awhile: most notably GI "issues", mild vitamin/mineral deficiencies, anxiety/depression, and generally feeling unwell.

I first suspected gluten was the (or a) culprit for my symptoms last summer (2011). I was finally tested (serum) for celiac in October and the results were negative. 

I went off gluten and milk approx. 2/1/12 and for the most part, have felt much better. UPDATED: Oat Sensitive (9/12). Successfully re-introduced milk (2/13). 

Symptom Resolution: (2/13)
- I began growing 6 or so months after going gluten-free at age 18. I began at 5'4 1/2" and now am 5'6" UPDATED (2/14)
- I have been able to stop all allergy medications and steroids.
- GI symptoms: diarrhea, bloating, gas, pain, etc. improved. (Aside from occasional glutenings.)

- The presumed DH/"hive-like" rash (began 3/12) is relatively under control. UPDATED: the rash is well controlled by gluten-free diet. (2/14)
- No weird flu-like "illnesses". 

- Double HLA-DQB1 *0602

 

UPDATED: (5/14)

- Lupus DX (5/14). Starting Plaquenil 300mg. On a hybrid anti-inflammatory diet + gluten-free.  

- Equivocal wheat allergy blood test result (2/12). Planning to retest.

- GI symptoms and GERD still mostly gone, though still trying to work out some kinks.

- No random rash flares.

- "Environmental" allergy symptoms drastically improved.

- Everything else still mostly the same as above.

 

  1. Ninja, I sent you an email through here. I hope you got it. 

    Thanks.

  2. 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...
  3. 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?
  4. 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...
  5. 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...
  6. 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...
  7. 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...
  8. 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.
  9. 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...
  10. I went through enterolab and no, they do not report on both the alpha and beta units – only beta.
  11. 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.
  12. 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...
  13. 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...
  14. 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...
  15. 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...
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