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Ninja

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Everything posted by Ninja

  1. Ninja
    I have no idea how to explain it either! I just wonder what the numbers would have been without the steroid (when I was gluten-light). Also, different labs... I had some weird results (for something else tested at the same time) from the lab that ran the celiac test the first time. I was also glutened recently (before the tests)... I don't know if that would...
  2. Ninja
    I do believe that the blood testing has a 25% false negative rate. There are very very few false positives on blood work. :-) It looks like you have DQ7 and DQ6. Currently, DQ7 is not recognized as a celiac gene but there is some research starting to come out which points otherwise, especially in the case of no DQ2 or DQ8. Laura
  3. Ninja
    Thanks Madagascar! I was checked for antibodies twice. The first time I was gluten-light and the technician had A LOT of trouble getting enough blood. The results were all negative: DGP IGA and IGG were both at 2 (with <19 negative), iTG IGG and IGA were <2 (with <3 negative, 4-9 weak pos. >10 positive), EMA IGA was negative and my serum level...
  4. Ninja
    Update: They tested for the "high-risk" alleles: HLA-DQA1*05, HLA-DQB1*02 and HLA-DQ*03:02 I translate this to mean that they tested for the alpha chain of DQ2.5, the beta chain of DQ2.5 and DQ2.2 and the alpha and beta chain of DQ8. Is this correct?
  5. Ninja
    I agree with Mom-of-Two: if you can, try to get her levels tested. Sometimes mega-dosing is the only way to get levels up (if they are real low), but in that case it is super important to know where she "started."
  6. Ninja
    I completely agree! If celiac meant taking 1 pill everyday I'm sure we'd have been diagnosed ages ago! Running the tests is easy, but diagnosing without them is the true test, IMO. I wish it weren't so hard to fight for what we need amongst those who are supposed to fight with us. However, we can ban together and wait and wait and wait for the doctors...
  7. Ninja
    CM - Like you said: cannot rule out celiac, because they can't! I've been doing more reading and testing for only 2 genes IS absurd. From what I know about my test results, they only looked for DQ2.5 and DQ8. I think I remember reading that your doctor did something similar? Are you going to ask for a copy of the results? I also went through my blood work...
  8. Ninja
    Mine does! Especially when I get a couple spots around my eyebrows - hair falls right off and leaves a bald spot. My hair loss, however, seems to be confined to wherever the DH is (sometimes OK, sometimes not so great). In other words, if I get the rash around my shoulders, I don't notice any hair thinning.
  9. Ninja
    I just wanted to add a sort of "postscript" to this thread for anyone who may go across it by chance: my "constipation" was discovered by my PCP and an ER doctor. It was reviewed by a GI doctor not too long ago and I was subsequently told that it was NOT backed up stool, but it was instead built up gas. This makes sense given the repeated failures I had with...
  10. Ninja
    Hi all, I'm adding more pictures now that my rash has developed some consistency. I get it on my upper back/shoulders, buttocks (not amused ), stomach, jaw line and hairline. Some more recent-ish photos - the rash hasn't changed much - varies in severity (these pics are medium severity). Still not dx'd but Celiac is suspected (I think?). - I always...
  11. Ninja
    Thank you guys! :-) I hadn't thought about the mis-interpretation as a possible issue... this doctor's office has been known to do that (mostly because they don't know much about celiac disease at all). More reason for me to pursue further and pick up the actual results. ACL laboratory was used? When I dropped the sheet off, the lady had to look up to...
  12. Ninja
    I was diagnosed probable Celiac because of my amazing results (and gluten symptoms)! All of my symptoms were classic celiac symptoms - my results post gluten-free indicate that I was not absorbing nutrients efficiently (or well) at all. It all just looked so much like celiac to the GI that he was willing to dx based on that. Amongst the conversation I didn...
  13. Ninja
    I had a nice meeting with my GI doctor a few weeks ago. I agreed to undergo the genetic testing (vitamin d was checked as well). I was hoping to be able to come back here and post about finally receiving validation via positive genetic testing. It all seemed to make sense. Multiple Sclerosis, osteoporosis, short stature, gum disease, vitamin deficiencies...
  14. Ninja
    That's fantastic!! Isn't it great when the numbers reflect how you're feeling?! Laura
  15. Ninja
    Hi kbenj1, My diagnosis was tumultuous, just like many others' here. What I've learned (which may or may not be a popular opinion) is that it could always be Celiac. The tests are fallible - some have a 30% false neg. rate. Even with genetic testing, there's just so little known about the cause and necessary contributing factors that it's hard to make...
  16. Ninja
    This might have already been mentioned, but make sure you get copies of all of your test results. It's nice to have them so you can compare numbers post diagnosis. It's also nice to be able to see exactly where your numbers fall within the range of "normal." Sometimes what the lab says is normal, isn't actually normal for you. A good example of this is the...
  17. Ninja
    My cycle changed a few months after I went gluten-free; it got worse before it got better. Now, at almost a year, my period is so much easier to handle. It could be that your body is adjusting because you are beginning to absorb more nutrients?
  18. Ninja
    Thank you all! I've learned so much... and there is light. :-) Happy health and healing for 2013!
  19. Ninja
    I can't believe it, but in about one month it'll be my one-year gluten-free anniversary. :-) Quick update: - I'm still growing, though it's slowing down. I started at 5'4" and I'm now about a half an inch shy of 5'7". I didn't think that was possible at my age! - GI symptoms totally gone, 'cept the occasional glutening. - The rash (which I'm almost certain...
  20. Ninja
    I'm glad the thread could help you! Yes it is a symptom; everybody's body reacts differently. The big "D" and constipation went away for me with the gluten-free lifestyle. There's hope!
  21. Ninja
    Thank you! The gluten-free lifestyle has a STEEP learning curve, doesn't it?!
  22. Ninja
    We called the dental office and explained my situation with gluten and asked them to check their products. I'm not sure which companies they use... I can call and inquire about it again if you'd like.
  23. Ninja
    A bit late to reply here, but... I did call and ask. They confirmed it that the flavoring had gluten in it. Obviously, my experience seems to be the minority here and I'm glad for that!
  24. Ninja
    Unfortunately, the blood tests have a 20-30% false negative rate. The majority of the antibodies in Celiac reside in the small intestine and any they find when testing your blood are "spill-outs." Before you go gluten-free you should decide whether or not you want to undergo the endoscopy and biopsy. This approach is still considered the "gold-standard...
  25. Ninja
    It will definitely be interesting...
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