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About QueenEe

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  1. Hi all, My rash started up after I was gluten free for a few months. First, I got a bumpy, itchy rash on my elbows (both) which cleared up after about a week, without me doing anything to get rid of it. The same rash then appeared on my legs (both) and it hasn't budged since (6+ months)! My GI took one look at it, heard my digestive complaints, and said she was pretty sure it was DH, and that I had celiac. I've never had the intestinal or skin biopsy done to confirm the diagnosis. However, I did notice that once, when I was on a course of antibiotics for strep, my rash cleared up a bit (not all the way, but it did improve). Would this be another indication that it's DH, or does the fact that it reacted well to antibiotics mean that it is something else entirely? Anyone have any experience with DH and standard antibiotics (not Dapsone) that could advise? Thanks!
  2. GI's have heard worse so don't worry abt sounding like a hypochondriac. Interesting, because I have that same stubborn white coating on my tongue and when I went gluten free for a few months it went away. Not sure what that means, and I woudnt assume you've got celiac based on that, but between that and your extreme lethargy following eating, i'd say you've got quite a strong case to bring to your GI. I think that as long as you present your info respectfully, any good doctor will appreciate a well-informed patient. Good luck!
  3. QueenEe


    oh gosh, that must feel awful, I feel really bad for you! I was diagnosed with celiac with negative bloodwork, just based on my experience, but as i was reading your post I recognized lots of what you described: bulky stools, pain in the lower left quarter of the abdomen, and now I'm remembering that a few years ago, before I started on this whole celiac journey, I ended up in the ER because of the pain in my abdomen. My mother was scared it was my appendix (it was on my right side then), and they did an xray, which showed a small stool in my system, but everything else was fine. the doc told me the stool shouldn't be bothering me, and sent me home. Well, if that stool shouldn't have been bothering me, then how come I ended up in the ER because of the pain it was causing?!? Looking back, it must have been the celiac at work (or else theres something else going on inside of me that i'm not aware of ) I hope everything works out for you, but from what your describing it definitely could be celiac and something else (with your liver). Please let us know what your tests show, i'm really curious to know what it might be. I wish you lots of luck and a speedy recovery!
  4. I agree with you that more than one test is needed; I just wish I'd have known to ask for more tests when I was still glutened! I have all the classic symptoms: paleness, fatigue, gas, bloating, diarrhea occasionally (it mostly went away when I got rid of dairy), constipation, white coating on my tongue all the time, my hair grows super slowly, mild pain in my abdomen after getting glutened, my abdomen feels like its all cramped,twisted and clogged after i eat gluten (not very scientific but that's how it feels!), and an itchy rash on my thighs (it's slightly raised, and looks like lesions, just like DH, but its not as raised and full like the pimples of DH are, so not 100% sure its dh, just 99% sure ). My parents are getting tested hopefully this month (they also experience many of these symptoms, and in addition, there are other autoimmune diseases in my extended family), so I'll get a better picture of all of this once I get their results (and this time we know to insist on getting a full panel of tests, not just one!).
  5. Such an important point!!!! Unfortunately, my GP told me to go off of gluten once my blood test came back negative. She meant well, and honestly believed that even though I tested negative, I could have an intolerance to gluten which would be helped with a gluten-free diet. Well, now that I'm off of it, I cant get retested to confirm my GI's diagnosis (she dx'd me just by hearing my symptoms, and how i reacted well to gluten-free), so it's a bit of a pain to deal with that now. Don't go off of gluten until you've done every single possible test that you think you will ever want to do with regard to gluten! It'll make it so much easier for you to get accurate results! Good luck finding some answers!
  6. I just called the lab that processed my test, and they told me the range is: Anything less than 19.9 is negative. So my 5.1 is a definite negative! Its disappointing that my GI was wrong, and I'm not a weak positive, but she dx'd me with celiac before even seeing these results, so I guess my diagnosis still stands Would I need a separate test to know if i am IGA deficient?
  7. I called my doc today, and the secretary read me the test results and told me the range was: less than 20 is negative, and above is positive. Does that make sense? If so, why would my GI tell me it's a weak positive? I'm so confused
  8. Hi again, When I had my celiac bloodwork done, my doctor tested me only for tissue transglutaminase IGA, and I got a 5.1. My doctor said it was negative, since anything lower than a 20 is a negative. Well, I wasn't yet aware that I should also get tested for IGA deficiency to make sure my numbers were accurate indications of anything. Too late for that now since i'm off gluten and now my tests won't be accurate. My doctor then told me the test isn't so accurate anyways, so I should just try gluten free and see if it helps. I tried, and it was great. My mother convinced me to see a GI anyways, just to be sure. The GI heard my symptoms and said I have celiac. When she saw my test numbers of 5.1 she immediately told me I had a weak positive test result. I'm looking online, and apparently different tests have different ranges. According to my GP, anything lower than 20 was negative. However my GI thought my 5.1 was a weak positive (since according to the Mayo Clinic range for the TTG IGA test, that is in the weak positive range.) Anyone know which range it really is? Did my GI misinterpret the numbers, or did my GP look at the wrong range? Any help would be very much appreciated!
  9. btw, i'm also always pale, and right when my celiac symptoms started I actually gained a few pounds, and just looked bloated all the time. If your doctor won't diagnose just because of the lack of that one symptom (which isn't present in all cases), me thinks it's time to find another doctor who is better versed in celiac symptoms, and all of its possible manifestations.
  10. I also was under the impression that weight loss was a prerequisite to being diagnosed with celiac, but I read somewhere that it isn't even such a prevalent symptom (i wish i remembered where i saw it!). I was diagnosed by my GI based on my experience, not with a biopsy, and I've never experienced the weight loss either. I strongly suspect that my parents both have celiac, and that my grandmother has it as well. If anything, they've all gained weight which just won't budge no matter what due to the disease. My parents will hopefully be checked later this month, so I'll update when I find out if they're positive for Celiac. Good luck with your biopsy!
  11. Thank goodness I don't get angry but I get very irritable on gluten. I generally lock myself in my room and do my own thing for a while till I'm back to normal. Helps to minimize the damage . Oh, and stay away from gluten! Its just not worth it.
  12. my skin is super pale, but I'm hoping that will change once I actually start absorbing the nutrients I'm eating. Thanks for the heads up, I'll do a search and see if I can find those threads. And yes, when I'm forty I'll be very happy to get carded; till then i'd like to look my age
  13. Not fun! It's reassuring to hear that once I'm on the gluten-free diet for good I'll hopefully start looking more my age. (And one day we will be thankful that we look so young! just not while we're in our twenties )
  14. I recently went back on gluten for a couple days, to see what would happen and determine if celiac is really what I have (never had the biopsy, and my bloodwork was negative, so I always have the doubt that maybe, just maybe I was misdiagnosed.) Well, other than having to eliminate my food within a few hours, I was totally fine right after the gluten. I was a bit tired for the following few days, pale, but nothing worse than that. I was really beginning to second guess my diagnosis at this point, and was ready to throw in the towel to this whole gluten free thing, thinking that all the positive changes I'd seen these past few months were entirely imagined. Then, about 4 days after glutening myself,I had D, and that confirmed my diagnosis for me. It took about 4 days, but my body reacted negatively. Give yourself at least a week to see if you develop any reactions- I know that sometimes my reactions are immediate (red spots on my face) and sometimes, like my last experiment, it takes close to a week. Good luck!
  15. Hi all, I'm a 21 year old female, and I was recently diagnosed with celiac by my GI, even though my blood test was negative (5.1). Based on my symptoms, my rash, and the way I reacted well to a gluten free diet she was absolutely certain that I have celiac. (She's the director of her department, so I'd trust her to know her stuff ) I had many of the 'typical' celiac symptoms: constipation, diarrhea, lactose intolerance, rash, irritability, lethargy, mental fog, pale, always cold, skin was slow to heal, many broken bones as a child, cold sores when I ate gluten, etc. I've always looked very young for my age, and now, at 21, I look like I'm 14. Seriously. Could this be due to my celiac? My celiac symptoms worsened considerably when I was 19, and looking back at my graduation picture (taken when I was 18), I can't help but wonder how is it that I look younger now than I did back then???? Is there any way to explain this away with the rapid development of my celiac condition at around this time? Any advice/pointers would be so much appreciated! Thanks!