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MsCurious

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Everything posted by MsCurious

  1. MsCurious
    I just sent a note back to my doctor.... and I was wayyyyy too honest about my feelings!
  2. MsCurious
    OMG!!!!!!!!!!!!!!! Venting already! ... pfffffft! You all read the note I sent the doctor (above)... and well, I got his reply... *BIG OLE HEAVY...TIRED OF TRYING TO EDUCATE THE DOCTORS... SIGH* This is what he said: "I would try gluten-free diet for 6-8 weeks. Then consider biopsy, which is definite diagnosis tool for this problem." <...
  3. MsCurious
    I'm tired... I'm worn down.... I give up... not on me... on doctors... and here's why: Most of you know my story, so I won't go down that road, but after random blood tests (dr wouldn't do full celiac panel) and having some negative and some positive... the most recent EMA negative, I have given up getting them to listen to me. Doctor did suggest I might...
  4. MsCurious
    I absolutely cannot tolerate any "cows" milk period. Ice cream, is an odd thing though. I'd say 99.9% of the time it hits me hard just like milk would, but once in a blue moon over the course of probably the last 6 years, I've decided to indulge (when I know I'm going to suffer but I'll be home alone!) LOL ) ... and low and behold.... nada!!!! I think I ate...
  5. MsCurious
    OMG... they never told us at birth being female meant becoming grand-master juggler, did they? You poor dear! Just having a child with pneumonia is bad in itself, but you've really got a plateful! I'm sorry... let me know what I can do to help....which isn't much from here, but I'm a good listener if you need an ear. Just shoot me a msg. Hang in there! ...
  6. MsCurious
    Sounds like it could be atrial fibrillation. It's generally not life threatening, unless you've had it consistently for over 48 hours, and then it can cause pooling of blood where it should be pumping out and puts you at risk for blood clot. You should call your doctor and discuss what's going on. Dr may want to check it out, just to be sure its nothing serious...
  7. MsCurious
    Hey NancyL! Glad to see you're still here... I sort of lost track of you for a while and was wondering how you're doing with going gluten-free. We both posted for the first time on the same day, I think... so I sort of feel like your battle is my battle. So happy to hear you're feeling better with gluten-free! That gives me hope for the future. You asked...
  8. MsCurious
    Lucky you, cyberprof! Sounds like you have a great doctor. I have DQ2.5 also, and am very curious about your story. How did it unfold, symptoms, timeframe etc... Share if you'd like. Really happy for you that you got such an easy diagnosis.
  9. MsCurious
    Igg, YOU JUST MADE MY DAY! It's so nice to know I could have helped even one person in some small way! This is a long journey... feel like I've been in the "pre-diagnosis forum" forEVER, and I'm sure you do, too! LOL But, I'm learning a lot and it feels good to know I can make even a teensy difference in relieving someone's frustration level. Thanks...
  10. MsCurious
    Hey Raven, I looked it up for you... Dr. Crowe responds... The ABCs (and TTGs) of Celiac Disease Testing First, by definition, a diagnosis of celiac disease requires abnormal microscopic findings in small intestinal biopsy specimens. One exception to this rule occurs when a patient has a skin condition known as dermatitis herpetiformis, in which...
  11. MsCurious
    Still here, lurking, and playing the waiting game. Hopefully, will have EMA results Monday, provided the lab didn't screw things up (should have been back by now). I have no idea if test results will be positive or negative... no idea if I'm celiac or NCGS.... but regardless, after reading endless posts of frustration, and sometimes heartwrenching stories...
  12. MsCurious
    From Mayo Clinic: Open Original Shared Link "Gluten-challenge testing requires adequate gluten intake for long enough to develop gut lesions. Four slices of whole wheat bread daily for 4 weeks usually suffices. However, it will make patients ill and they can become quite symptomatic. There are some patients who are delayed responders and if a patient...
  13. MsCurious
    It is a myth that if you have celiac disease, all you need to worry about is avoiding gluten. Even when they're completely gluten-free, people with celiac disease need to be concerned about their cholesterol levels, their vitamin status, and their weight. In addition, people with celiac disease need to be aware that a variety of symptoms and medical conditions...
  14. MsCurious
    Hmmmm... this is just my opinion, but if you and your doctor are not a team... if your doctor talks "at you" and not WITH you... you should probably find another. They need to listen to you, and give you time to tell them ALL of what is going on. If you like your doctor, make another appointment, and be prepared when you go in. By that I mean, make a list...
  15. MsCurious
    Hehee... yeah thorough after going through this for DECADES with no answer! I'm so ready to have a result! I wish they would have just done the whole panel instead of a test here a test there, but I suppose they're trying to save coins if they don't have to do them all, I dunno. I've never had eczema but my sister and brother both have it. I also have been...
  16. MsCurious
    Been poking around on the forums, because I'm sure somewhere along the line, someone has addressed this question. I found a post by cassP that looks "kind of" like my situation. That gives me a little light ... Thanks cassP ... your previous post just helped me out again. cassP: "u know (of course i only had a 2 week gluten challenge- not enough)...
  17. MsCurious
    Sorry to pester you all again, but I'm just curious if anyone has actually had the experience of a negative tTG IgA (Tissue Transglutaminase IGA) and then had a positive IgA-EmA (endomysial antibodies)? Thanks! Really curious about that. I have had Positive DQ2.5 genetic marker, oodles of symptoms, negative tTG IgA and still waiting for IgA-EmA... but not...
  18. MsCurious
    Speaking of nightshades, if you're allergic to one or two for sure...are you allergic to the rest? Or is that a random thing too?
  19. MsCurious
    Ditto what Raven said. DON'T stop eating gluten until you have been tested. Painful as it is... keep lots of it in your diet until the blood tests and/or biopsy are done, or your test results will possibly be a false negative. You have a LOT of the same symptoms that I have, and I know how uncomfortable/painful and NOT FUN it is to keep eating things that...
  20. MsCurious
    Have you ever been tested for Celiac? You have enough symptoms that I would ask doctor about it for sure. I'm still trying to figure out whats wrong with me, and a lot of your symptoms sound like mine. The instant bloating, pain, etc after eating...etc. BUT having said that, I'm thinking you should also see an allergist, because food intolerance and allergic...
  21. MsCurious
    Thanks for posting this. I have postponed my biopsy until additional serum tests are completed, and then 4 of the five will have been met. I was thinking if they came back positive, I wouldn't do the biopsy. I think reading this just sealed the deal for me. No need for cutting when its evident without. At this point in time, for me its still possible that...
  22. MsCurious
    Update: Regular doctor got allergist involved, and they BOTH ordered new tests. The most recent ordered by my doctor is IgA way out of whack high, and he sent EMA IgA to Quest Labs so that will take a while. Not sure exactly what that will do, but time will tell. I asked allergist what he though about biopsy, and he said, lets postpone that until lab...
  23. MsCurious
    So it is your DQ test that you were referring to? I just wondered if there was a "Gluten Intolerance test" out there that I wasn't aware of. And yeah, from what I'm reading, there seem to be connections with RA and at the very least the antibodies and immune system. Its probably all related. They're still finding those things out. My doctor got allergist...
  24. MsCurious
    Long story short there are the test results in the order they were done, but I can't really figure out what the tTg IgA and IgG and the last IgA and IgG mean. Thanks in advance for your input! Edit: removed test results since nobody really had any input on this. Sorry... if I could I would remove topic, since it really has no helpful use for anyone.
  25. MsCurious
    Hi zebaldwin, Just wanted to tell you ... I was feeling really hopeless and frustrated two days ago, so I know what you feel like. It seems overwhelming and endless, but it will get better. I took an active approach and I'm really getting things hopping on my end. Got the IGA deficiency test I wanted to determine if that's what caused first tTG to be...
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