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Electra

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Everything posted by Electra

  1. Electra
    Ok here is my issue. I've been diagnosed with Celiac and even though my daughter was tested, it was her skin problem that led me to Celiac in the first place, so I know that she has it!! On X-Mas we are getting together with my hubbies family to open gifts. The common thing is for everyone to just hand a kid a cracker if they want one, but I'm scared they...
  2. Electra
    well it's just that my daughter is only 2 and I'm not sure I can handle my sickness, the transitions and having her be put through that all at the same time. I'm just so overwhelmed right now that I couldn't think rationally if I wanted to UG!! Off to take some pain meds because my foot is swollen up huge and my neck, back and ribs have been so sore for days...
  3. Electra
    I just have no idea how it works. I'm not sure my Dr. has ever even tested a patient for Celiac before. I think he's under the impression that the biopsy is where we go from here, but he is setting up an appt with the gastro specialist so that he can tell me exactly what needs to be done. I also suggested he set me up with a nutritionist in the meantime so...
  4. Electra
    Well I finally got my results and I am positive for Celiac. The test said you had to be less then 7 on the antibodies and mine were at 19.6 and the titer said that I needed to be a zero and I was an 80!! I'm so relieved yet so stressed. I have to continue to eat Gluten and make myself sick until I can get into the gastroentologist for the scope in who knows...
  5. Electra
    Yah I definitely thought it through. I had to reschedule my surgery too (which I think is actually the best thing considering my health) because if I'm not on the anti-biotics and steroids then my nose won't be clear enough for the specialist to even do what's needed, so I decided to put all that on hold until I can get all my test results back and then we...
  6. Electra
    That's one of the things I have the hardest time with. I don't have a list of ingredients that would be listed to replace the "gluten" label. I know that dehamogonized Vegetable Protein is one of them, but other then that there are too many for me to know already. I don't have a book or anything to go by, so I get overwhelmed trying to figure out if there...
  7. Electra
    I had to stop taking it because we suspect I may have Porphyria, so if it's not Celiac it could be Porphyria, and if I have Porphyria then the anti-biotics are what brought on the attach that put me in the hospital. You can not have certain drugs if you have Porphyria and I'm not willing to take a chance at having another one of those attacks!! Normally I...
  8. Electra
    Thanks Laura, I did call the pharmacy, but the pharmacist was too busy to look it up and told me he would call me back and never did. I also have a little avoidance personality disorder going on, so it's hard for me to keep calling. I'll probably just call another pharmacy, but I'm not taking the meds anymore and haven't had any further attacks so far ...
  9. Electra
    It's not mentral though because I just got over that about a week ago. UG my sides have been aching for weeks now and my stomach is swollen. I can't stop craving food. I'm hording it like mad :-( I think I've gained like 7 pds in the last 2 weeks. Now I'm feeling really constipated (even though I'm still able to go to the bathroom) and I feel menstral crampy...
  10. Electra
    Oh my goodness that is good to hear. Dinty Moore is the ONLY kind of canned beef stew that I like. It's so delicious YUMMY!! I truely hope it's gluten free
  11. Electra
    Ok I just read this and I'm in in shock yet again. Not only have I had about EVERY Celiac symptom in the last few years, but I just came accross this info. I have had 2 nasal surgeries and still have major sinus problems and polyp problems that I have my 3rd nasal surgery scheduled for. Man this is unbelievable!! "Upper respiratory complaints such as...
  12. Electra
    I didn't even realize that site promoted Entrolabs. As of now I'm not a big fan of Entrolabs, so I guess I'll keep digging for info. In all honesty I have a problem with going Glutan Free if I do not have a diagnosis. I'm sure I will eventually go gluten free, but almost ANYONE would feel better going Glutan Free. It's obviously so much healthier to use...
  13. Electra
    "The lab that does the testing does matter. Some labs have "normal" ranges set so high that practically no one tests positive even with biopsy-provable Celiac Disease. Remember, antibodies present means there already is tissue damage. People with levels just above baseline seem to respond to a gluten-free diet." Open Original Shared Link Does that...
  14. Electra
    The lab orders said Celiac Panel on them and that's all they asked for, so I don't know if the hospital lab's only does one test for the panel or if the other blood tests have just not come back yet UG!!
  15. Electra
    Well it appears they didn't even do all the tests. They only have the AEA results and the company that did them say that under 7 is normal for them and her results show a 4.4!! Well she's only 2 so I think 4.4 is aweful close to 7 and I explained to her that they were suppose to do all 3 tests because NO ONE test can tell you weather you have it or not. UG...
  16. Electra
    Ok they called me a couple on Monday and told me that my daughters blood tests came back negative, so I call up today to find out exactly which tests she had and what their numbers were. Well they only did an IgA anti-endomysium antibody test and they claim under 7 is negative and she was a 4.4!! Well I explained to her that they had listed a Celiac Panel...
  17. Electra
    I've put in a call to my Dr. asking him to give me a call with my results. I'm going to ask him exactly what my numbers were. Does anyone know what the normal range is of someone who does NOT have Celiac, and what numbers would indicate that someone does have Celiac?!! Thanks in advance to anyone who can help me on this one !!
  18. Electra
    I'm not sure about that, because my dr. is with me on this one. He actually believes that this may be the answer we have been searching for. I know the Celiac Panel came from another lab then the normal blood levels so that does take longer, so I highly doubt they have come back yet. If they have come back then I doubt they suspect I have it because my dr...
  19. Electra
    Ok they did a test she described as a frozen sample or a freezing blood test. I'm not exactly what it was for and they didn't have my other results handy so I have to wait a day or two for copies and I still haven't heard anything on the Celiac Panel, so it's a waiting game still lol!! Hopefully I'll get some answers soon!!
  20. Electra
    I'm headed to the dr's for more blood tests this morn. They want me there bright and early so they can get my blood and have it send off for analysis!! They haven't gotten my Celiac Panel yet (even though I thought they had it yesterday). The tests they got results for yesterday were the normal routine blood tests they do on just about everyone who is having...
  21. Electra
    I didn't mean to make it sound like anyone was doubting that I have Celiac or that I am sure I have it lol!! I threw that comment in as humor, but It probaby sounded kind of "psarchastic and snappy" and the way I wanted it to sound was like I was making a joke because I'm SURELY not convinced that I do or do not have Celiac, so how could I expect anyone else...
  22. Electra
    oh and these blood tests are not my only symptoms. My symptoms include but are not limited to...... Constant Gas Recurrent abdominal bloating and pain Pale, Foul-smelling Stools Weight loss/Weight Gain Fatigue Anemia Bone and Joint Pain Behavioral Changes Tingling Numbness in Legs Muscle Cramps Aphthous Ulcers (mouth ulcers) Tooth discoloration...
  23. Electra
    I've actually had B12 shots before and didn't feel any effects from it what so ever!! I have always had a problem with low iron and low B12, but my B12 has never gotten this low. They want me to come in for more bloodwork, but haven't diagnosed me with anything yet, so I'm still confused lol!!
  24. Electra
    Ok well surprise, surprise my B12 is VERY, VERY LOW. My hemoglobin is also low and whatever else they tested in the Celiac Panel is also LOW!! Does anyone know what this means in relation to Celiac. I know that B-12 difficiency is a tell tale sign of Celiac, but the others I have no idea!! AHA I just looked up low Hemoglobin and that points to Anemia another...
  25. Electra
    Those are the 3 drugs I was on that I've completely stopped taking, and my symptoms have gotten much better. Does anyone know if any of those drugs have Gluten? I called the pharmacy but they never called me back UG!! Thanks so much for any help you can give!!
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