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GalaxyDuster

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Latest Celiac Disease News & Research:

Everything posted by GalaxyDuster

  1. GalaxyDuster
    Hello, everyone. I wanted to let you know about the results of my biopsy. I do not have celiac disease. All they found was signs of chronic inflammation in the antrum of my stomach. They believe it is from the 1200-1600 mg of ibuprofen I'm taking every day, combined with acid reflux. I will have a gastric emptying study done just to make sure there is...
  2. GalaxyDuster
    CyclingLady, were you deficient in IGA as well? I'm just asking because my TTG was negative (less than 1), but my IGA was normal. I'm still waiting for my biopsy result, I should have it by next week. I'm just curious if a negative TTG with a normal IGA is possible with celiac.
  3. GalaxyDuster
    They should test your immunoglobulins, IGA, IGE, IGM. I had a weird flare-up of dermatographic itching rashes and hives about five years ago, when all my problems really started (dermatographic means if you gently scratch - or sometimes even touch - the skin, it leaves a bright red streak. Like, you can write your name on your arm in lines of long red hives...
  4. GalaxyDuster
    Hi. I wanted to let you all know, I had my upper endoscopy on Friday (5/26). I'm still waiting for my biopsy results. They took samples of the esophagus, stomach and duodenum. They said I had a very reddened, inflamed antrum (lower part of stomach, before the duodenum starts). I'll let you know how it turned out, either way.
  5. GalaxyDuster
    Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy. I know I'm not crazy, but you know.
  6. GalaxyDuster
    Well guys, my blood test came back negative for celiac disease. Total IGA =161 (normal), IGA-TTG was < 1. I'm really quite surprised. My GI appointment was bumped up to 5/10 at least, so I won't wait til June to see them. My quest to find out where my lost 40 lbs went continues. Thank you all for your kidness and expertise while I waited for my answer...
  7. GalaxyDuster
    That explains EVERYTHING. I had Aetna PPO about 4 years ago, and it was horrible. Absolutely horrible, and expensive. They jacked up the price the year Obamacare came out, from $550 a month (family) to $725 a month and I got stuck paying it for a year. I dropped them like a rock when open season came around. They are a greedy and worthless insurance company...
  8. GalaxyDuster
    Hi Ahhhnold (is that like Shwartzenegger?! ), I am also waiting for my endoscopy. In the meantime, the people on this message board suggested that I request the celiac antibody panel to be drawn. Do you know if that was included in your blood work? If not, you can ask your primary care doctor to order it while you wait. That might shed light on just what...
  9. GalaxyDuster
    I know what you mean. On one hand, I don't want celiac disease, but on the other hand, it would be a "fixable" problem that would explain so many of my health problems... all the way back to age 11, honestly! From my understanding, from the very nice and knowledgeable people here, only one test being flagged high counts as a positive or potential positive...
  10. GalaxyDuster
    Blood was drawn this afternoon... they said I could get results tomorrow or even the next day! I also have a GI appt scheduled for June 9th. I am so glad I will have at least some kind of answer pretty soon. I'll let you all know. Thanks again for being so helpful!
  11. GalaxyDuster
    I got my script from the doc... it's for total IGA and TTG-IGA. Guess that's a good start? It also says "fasting" on the requisition, do I really need to be?
  12. GalaxyDuster
    Thank you so much. It's so nice to have such friendly and helpful people to talk to while I await my answers. I had an interesting experience yesterday... I ate a bowl of Kraft mac n cheese... then passed out for 4 hours and woke up vomiting. I've had a lot of experiences like that after eating over the past 2 years, but I never put those pieces together...
  13. GalaxyDuster
    I just wanted to say, because of your post I did ask my primary care doctor's office to order this antibody panel for me, and they thought it was a very good idea. I should be able to have it done next week (still waiting for my GI referral). Thank you!
  14. GalaxyDuster
    I would definitely recommend getting tested first. Everything I've read so far (it's been less than 2 weeks of a learning curve, but I'm learning!) has said your antibody tests and endoscopy/biopsy tests may come out as false negatives if you start a gluten free diet first. Believe me, I've thought about trying it just to relieve this very long-standing suffering...
  15. GalaxyDuster
    At this point, if I was to diagnose myself on symptoms alone, I'd be absolutely sure that this is what I have. 10 days ago, I would have never even considered it. Now I just feel so confused and crazy and unsure. What am I even going to do if this is not my answer? The pain in my back is so severe. I would love to have my answer and just make it go away....
  16. GalaxyDuster
    I just got a call from my new doctor's office. They said my vitamin D is still quite low, and magnesium is quite low. Everything else (even RBCs and iron, they said) were normal. They agreed to send me a script to have those antibody panels done. But now I'm wondering, shouldn't I still be anemic and have low iron, if celiac disease is my answer? I feel like...
  17. GalaxyDuster
    For the last couple of months, I've had intermittent periods of sweating and chills with increased aches around my back and sides. I'm also more tired. Even the skin is sensitive, like when you have the flu and even clothes or light touch "hurt". I've also thought about how I had those swollen lymph nodes on my MRI last year (the CT scan I had months later...
  18. GalaxyDuster
    Yes, and my oldest daughter has all kinds of symptoms of being very sluggish and tired and exhausted and I have to say, if I turn out to have this disease, she's next on the list to be checked out for it!
  19. GalaxyDuster
    I have to admit, I have considered this possibility. It's like I can't digest *anything* properly. ...But I really want to know exactly what's been wrong with me, and I don't want to mess up the tests by starting a gluten free diet too soon. I don't want to be in a place months from now where I wonder what's really going on. I really, really want a straight...
  20. GalaxyDuster
    Squirmingitch - Woah!!!! Thanks for sharing that story with me... I'm so sorry you had to go through all that suffering and trauma. I guess that goes to show that all my weird symptoms could truly be from this. I'm glad that you feel so much better now! I also have a question for you - did you notice that the pain in your back ever seemed to intensify after...
  21. GalaxyDuster
    Thanks, AWOL cast iron stomach... I'm in the denial/I don't know/I hope it's not cancer stage, as of yet. In fact, I'm kinda surprised... I went to a new primary care doctor for a second opinion, as my original doctor thought it was "ok" that I lost 40 lbs on accident in 19 months. She was convinced this was pain from "depression", and "loss of appetite"...
  22. GalaxyDuster
    My husband jokes that most of my DNA is made out of noodles, because I eat so much. Noodles, every day. EVERY DAY!!! All three of my pregnancies were sustained on a gluten-rich diet... bagels, noodles, bagels, noodles... lol.
  23. GalaxyDuster
    While I impatiently await my GI appointment, I'm trying to talk myself out of having this. Can any other GI diseases cause a 40 pound weight loss and fairly severe malnutrition over 2 years like this without being obvious? Like, I'm quite (*hopefully*) sure I don't have any masses or tumors. Also, other than pretty severe diarrhea on that trip I...
  24. GalaxyDuster
    Thanks, Nicki. The more and more I have read, the more and more I'm sure that this is going to be the answer to all of my health problems. My teeth have gotten so bad, the enamel is all worn off and the teeth have white spots and translucency around them. I've gone from 156 lbs to 116. I can't eat 1/3 of a normal meal. I have cramping and bloating and...
  25. GalaxyDuster
    Thank you all for responding. I have a 2nd cousin with celiac disease (truly diagnosed) who said the diet is not as bad as I'm imagining it. I guess these days there are a lot of choices. I just love gluten so much. But, I'm also 116 lbs and falling, so I am very realistic that if this is what's wrong with me, I'll have to accept it. There's not much left...
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