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pain*in*my*gut

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Everything posted by pain*in*my*gut

  1. pain*in*my*gut
    I get that fullness in my throat when my Hashi's is flaring. It aches, too. My doc said it's because my thyroid is enlarged and pushing on my trachea. You need t3 and t4 testing. I would be willing to bet you have Hashi's and need supplementation. I had every one of your symptoms before I went on thyroid meds.
  2. pain*in*my*gut
    The positive EMA is virtually 100% specific for Celiac. You also have a positive DGP, which is also very specific for Celiac. I would not bother with a biopsy if I were you (but that is just me). Because your mom is Celiac, I would consider yourself diagnosed.
  3. pain*in*my*gut
    Have you had a recent Celiac blood panel done? Just because you were negative years ago does not mean that you stay negative. Those biopsy results sound suspicious to me. "Sandy"? Some docs won't dx Celiac unless the villi are totally flat, this is a common cause of falsely negative biopsies.
  4. pain*in*my*gut
    The ONLY tests that was positive for me was the DGP. It was very high. I cannot eat gluten or I get very ill, with symptoms exactly like yours. I wonder why your doc is not using the DGP, as it has replaced the anti-gliadin abs because it it much more specific for Celiac. Also, getting tested for the genes could help add some pieces of the puzzle.
  5. pain*in*my*gut
    Daily nausea could be a sign of gastroparesis. I have it. It's caused by your stomach emptying too slowly. An upper barium swallow study would give you more info on this condition than an endoscopy! I think you need a new doc!
  6. pain*in*my*gut
    ^^^^This. Why wait for symptoms? By that time the damage has been done. Not to mention that kids sometimes have different manifestations of Celiac (cognitive issues, neurological, etc.) It's just a blood test. Get the genetic test first, because if they are negative, then you don't have to worry about it. If they have the genes, get them tested for...
  7. pain*in*my*gut
  8. pain*in*my*gut
    Just my 2 cents.....if your biopsy is negative, please consider going gluten free anyway. Biopsies are very unreliable, and false negative results are very common. With your positive symptoms and bloodwork, you should not be consuming gluten. GI docs put WAY too much emphasis on that biopsy. You should also request genetic testing to see if you have the...
  9. pain*in*my*gut
    Hmmmm....are you sure you are strictly gluten free? I just found out the hard way that hydrolyzed Brewer's yeast has gluten when used as a flavoring in foods. Could you be getting cross contaminated in some way?
  10. pain*in*my*gut
    I see you are a male.....have they tested your testosterone levels? If that is low, it can cause fatigue. Just a thought!
  11. pain*in*my*gut
    Yikes! It sounds like your intestines were severely damaged, and that is going to take longer to heal. Six months is too soon to expect a full recovery. Are things any better, or is it still as bad as before you went gluten-free? And I also agree, you could have another issue going on besides the Celiac. What does your doc think?
  12. pain*in*my*gut
    I am one of the unlucky few who cannot tolerate even gluten-free oats. They make me sick the same way gluten does. Bummer!
  13. pain*in*my*gut
    Yeah, I know you are right. That is the plan for at least several months. I was definitely getting very complacent about making extra super sure my food was gluten-free. I even had nachos with queso dip at the movies a few weeks ago without even asking if it was gluten-free! Odds are it was NOT, as I was really sick that night. Duh. Live and learn!...
  14. pain*in*my*gut
    My GI doc actually said that if my Celiac panel came back positive, then we would "obviously" do another biopsy to try to get that positive biopsy. I told him I didn't need a positive biopsy to convince me that I have Celiac, and that the +DGP was enough for me (and my rheumatologist). He disagreed, and said there were other things that could cause positive...
  15. pain*in*my*gut
    Hi all! I have been gluten-free since September 2011, and my tummy has been good. Up until 6 weeks ago! I started having bouts of diarrhea, bloating, gas and reflux. Then the dreaded left sided abdominal pain came back (this was what lead me to my Celiac dx in the first place). My current GI, who is clueless about Celiac, wants me to have an upper GI...
  16. pain*in*my*gut
    Would you believe that I had the same pain that lead to my Celiac dx as well? For some reason, that type of "under the rib" pain is a common symptom of Celiac. It took about about 6 months for it to go away completely for me. Welcome to the club! You are on the right track now. Hopefully you will see some more improvements soon!
  17. pain*in*my*gut
    I have eaten their grilled chicken several times in the last few weeks and I was fine. I always get sick if I get even tiny amounts of gluten, so I feel it's pretty safe (at least the one I go to). I imagine there are CC issues at different locations, but the current ingredients list says they are safe.
  18. pain*in*my*gut
    I was dx with Celiac by rheumy, so then he tested me for thyroid antibodies (my TSH was normal, BTW) and they were very high. Saw an endocrinologist who then did a FULL thyroid panel (free t3 and t4) and both were low, consistant with Hashimotos's. So she started me on levothyroxine and within weeks I was feeling better. At the same time my rheumy did the...
  19. pain*in*my*gut
    Ummm, that is NOT a complete celiac panel! There are no anti-gliadin antibody tests or, more importantly, there is no DGP, which is very specific for celiac and is often positive before anything else is. What you had done is really only half of a celiac panel. Regardless, you are off gluten and feeling better, so that's the most important thing! Congrats...
  20. pain*in*my*gut
    First of all, normal people do NOT have positive DGP antibodies. They are very specific for Celiac. Some normal people can have anti-gliadin antibodies, which are different from the DGP, and much less specefic. If you were gluten intolerant, you would have no positive blood work, as an intolerance does not activate the immune system. It can still make...
  21. pain*in*my*gut
    The GI doc said she had "mild blunting"? Ummm...that's consistant with Celiac! Lots of docs won't DX Celiac unless the villi are totally gone. Get a copy of the actual pathology report and see what it says. Has she had the genetic test to see if she has the gene? What blood tests did she have? Many docs don't do a full Celiac panel, and it's important...
  22. pain*in*my*gut
    Whoa!! I have never seen such positive test results for Celiac! No doubt about it, you have Celiac. Are you going to have the biopsy? I would think the only reason to do one would be to see how much damage there is, definitely not for confirmation of Celiac. You got it! Welcome to the club!
  23. pain*in*my*gut
    What blood tests did you have done? All too often docs don't order the full panel.
  24. pain*in*my*gut
    This exactly. My ttg was normal, but my DGP was sky high. You need a complete panel done.
  25. pain*in*my*gut
    If I were you, I would try to eat more gluten foods for a true gluten challenge. Breading on fried foods does not have that much gluten. You need to eat the equivalent of 3-4 slices of bread EVERY DAY for at least 4-6 weeks ( sometimes longer) for the results to be valid. I hope your challenge stays tolerable!
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