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pain*in*my*gut

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Everything posted by pain*in*my*gut

  1. pain*in*my*gut
    Yep, nausea is a big one for me. It think for me it's because gluten causes my whole GI system to slow way down, which means food stays in my stomach longer, making me queasy. Sorry you feel gross.
  2. pain*in*my*gut
    Your doc should have known that you needed to continue on gluten until your biopsy. When you go gluten free, your gut starts to heal because your body is not attacking itself anymore. It can heal in as little as 2 weeks, or as long as 2 years, depending on the damage. So, even though you have been on a gluten bender for a week, your gut may not have...
  3. pain*in*my*gut
    Well, here is the thing....you have abnormal bloodwork that could indicate that you have a disease that is causing damage to your body which could result in some pretty serious complications down the road if it goes untreated. The way I see it you have two options: 1) You could follow thru with further testing now and bite the financial bullet, and...
  4. pain*in*my*gut
    Well, I can tell you that I was gluten free for only 2 WEEKS when I saw my GI doc, and he said I needed to go back on gluten for 4-6 weeks to get an accurate biopsy result. I don't know how long you have to be gluten free before it would effect the blood results, but 5 weeks seems like long time and you risk getting falsly negative results. If you want...
  5. pain*in*my*gut
    Sorry, I just re-read you other post....it was a family history of RA not Celiac. I am a bit foggy tonight, as I am currently doing a gluten challenge and I just ate a big bowl of chicken and dumplings. Can you say GLUTEN? Oh, how I will miss dumplings..... Yeah, I think I will persue U of C. My current medical group seems to be pretty clueless...
  6. pain*in*my*gut
    Is this the only testing that they did for Celiac? There are other blood tests that should have been done at the same time, like a DGP or the older gliadin ABS. There are other conditions that can cause a positive tTg, like type I diabetes or autoimmune liver problems. I am suprised given your history of celiac in your family and your son's symptoms that...
  7. pain*in*my*gut
    The most up to date test for Celiac is the DGP (deamidated gliadin peptide) antibidy screen AND the tTG (tissue transglutaminase) antibody screen. The DGP is replacing the older gliadin antibody tests, which some docs may not be aware of. I would tell the ped the exact tests that you want. Write it down and show him: 1) DGP antibody screen ...
  8. pain*in*my*gut
    carecare....it is highly unlikely that you will develop Celiac disease if you do not have the DQ2 or DQ8 gene (OR the sub-units of the DQ gene, and many labs do not test for the sub-units, hence the "negative genetic test"). You can have gluten intolerance without the genes, but not Celiac (in 99.9% of cases). Here is a good link about the genetic testing...
  9. pain*in*my*gut
    I got the same response from my GP....her words were "If he doesn't show any signs, I wouldn't worry about testing him". Ummmm, I don't think so, lady!! Every first degree relative should be screened for Celiac. Period. And every Celiac presents with different symptoms, so just because he doesn't have the "typical" symptoms does NOT mean that he isn't...
  10. pain*in*my*gut
    This, exactly. You can have negative blood results and still have Celiac. You can have a negative biopsy and still have Celiac. Do you know which tests the doc used? There is a newer test, DGP that is more sensitive than the older gliadin ABS. You need a new doc and new tests. The bad news....you need to keep eating gluten if you want an accurate...
  11. pain*in*my*gut
    If you were just diagnosed, then you must get him tested. All first degree relatives (your parents, siblings and children) need to be tested, and if negative, they need to be retested every 1-2 years, even if they are asymptomatic. You need to know what his status is, so that you can do what is necessary to protect his health not just now, but for the...
  12. pain*in*my*gut
    OMG, this is MY SON!! I took him to get his finger pricked last winter because he was complaining of headaches, feeling "barfy", and he was so pale! The minute the nurse got out the lancet to prick his finger for a H&H, he jetted off the exam table, ran out of the exam room, screamed thru the waiting room and was headed for the car in the parking lot...
  13. pain*in*my*gut
    I posted this on a different forum, but I thought I would re-post it here... These are my thoughts about doing the biopsy on a child. If my son does have Celiac disease , I want to be able to give him a solid reason if I am going to make him gluten free for the rest of his life. Sure, while he is little I can make sure he eats gluten free, but as he...
  14. pain*in*my*gut
    Yeah, I figure I have it, too. Gosh, I have such mixed emotions about this. On one hand I am SO RELIEVED to finally know what is wrong with me, but on the other hand IT SUCKS! I love cereals, breads, cupcakes, cookies, pasta....basically all things gluten. I have been trying all of the gluten-free stuff, and it's really not bad, it just going to be a...
  15. pain*in*my*gut
    Yes, you sound like you could have Celiac. If you want a concrete diagnosis, you must remain on gluten and get the blood tests and follow-up biopsy. If you go off of gluten before you get the testing, the results could be falsly negative and you won't get an accurate result. I have all of the symptoms as you! My sed rate was normal, but my CRP was very...
  16. pain*in*my*gut
    So, the nurse just called and told me that my HLA DQ 2 was positive, but my HLA DQ8 was negative. From what little I have been able to research, you don't have to have both of them positive to still be a candidate for Celiac Disease, but you have to have at least one, right? I know that having the genes does not mean that I have Celiac, it just means that...
  17. pain*in*my*gut
    Wow! Yes, you do sound like you have Celiac. You must go back on gluten NOW if you want an official dx! The lab tests and the biopsy for confirmation will NOT be accurate if you have been gluten free for any period of time before the tests (especially the blood tests). I was gluten free for 2 weeks before my GI ordered a scope, so now I am forced to eat...
  18. pain*in*my*gut
    These are my thoughts about doing the biopsy on a child. If my son does have Celiac disease , I want to be able to give him a solid reason if I am going to make him gluten free for the rest of his life. Sure, while he is little I can make sure he eats gluten free, but as he grows up he is not going to have a reason to stick to the diet. He may think I...
  19. pain*in*my*gut
    This, exactly! Good luck....I really hope you get some answers soon. There is nothing worse that being ill and not knowing what is wrong!
  20. pain*in*my*gut
    Two thoughts....have you seen a rheumatologist? When you mentioned the dry/painful eyes, that can be a symptom of Sjorgen's Syndrome (which is a common auto-immune problem that Celiacs are more prone to get). There is a blood test for that, as well as rheumatiod arthritis, lupus and all the other autoimmune diseases that could cause the dry eyes and joint...
  21. pain*in*my*gut
    The brain fog caught my eye, too. Sometimes I feel drunk after eating gluten! Get the blood tests....that would be a good place to start!
  22. pain*in*my*gut
    Amanda....both your Antigliadin antibodies IgA and IgG were positive! You are at the very least gluten-intolerant based on those results alone. IgE is the antibody class that is involved in allergic reactions, so you could be allergic to just about anything and that one will be elevated. You do not have to have an elevated tTG to have Celiac Disease...
  23. pain*in*my*gut
    Those are the older antibody screen tests. Many labs/doctors are switching over to the DGP (Deamidated Gliadin Peptides)antibody test. It is supposed to be more sensitive for Celiac than the older ones. Fatigue after eating gluten is a HUGE symptom for me! I almost feel drunk after I eat a piece of bread sometimes (but not every time....go figure...
  24. pain*in*my*gut
    This, exactly. You need to be on gluten for a minimum of 3-4 weeks before testing (according to my doc), and some even recommend 3-4 months. If you want to make sure you get accurate results, there is no way around it.
  25. pain*in*my*gut
    You mention that you had been all organic for 2 years, did her diet have any gluten in it? The thing that crossed my mind is if you had her on a really healthy, low gluten diet before the blood tests, it may have caused them to be negative. Have you noticed any increase in symptoms after she eats wheat, specifically? It might also be helpful to know...
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