Jump to content

pain*in*my*gut

Advanced Members
 View Profile  See their activity

  • Posts

    186

  • Joined

  • Last visited

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by pain*in*my*gut

  1. pain*in*my*gut
    Yes! I have been trying to wrap my head around all of this stuff, too. I agree with #3, but it may be difficult to find a doctor who would acknowledge gluten intolerance without the usual proof. There is a huge information gap amongst doctors regarding non-celiac gluten intolerance. I have decided that I don't need a doctor to tell me I have a...
  2. pain*in*my*gut
    Wow....I would be very skeptical of this dx, too! Your dad has a positive family history, positive blood work, symptoms (the low iron in a man is a BIG one), abnormal looking villi (huh? fat villi? Could they have been blunted and the inexperienced pathologist says they are "fat"...WTH??) Also, one month of eating gluten before a biopsy may not have been...
  3. pain*in*my*gut
    Wow, you have really been thru it, huh? I think there are several people on here that have negative testing but have a very strong response to gluten. There is a huge spectrum of gluten intolerance, and Celiac disease is just one of the manifestations of it. Just because your tests are negative does not mean that you don't have a problem with gluten...
  4. pain*in*my*gut
    Sorry you haven't heard back yet...grrr! At least rum and tequila are gluten free! Stay safe!
  5. pain*in*my*gut
    No, it's not irrelevant. It is entirely possible that you do have something going on, and I would go ahead with the biopsy, especially if you are symptomatic. Immunology is a very tricky science, and it is wrought with inconsistencies and the unexplained. I used to work in the field (I'm a med tech), and sometimes it's impossible to get a perfect picture...
  6. pain*in*my*gut
    Sweet smelling breath can be a sign of diabetes (which is a common complication of Celiac). Get him tested asap (by a new doc, fire the current one). Keep us posted!
  7. pain*in*my*gut
    This, exactly. He should be tested for vitamin and mineral deficiencies in addition to the Celiac ABS. I wouldn't worry about what the doctors say about whether or not he is a "true" Celiac. You know that he was terribly ill when eating gluten and now he isn't, there is your dx right there. Explain to him that it is normal to be nervous and scared...
  8. pain*in*my*gut
    Hi Jennie (I'm Jenny)! I have found that there really is no direct correlation to my onset and/or severity of symptoms and when I eat gluten. I can have a bagel one morning and be fine, and the next morning I eat one I am blown up like a balloon. Or, I can eat pasta for lunch and feel drunk and sickly tired all afternoon, and the next day I only get really...
  9. pain*in*my*gut
    The Celiac panel you had done seems a bit strange to me. They didn't test you for any of the anti-gliadin anitbodies or deamidated gliadin peptide antibody. These tests (more so the DGP) are more likely to show a gluten intolerance, and may be positive before the tTG. The EMA and tTG are indicative of villi damage to the small intestine. Yes, you most...
  10. pain*in*my*gut
    It is very unlikely that the antidepressant that you have just started had anything to do with the fact that you felt better today. It generally takes at the very least 2 weeks (usually closer to 4-6 weeks) for them to kick in. Do you keep a food journal? It might help you pinpoint what you eat and when you have the symptoms. Try it for a few weeks...
  11. pain*in*my*gut
    Wow. Just....Wow. This kind of medical ignorance makes me sick to my stomach. My doctor, who I love dearly, unfortunately told me the same FALSE information about getting my 6 year old son tested. No need to do it unless he is showing symptoms or failing to thrive. WRONG! Here are two things you can print and take to your doctor: People with...
  12. pain*in*my*gut
    I am so sorry you didn't get anything conclusive! From what I have researched about the DGP test, it is considered to be a very valuable test in children whose tTg is negative. DGP antibody apparently becomes positive before the tTG does, so it can potentially detect Celiac before damage has occured in the gut. I would really push the doctor to order...
  13. pain*in*my*gut
    Good for you, Marc! Remember, doctors work for us, and unfortunately sometimes we have to tell them exactly what we want. I have learned this the hard way. You have to be your own advocate. Good luck!
  14. pain*in*my*gut
    I care! Glad you are on the track to getting some answers. It sounds like your doc might be a good one, which is so refreshing to hear these days! I have balance issues, too. I cannot turn around too fast (like in the kitchen, from the stove to the sink) without loosing my balance. If it happens in public, like the grocery store, I always look...
  15. pain*in*my*gut
    Josh, good catch on the gluten free effect on the antibody testing. When I read his post it said "last year" so I assumed he had the testing done last year before he went gluten-free. But if he meant the the tests were ordered last year and he just now got the $$ for the testing, then heck yeah...those tests are useless. Maybe he will come back and clarify...
  16. pain*in*my*gut
    OMG, really? You need to find a new rheumy!!! Having an autoimmune disease is frustrating enough even with a good doc! Holy crap, I can't believe 2 docs blew you off like that. That's disgusting. Period. I am so glad that link helped! I never know if I am being too link-happy when I reply with answers. I am a google freak and I believe we all...
  17. pain*in*my*gut
    Do you think that you would be able to do a gluten challenge and go through testing again? There is a newer blood test, DGP (deamidated gliadin peptide) ABS that is supposedly equal to or better than the tTG ABS for screening for Celiac. My DGP was super high, but my tTG was negative. I have the genes and all the symptoms, so it's likely I have Celiac...
  18. pain*in*my*gut
    I would say if you are feeling a lot better, you have your answer. From what I have read about Celiac genes is that 30% of the normal population has them, but not all of those people will get Celiac. Maybe somebody who has had more extensive genetic testing can help you with your odds.
  19. pain*in*my*gut
    This is good to know....I think I will have Grandpa take my son when he gets his blood drawn. He seems to act "braver" when Papa is around and mommy isn't.... Glad you were finally sucessful! Keep us posted on the results!
  20. pain*in*my*gut
    Hi Jen (I'm Jen, too)! It sure does sound like Celiac, doesn't it? Are her cousins gluten free due to confirmed Celiac? That would increase the odds of your daughter having it right there! How long ago were the labs run? And yes, get a copy and see exactly what tests her Celiac Panel consisted of. The older anti-gliadin ABS are not as accurate in children...
  21. pain*in*my*gut
    You have Sjorgen's? That could be the cause of every one of your symptoms... Open Original Shared Link Many other conditions can cause flattened villi, not just Celiac disease. However, you could have Celiac and just be one of those people who have negative bloodwork. Keep eating gluten free and give it several weeks to several months and see...
  22. pain*in*my*gut
    The only antibody tests that I see are the total IgA. Is that all they did as far as antibody testing for Celiac? You should have had at least one of the following: tTG, DGP, EMA, anti-gliadin antibodies. Were any of those done? Because genes alone will not give you a dx of Celiac without any other testing.
  23. pain*in*my*gut
    You could request all of your test results (it's good to have all of the info). Regardless, you need to have further investigation (like a scope) to rule in/out celiac. You tested positive for an antibody to an enzyme that is being made in response to gluten that causes tissue damage to your small intestines (tTG). This test is sensitive, but it's not...
  24. pain*in*my*gut
    Ditto what Mushroom said. DGP is the current choice for most docs and labs over the older, less specific gliadin antibody screens. For the gluten challenge, you will need to be eating gluten for at least a month or two. Most docs say 3-4 is optimum. Good luck!
  25. pain*in*my*gut
    Josh...your post cracked me up! I agree with everybody else. Get tested now. It's worth it to know, for so many different reasons! Good luck!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.