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rez

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by rez

  1. rez
    The doctor's office is supposed to be calling this afternoon. There's a big knot in my stomach as I type. I'll try to answer your questions as best I can. The big bummer thing about Celiac is it seems there is such a gray area. The total blood panel is: AGA Igg AGA IgA Total IgA serum tTG EMA The two most specific to Celiac...
  2. rez
    I totally feel for you. We have had a similar experience. I would do the diet for 6 months and then re-do the bloodwork. If the tTG drops, you will know it's Celiac. Genetic testing would also help. DQ2 and DQ8 are the recognized Celiac genes.
  3. rez
    tTG and EMA are anti-self. The others show antibodies to gluten.
  4. rez
    Sorry, for all the errors in the previous post. I was in a hurry. Hope you can read through all the mess-ups. :)
  5. rez
    Wow. What a great thread and they are giving you a lot of great information. Your doctor seems very good and thorough. Compared to a lot, he seems as if he's looking for the subtle details which is good. Most doctors wouldn't have even thought to look for Celiac in and asymptomatic patient. I would give him that much. ABSOLUTELY DO NOT START A GLUTEN...
  6. rez
    I'm not saying that you don't have Celiac, but I am saying that you are 100% right that you were NOT properly diagnosed. I can't believe the ignorance in the medical community, and this was a GI specialist! That's crazy and I would be so angry. The two most specific tests to Celiac are the tTG and the EMA with the EMA having almost a 100% accuracy rate...
  7. rez
    I highly suggest the biopsy. It's not invasive at all and it's best to confirm what's going on inside. Also, I would highly recommend Celiac Disease, A Hidden Epidemic, by Dr. Peter Green. It's the best book out there. Read it and educate yourself as you are your childs number one advocate. I would not start the diet until you find out what blood test...
  8. rez
    Sorry, I think there was a misunderstanding. Ann sent me a PM to explain some things to me. Basically, she explained that they can sometimes see folds or scalloping of the duodenum, but the pathologist looks for the microscopic damage done to the villi. Good luck.
  9. rez
    I'm so confused. I was under the impression that they could see abnormalities/scalloping in the folds and mosaic type patterns in the duodenum, but I thought our doctor told us they need to take samples to look at the villi because the damage could be microscopic. If they can diagnose based on what they see, why do they take biopsies at all? Does everyone...
  10. rez
    I'm so glad that you found a good doctor. It helps so much when the physician is well educated. Good luck with everything.
  11. rez
    I CANNOT STRESS ENOUGH HOW IMPORTANT IT IS TO FOLLOW UP WITH AN ENDOSCOPY IF THAT'S WHAT YOUR DOCTOR RECOMMENDS. OUR SON'S TTG WAS SLIGHTLY ELEVATED. IT SHOWS THAT THE SMALL INTESTINE IS DAMAGED, BUT YOU NEED TO FIND OUT WHAT THE CAUSE OF THE DAMAGE WAS. TTG IS NOT 100% SPECIFIC TO CELIAC. I FELT AS A PARENT, I OWED IT TO MY SON TO FIND HIM A PROPER DIAGNOSIS...
  12. rez
    A POSITIVE BLOOD TEST IS MOST ABSOLUTELY NOT AN OFFICIAL DIAGNOSIS. I'M SORRY, BUT THERE ARE MANY OTHER CONDITIONS THAT CAN ELEVATE AN IGA TEST. THE MOST SPECIFIC FOR CELIAC ARE EMA AND TTG. YOU MOST CERTAINLY SHOULD SEE THE PEDS GI AND I ABSOLUTELY WOULD NOT START A gluten-free DIET UNTIL THEY HAVE FURTHER EVALUATED YOUR DAUGHTER. GOOD LUCK. I'M SORRY...
  13. rez
    I agree about the EMA. It's way more specific, but not as sensitive. That is why they use the tTG to screen and then follow up w/ the EMA and biopsy.
  14. rez
    Forgot to ask, it's really important to find out which blood test was positive. I would only trust the EMA to be 100% Celiac.
  15. rez
    I feel so bad for you. I urge you to get a better, more competent doctor. If you had all that damage inside, they need to find a root cause and get you better! That doctor is definitely out of it if he thought he was telling you about your villi from the scope. It's scary. We go to the University of Chicago and see a world known GI. It's amazing when...
  16. rez
    The current screen for Celiac that the U of Chicago uses is a total IgA and a tTG. Yes, the total serum should have been done. The high IgG means nothing unless you are IgA deficient. If you are not IgA deficient, the tTG is the best test. It's the most specific and sensitive, although it is not 100% either. If this test is positive, they will do a...
  17. rez
    Just re read your post. LOOK DEEPER!! Especially if you're still not feeling well. Have them biopsy for H Pylori, EE, and Crohn's too. My son had two negative H Pylori blood tests, but the doctor said those are very unreliable. Good luck and I feel for you.
  18. rez
    Correct me if I'm wrong, but I don't think there is any way that a doctor can see flattened villi with the naked eye. That's impossible since it's microscopic damage that needs to be looked at by a pathologist under a microscope. Postive blood work can mean other conditions, unless your EMA was positive. What test was positive? If it was anything other...
  19. rez
    Have them biopsy the rash. A gluten challenge is done for the purpose of a biopsy of the small intestine, not blood work. The small intestine shows damage quicker than the blood. You could also have blood work done and if it's postive, then you would have a better idea. If it's negative, it could be false negative. Good luck.
  20. rez
    The test that you had come back weak positive is the least reliable test when diagnosing Celiac. I would definitely research it more yourself and find a new doctor. Those tests aren't even used when diagnosing Celiac anymore. An IgG can mean a lot of things or nothing at all and it is not specific to Celiac at all. The two most specific tests are tTG...
  21. rez
    Maybe the stress and anxiety itself is causing the stomach pain. When I'm stressed, I have the same problem with the constipation. I think everyone's body is different. Most people when anxious get "D", but the opposite can happen as well.
  22. rez
    I think the big thing to consider and check out is WHICH test was positive. The EMA and tTG show autoimmune/anti-self reactions and are very specific to Celiac. An elevated IgA and/or Igg could mean gluten sensitivity and/or a whole other condition.
  23. rez
    Thought of one other thing. Celiac disease is a life long condition that can make it difficult to get insurance. Our GI said they don't diagnose unless they are 100%. A lot of conditions and diseases can get better on a gluten free diet and it's not specific to only Celiac. I know it's frustrating, but the doctors consider it a very serious, life long...
  24. rez
    Hi Tina, I haven't seen or talked to you in a while. I'm confused as to what brought you to Iowa City. Last time I saw you I thought both of the girls and yourself were doing great on the diet. So sorry you've had to endure all of this. We heard very discouraging comments about the doctors in Iowa City. Many people had negative experiences there, so...
  25. rez
    I agree w/ previous posters. I would ask which tests were run and which test was abnormal. There are two blood tests that are very specific to Celiac and two others which can mean many other disorders as well. Good luck.
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