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biopsy was neg...but endo not sure, ???

Discussion in 'Parents of Children with Type 1' started by sweetkid4, Apr 4, 2013.

  1. sweetkid4

    sweetkid4 Approved members

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    DS had bloodwork come back with possitive antibodies for celiac, so we did the endoscopy. A biopsy was taken of the esophogus, stomach, and small intestine. The biopsy was neg for celiac...the GI said he had inflammtion in his stomach and suggested that we put him on Prilosec.

    I called the endo to report the results. But he is now questioning if the part of the intestines they biopsied was maybe not showing damage at this time, but maybe another part of the intestine may be?????

    Endo wants us to try GF for a while....but my husband and I are extremely reluctant to go GF with out more evendence.

    We were relieved after the endoscopy...... VERY confused now.

    Any suggestions????
     
  2. Lakeman

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    There is more than one blood test for celiac. If one has blood tests and all of them come back positive then they are 90% accurate and IMO one would be wise to begin a GF diet. The inaccuracy is often due to people who DO have celiac but show up as false negative because they have not been eating gluten. So really the number of people who test positive on blood tests for celiac and need to eat GF is higher than 90%.

    On the other hand, if your child has only had one type of blood test then the paragraph above may not apply and the accuracy of the test may be lower.

    P.S. while the evidence that gluten harms people with celiac is undeniable there is still some pretty good evidence that gluten and lectins (and even wheat fiber) are harmful to a lesser degree for everyone.


    P.P.S. Prilosec reduces stomach acid (which presumably is a factor in the stomach inflammation). However the normal and natural state of affairs for one's stomach is that it should have acid to properly digest food (especially protein). With less stomach acid one may not have proper digestion. You may wish to seriously weigh the cost/benefits of prilosec after some due diligence. If there is excess acid then perhaps there is a weak LES valve resulting in acid coming up from the intestine. There are alternatives to lifetime purchases of prilosec and the use of prilosec is not even all that supported by evidence for many people despite the fact that it is so highly prescribed. In my case, which is different, my doc wholeheartedly supports my decision to take magnesium alternating with zinc with meals to reduce stomach acid. These have none of the same side effects and are needed by one's body anyway.
     
    Last edited: Apr 4, 2013
  3. sweetkid4

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    The blood tests that came back possitive was EMA and tTG...I think i got those right, lol
     
  4. MommaKat

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    With those tests both coming back positive, you have a definitive diagnosis without the biopsy, and frankly, getting a positive biopsy is beyond tricky. They have to biopsy exactly the right spot - it's a GI version of the needle in the hay stack. That fact that there is inflammation in combination with positive antibodies, it's worth going GF and seeing how your kiddo is feeling in two weeks, four weeks, and six. You'll likely be incredibly surprised at just how much better your kiddo feels.

    I'm curious - what's the resistance to going gluten free? You don't have to do it whole family, though that certainly makes it easier (IMO of course), and less likely that you'll have cross contamination. My dd was positive for one test, not the other. We went GF, and she's lost all the puffiness in her face, the tummy aches that plagued her for years, frequent headaches are gone - it was so worth the move to GF, which does take work, because her quality of life is so much better.
     
  5. Beach bum

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    Have you had more than one blood test with a positive reading?
    While biopsy is considered the gold standard of testing, as PP stated, it is the needle in the GI haystack. When I was tested, they took 12 biopsies from the various parts of the stomach. I had one because my first blood test was questionable, the second one wasn't but I was having unexplainable GI issues. For me, it confirmed that I did not have it (ended up being something else).
    You can ask the GI for another series of blood work, start the prilosec and see what happens. In addition, once the blood work is done you can start the GF diet and see how it goes.
     
  6. Darryl

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    Wendy,

    As long as the blood test is positive (and you could try different labs for the test if you really want to be SURE), there is really nothing to be confused about. A positive TTG combined with a positive EMA is, with very rare exception, a diagnosis of celiac. Your endo is trying to tell you this through his suggestion of the GF diet and being honest with you that a negative biopsy proves nothing other than that the damage didn't happen yet - or maybe it did already happen but the biopsy was a false negative.

    What was the TTG in the blood test? If over 100, celiac damage is virtually 100% at some point. If under 20, then it could be a gray area. If between 20 and 100, the chances are pretty good that damage will develop.

    If you didn't see my earlier post - there are a number of studies that have shown that untreated celiac can lead to significant health problems because elevated celiac antibodies can cause health problems well beyond the GI tract.

    One advantage of following your doctor's advice to eat GF is that if you repeat the test a year from now and the antibodies have subsided, you have proof of celiac and the benefits of going GF without waiting for actual damage to occur.

    Also if you are worried about the GF diet, it is really nothing to be worried about, whereas perpetually elevated celiac antibodies are a great cause for concern.
     

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