<<Disclaimer: Verify this information before applying it to your situation.>>
Initial Question:
My teenager son showed positive results on the IGG and IGA and then normal on the tTG. He has an appointment with a gastro tomorrow. His
only symptom is being slightly underweight (long and lean). The testing came about sort of as a fluke. I am a biopsy diagnosed celiac. Is there anybody out there who initially had mixed results like this? If so, what was your eventual outcome?_________________________________________________________________________________________________
My son did have an endoscopy/biopsy last week. The result was negative and a new (full) panel of bloodwork all came back negative. Hmmm. I'm not completely convinced one way or another. There are several research/article links listed at the end of this summary. I haven't had a chance to read all of them thoroughly (blame this on said teenager and his "myspace" addiction and chronic evening lightening storms). But I intend to take a really long, hard look at everything. They did find "moderate" reflux damage in the esophagus. Again, hmmm.
My 'gut instinct' is what basically what many of the responses point to: he just doesn't have a full-blown case yet. It's really tough to get a 14 year old boy to go gluten free without overt symptoms. If I could make him do it - I would. I asked the gastro. about doing so - and he would rather that we instead put him on "Nexium" to bring down the reflux damage and is worried that if I put him on a gf diet that he won't get enough calories. (I didn't want to argue with him at this point about how technically silly that is...). This is the first time I've dealt with this guy. I'm getting a copy of the pathology report and will further research and watch (as I have for the past 12 years) and wait and re-test at some point.
Thank you so much to everyone for stepping up and giving me such great information within such short notice. I was really impressed with the depth of the responses.
-Laurie
The first response isn't summarized per se, because I couldn't figure out a way to narrow it down without taking away from it's essential message:
False Negative Serological Results Increase with Less Severe Villous Atrophy
Dig Dis Sci. 2004 Apr;49(4):546-50 Celiac.com 08/27/2004 - Dr. Peter Green and colleagues at the Department of Medicine, Columbia University College of Physicians and Surgeons, New York, New York, conducted a study designed to determine the sensitivity of the various
serological tests used to diagnose celiac disease. To do this they looked at 115 adults with biopsy-proven celiac disease who fulfilled strict criteria which included serological testing at the time of their diagnosis, and a positive response to a gluten-free diet. Out of those studied, 71% had total villous atrophy, and 29% had partial villous atrophy. Serological results indicated that only 77% of those with total and 33% of those with partial villous atrophy actually tested positive for celiac disease, and it did not matter whether the patients presented with classical or silent symptoms. All patients who were positive for anti-tissue transglutaminase had total villous atrophy.
The researchers conclude: "Seronegative celiac disease occurs. Endomysial antibody positivity correlates with more severe villous atrophy and not mode of presentation of celiac disease. Serologic tests, in clinical practice, lack the sensitivity reported in the literature." from www.celiac.com Copyright A9 1995-2004 Scott Adams
Secondly, if you are on a g.f. diet, there is probably less gluten consumed my members of your household that a non-celiac household. The reduced amount of gluten may be enough to skew the test results. (ABSOLUTELY THIS COULD BE THE CASE HERE.)
In other words:
"Out of those studied, 71% had total villous atrophy, and 29% had partial villous atrophy. Serological results indicated that only 77% of those with total and 33% of those with partial villous atrophy actually tested positive for celiac disease, and it did not matter whether the patients presented with classical or silent symptoms."
Only 3/4 of those w/ total villous atrophy (flattening) had positive blood tests, while only 1/3 of those w/ partial villous atrophy tested positive
and it didn't matter if they had obvious symptoms are not. Despite what doctors have been led to believe, negative blood tests can't be used to rule OUT celiac.
I found an article last week by Dr. Murray at Mayo & described of the levels of damage.
1. Healthy, undamaged villi.
2. Infiltrated villi. The villi are still standing up long and
straight, but the is an increase in the surface lymphocytes.
3. Partially-shortened villi. The villi are somewhat short and
stubby, and the crypts (the basement parts of the villi) are
expanding and becoming inflamed.
4. Flattened villi. This is the typical or classic form of CD, in
which the villi are destroyed.
5. Burned-out villi. This can occur in older celiacs, where the
villi don't necessarily have the ability to recover on a GF diet.
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the test is only a number...what's high for one person is low for another.
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He needs a biopsy. All those tests have false positives and false negatives.
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I had mixed results and I have celiac disease. One of my tests came back negative (my IgA).
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I had only 1 positive test - the tTg - all other five results were perfectly normal. My biopsy showed severe damaged villi. And the doctor didn't even want to do the test because he said my blood work did NOT indicate Celiac.
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Yes, I had mixed results on my tests. One part (and I don't remember which one) said I was negative; one part said mild positive, and the other part said strong positive. My doctor said, based on those results, plus my symptoms (gastro distress, acid reflux, bloating, headaches, the DH rash), to try the GF diet. I did, with immediate results.
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I assume that when you say IgG and IgA you mean the antigiadin antibodies. These are the least specific for CD but the most sensitive. They can indicate gluten sensitiviy. tTG is very specific for villous atrophy. I have met many people with mixed results. One person I know very well had total villous atrophy (in fact some doctors thought she had lymphoma) but only the IgG AGA was positive.
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It really doesn't matter which test your son was positive on. Many people will show positive on only 1 of the tests. A lot of studies are showing that when the tTg is positive, there is very little doubt that the person has CD; however, there is a high incidence of false negatives. When the intestine is less severely damaged, the tTg may be negative as much as 70% of the time... I believe that in early stages of the disease, or where there is less damage, the antigliadins will show up much earlier than the tTg.
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My son tested negative on every blood test but the anti-endomysial. We went ahead with an endoscopy and his GI doctor diagnosed him with celiac.
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AGA-IgG and IgA antibodies indicate your son's body is fighting wheat. They probably didn't check tTG- IgG or IgM so maybe he has them and they should have checked more parts of the immune system to find them. Or maybe he doesn't have villi damage. The villi are only one place where damage can occur according to some researchers. And for sure they didn't check his gluteomorphin antibodies. For explanations, go to the "testing" page of www.glutensensitivity.net/testing
Gluteomorphin antibodies are to the larger gluten molecule and AGA are to gliadin, which is a part of the gluten molecule. Some folks have both antibodies and others have one or the other. He has AGA antibodies, so you already know he is reacting to the wheat. tTG is often specifically related to villi damage. Again, he may not have villi damage. He may have damage in some other area(s) of his body. It can be just as serious.
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My understanding is that the tTG goes up after you're already sick for awhile. If he's not sick yet, he can be checked every few years and be on the lookout for it developing.
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The blood tests are just a pointer. I am a biopsy-confirmed celiac. My celiac panal came up "equivocative." IGA and IGG were slightly elevated, but in the range of normal. TTG was at the extreme low end of positive. My GE said he was surprised tp find CD when he did the upper GI. He said that the appearance was very patchy.
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http://jccglutenfree.googlepages.com/
http://www.aafp.org/afp/20021215/2259.html
http://www.enterolab.com/StaticPages/EarlyDiagnosis.htm
http://ezinearticles.com/?expert_bio=Dr._Scot_Lewey
http://forums.delphiforums.com/celiac/start
*Please provide references to back up claims of a product being GF or not GF*
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