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Is It Possible To Have Inaccurate Biopsy?

lharper

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lharper Newbie
lharper
Posted

My daughter was diagnosed with Celiac disease in November of 2008. It started because she has Type 1 Diabetes and I asked them to test her for Celiac due to some symptoms she was showing. Well, the initial blood work came back and her Ttg level was greater than 100. This was followed up by a biopsy that they said confirmed the diagnosis. Well, at the 6 month follow up they ran her blood work and it came back that her Ttg was at 1.2 Even the doctor was a little surprised it had came down that fast. I know the chances are she really does have Celiac and I accept that, but the fact that it came down so fast made me wonder if it is at all possible that the original blood test/biopsy could have been wrong and/or could she have something else and not Celiac? I just would hate for her to have to be gluten-free for the rest of her life for nothing... thanks!

Leanne

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lovegrov Collaborator
lovegrov
Posted

It's my understanding that Ttg can come down pretty darn fast, particularly in a child. I was in my 40s and mine went from 200 to below 20 in less than 6 months.

It's HIGHLY unlikely that both the blood test and the biopsy would be false positive. And if her symptoms got better, that just adds to the evidence.

I'm not a doctor, but I'd say she has celiac disease.

richard

lharper Newbie
lharper
Posted
  • Author

Right, I am pretty sure that she does have Celiac as well. But I had read so many posts on here previously about how long it usually takes for the Ttg to come down so it kind of made me wonder. -l- I guess a little wishful thinking on my part.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

If she has been gluten-free for the last 6 months, then her TtG is SUPPOSED to come down.

In fact, I have always read on this site that if you have been gluten-free for more than a week, your blood tests will likely be a false negative.

If you are not eating gluten, you will not be producing antibodies against it, and you will be unlikely to be producing gluten-induced auto-antibodies.

The gluten-free lifestyle is getting easier and easier, and I really think that things will continue to get even better, as more and more people are finally being diagnosed.

If it makes you feel any better about things, when we challenged my middle kid and gave him gluten, he was crying (from the stomach pain) on the toilet a few hours later, and he said, "I never want to eat gluten again!"

He was 9 years old. He has never even wanted to cheat since then.

It helps that he knows that I will (easily) find a gluten-free recipe for anything he sees that he would like to eat, and within a week, I'll make it for him if he asks.

tarnalberry Community Regular
tarnalberry
Posted

generally, it's more likely that someone having a hard time lowering their antibodies is going to post them. so, you've got a skewed sample. and some of us never have gotten a retest.

ravenwoodglass Mentor
ravenwoodglass
Posted

No the original tests were not wrong. You are doing a great job of keeping her gluten free! Keep it up.

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    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
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      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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