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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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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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