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Biopsy Question
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I'll keep this short and sweet. My son had a biopsy (resulting from severe reflux) which showed blunted villi and lymphocytes however his blood tests were negative with the exception of low IGA and IGG. The GI said it was nothing to worry about and to resume a normal diet. Since going gluten-free my son has solid poops and is much happier. We are even weaning him off one of his reflux meds. The pediatrician diagnosed him with celiac and is sending me for a second opinion. My question is: what is a "positive biopsy"? What exactly does it show? I understand the bloodwork is not accurate in making a diagnosis but what does the biopsy have to show for it to be celiac? Thanks!

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I'll keep this short and sweet. My son had a biopsy (resulting from severe reflux) which showed blunted villi and lymphocytes however his blood tests were negative with the exception of low IGA and IGG. The GI said it was nothing to worry about and to resume a normal diet. Since going gluten-free my son has solid poops and is much happier. We are even weaning him off one of his reflux meds. The pediatrician diagnosed him with celiac and is sending me for a second opinion. My question is: what is a "positive biopsy"? What exactly does it show? I understand the bloodwork is not accurate in making a diagnosis but what does the biopsy have to show for it to be celiac? Thanks!

Blunted Villi is pretty much an indicator for Celiac (although other causes, Celiac is primary), coupled with positive dietary result from the diet are diagnostic.

How long was your son gluten free when the blood test was take? Being gluten free will result in inaccurate testing.

Is there a family history with digestive issues, diabetes, fibro...?

Back again...Also blood testing is not always accurate in children under the age of 5.

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Blunted Villi is pretty much an indicator for Celiac (although other causes, Celiac is primary), coupled with positive dietary result from the diet are diagnostic.

How long was your son gluten free when the blood test was take? Being gluten free will result in inaccurate testing.

Is there a family history with digestive issues, diabetes, fibro...?

He was not gluten-free at the time of the testing.

I tested positive to one of the gluten intolerant markers but neg for celiac and my biopsy was neg. I know it's from my side of the family though.. I have a celiac aunt. I have chronic bouts of diarrhea which lead to my biopsy but that was neg. I also have two other older siblings and I wonder about getting them tested. My oldest has chronic constipation, complains of stomach aches and in six year old lingo "burps into her mouth" which I suspect is acid reflux.

So do you think the shortened villi is enough coupled with a positive response to the gluten-free diet is enough to diagnose? Also, what else can cause the blunting of the villi?

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He was not gluten-free at the time of the testing.

I tested positive to one of the gluten intolerant markers but neg for celiac and my biopsy was neg. I know it's from my side of the family though.. I have a celiac aunt. I have chronic bouts of diarrhea which lead to my biopsy but that was neg. I also have two other older siblings and I wonder about getting them tested. My oldest has chronic constipation, complains of stomach aches and in six year old lingo "burps into her mouth" which I suspect is acid reflux.

So do you think the shortened villi is enough coupled with a positive response to the gluten-free diet is enough to diagnose? Also, what else can cause the blunting of the villi?

With your family history, a positive biopsy and positive dietary response ----that's three out of the four criteria.

It appears that you have your answer.

Also, it recommended that you (they) go off dairy for a month or two. Almond milk would be my choice. After some healing takes place, cows milk can be often re-introduced successfully.

There are other causes of blunted villi, but very rare. Gluten it the major cause, as in conjunction with your childs symptoms.

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He was not gluten-free at the time of the testing.

I tested positive to one of the gluten intolerant markers but neg for celiac and my biopsy was neg. I know it's from my side of the family though.. I have a celiac aunt. I have chronic bouts of diarrhea which lead to my biopsy but that was neg. I also have two other older siblings and I wonder about getting them tested. My oldest has chronic constipation, complains of stomach aches and in six year old lingo "burps into her mouth" which I suspect is acid reflux.

So do you think the shortened villi is enough coupled with a positive response to the gluten-free diet is enough to diagnose? Also, what else can cause the blunting of the villi?

I'm thinkin', you're lookin' at, a gluten free household....

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I'll keep this short and sweet. My son had a biopsy (resulting from severe reflux) which showed blunted villi and lymphocytes however his blood tests were negative with the exception of low IGA and IGG. The GI said it was nothing to worry about and to resume a normal diet. Since going gluten-free my son has solid poops and is much happier. We are even weaning him off one of his reflux meds. The pediatrician diagnosed him with celiac and is sending me for a second opinion. My question is: what is a "positive biopsy"? What exactly does it show? I understand the bloodwork is not accurate in making a diagnosis but what does the biopsy have to show for it to be celiac? Thanks!

Having a low IGA and IGG would make the blood tests inaccurate. The biopsy shows villi damage, which would suggest Celiac, along with him doing better off it.

Dairy and soy intolerance can cause villi damage, along with a few other things, but gluten is the most common cause.

http://www.celiac.com/articles/50/1/Main-Causes-of-Flattened-Villi/Page1.html

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He was not gluten-free at the time of the testing.

I tested positive to one of the gluten intolerant markers but neg for celiac and my biopsy was neg. I know it's from my side of the family though.. I have a celiac aunt. I have chronic bouts of diarrhea which lead to my biopsy but that was neg. I also have two other older siblings and I wonder about getting them tested. My oldest has chronic constipation, complains of stomach aches and in six year old lingo "burps into her mouth" which I suspect is acid reflux.

So do you think the shortened villi is enough coupled with a positive response to the gluten-free diet is enough to diagnose? Also, what else can cause the blunting of the villi?

What test was positive? The only test that might be positive without you being celiac is the old anti-gliadin IgA. Biopsies can miss patchy damage so you may be celiac. I hope you're strictly gluten-free.

As for your son, have your doctors said anything about common variable immune deficiency (CVID)? Celiac is a common misdiagnosis because one of the symptoms is villous atrophy. It's possible he's celiac and gluten-free may help, but you need to talk to your doctor about a follow-up biopsy after he's been on the diet for a while, especially if symptoms continue. You may also want to ask for a referral to an immunologist.

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What test was positive? The only test that might be positive without you being celiac is the old anti-gliadin IgA. Biopsies can miss patchy damage so you may be celiac. I hope you're strictly gluten-free.

As for your son, have your doctors said anything about common variable immune deficiency (CVID)? Celiac is a common misdiagnosis because one of the symptoms is villous atrophy. It's possible he's celiac and gluten-free may help, but you need to talk to your doctor about a follow-up biopsy after he's been on the diet for a while, especially if symptoms continue. You may also want to ask for a referral to an immunologist.

Thanks for the helpful info. I actually went back and looked at the bloodwork for myself and my son. MMy DQ2 was a "partial positive" and my iron is low.. could I really have celiac?

Also, I called my son's doc and obtained the copy of the biopsy which states "the villi are blunted 50% and there is spotty intraepithelial lymphocytosis whicy by itself would suggest celiac disease. Clinical correlation is required." So since his DQ2 and DQ8 are negative the GI diagnosed him with NOTHING!!! How can this be? Also I read that with CVID your symptoms will not improve on gluten-free diet and my son has improved greatly. Is this accurate?

Thanks again!

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Gotcha! I thought you meant an antibody test. DQ2 increases risk for celiac, but is not diagnostic because something like 30% of the US population has a DQ2 gene. The low iron is something a lot of us get, but it can come with inflammation from gluten intolerance too. There are false negatives on testing but you're probably gluten intolerant rather than celiac. Gluten can still make you miserable!

I think you're right about CVID and not improving gluten-free. It sure sounds like a celiac biopsy. Not having DQ2 or DQ8 does NOT rule out celiac disease. Something like 1-2% of celiacs do not have a "celiac" gene. IgA deficiency is a risk factor for celiac too. I think the second Dr. who said he's celiac is right.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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