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Is A Negative Biopsy Final?
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I was diagnosed with celiac disease almost 2 years ago. Lots of my family members have symptoms but refuse to get tested. My 11 year old nephew has many gastrointestinal problems and headaches as I used to before diagnosis - he had an endoscopy/biopsy done last year and the result was negative. In the meantime he has been poked and prodded and checked for everything possible, diagnosed with Crohns and put on large amounts of steriods with no change etc. etc.

My question is, is it possible to have a negative biopsy but still have celiac disease? I swear I watch this child suffer and am convinced that his problems would all clear up on a gluten free diet. Unfortunately because his biopsy was negative they refuse to put him on a gluten-free diet to see if he feels better.

Does anyone know?

Xabbar

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I was diagnosed with celiac disease almost 2 years ago. Lots of my family members have symptoms but refuse to get tested. My 11 year old nephew has many gastrointestinal problems and headaches as I used to before diagnosis - he had an endoscopy/biopsy done last year and the result was negative. In the meantime he has been poked and prodded and checked for everything possible, diagnosed with Crohns and put on large amounts of steriods with no change etc. etc.

My question is, is it possible to have a negative biopsy but still have celiac disease? I swear I watch this child suffer and am convinced that his problems would all clear up on a gluten free diet. Unfortunately because his biopsy was negative they refuse to put him on a gluten-free diet to see if he feels better.

Does anyone know?

Xabbar

Definitely possible!!! There is a huge amount of intestine that can be damaged and unless the Dr biopsies the right spot, it can be missed...As well if the kid is young, there may not be that much damage. I was "lucky" (tongue in cheek) that I had total villous atrophy, so no doubt and tons of damage, easy to find :(

Did they do any blood testing for him? Many Dr's will diagnose based on blood work alone (but again, can be prone to false negatives, I think especially in kids)

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Hi Xabbar.

In short, yes. He could still have celiac disease. The small intestine has quite a large surface area and if the Dr. didn't take samples from the area with damage, or not enough samples, most likely they will not find anything. It is also very possible he may not have enough damage, yet.

Do you know if he had blood testing for celiac?

It is so hard to watch someone suffer needlessly. Maybe you could gather some information to give to them and see if he could try gluten-free for three months to see if some of the issues resolve.

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I've had both a negative blood test and a negative small intestine biopsy (upper endoscopy). I definitely have Celiac disease and suffer from the related food intolerances as well. I say the proof is in what happens when you change the diet. (You know the old saying: if it walks like a duck, talks like a duck, and looks like a duck, it's probably a duck!) If things get better, celiac or gluten intolerance it is. My life changed when I went gluten-free (and everything else free!)

I agree - could you put together some research/information for them, even just on gluten intolerance? Even if he's not suffering from Celiac, it could be gluten intolerance and dietary changes could help...I'm sure you've thought of this. Good luck, and I wish you patience and courage in helping the situation!

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Also, please do keep in mind that Crohn's is a very versatile disease in that it affects different people differently, and everyone's body requires a slightly different regimen to keep it under control. Unfortunately, many people either do not work hard enough at finding the best way to control it, or they do not know any better, or they do try and just can't seem to get it under control. For some people with Crohn's, a gluten-free diet is very helpful...so it's possible that he really does have Crohn's but it could still help to cut out gluten. You could mention this to his parents, just the fact that different special diets sometimes help.

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For some people with Crohn's, a gluten-free diet is very helpful...so it's possible that he really does have Crohn's but it could still help to cut out gluten.

I've met two people who definitely have Crohn's but who were helped quite a bit by going gluten free. If the boy's doctors have not suggested dietary triggers for the little one's Crohn's, his parents should be finding a new doctor, anyway. That's one of the first thing most good doctors I know of do: see what triggers the Crohn's, if possible, so they can calm it down.

If they are just using steroids, it's like saying you have a pnuemonia and giving you something to suppress the cough. It might affect the symptoms, but it won't do a darn thing for the original condition.

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Thanks everyone for your feedback. He has had blood testing and it was negative. His mother (my sister) is well aware of the whole gluten free diet thing and how it changed my life. Interesting comment regarding Crohns and that diet is essential for 'controlling' it. Will bring it up from this angle and see where I get - its very frustrating though because she herself has many symptoms of celiac disease/gluten intolerance but because her blood test was also negative will not go further with it. Oh Well! As they say, you can lead a horse to water........

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
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