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Is A Negative Biopsy Final?

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xabbar Newbie
xabbar
Posted

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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adab8ca Enthusiast
adab8ca
Posted

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)

Dixiebell Contributor
Dixiebell
Posted

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.

BeautifulDay Apprentice
BeautifulDay
Posted

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!

AzizaRivers Apprentice
AzizaRivers
Posted

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.

T.H. Community Regular
T.H.
Posted

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.

xabbar Newbie
xabbar
Posted
  • Author

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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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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