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Is A Negative Biopsy Final?


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#1 xabbar

 
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Posted 08 February 2011 - 03:45 PM

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.

[b]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?

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#2 adab8ca

 
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Posted 08 February 2011 - 03:54 PM

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.

[b]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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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

#3 Dixiebell

 
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Posted 08 February 2011 - 03:57 PM

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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Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.
2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.
Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.
So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!
My adult daughter also has been helped by eating gluten-free.

#4 BeautifulDay

 
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Posted 08 February 2011 - 05:25 PM

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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Severe IBS
Currently avoiding: gluten, soy, dairy, legumes, peanuts, nuts, citrus, and tomatoes

#5 AzizaRivers

 
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Posted 08 February 2011 - 07:12 PM

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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Celiac diagnosed October-November 2010 (blood test negative, biopsy inconclusive after gluten-free for 6 weeks, miraculous diet results).

October 2010: Gluten free.
November 2010: No HFCS or artificial sweeteners.
March 2011: Gradually fading out soy.

#6 T.H.

 
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Posted 08 February 2011 - 09:25 PM

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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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#7 xabbar

 
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Posted 09 February 2011 - 09:10 AM

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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