Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Is A Negative Biopsy Final?
0

7 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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........

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,688
    • Total Posts
      921,757
  • Topics

  • Posts

    • Do you mean something like a protein powder you could mix up?  A lot of them in the US seem to be gluten free.  Maybe just go to your local store and read all the labels?
    • Yeah I ended up allergic to corn, olives, sesame, whey, and peanuts and intolerant to dairy, soy, yeast, enzyme issues with breaking down meats, and egg yolks, along with extreme bloat with any kind of carbs/sugars in moderate amounts. And very adverse reactions to certain artificial sweeteners. So your not alone in all the other issues cropping up, it happens as our bodies adjust.  I eat a bunch of stir frys with veggies, egg whites, plenty of  avocados, and toasted and raw forms of almonds, coconut, cashews, walnuts, hemp seeds, pumpkin seeds, flax seeds, sancha inchi seeds, chia seeds, and sunflower seeds in all forms including making them into butters, spreads, and incorporating them into sauces.   Most meals are forms of soups, omelettes, and stir frys. I do the seeds and nuts on rotation same with my veggies and snack on fruits in small amounts along with some homemade baked goods I make for markets. I do suggest a rotation of foods, my dietician said I need to rotate my foods to prevent more issues, making sure I am off one one for at least 7-14 days at a time completely. I find changing up the spices and rotating my cuisine base works well. I also make puddings, and protein shakes along with nut/seed milks, and different bases and extract flavorings to get my random cravings Taken care of. Guess take what you can from this and and see how it can help you,    As to the tinging, I ended up with both B vitamin and magnesium deficiency issues, the magnesium one caused a fire like tingling in my arms, legs and back, along with muscle pain. Ended up on a doctors best powder form of it so I can dose it out right, and found epsom salt bathes helped.  
    • Hi, I've gained so much knowledge on this forum over the past few months, which I am so thankful for. I can see how much hell people are going through with this disease and it's so lovely to see how much support and advice people give to others on here. I'd like a little bit of reassurance and advice myself from anyone that can help. I've been gluten free for six months. Two weeks after going gluten free I realised I also had a problem with corn so cut out processed food. Over the following weeks and months I continually had problems with food; fruit, dairy, a lot of vegetables, nuts, soya....it's basically dwindled down to just eating potatoes (not white potatoes), cucumber, lettuce, small amounts of red onion, spring onion, sprouts and beetroot. There may be more things I could be okay with but to be honest I'm too scared to try.  Is this all normal? Am I an extreme case? I've been taking some digestive enzymes and probiotics for about six weeks, my acid reflux has dramatically decreased but I always have a lot of loud noises going on in my guts, I'm guessing this is the probiotics working.  I've lost nearly 3st in weight since this started - which I'm not complaining about as I was overweight due to thyroid problems. I've had loads of blood tests done recently, all organs are working 'great' according to my doctor, the only thing they've picked up on is ketones, I seem to be having a glucose problem, which might explain my exhaustion and weight loss. I also have permanent numbness and sometimes tingling in one of my legs and sometimes hands and one shoulder, I thought it could have vitamin B12 deficiency but that's okay according to blood tests. I would be greatful for any replies. Thanks for reading.
    • Hi everyone, I am doing job in restaurant at evening 5 to 12 during working hours no time to do a dinner. I'm thinking to make a shake but don't know the gluten free vitamin or supplement brand which one is good for me and easily available in Berlin Germany to make me fit cause last one week i feel weak. I'm 28 year old. Sincerely
    • Hey there just wanted to warn anyone that has other allergies- these crackers may not be a good choice! I'm mildly sensitive to MSG- I only react if there's a giant amount like in Chinese food or Ramen noodles, etc.  I literally have a to eat TONS of a the offending food before reacting.  Anyway, I was excited to try these Trader Joes pumpkin crackers, kept hearing about them on the radio .... and they're gluten free!  (I have Hashi's).  I ate about 3/4 of the box last night. Woke up this morning with a red itchy face and nasal congestion, headache, anxiety. Hallmark symptoms for me of high MSG intake. (It does say yeast extract on the side but it's pretty far down the list). So if you're sensitive.... stay away! Apparently these particular crackers are loaded with it. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,692
    • Most Online
      3,093

    Newest Member
    EllianaEthan
    Joined