Blood test vs. Biopsy - after a gluten free period

[Lex-]

I know that going gluten free before getting tested means the blood test is going to yield a false negative, but the same can't be true of biopsy, can it? Especially if you have had undiagnosed celiac for a few years, I assume enough damage is caused to the intestines to show in biopsy. Am I right or wrong?

[squirmingitch]

You must do a gluten challenge for both the blood as well as the endoscopy. Sorry. 

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[Lex-]

1 hour ago, squirmingitch said:

You must do a gluten challenge for both the blood as well as the endoscopy. Sorry. 

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Thanks for your response.

 

Well, I am screwed then! 

[cyclinglady]

You are not screwed.   If you experience a resolution of your symptoms while on a gluten free diet, then you have your answer — gluten is not good for you.  Just act as if you have celiac disease and you will be fine.  A firm diagnosis can be needed if you have DOUBT.  A diagnosis is nice to have (validation), but it really comes down to feeling better.  

It is hard to maintain a strict gluten free diet in the beginning, but soon it will become the norm.  

The small intestine can heal within two weeks in some people.  For others it can take longer.  It can be hard to master the diet is one reason for slow healing.    Others have collateral damage (celiac disease is systemic) and those issues take longer to resolve.  So, researchers are cautious about challenge lengths.  

But the decision is up to you as to whether or not you want to pursue a diagnosis.   You have to decide what is best for you.  

I do urge you  to throughly research and weigh the risks and benefits of self-diagnosing ANY disease.  I thought  for sure that my niece had celiac disease like me, but it turned out that she has Crohn’s.  But the people who wear white coats (although not perfect) really have an advantage over us — education and training.  

[Lex-]

24 minutes ago, cyclinglady said:

You are not screwed.   If you experience a resolution of your symptoms while on a gluten free diet, then you have your answer — gluten is not good for you.  Just act as if you have celiac disease and you will be fine.  A firm diagnosis can be needed if you have DOUBT.  A diagnosis is nice to have (validation), but it really comes down to feeling better.  

It is hard to maintain a strict gluten free diet in the beginning, but soon it will become the norm.  

The small intestine can heal within two weeks in some people.  For others it can take longer.  It can be hard to master the diet is one reason for slow healing.    Others have collateral damage (celiac disease is systemic) and those issues take longer to resolve.  So, researchers are cautious about challenge lengths.  

But the decision is up to you as to whether or not you want to pursue a diagnosis.   You have to decide what is best for you.  

I do urge you  to throughly research and weigh the risks and benefits of self-diagnosing ANY disease.  I thought  for sure that my niece had celiac disease like me, but it turned out that she has Crohn’s.  But the people who wear white coats (although not perfect) really have an advantage over us — education and training.  

Thanks for your response, cyclinglady.

I do feel better after going gluten free. It's been about a month and a half. My digestive system functions better. My joints pains have diminished. And the little eczema I had on my face has disappeared almost entirely.

But as you said it takes a while to get the hang of the diet. I have already accidentally glutenned myself a couple of times, with painful recurrence of the above mentioned symptoms.

One reason I would like a certain diagnosis is that I have had my symptoms for at least 5 years, and I have only recently realised they might have had to do with gluten all along. This means I might have already caused serious damage to my digestive system, and a biopsy can help determine that.

 

[squirmingitch]

Check out the Newbie 101 so you know how to protect yourself.

 

[cyclinglady]

I read that getting diagnosed for celiac disease averages 10 years!  The good news is that most celiacs recover on the gluten free diet.  The biopsy in your case, could determine whether or not you have celiac disease and rule out  things like IBD, SIBO, Cancer, etc.  Cancer is very, very, rare.  If your symptoms resolve, your worries for intestinal damage should resolve too.  

My hubby is not diagnosed and he has been gluten free for 16 years (12 years longer than me).  He refuses to do a challenge and I can not blame him.  It is obvious that gluten is the cause of his symptoms.  It was a shame that back then, that celiac disease was not well known.