Gluten free diet before biopsy for 2 weeks

[theguest]

So I got my test results back and they were:

>128 transglutinmase Iga (normal 0 to 10)

And positive on endomysial igas.

I started a GFD upon recommendation of doctor immediately and 4 days later I'm already noticing big improvement in gas and stools.

I spoke to gastroenterologist today and they said I need to eat gluten before biopsy but also that my results were pretty conclusicely celiac ..

Should I restart eating gluten for biopsy in two weeks? How much difference will it make if I don't eat gluten for 2 weeks (after eating for my whole life - 25 years)? Will the biopsy still come back positive?

Diagnosis was such a shock - I was literally eating like 100g+ of homemade seitan everyday (was vegan). My poor gut must have been screaming..

Any advice very welcomed! 

If I do eat gluten - how much is enough eek. I know I'm only 4 days in, but I havent had this little gas and semi normal looking stools for literally my entire adult life in memory...

Please help! 

[trents]

I don't think anyone can say whether or not discontinuing gluten before the biopsy will necessarily invalidate the results. The official recommendation by the Mayo Clinic for the pretest gluten challenge when anticipating a biopsy is daily consumption of an amount of gluten equivalent to two slices of wheat bread for two weeks before the endoscopy/biopsy. May we assume from what you said that your endoscopy/biopsy is two weeks away?

With the tTG-IGA numbers as high as your are and the quick improvement in the symptoms, do you really need a biopsy to conclude your have celiac disease? Unless you have a good reason to go forward with that I would consider canceling that.

[theguest]

7 minutes ago, trents said:

I don't think anyone can say whether or not discontinuing gluten before the biopsy will necessarily invalidate the results. The official recommendation by the Mayo Clinic for the pretest gluten challenge when anticipating a biopsy is daily consumption of an amount of gluten equivalent to two slices of wheat bread for two weeks before the endoscopy/biopsy. May we assume from what you said that your endoscopy/biopsy is two weeks away?

With the tTG-IGA numbers as high as your are and the quick improvement in the symptoms, do you really need a biopsy to conclude your have celiac disease? Unless you have a good reason to go forward with that I would consider canceling that.

I guess I was wondering if the gut damage could really heal so fast as to invalidate a biopsy in 2 weeks. 

So with results as high as mine there is basically no chance of false positive? 

Sorry if I seem a bit flustered, I'm just a bit lost and the doctors haven't been hugely helpful. Finding the whole experience a bit overwhelming ! 

Regarding the test I just took the gastroenterologist at their word when they said I needed a biopsy. I suppose they are technically private (and I'm in the UK, where most healthcare is public, just lucky to have insurance because of my job), so maybe they have a slight sales motivation..

The craziest part of this is that a year ago I went to the doctor's (that time was public) and did all the tests and they said that I was normal and diagnosed me with IBS. Except they lost my blood sample for the celiac screen...! And when the doctor hung up they told me to "enjoy my IBS"!

Does the biopsy also look for other risk factors??

 

[trents]

But . . . when you have only been off gluten for four days you state you are already feeling definitely better. Actually, I am surprised that your physician wanted you to get a biopsy since I am aware that in the UK if your tTG-IGA score is 10x or higher than normal range they generally don't test any further.

Most celiacs find that the medical community as a whole suffers from a general lack of knowledge about celiac disease and typically are not very helpful. That is slowly improving. So we find that we have to go to appointments armed with knowledge and willing to be assertive. You must be willing to be your own advocate.

Whether or not the gut damage could heal fast enough to render a biopsy invalid is probably dependent on a number of things, one of which is how damaged it is in the first place. Another would be your individual recuperative powers. Another would be how successful a person is in totally avoiding gluten once the start the gluten free diet.

Edited February 17, 2022 by trents

[Creyes]

On 2/17/2022 at 1:05 PM, theguest said:

So I got my test results back and they were:

>128 transglutinmase Iga (normal 0 to 10)

And positive on endomysial igas.

I started a GFD upon recommendation of doctor immediately and 4 days later I'm already noticing big improvement in gas and stools.

I spoke to gastroenterologist today and they said I need to eat gluten before biopsy but also that my results were pretty conclusicely celiac ..

Should I restart eating gluten for biopsy in two weeks? How much difference will it make if I don't eat gluten for 2 weeks (after eating for my whole life - 25 years)? Will the biopsy still come back positive?

Diagnosis was such a shock - I was literally eating like 100g+ of homemade seitan everyday (was vegan). My poor gut must have been screaming..

Any advice very welcomed! 

If I do eat gluten - how much is enough eek. I know I'm only 4 days in, but I havent had this little gas and semi normal looking stools for literally my entire adult life in memory...

Please help! 

My case is in many aspects different to yours but it may help.

I´m 79 and for the first 78 years I had perfect digestion. At 78 I had Covid (pneumonia but no hospitalization. it was october 2020. no vaccines yet). 3 weeks later I started recovering and almost simultaneously began my digestive issues. After several months of gastroenterologist visits and unsuccesful treatments, an endoscopy with biopsy revealed celiac disease and helicobacter pillory. It seems I had a lifelong genetic predisposition against gluten which hadnt manifested until covid triggered it. The endoscopy also showed my small intestine has severely damaged folds, likely from months of eating gluten foods. To date, after 5 months gluten-free I still have permanent mild to medium discomfort in my stomach and gut. Another endoscopy is scheduled in a month.

Maybe you should seek advice from your doctor about eating gluten again. As for me, I intend to be totally gluten-free as long as it takes.

[knitty kitty]

On 2/17/2022 at 3:18 PM, theguest said:

I guess I was wondering if the gut damage could really heal so fast as to invalidate a biopsy in 2 weeks. 

So with results as high as mine there is basically no chance of false positive? 

Sorry if I seem a bit flustered, I'm just a bit lost and the doctors haven't been hugely helpful. Finding the whole experience a bit overwhelming ! 

Regarding the test I just took the gastroenterologist at their word when they said I needed a biopsy. I suppose they are technically private (and I'm in the UK, where most healthcare is public, just lucky to have insurance because of my job), so maybe they have a slight sales motivation..

The craziest part of this is that a year ago I went to the doctor's (that time was public) and did all the tests and they said that I was normal and diagnosed me with IBS. Except they lost my blood sample for the celiac screen...! And when the doctor hung up they told me to "enjoy my IBS"!

Does the biopsy also look for other risk factors??

 

Hello!

The blood antibody tests are very specific for Celiac Disease.  Very doubtful that yours is a false positive being so high.

Staying on gluten until after the endoscopy would be beneficial in that you will have a more accurate baseline endoscopy with which to compare future endoscopies.  

Like @trents said, we don't know how long your Celiac Disease has been activively causing damage and we don't know how aggressively your small intestine has been damaged.  

Continuing the gluten challenge now would be easier than doing one in the future if required.  Our bodies react with more severe symptoms if we've been off gluten for months.  Accidentally getting glutened after going gluten free can bring about worse symptoms as our bodies launch a new immune response than we experience continually eating gluten.    

Enjoy this time saying goodbye to your favorite gluten foods.  And eat a waffle for me! 

 

[theguest]

An update for anyone doom scrolling through forums! In case it helps anyone in a similar situation.

I had the biopsy in the end, and it was positive. Report said mild villous atrophy, not sure where that falls on the Marsh scale, but the gastroenterologist was certain it was celiac. 

I also ate gluten for for just one week before the biopsy.