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How Much Gluten For Biopsy?


Pokey Oaks

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Pokey Oaks Rookie

I'm having an endoscopy done on the 23rd of this month. And my gastroenterologist told me

I need to "gluten" myself until then.

My question is, how much gluten do I actually need to eat to make sure it's not missed? I feel like I'm overdoing it, but I want to make sure the biopsies (he said he takes at least 4 in different locations) are definitive. I've been having maybe 5-6 serves a day.

Right now it's 5am and I've been sitting in the bathroom for the last hour in pain. I'm so bloated, my joints ache, I constantly feel sick, and I just want to cry. My belly is so stretched out I look pregnant, and my poor family have to put up with my gas. i hate the thought of doing this for the next few weeks, do you think I could have a gluten-free day here and there without risking the biopsy results? I really feel so awful :,(

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kareng Grand Master

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"A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

  • Prior to blood testing we recommend 12 weeks of eating gluten.
  • Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy."

 

You might ask for a few extra biopsies:

 

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Pokey Oaks Rookie

Half a slice of bread?! Is that all? Omg my poor stomach :( I've been on a gluten binge, and hating every second. What an idiot, I should have asked before I started.

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SMRI Collaborator

Have you had your bloodwork done yet?

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nvsmom Community Regular

I've heard anywhere between 1/2 a slice of bread up to two per day for two to four weeks.  If you've gone over, it will probably help make you sicker which will help with celiac detection.... It is sort of a bright side.   ;)  I would go with one slice of bread per day and get up to the equivalent of two slices when it comes to treat foods.  This could be your final weeks of gluten so you may as well enjoy it (as much as possible while feeling ill).

 

Hang in there.

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Pokey Oaks Rookie

I did have blood work done earlier in the year, but I was completely naive about how everything worked, and I had been gluten free for quite a period of time before then. It obviously came back negative, and my doctor said there was no way I could have Celiacs and that it didn't matter that I was gluten free prior to the test (which my gastroenterologist now tells me is rubbish).

Fast forward a few months, I tentively start eating more gluten, feel sick, have joint pain, and iron and magnesium levels so low they needed to replace them via IV. Hospital sends me if to the gastroenterologist, and here I am. The period between the IV transfusions and the gastro appointment I went back to gluten free, and felt so much better. Now I'm back to feeling crappy, but at least it's for a purpose this time.

My sister also has had gastro problems all her life, and is constantly anemic and lacking other key vitamins and minerals. If I'm diagnosed (they're also doing a colonoscopy to check for other possible causes) then she'll go get checked as well. So I desperately want them to get it right this time, either way.

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BlessedMommy Rising Star

Do one sandwich per day. Don't torture yourself with overdoing it.

 

I overdid the gluten during my challenge and due to that, I had to quit 10 days into it, because I had a very severe reaction and ended up in the ER. I went gluten free at that point and figured that my $3,000.00 hospital bill was a good enough reason to live like a celiac and be gluten free for life.

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SMRI Collaborator

I did have blood work done earlier in the year, but I was completely naive about how everything worked, and I had been gluten free for quite a period of time before then. It obviously came back negative, and my doctor said there was no way I could have Celiacs and that it didn't matter that I was gluten free prior to the test (which my gastroenterologist now tells me is rubbish).

Fast forward a few months, I tentively start eating more gluten, feel sick, have joint pain, and iron and magnesium levels so low they needed to replace them via IV. Hospital sends me if to the gastroenterologist, and here I am. The period between the IV transfusions and the gastro appointment I went back to gluten free, and felt so much better. Now I'm back to feeling crappy, but at least it's for a purpose this time.

My sister also has had gastro problems all her life, and is constantly anemic and lacking other key vitamins and minerals. If I'm diagnosed (they're also doing a colonoscopy to check for other possible causes) then she'll go get checked as well. So I desperately want them to get it right this time, either way.

 

I'd ask the GI to run the blood tests again since you will be there anyway.  You might see an increase in numbers from your previous tests.  Couldn't hurt since you are eating gluten anyway.  I would also get a copy of your old tests.  Did they even run the full panel?  If not, the full panel might show a positive some where.  I would also request at least 6 biopsies since you have been off gluten for a while, even though you have started it again.  I know when my daughter was tested they were very surprised that her bloodwork was negative given her symptoms and family history so they took 10 biopsies. 

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