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Becofhearts

second biopsy and eating gluten

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So a few months ago I tested positive (blood test) for celiac disease, at the time I was told to go on a gluten free diet asap. I did a biopsy about 2 weeks later and I just learned the biopsy was done poorly and was ineffective because of the instructions I was given. I am now being told I need a second biopsy and I need to eat gluten again for the next 4 weeks, its only day 2 and Im so nauseous and uncomfortable I cant do anything besides stay in bed. I cant bring myself to eat anything at all now and Im very constipated (which is a problem considering I have to give the doctor 3 stool samples within a week and I cant manage one). I dont think I can do this for 4 more weeks but I dont know if I have a choice? Is there a way to make this a little easier? are there foods you recommend to get me to the biopsy? Im already taking gravol and another prescription for the nausea. 

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1 hour ago, Becofhearts said:

So a few months ago I tested positive (blood test) for celiac disease, at the time I was told to go on a gluten free diet asap. I did a biopsy about 2 weeks later and I just learned the biopsy was done poorly and was ineffective because of the instructions I was given. I am now being told I need a second biopsy and I need to eat gluten again for the next 4 weeks, its only day 2 and Im so nauseous and uncomfortable I cant do anything besides stay in bed. I cant bring myself to eat anything at all now and Im very constipated (which is a problem considering I have to give the doctor 3 stool samples within a week and I cant manage one). I dont think I can do this for 4 more weeks but I dont know if I have a choice? Is there a way to make this a little easier? are there foods you recommend to get me to the biopsy? Im already taking gravol and another prescription for the nausea. 

I am so sorry that you have to have a repeat endoscopy on top of having to consume gluten again. I hope you have a new GI who is celiac-savvy.  A gluten challenge can be very difficult and should always be done under a doctor’s care.  You only need a 1/2 piece of bread per day for the challenge.   Some patients are not able to complete the challenge.  That and your positive blood tests (and consider the genetic test) , might be enough to convince your doctor to give you a celiac diagnosis.  Another option would be to shorten the challenge to two weeks.  Learn more:

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

Stool samples.  They are not needed for a celiac diagnosis.  He may be checking for something else,  but that can wait until after your challenge, in my non-medical opinion.  But talk to your doctor.  

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To clarify, did the endoscopy come back completely clear? Maybe the results are being misread?  Do you have a copy of the report? I speak from experience that even GI’s can miss Celiac Disease on an endoscopy report. 

I’m worried 4 weeks on gluten  would be torture and too harmful to your healing body. If your wheat antibodies were high and you responded well to being gluten free ,and now are extremely symptomatic back on gluten, it seems your answer is clear. 

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1 hour ago, desirun said:

To clarify, did the endoscopy come back completely clear? Maybe the results are being misread?  Do you have a copy of the report? I speak from experience that even GI’s can miss Celiac Disease on an endoscopy report. 

I’m worried 4 weeks on gluten  would be torture and too harmful to your healing body. If your wheat antibodies were high and you responded well to being gluten free ,and now are extremely symptomatic back on gluten, it seems your answer is clear. 

So with the first scope they told me they didnt take enough samples and with what they did have they saw some inflammation but they didnt go into detail about it. 

It is torture for sure but they were really pushing me to try.

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1 hour ago, cyclinglady said:

I am so sorry that you have to have a repeat endoscopy on top of having to consume gluten again. I hope you have a new GI who is celiac-savvy.  A gluten challenge can be very difficult and should always be done under a doctor’s care.  You only need a 1/2 piece of bread per day for the challenge.   Some patients are not able to complete the challenge.  That and your positive blood tests (and consider the genetic test) , might be enough to convince your doctor to give you a celiac diagnosis.  Another option would be to shorten the challenge to two weeks.  Learn more:

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

Stool samples.  They are not needed for a celiac diagnosis.  He may be checking for something else,  but that can wait until after your challenge, in my non-medical opinion.  But talk to your doctor.  

Thats news to me, they didnt tell me how to eat at all, they just said add gluten but didnt tell me how much lol. Which is problematic in more ways then one as i am also recovering from bulimia and have a really iffy sense of how to eat in the first place. 
Im calling my GI tomorrow to request a sooner date for the scope because I dont think Ill make it to 4 weeks 

I think the stool samples were to test for infection, they mentioned a risk of me having that or some kind of parasitic problem

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5 hours ago, Becofhearts said:

Is there a way to make this a little easier?

If it's any consolation, I did find that the challenge grew easier over the weeks I did mine. The first few days were horrible as my body had adjusted to gluten free life and didnt appreciate me reintroducing gluten. By the end of the challenge I was coping better and the effects weren't quite as bad. Hopefully that will also be the case for you. :)

I've seen some suggest eating gluten last thing at night so that you sleep through the initial effects. I'm not sure that would've worked for me but its one idea?

Best of luck. If you're feeling down or need some moral support post on here and you'll surely find some. Best wishes!

Matt

 

 

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