Gluten Challenge Challenge

[Neko1216]

Hello

I've just joined these forums and I’m definitely new to all things gluten minded and celiac. I’ve had a myriad of symptoms for years that have gotten worse that a previous doctor would just throw meds at. I was getting so miserable I finally decided to find a new doctor and see what I could find out. At my new patient visit, after explaining all my symptoms he sent me for a wide range of blood tests, including a few to test for celiac. I ended up testing positive. 
I got a referral to a gastroenterologist but the wait was two months so it was suggested I go gluten-free in that time to see how I would feel. After two weeks it was like I had finally woken up, the pains were going away, the headed were less and less- it was amazing. Then came my GI visit. I was told due to going gluten-free I would have to reintroduce gluten in a big way prior to getting and endoscopy. Gluten rich, as much as I can, to “make my body mad”. I was told eight weeks. 
So here I am. Six weeks in. I feel so much worse than I ever did and I don’t know what to do. I am feeling so sick there are some times I just have to lay down and curl up in a ball.  I’m not doing permanent damage, right? How did anyone else do a gluten challenge? Is there anything I can do to make this easier? 

[trents]

Welcome to the forum, Neko1216!

You are in the same difficult spot that many are in whose physicians neglect to or don't know enough to tell them that going gluten-free before testing sabotages the tests.

But do you really need then endoscopy/biopsy? Seems like you have all the evidence you need by the improvement in your health and sense of well-being. And whether or not you are gluten sensitive or have celiac disease, the antidote is the same, complete avoidance of gluten.

Having said that, some people seem to need the confirmation of the endoscopy/biopsy in order to stay on trach with their gluten-free diet and not cheat by rationalizing it away.

The question about permanent damage is a tricky one to answer. Most likely, the small bowel villi will recover if you keep eating gluten until the scoping and then commit to totally gluten-free lifestyle. But it is also true that the longer you consume gluten the higher is the chance that collateral damage might be done to the immune system because of "leaky gut" syndrome from the small bowel inflammation. But my best guess is it won't make much difference long term if you stay on gluten for another two weeks.

Edited February 8, 2021 by trents

[Neko1216]

8 minutes ago, trents said:

Welcome to the forum, Neko1216!

You are in the same difficult spot that many are in whose physicians neglect to or don't know enough to tell them that going gluten-free before testing sabotages the tests.

But do you really need then endoscopy/biopsy? Seems like you have all the evidence you need by the improvement in your health and sense of well-being. And whether or not you are gluten sensitive or have celiac disease, the antidote is the same, complete avoidance of gluten.

Having said that, some people seem to need the confirmation of the endoscopy/biopsy in order to stay on trach with their gluten-free diet and not cheat by rationalizing it away.

The question about permanent damage is a tricky one to answer. Most likely, the small bowel villi will recover if you keep eating gluten until the scoping and then commit to totally gluten-free lifestyle. But it is also true that the longer you consume gluten the higher is the chance that collateral damage might be done to the immune system because of "leaky gut" syndrome from the small bowel inflammation. But my best guess is it won't make much difference long term if you stay on gluten for another two weeks.

Thanks for your reply. It did seem like the rational next step in testing when it was first explained but yes, in retrospect it does not seem as necessary... 

I like hearing there probably won’t be long term damage. It helps when I have the mental debate with myself to keep going with this. 

[GFinDC]

1 hour ago, Neko1216 said:

Hello

I've just joined these forums and I’m definitely new to all things gluten minded and celiac. I’ve had a myriad of symptoms for years that have gotten worse that a previous doctor would just throw meds at. I was getting so miserable I finally decided to find a new doctor and see what I could find out. At my new patient visit, after explaining all my symptoms he sent me for a wide range of blood tests, including a few to test for celiac. I ended up testing positive. 
I got a referral to a gastroenterologist but the wait was two months so it was suggested I go gluten-free in that time to see how I would feel. After two weeks it was like I had finally woken up, the pains were going away, the headed were less and less- it was amazing. Then came my GI visit. I was told due to going gluten-free I would have to reintroduce gluten in a big way prior to getting and endoscopy. Gluten rich, as much as I can, to “make my body mad”. I was told eight weeks. 
So here I am. Six weeks in. I feel so much worse than I ever did and I don’t know what to do. I am feeling so sick there are some times I just have to lay down and curl up in a ball.  I’m not doing permanent damage, right? How did anyone else do a gluten challenge? Is there anything I can do to make this easier? 

The endoscopy gluten challenge is 2 weeks, the blood antibodies gluten challenge is 12 weeks.  Sometimes they say 8 weeks though.  So if you have been eating gluten for 6 weeks you are more than ready for the endoscopy.

[Scott Adams]

Since you had a positive blood test (and feel free if you'd like to share those results with us), AND your long-standing symptoms went away on a gluten-free diet, AND have come back with a vengeance on your current gluten challenge, all of this together would be enough for me, but I'm not your doctor. 

Most people need the formal diagnosis to stay on a 100% GFD for life, which can be hard to do unless they know for sure. In your case it sounds like you won't have a hard time staying on the diet no matter what the biopsy indicates (yes, it's possible it won't confirm celiac disease). There are benefits of getting a diagnosis, like receiving follow up care, but I've never received any without pushing my doctors for it. There are also drawbacks like higher and harder to get life and/or health insurance.

Above all, you're responsible for making decisions about your own health, so whatever you decide is ok.