6 Week Gluten Challenge Prior To Endoscopy

[catherineb93]

Hello, I am 20 years old and was diagnosed as celiac 4 months ago following a blood test after suffering from bloating, stomach pains, skin rashes and ulcers. I have been following a strict gluten free diet since my diagnosis, as recommended by my dietitian, and have felt much better in the past few months. However, after seeing a doctor recently I have been told I need an endoscopy for a more certain diagnosis.

At only 20, I would like to be sure of my diagnosis, but just wish I'd been told to have an endoscopy sooner and before going gluten free. 

I have been told to start eating gluten for the 6 weeks leading up to my appointment in August - the equivalent of four slices of bread a day. However, I have read some stories online about people being "glutened" that make me very apprehensive of eating gluten again (symptoms such as nausea, vomiting, diarrhea etc), especially in such large amounts.

Is it highly likely that my symptoms will be a lot worse than before I stopped eating gluten? Can anyone reassure me that it is not as bad as I am anticipating?! 

Thank you. 

Catherine. 

[1desperateladysaved]

Welcome to the forum, Catherine,

 

The real gold standard test for celiac is when your body responds well to the gluten free diet!  You pass that test.  Many have done gluten challenges around here.  I didn't do it, because I felt the concern you do about it.  I think I would look back at your symptoms, perhaps talk to another doctor and really consider if it is necessary for you to do.  I feel sure of my diagnosis as I did a genetic test and had symptoms for 30+ years.  I have damage consistent with celiac.  My intestine is tender, mal absorption, and multiple food intolerances.  Perhaps you can convince someone by these sorts of means.  Perhaps someone that did a gluten challenge can tell us if they are glad they did it.

 

D

[greenbeanie]

That's a tough one. I'm sorry you're in this position. I just did a six-week gluten challenge. It was awful, and it looks like I'm not going to end up with a clear diagnosis anyway. Prior to the gluten challenge I'd been gluten light for about 15 years, then totally gluten-free for 12 days (with amazing improvements after 30 years of rashes and 20+ years of intestinal symptoms with joint pain and insomnia). I only ate about 2 slices of bread per day during the challenge because I just couldn't handle more. My hair started turning grey and then falling out, diarrhea and insomnia worsened, fatigue was almost incapacitating, etc. My daughter has celiac and I have so many symptoms that both the GI and I felt sure my biopsies would be positive, even though my blood tests were negative. The negative blood tests weren't surprising beforehand because I hadn't eaten much gluten for years, but it was surprising that they remained negative after the challenge. My endoscopy did show gastritis and esophagitis that could be caused by gluten, but it did not show celiac. I haven't seen the doctor for my follow-up appointment yet, so I don't know what her official conclusion will be, but mostly likely I won't get an official diagnosis (though she said to go gluten-free anyway).

I wouldn't quite say I regret doing the gluten challenge; even with all the unpleasantness, I knew it would be over on a certain date, and it would have been worth it to me if it had resulted in a diagnosis. I do regret not forcing myself to eat the full four slices of bread every day, though. If I'd already had positive blood tests and a good response to the diet, as you do, I probably wouldn't have put myself through the challenge.

Good luck with whatever you decide to do. It sounds like you clearly know what the problem is either way, so it's mostly a matter of how important an official diagnosis is to you.

[catherineb93]

That's a tough one. I'm sorry you're in this position. I just did a six-week gluten challenge. It was awful, and it looks like I'm not going to end up with a clear diagnosis anyway. Prior to the gluten challenge I'd been gluten light for about 15 years, then totally gluten-free for 12 days (with amazing improvements after 30 years of rashes and 20+ years of intestinal symptoms with joint pain and insomnia). I only ate about 2 slices of bread per day during the challenge because I just couldn't handle more. My hair started turning grey and then falling out, diarrhea and insomnia worsened, fatigue was almost incapacitating, etc. My daughter has celiac and I have so many symptoms that both the GI and I felt sure my biopsies would be positive, even though my blood tests were negative. The negative blood tests weren't surprising beforehand because I hadn't eaten much gluten for years, but it was surprising that they remained negative after the challenge. My endoscopy did show gastritis and esophagitis that could be caused by gluten, but it did not show celiac. I haven't seen the doctor for my follow-up appointment yet, so I don't know what her official conclusion will be, but mostly likely I won't get an official diagnosis (though she said to go gluten-free anyway).

I wouldn't quite say I regret doing the gluten challenge; even with all the unpleasantness, I knew it would be over on a certain date, and it would have been worth it to me if it had resulted in a diagnosis. I do regret not forcing myself to eat the full four slices of bread every day, though. If I'd already had positive blood tests and a good response to the diet, as you do, I probably wouldn't have put myself through the challenge.

Good luck with whatever you decide to do. It sounds like you clearly know what the problem is either way, so it's mostly a matter of how important an official diagnosis is to you.

Today I received a phone call from the hospital; the secretary told me that they have "targets to be met" and need to schedule my endoscopy for 2/3 weeks time! I wish they would stop messing me around, I'd like to know what I'm doing then I can prepare! Also, I hope this is enough time for the gluten to take effect, I don't want to do this challenge and not receive a final diagnosis. 

 

I started eating gluten last night, and so far it hasn't been too unpleasant. Although the bloating and stomach pains have returned almost instantly and I have been feeling quite lethargic, I can still function normally. I feel terrible for those people who suffer worse symptoms, its horrible trying to make yourself eat something that you know will make you feel bad. Not getting a certain diagnosis after putting your body through all that must be so frustrating. 

 

I'd like to get a certain diagnosis, simply because the positive blood test result came as a surprise to me; i'd only been properly suffering for around 6 months and no one in my family has similar problems. 

So, I guess all I have to do now is carry on eating gluten; I will try and make myself eat quite a lot  seeing as my appointment is sooner. Thank you for your advise, good luck with your diagnosis and feeling a lot better in general! 

[nvsmom]

I have heard (no links to back this up) that a two week gluten challenge is usually considered adequate. I hope it works well for you.

 

Good luck. I hope it's not too hard on you.