Gluten Challenge Advice Needed

[jayman6]

A brief history--All of my blood tests were negative for celiac, but my biopsies showed some intestinal damage and my doctors (I've seen two now) both agree that I am probable celiac but are uncomfortable diagnosing for sure because my intestinal damage is not bad enough that they can rule out all other causes. I've been on a very strict gluten-free diet for 9 weeks and have begun to feel better. I am no longer dealing with chronic indigestion and a general "not feeling good" feeling all of the time and I haven't had a canker sore in several weeks (I cannot remember a time in the last 5 years where I've gone more than a week or two without one). I want to be sure that celiac is my problem, though, and my doctor advised that I can do a gluten challenge to make sure. I'm wondering what the best way is to go about this. Should I just eat one meal containing gluten, or do I need to eat it for a few days? I know that it's bad for my body if I do have celiac, but I'd rather know for sure so I can fully commit to the diet and new lifestyle. If anyone has done a gluten challenge and can give some advice, I would appreciate it. 

[kareng]

If you have had the tests, what is the reason for the gluten challenge? Usually, a gluten challenge is 12 weeks of gluten for someone who has been gluten-free for a long time. Then they do the blood tests and endoscopy.

[jayman6]

If you have had the tests, what is the reason for the gluten challenge? Usually, a gluten challenge is 12 weeks of gluten for someone who has been gluten-free for a long time. Then they do the blood tests and endoscopy.

 

The reasons for the challenge are the reasons I stated in the original post--my blood tests were negative and my biopsies were inconclusive. The tests aren't always accurate or conclusive. I want to find out if gluten is really a problem for me, so I'm going to eat it and see if I get sick again. I've read about it all over the place as a way to help confirm a diagnosis, and it was suggested by my doctor. Right now, I'm hoping to get advice from people who have done it. 

[BlessedMommy]

If you have a positive biopsy and symptom resolution, than it's likely that it's celiac. You may be one of the few celiacs who test negative on the blood panel and if that's the case, I doubt that gluten challenging would make a difference.

 

However, I have seen a suggestion of using 4/5 factors to DX celiac:

 

1) symptoms of celiac

2) resolution of celiac symptoms on a gluten free diet

3) positive bloodwork

4) genes for celiac

5) positive biopsy

 

I think that it's wise to use a combination of factors, considering the possibility of false negatives.

 

It sounds like you have 3 out of those 5 already. If you want to be extra sure, you could do the genetic test. 

 

ETA: I'm sorry I just saw your comment about your biopsy being inconclusive. Does your doctor have any suggestion for other causes of the intestinal damage?

[jayman6]

If you have a positive biopsy and symptom resolution, than it's likely that it's celiac. You may be one of the few celiacs who test negative on the blood panel and if that's the case, I doubt that gluten challenging would make a difference.

 

However, I have seen a suggestion of using 4/5 factors to DX celiac:

 

1) symptoms of celiac

2) resolution of celiac symptoms on a gluten free diet

3) positive bloodwork

4) genes for celiac

5) positive biopsy

 

I think that it's wise to use a combination of factors, considering the false negatives.

 

It sounds like you have 3 out of those 5 already. If you want to be extra sure, you could do the genetic test. 

 

ETA: I'm sorry I just saw your comment about your biopsy being inconclusive. Does your doctor have any suggestion for other causes of the intestinal damage?

 

Thanks for the reply. And yes, my biopsy was inconclusive, otherwise I wouldn't be interested in the gluten challenge.  My doctor has suggested that there are other causes, but they are more unlikely, such as other food allergies or some other conditions that are more rare. Thanks!

[BlessedMommy]

I think that if you are unsure, adding gluten back in could help to put together the puzzle a little better.

 

My #1 advice on gluten challenges is not to overdo the gluten. One sandwich per day is plenty. 

[kareng]

Do you aren't doing it to get more blood work? You are doing it just to see if it makes you feel bad? So, I would think you would want to be gluten-free a few more weeks until you feel really good. Then just try eating a favorite gluteny meal and take it from there. If you feel awful in a few hours, stop - you have an answer. It's possible it might take a few days of eating gluten to notice the effects. Unfortunately, everyone is different.