Gluten challenge necessary?

[ARD]

Hi everyone! I'm hoping for some guidance on the gluten challenge. My doctor ordered the blood test, but doesn't seem to know much about it. Thus why I'm here. I've been doing a gluten challenge for two weeks now and I'm miserable. But I never really cut gluten out of my diet 100% before. I would occasionally have breaded chicken, soy sauce, a flour tortilla etc. maybe once every couple days or so. I starting really noticing reactions which prompted me to ask for the test from my doctor. I had been on a limited gluten diet for less than two months. I'm not sure why I'm so affected by it all of a sudden. 

So my question is, with the limited amount of gluten I was eating before and the short length of my limited gluten diet, could I be fine to take the test now? I really don't want to get a false negative. But holy cow I'd love to feel better again. 

Symptoms:

diarrhea

gas

floating, smelly, hard to flush stool

extreme fatigue (like I have to lie down within a couple hours of eating gluten, and lately I've just been in bed virtually all day.)

I'm losing my hair!

Depression. 

 

Also, I've always had problems with my digestive issues, but it's definitely gotten worse in the last year or two. 

 

Thanks for for your help!

Alyssa

[TexasJen]

I suspect that there is no "right" answer for you.  If the lab work comes out negative, I don't think you can say with 100% certainty that it isn't a false negative. If it's positive, you can keep eating gluten and pursue endoscopy. But, if it's negative, I think there's still a chance that it's a false negative. You can continue with a gluten challenge (the equivalent of 1 piece of bread per day) and get retested in the future. Good luck!

 

[Jmg]

Hello and welcome

First, sorry to hear you're not feeling well. Myself and many others here can empathise and I know how desperate you will be to simply feel well. You may need to delay that just a little bit longer however:

58 minutes ago, ARD said:

So my question is, with the limited amount of gluten I was eating before and the short length of my limited gluten diet, could I be fine to take the test now?

Maybe?

It's impossible to answer because the test is looking for antibodies created by the immune system and different people's immune systems react differently. You may test positive as Jen says and go on to the next stage, because an endoscopy is the usual last part of the process, or you may test negative and be left wondering if you'd only stayed eating gluten longer would it be different. Doctors like to try to play it safe which is why they insist on a gluten challenge period where you are definitely having gluten each day. 

It gets more confusing. You may be like me, finding all these symptoms that seem to relate to consuming gluten but then testing negative for celiac. This could mean Non Celiac Gluten Sensitivity (NCGS) for which there is no test or it could mean you needed a longer challenge. I did 6 weeks and couldnt face any longer, sometimes I wonder if I'd done 8 would I have got a different result? Although I had been strictly gluten free before then so perhaps not a good comparison. 

I think you need to use this time to push for an answer and know that once testing is over, whatever the results, you can give the gluten free diet a proper try. You do have the option of speaking to your doctor and asking for an earlier test, but you may have to pay for that and if its negative you may want to stay on gluten to complete the challenge period for a more definitive answer.

Best of luck! 

 

[ARD]

Thanks for your replies! This is what I have been worried about. If I did get a negative, I don't want to be left wondering if it was a false negative because I didn't wait long enough! 

[squirmingitch]

Alyssa, while the above answers are true there is something I would like to point out and that is IF you jump the gun & get the blood testing b/c you don't want to eat gluten EVERY DAY for 12 weeks and you turn up negative then it is extremely common for docs to refuse to test you again after a 12 week challenge because they say, "we've already tested you & it was negative". End of story, done, over & that's all folks. There are the occasional docs who actually know their stuff & understand that one must be eating gluten each day for 12 weeks for the blood work but that unfortunately, is the minority of docs. There have been numerous cases reported on here too where the doc apparently agreed with the patient when it was stipulated that if it came up neg. then the doc would re-test after a full gluten challenge but when that happened, the patient discovered that the doc apparently was not listening when he/she made that agreement & so then refused to re-test.