Is There Really A Test For Celiac? What About A Dna Test?

[celiacshawn]

Hi there. Over a year ago I was having terrible stomach problems, pretty much what everyone describes here so I will spare you all the gruesome details. Basically, I started keeping a food log and realized that gluten kept turning up around the times I would get sick. For several months I went completely gluten-free, eating only things I prepared myself or only things from the health food store that were stamped gluten-free and were from reputable companies. I completely recovered and went back to feeling good like I hadn't in years. Then to complete my own personal self test I ate a pretty hefty amount of gluten... and got so sick. So in my mind I am 99% sure that I am a Celiac. For about the last year I have been completely gluten-free and feel fine. Occasionally I have problems, usually when I get caught off-guard having to eat out someplace unfamiliar. When this happens I have had less of a problem than in the past simply because I am better at knowing what to eat and what might be too risky.

Prior to me doing the above on my own I saw several doctors who all had various theories and medicines they wanted me to try, which mostly didn't do anything. After my experiment above I relayed all of this information to my current doctor. He basically said that what I did is what he would have recommended. That there is a blood test, which is very unreliable, and there is a scope/biopsy test which is very reliable if you happen to be reacting at the time of the test (so it is still a bit of a crap shoot, no pun intended haha). So in the end he didn't recommend any tests and told me to just keep eating gluten-free.

All this being said, it still bothers me that I have never 'officially' been diagnosed.

Are there any decent tests available? I was reading online about a genetic/DNA test that looks at certain alleles/HLAs. Would that be a test worth getting? Does it really prove anything other than having the certain markers? I asked my doctor about it but he said he was unfamiliar with it.

If a DNA test is worth it, which ones would you recommend?

Thanks for any thoughts you may provide.

[eatmeat4good]

A lot of people use Enterolab.

I chose not to get tested.

I will stay gluten free and will think of myself as Celiac whether I can proclaim it or not.

Some of my Dr.'s have said just stay gluten free since you know it is working. But whenever I go to a specialist they want me to get the official diagnosis through testing...I don't even think they realize that it means eating gluten for weeks and making myself sick and even then...as you say...it is still a crap shoot.

[JoshB]

All of the diagnostic tests center around either improper antibodies or actual damage in your intestines. If you've been good on your diet, you won't have either of those even if you do have celiac disease.

You can look at your genes; try 23andme.com, but be aware that this is not a test for celiac disease. At the most, looking at your DNA can only tell you if you are susceptible to the condition. Not whether you have it. There is are almost no conditions where you can look at your genetics and say "I have this", your genetics only tell a small part of the story.

[ravenwoodglass]

You have already done the best and most reliable test there is. You eliminated gluten, got better and had your symptoms come back when you added gluten back in. It sounds like you have a good doctor. You could do a lengthy gluten challenge for 3 months and then get blood and endo done but you could still have a false negative even after all that misery.

I did do gene testing with Enterolab a few years after diagnosis but only because one of my children got gene tested and they told her the celiac diagnosis was wrong because she didn't have one of the two most common genes. I am a firmly diagnosed celiac and have a double copy of one of the less recognized genes in the US so she has at least one copy of that gene. It is a recognized celiac associated gene in some other countries though. If you are curious then go ahead and get the gene testing done but don't let a lack of one of those 2 most common celiac associated genes convince you that what your body is telling you is wrong.

[Skylark]

DNA is interesting, but not diagnostic. Even if you aren't DQ2 or DQ8 you could still be celiac, and there are plenty of DQ2 and DQ8 folks who are gluten intolerant but not celiac.

To get the blood test and endoscopy your doctor mentioned, you would have to go back to eating a full gluten diet for three months. I am in your boat, undiagnosed for certain. Gluten makes me too sick to consider eating it for three months and like your doctor, mine finds the tests inaccurate anyway.

High five from another undiagnosed but likely celiac!

[celiacshawn]

Thanks everyone for your posts, they were really helpful. I have to admit that I am a bit of a worrier-type personality, and the main reason I was wanting some sort of definitive "you are x" from a doctor is because part of me worries I have something horribly wrong with me and that somehow what I have done to fix it is just too simple to be true. You know how it is, getting ready for work in the morning I'll have the news on and they are just constantly trying to scare the living daylights out of everyone with these horrific medical warnings... I guess I just let it get to me too much and was hoping for a really black and white diagnosis to remove other possibilities from my mind and put me more at ease. But hearing everyone's remarks on the tests that are out there, and that many have done just what I did to conclude my situation makes me feel better.

[pain*in*my*gut]

DNA is interesting, but not diagnostic. Even if you aren't DQ2 or DQ8 you could still be celiac, and there are plenty of DQ2 and DQ8 folks who are gluten intolerant but not celiac.

To get the blood test and endoscopy your doctor mentioned, you would have to go back to eating a full gluten diet for three months. I am in your boat, undiagnosed for certain. Gluten makes me too sick to consider eating it for three months and like your doctor, mine finds the tests inaccurate anyway.

High five from another undiagnosed but likely celiac!

This, exactly.

I can totally relate to wanting something on paper with a name that I can say "this is what I have". I am in the medical field, and that is what we try to do, give people a diagnosis. But it's not always black and white. Sometimes, we have to just go with our gut (bad pun intended)!

Welcome!