3 Years Gluten Free. How To Get Tested?

[Lshetler]

The title's pretty self explanatory. I have a doctor's appointment soon and I'm going to demand that I be properly tested. The only problem is that I don't know what that means (and lord knows my doctor doesn't either). Is it possible to be tested on a gluten free diet? If not what do I have to do?

Thanks

[Skylark]

The title's pretty self explanatory. I have a doctor's appointment soon and I'm going to demand that I be properly tested. The only problem is that I don't know what that means (and lord knows my doctor doesn't either). Is it possible to be tested on a gluten free diet? If not what do I have to do?

Thanks

Why do you feel like you should "demand" a test? Did someone put you on the diet with scanty evidence? If you require a gluten-free diet to feel healthy, for whatever reason, the test would make no difference.

If you've been strict for three years, you should have no antibodies to test for. You're looking at a gluten challenge. You would eat gluten (equivalent of 4 slices of bread a day) for a bare minimum of a month, and probably two months for a clear result since you've been gluten-free for so long. This would get your bodies to produce the antibodies and autoimmune intestinal damage that the tests look for.

You could get a genetic test gluten-free, but if you're of Northern European descent, you have a 30%-40% chance of carrying DQ2 or DQ8 that are associated with celiac. (If you count DQ1, DQ7, and DQ9, almost everyone has a "positive" genetic test.) If you turned up DQ2.5, you would at least know you have a gene that is very strongly associated with celiac.

[Lshetler]

Meh, I guess I'm screwed, lol. Thanks for the info. I just wanted a definitive test, because my friends think I'm crazy and sometimes I believe them.

Actually, I heard, from a gastroenterologist, about a biopsy where they check for white blood cells after you've eaten gluten. Does such a test exist or is that the regular test that involves a gluten challenge?

[GlutenFreeManna]

Making yourself sick again for a few months in order to get a test just to "prove" to your friends that you shouldn't eat gluten is a little silly, don't you think? What will you do if your results all come back negative? Would you go back to eating gluten even if it makes you sick? I'm sorry, but I trust my body more than I trust a test that has a high rate of false negatives. If your friends are not supportive, maybe it's time to get new friends.

Now all that being said, there have been times when I have been curious about whether I would test positive. I have strongly considered doing the gene testing (which doesn't require you to poison yourself with gluten). You could get that done and show the results to your "friends". Unless they have studied celiac and gluten intolerance in detail they will not know that a positive genetic test just means you have a high probability of having celiac disease.

[ravenwoodglass]

This question so clearly illustrates why the US needs to start using the rectal or buccosal challenges. I hope they start to in my lifetime.

Rant over.

I also think your 'friends' need to leave you alone about this issue. It is your body and your choice what you put in it and they need to but out.

[wisdomwanted]

I was very thankful for this topic. I just got home from talking to a nutritionalist who strongly recommended I get tested, even though I've been gluten-free for over a year now. I'm a college student, and am not willing or able to give up 1-3 months of my life to feeling miserable again, just so I can take a test that may or may not be right.

I just joined the forum to be able to get more helpful input/support.

[mushroom]

The people who recommend these challenges don't have to live through them, or live with the consequences of them

[missj]

Meh, I guess I'm screwed, lol. Thanks for the info. I just wanted a definitive test, because my friends think I'm crazy and sometimes I believe them.

I totally understand the whole "Friends think I'm crazy" thing. I was told that my intestinal issues can only be UC or Crhons, simply because my mother had UC. So, I staretd a raw vegetarian diet so I could get enough fiber and maybe get some relief from the constipation. It hasn't worked. Go figure. They all thought I was nuts! "why? Meat is delicious!" blah blah blah. Yes it is, but it's also hard to digest. Now I want to go back to gluten-free but I have done it before and they thought I was crazy for that too. I love them, but unless they live the pain, they won't ever get it. Just do what you feel is right for your body. That is what everyone around here has been telling me! Good Luck!

[hockeymomofceliacchild]

I was very thankful for this topic. I just got home from talking to a nutritionalist who strongly recommended I get tested, even though I've been gluten-free for over a year now. I'm a college student, and am not willing or able to give up 1-3 months of my life to feeling miserable again, just so I can take a test that may or may not be right.

I just joined the forum to be able to get more helpful input/support.

I have to admit I was one of those friends (or sister) in this case. It's not that I didn't support my brother, because I did. I knew he had celiac and if he ate wheat he would get a nasty itchy rash....

Now my son has the same thing and man do I ever have more sympaty for him now and his wife too who has to do all the shopping and baking It is soo overwhelming.

When people don't understand they don't take it serious enough but I certainly agree with these ladies it isn't worth putting yourself and your body through a test like that. You obviously went off gluten for a reason and it was worth it enough to stick with it.

My friend who has celiac was told by her nutritionalist NOT to have her son tested! (and should be in my opinion. )