Blood Testing - How Long Must You Be Back On G?

[LJ-Mom]

My 18 month old son was off gluten for almost a month and we saw little if any improvement. We'd sequentially removed gluten, then dairy, then most fruit and were still getting daily diarrhea with only 2 solid poops over 4 weeks. My son is also teething (8 teeth since mid-Dec), so not sure if that is confounding. Have put back gluten, still getting lots of loose stool but it is actually back to being brown and not so stinky vs. green/yellow and horrible after removing gluten, dairy and fruit.

We're due to go in for blood tests for allergy, celiac and other issues soon. I want to make sure that if it is celiac (with possibly several other allergies/intolerences) that I have the best chance for a postive test for antibodies. How long should the gluten be back in the diet for positive results?

I know some will say it doesn't matter about the blood test result, but since we did not see improvement after a month gluten free, I'm looking for any answers right now. My doctors has said one thing, but I no longer trust her, as she recommeded going gluten free before doing testing. Now we're in a this horrible spot. I feel guilty giving gluten now, even though I saw no improvement. Hating this!

[slee]

This sounds so familiar! My son has been gluten-free about 2 years, but this started just before 18 months for us. His doctor suggested going gluten-free, which we did, later another doctor said we should not do this without testing- because he "needed" gluten in his diet. They tested him (off gluten) said he was fine- negative test.. because he was off gluten, at this time we hadn't realized how that worked, he got much worse, took him off again, then they wanted to retest, so we had to put him back on, I want to say it was 6 weeks, but it could have taken longer, he just got SO sick we couldn't keep doing it. They did the blood test in the ER because we couldn't get in to GI fast enough, they said we could now take him off gluten, so we did, once we got into GI they asked us to put him back on gluten for a couple of weeks (he'd only been off it for 2-3 weeks this time) in order to do an endoscopy/bioposy. When this was done, the results were inconclusive, but he did have low levels of all dissachradise enzymes, which doesn't happen without celiac, but wasn't enough for a true diagnosis, even though the doctors all have said they are convinced he's got it, but can't classicly diagnose without a conclusive endoscopy. They said the villi could have been healing which is why it didn't show up with a conclusive result... so, 2 weeks wasn't long enough. They told us had we not done the testing at this point he would have had to go back on for 6-12 months later in order to get the correct result (which if he were retested now would be what we would have to do), so I would suggest making sure you've given it enough time, otherwise you'll still end up in the spot of not really knowing. If my son wants to later confirm this the doctor said she would help him do so- but that she saw no reason to do so now. Anyways, guess that is a round about answer, but I think it varies by the amount of time off gluten in the first place, how quickly he may be healing (and negative results in kids under 3 can be very difficult to trust), I'd ask more than one opinion I think, it's hard to put your kid through this...

[OBXMom]

I don't know exactly how long, but I just wanted to say good for you to have figured out the importance of eating gluten for the testing. My doctor's pediatrician suspected celiac when he was 18 months, took him off gluten and sent us to a specialist. By the time the specialist tested him he had been without gluten several months, and he incorrectly tested negative. He was not retested until he was 7, and I feel very bad about the unnecessary pain that could have been avoided. An option you could consider is Enterolab - you can apparently be off gluten for a while and it won't skew the results. Hope you get answers soon.

[mushroom]

My 18 month old son was off gluten for almost a month and we saw little if any improvement. We'd sequentially removed gluten, then dairy, then most fruit and were still getting daily diarrhea with only 2 solid poops over 4 weeks. My son is also teething (8 teeth since mid-Dec), so not sure if that is confounding. Have put back gluten, still getting lots of loose stool but it is actually back to being brown and not so stinky vs. green/yellow and horrible after removing gluten, dairy and fruit.

We're due to go in for blood tests for allergy, celiac and other issues soon. I want to make sure that if it is celiac (with possibly several other allergies/intolerences) that I have the best chance for a postive test for antibodies. How long should the gluten be back in the diet for positive results?

I know some will say it doesn't matter about the blood test result, but since we did not see improvement after a month gluten free, I'm looking for any answers right now. My doctors has said one thing, but I no longer trust her, as she recommeded going gluten free before doing testing. Now we're in a this horrible spot. I feel guilty giving gluten now, even though I saw no improvement. Hating this!

The generally recommended time for a valid test is 6-8 weeks. As you have discovered, many doctors do not know this. To recommend giving it up completely before testing is almost beyond belief. If gluten is the problem, once you remove it from the body the body stops making the antibodies to attack it, and those antibodies are what the test measures. It takes a while to build up sufficient antibodies again to register as a positive test, because as with all lab testss the lab has ranges that fall within normal limits, so you must cross the threshold beyond normal, and these limits are set quite high.

I'm sorry your wee guy is having problems. Does he have any other symptoms other than the diarrhea?

[LJ-Mom]

The generally recommended time for a valid test is 6-8 weeks. As you have discovered, many doctors do not know this. To recommend giving it up completely before testing is almost beyond belief. If gluten is the problem, once you remove it from the body the body stops making the antibodies to attack it, and those antibodies are what the test measures. It takes a while to build up sufficient antibodies again to register as a positive test, because as with all lab testss the lab has ranges that fall within normal limits, so you must cross the threshold beyond normal, and these limits are set quite high.

I'm sorry your wee guy is having problems. Does he have any other symptoms other than the diarrhea?

Thanks for your replies. It is hard to tell if he has any other symptoms. He's getting his eye teeth in right now, which are supposed to be really painful - so he has been very grouchy when he has been both on an off gluten. The only other sign is a little eczema on the back of his legs.

I'm a little skeptical of the Enterol testing. Has anyone heard of someone getting a negative test from them? To me it seems like it could be a scam that is giving you the answer you want to hear, since you've chosen to go outside what is accepted by the US medical community.

[OBXMom]

Search this website for "Enterolab" and you will find lots of information. Some doctors do support it, and people definitely do test negative. A friend of ours with a celiac Mom and many longstanding GI issues tested negative, so maybe they have false negatives, too. . . I'm not sure about their expertise with very young children, but I'm sure if you call the number on their website they would tell you. Whatever you do, I encourage you to keep going until you get it figured out. It took me several years of GI appointments with my son to get brave enough to say, "I'm not leaving here without a diagnosis." It sounds like you are on top of things already, which is great.