is it possible to be gluten sensitive and still have normal test results?

[passthemanna]

I feel pretty certain that DS is sensitive to gluten. He has poor tooth enamel and hasn't been on the pedi's weight chart since he was about 6 months old. On a hunch I decided to remove gluten from his diet about 3 months ago. I took him for his check up last week and he went from being off the weight chart to the 5th percentile. Over the past few weeks due to some traveling and just early pregnancy exhaustion I've been a bit more lax on restricting gluten. His pedi tested him for celiac disease last week and the results came back normal. She said even if he were just gluten sensitive the test should have shown something. She advised me to feed him gluten and see how he grows over the next 3 months...my gut is telling me to avoid it.
anyhow- I'm just wondering if anyone had normal test results in spite of actually being sensitive to gluten? Or has anyone dealth with something similar?
well I think I just found an answer to my own question
"If you have been gluten free for a week or so, it will not make any great difference. The response might be marginally less but the difference is insignificant because the body has not had time to respond to the change. Conversely, if you have been gluten free for a protracted period of time and decide to be tested, a brief challenge of a couple of weeks is not enough to elicit a response and get an accurate test."
-celiac.com
Though I'm still interested in other experiences.

[WanderingJuniper]

Bird has been tested twice with the blood test. Both results came back negative. The first time I didn't introduce enough gluten. It is so hard to give your child something you have watched make them sick. The second time she had just eaten like everyone else in the house for an entire summer. Still negative. She is clearly gluten sensitive. Doesn't matter to me what the tests say. I've seen the results of removing gluten and Bird is now old enough to tell us how she feels when she eats it. I plan on listening to my child and my doctor respects that.

[KLin]

I keep my son away from gluten and dairy. He had blood tests and one ped said to keep him off, the other said to give it to him, that his numbers weren't that high and he would grow out of it. :scratch

The tests were done at one year of age, we have tried a few times to introduce wheat and within a normal serving or two he is having symptoms. By age 4 we tried again. He told his dad his skeleton hurt, his skin broke out and he was curled up on the couch.:cry

He can have a small (1/2) serving of yogurt or ice cream. More than that in a few days and it needs to be a non-dairy version. I keep non-dairy at home, but if he is out he can handle 'sharing' a small treat with his brother.

I keep dairy free/ gluten free treats (mini muffins, cup cakes, small pizzas and cookies) in the freezer in case he is invited to a friends or a party.

I go by how my son acts and feels. :yes I do not need a formal diagnosis on the medical form in a Dr office to feed my son what he needs.:rockon

[sweetpeasmommy]

DS shows no allergy results, but his reaction to it is horrific and looong lasting. I have not had him tested for celiac because putting him back on would be cruel to him and torture for me. At this point it doesn't really matter if he is intolerant, allergic, celiac or from mars, it's not even close to okay for his body and we avoid it at all costs. I would trust your gut Mama.

[passthemanna]

Thank you for all your responses. DS doesn't seem to have an acute reaction to gluten like he does with most dairy (cheese is fine :shrug3). I think his reactions seem to be more long term- poor tooth enamel and slow weight gain. So I think what I'll do is avoid giving him gluten myself, but not fret over other people giving a small amount to him once in a while...I'll just tell them "no bread or pasta," and not really scrutinize over an occasional cracker from gramma or dad. From what I understand most people eat too much gluten anyway, and it's not like it's a vital nutrient, but at the same time it's difficult for us to afford gluten free packaged goods (bread etc). So I'm thinking of just avoiding those kinds of products altogether, serving more whole grain rice, quinoa, veggies and such.
I'm surprised his doctor is still nice to me after all the advice I don't take from her :shifty

[cbmk4]

Avoiding gluten and dairy is more a pain for parents than anything else. What I mean is, a person can still have a totally healthy diet while avoiding those things, but it does take a fair amount of self-education and vigiliance. I'm betting your doctor knows that your kid is still getting good nutrition with/without gluten and dairy so there's no need to dictate/argue with you.

We're in a similar boat only with my oldest dd. She had one blood test that was negative for celiac. We may spring for the genetic test (not dependent on whether you're currently getting gluten in the diet) to be able to rule out for sure celiac disease. We'll probably only do that soon if she doesn't have symptomatic improvement on the GF/CF diet. If she's better, we won't need to rush into the tests.

It is important to know for long term health, IMO, if it's true celiac or just gluten intolerance. Celiac is associated with other autoimmune diseases and a higher chance of intestinal lymphoma later in life, so we'd want to know for sure at some point if celiac is really what we're dealing with.

[Serafine]

The genetic test is what my doctor (who is highly "involved" in celiac medicine, if you will) suggests. Because if you have the genetic predisposition for celiac, it will be in the DNA code regardless of your diet.

She said she has seen too many false negatives with both the blood marker test, as well as the inestinal biopsy test. AND, she said that if someone has the genetic predisposition, is asymptmatic and therefore doesn't follow a GF diet...they are at a much higher risk for things like lymphoma and other illnesses.

[passthemanna]

:think hmmm...I'm going to look into the genetic test. My aunt is celiac (has celiac? how do you say?) so it's certainly a possibility. It's scary to think of him having celiac disease and having a false sense of security from this test

so I'm thinking of ordering the test here- https://www.enterolab.com/StaticPages/TestInfo.aspx the gluten sensitivity stool & gene panel when we have the money. I don't need to add gluten back into his diet so that's great and no more traumatizing blood draws (that was awful!)

[cbmk4]

from my understanding, the stool test for celiac is not highly reliable (the celiac support groups don't even recommend it) The genetic test can either be a blood or saliva test. A lab called Prometheus can do a saliva test without a doctor's order; you just have to cough up the 300 dollars or so. It tests for the two genetic variations known to accompany celiac disease.

[ArmsOfLove]

the answer to the OP question is yes.

I explained to the doctor what happened when ds and I ate gluten and how different it was when we didn't. He gave us an official dx so that we wouldn't have to endure being on gluten for accurate testing. In fact, he said since the only "treatment" is that you avoid gluten and no one would do that without needing to, he wasn't worried about the testing :)

[3PeasInAPod]

from what I've heard from naturopaths, the test can give a false negative unless your 6 or older. Elimination diet would be the best way at this point

[Lantern Light Mama]

Yes, it is very possible to have an intolerance without testing positive. For instance, on the test, I am negative. When I eat gluten I break out in acne very bad, my skin dries out and itches, and I have stomach upset. I didn't really understand it affected me this bad until I went a couple of months without gluten and recently reintroduced it into my diet. From what I understand it is inflammation from the wheat protein that causes issues like mine.:hugheart

[passthemanna]

Thanks everyone :D
so now I'm thinking I'm not worried about what a test says. The more research I do the more I think I may also have a gluten sensitivity. So DS & I will just go GF :yes