Both Kids Negative

[Luisa2552]

I got the results of both my girls' antibody tests and they were negative in all counts. I'm still suspicious of my eight year old being gluten intolerant so we have started her on the gluten-free diet.

So, I have a few questions. First, at some point should I have them re tested? My 11 year old is symptom free except for dental enamel problems and that cound be something else. The younger one is more symptomatic- some GI stuff but only occasionally. With her it's more behavioral- irritable with a capital I, she's always tired and she has a hard time consentrating and thus has difficulties with her school work. She also has enamel problems. Maybe I'm grasping at straws here but I figure it's worth trying the diet and see if things improve. Has anyone had a child like this and gone gluten-free? How long until you saw an improvement (if any at all?)

[gfmolly]

I got the results of both my girls' antibody tests and they were negative in all counts. I'm still suspicious of my eight year old being gluten intolerant so we have started her on the gluten-free diet.

So, I have a few questions. First, at some point should I have them re tested? My 11 year old is symptom free except for dental enamel problems and that cound be something else. The younger one is more symptomatic- some GI stuff but only occasionally. With her it's more behavioral- irritable with a capital I, she's always tired and she has a hard time consentrating and thus has difficulties with her school work. She also has enamel problems. Maybe I'm grasping at straws here but I figure it's worth trying the diet and see if things improve. Has anyone had a child like this and gone gluten-free? How long until you saw an improvement (if any at all?)

Hi Sara,

I am in a similar situation and have decided to try a week of gluten free with my son as well. He has complained of tummyaches after gluten-rich meals and has a rash on his cheek that seems to flare. Both of my kids tested negative. Since the testing seems to be so inaccurate and the disease so tough to diagnose, I've decided that if ds is willing to try a gluten-free diet and it makes him feel better, now is the time since he is only 6. I really think that the testing is up to you, but if they seem to respond to a gluten-free diet and you are already diagnosed with gluten intolerance in the least, this certainly can't hurt.

Hopefully someone with a gluten-free kid can give you advice on how long it took for the symptoms to be relieved. Best wishes!

Terri

[Darn210]

I'm kind of in the same boat . . . My daughter has a positive diagnosis. My son is genetically at risk and the blood test is a little muddy (by my interpretation). He will see the GI in about 2 1/2 weeks. I told my husband that regardless of what the doc says, I'm going to try him gluten-free for 3 to 6 months. He has no GI symptoms but he is 8 and is about the size of a six year old. His growth curve has always been the right shape (so the pediatrician was not concerned), it was always just lower than the 5% line. I'm hoping to see a growth spurt (that's why I will be doing such a long trial). A better attention span would be nice, too, as it takes forever to get homework done. However, we are waiting until we see the doc so that if there is any additional testing required, we won't mess up the results.

[Cheri A]

My dd has multiple food allergies including wheat. The allergist ran the celiac panel for her and it came back inconclusive. Some of the panels came back positive, some negative. We decided not to go for a biopsy and try going gluten-free anyway. It's amazing how much better she feels. Before, she was always complaining of stomach aches, and either had constipation or diahrrea. It was also starting to cause her to vomit. It took a very little time before we saw improvement.

I would try to go gluten free and just see if it helps.

[Nic]

I would recommend trying the gluten free diet for longer than a week. Sometimes it takes a few weeks to see any improvement and than a couple of months to see total improvement.

[hathor]

You could try Enterolab testing. Their tests are supposed to pick up a problem with gluten prior to it showing up in blood testing. You could test for other food intolerances at the same time. Many have seen behavioral changes in children with a gluten free casein free diet. (I'm reporting what I've read, not from personal experience.)

Of course, the best test is to go gluten-free. Bear in mind, though, that this will eliminate the possibility of accurate blood testing later. For Enterolab, the tests are supposed to be accurate at least up to a year from the time gluten was last eaten.

[janelyb]

I'd say based on your own personal results especially your genetic tests your kids have atleast 1 celiac gene, so it is possible for them to in the future develop the disease why not start eatting healthier now?

And a wise man once told me one often does not test positive on a blood test until the major damage is already being done. I agree the stool tests from enterolab are a more accurate option of testing then blood tests.

And I wouldn't agree with the results of your biopsy, sounds like begining of celiac to me. I heard it can only rule celiac in not out. Ask for a 2nd opinion on your biopsy slides.

[ShayBraMom]

I would also recommend EnteroLab as well! I'm debating right now myself! To my thread two people had answered that they worked wiht them and it was awesome! The lab itself says it doesn't matter if they kids are on the Glutenfree diet or still on it, the Stooltest they have is so sensitive it will still pick up, in fact they encourage people NOT to consume gluten just so they would get a more accurate result!

This is what they wrote in their Testing-FQ- this is their Website-Adress and they are specialized in these things!

Open Original Shared Link

If I am already on a gluten-free diet, do I have to return to eating gluten to be accurately tested for gluten sensitivity using the stool test?

Although it has been stated that a person must be eating gluten to be able to detect antibodies to gliadin in blood, we have found that this is not true for our stool tests (and other researchers have found the same when sampling upper intestinal contents with tubes). Because the stool tests (but not blood tests) can find low levels of antigliadin antibody produced in the intestine, we actually recommend that you be tested on your current diet, that is, gluten-containing or gluten-free. The amount of antibody being produced at any given gluten intake will be more meaningful if it reflects your normal condition rather than an artificially created condition by reintroducing gluten (if you have been off of it for a time) or trying to eat gluten in excess. Furthermore, even though a person removes obvious sources of gluten from the diet, there continues to be the potential of hidden gluten in less obvious food or drug sources (such as food additives, medicines, lotions, etc.), or when eating outside the home. Thus, it is possible that the test still may turn up positive for this reason.

Our recommendation then is simply to eat what you are currently eating, or whatever you think is best for you right now. There is no need to introduce the food being test for in any amount, and especially not in large amounts which could make you ill. If you have been off gluten for short periods, the results will be very close to those if you never had removed gluten from the diet. For people who have been gluten-free for longer than 1-2 years, it is actually best to remain gluten-free for the stool test, and to also rely on the gene test to aid in the diagnosis (see next section).

Thus, it is better to test on the current diet before adding the unreliable variable of a one to two week gluten challenge. It varies in different people how they or their immune system will react to gluten, and how long it would be required to eat gluten to make tests positive (as they once may have been before starting the diet). There are no guarantees that a truly gluten sensitive person will have positive tests after a short 1-2 week gluten challenge anyway, even if they get symptoms from it.

Here are the potential scenarios of stool and gene test results if testing is performed on a low gluten or gluten-free diet (rather than doing a gluten challenge).

Scenario 1

Because the stool test is much more sensitive than the blood tests, and the antibody can be produced for years after removal of gluten from the diet, the stool test may well be positive despite being on a reduced or restricted gluten diet. The gene test (which we recommended as a complementary test to the stool testing, especially when someone has been off of gluten for long periods of time because the gene test is never affected by the diet) likely will support the positive results.

Scenario 2

The stool test is negative (because they have limited or stopped gluten for a long period like many years) but the gene test is positive. This data is useful because it tells you at least that antibody production to gluten has stopped on the gluten-free diet. And the positive gene test or potential improvement you may have experienced after beginning your gluten-free diet are supportive that you are gluten sensitive. If the gene test is negative, it is still remotely possible to be gluten sensitive.

Alternatively, if you choose to do a gluten challenge at the outset (again which we do not recommend) and the test is negative, it may be so because damage and antibody production has not yet been initiated. And you do not get the benefit of a comparison of what your antibody levels were when gluten was out of the diet. The comparison itself before and after gluten can be helpful, and is definitely more meaningful than testing after a short time on gluten after being gluten-free for an extended period.

Thus, I recommend testing in the stable gluten-free condition first then in the variable gluten-challenge condition only if necessary.

One final note. Sometimes people experience dramatic improvement of symptoms and feeling of well-being after beginning a gluten-free diet. If the improvement to health was dramatic following removal of gluten from the diet, then this in and of itself is a positive diagnostic test (and perhaps the ultimate test).Top

[taweavmo3]

I think behavior problems are very common among Celiac or those that are intolerant to gluten. Personally, I shock myself at how mean I can get if I've been glutened, and my son is the same way. I can tell within the hour if he's had a gluten accident. He's only 8, but he gets extremely emotional and will start bawling for no apparent reason. Then he'll get so angry at everyone and everything, and fly off the handle. It's miserable for everyone, but it's worse for him. He hates acting that way, but he truly can not seem to help it. But when he is gluten free, he is a very happy, easy going child. My daughter also has behavior issues with gluten.....she's five years old, but gluten will cause her to have an all out tantrum, where she is kicking and biting everything in her path.

Gluten accidents truly create havoc in our home! So yes, behavior issues are very common and was the main motivating factor when it came to putting my oldest on the diet, despite his negative test. I'm so thankful I did! Good luck.

[Luisa2552]

My daughter sounds like your son. She too is 8. We have been 5 full days gluten-free and maybe I'm just wishing it to be so but she is a different kid! She did have a full blown melt down on day 2 but since then she's been almost manically happy, no even as much as a pout and for the last 2 days I haven't had to drag her out of bed. The doubter in me is thinking it's because of the excitement of going back to school(today). The real test will be this week and how she continues to do. The last few years we've had difficulties after the first one or two days of school. So I wait and watch and hold my breath but so far I am thrilled with the response of going gluten-free with her. But I look ahead and wonder what will be next. Do I keep her gluten-free for life because her behavior improved? Do a gluten challenge in a month or so and see if she gets worse? I'm probably thinking doing the enterolab stool tests, but really it seems the reaction to gluten-free diet is the bottom line.

[taweavmo3]

I've had the same dilemma regarding how long to keep my oldest son on the diet. With my younger children, I'm so worried about them reaching their milestones, that putting gluten back into their diet hasn't even crossed my mind.

I have found though, that with time, those thoughts have really dissipated. The longer he stayed on the diet, the more severe his reactions became if he was accidentally glutened, or if he cheated. When this happened, we had alot of chats regarding how to recognize his symptoms, and how he feels and acts when he gets gluten. In the end (b/c he did cheat some in the beginning) I always closed the discussion by letting him know that ultimately it was up to him to decide to stay on the diet or not. Letting him have control over how he feels seemed to have helped, he hasn't cheated in almost a year now, and I have proudly seen him pass up Oreo cookies at the end of soccer games, LOL.

I do try to make it as easy as possible for him though.....we have plenty of gluten free treats around the house, I try to pack fun lunches, and we frequently discuss healthy food and it's benefits. My hope is that the kids don't ever really feel deprived of good food, and learn to take control of their health at an early age. Ask me in 10 years if he is still gluten free and sticking to the diet, and I may have a different story. But just like every other facet of parenting, I can only do my best to provide my kids the tools and knowledge necessary to make the best choices in life. After a certain point, it'll be out of my hands and I will just hope and pray I've done a good job!

Sorry for my ramblings, lol......as you can tell, I've thought this out quite a bit and struggled with the decision myself. But I'm comfortable with it now, and feel like I'm doing the right thing. Take care!