Tests Came Back Normal... Could It Be A False Negitive?

[CorbinsMommy]

My son was tested last week for the antigliadin antibodies and the 2 tests came back normal. The problem is, I did not realize that I should not put him on a gluten free diet until AFTER he was tested. I have had him on a relatively gluten free diet for the past 3 months (since May 17th) with only a few slip ups here and there.

My question is, is there a possibility that he was gluten free enough to cause a false negative?

I am putting him back on gluten and am going to request that he be tested again to be sure. Would 2 or 3 months of gluten everyday be enough?

[mushroom]

My son was tested last week for the antigliadin antibodies and the 2 tests came back normal. The problem is, I did not realize that I should not put him on a gluten free diet until AFTER he was tested. I have had him on a relatively gluten free diet for the past 3 months (since May 17th) with only a few slip ups here and there.

My question is, is there a possibility that he was gluten free enough to cause a false negative?

I am putting him back on gluten and am going to request that he be tested again to be sure. Would 2 or 3 months of gluten everyday be enough?

Yes, a low gluten diet is enough to invalidate the test, and yes, that amount of time should be enough. Two to three months is recommended. I don't know how old your son is. For an adult it is recommended the equivalent of 3-4 slices of bread a day be consumed, but I would imagine for a child it would be less. Someone else will probably pop in and answer that question for you, of just how much. Probably just what you would normally feed him on a regular gluten diet.

I am sure you are aware that there is the possibility of false negative test results. It is also very difficult to get accurate results if your child is under five. It is a very inexact science Make sure that when they test they do a total IGA test as well, as some people just do not make the 'normal' amount of antibodies, which invalidates all the other results.

Stay in touch and feel free to ask whatever questions come to mind

[CorbinsMommy]

Yes, a low gluten diet is enough to invalidate the test, and yes, that amount of time should be enough. Two to three months is recommended. I don't know how old your son is. For an adult it is recommended the equivalent of 3-4 slices of bread a day be consumed, but I would imagine for a child it would be less. Someone else will probably pop in and answer that question for you, of just how much. Probably just what you would normally feed him on a regular gluten diet.

I am sure you are aware that there is the possibility of false negative test results. It is also very difficult to get accurate results if your child is under five. It is a very inexact science Make sure that when they test they do a total IGA test as well, as some people just do not make the 'normal' amount of antibodies, which invalidates all the other results.

Stay in touch and feel free to ask whatever questions come to mind

My son is going to be 3 on Oct. 17th. Thanks for the info.

I told the Neurologist that my son had been gluten free or at least gluten reduced since May and he did not say anything about that affecting the results... I don't know if Neurologist will be willing to retest but I am going to push.

There is the possibility that my son is actually just lactose intolerant as the only digestive symptom that I see is loose stools. (I am in the process of trying to determine if it is regular milk or gluten containing foods that cause his loose stools). He does not have any of the other Celiac symptoms that I can tell.

My main concern is that he may have Gluten Ataxia (an MRI showed cerebellar atrophy). He has never been able to stand or walk without something to hold onto. All other blood tests for genetic stuff have come back normal. The Neurologist said that if the Gluten tests were normal there would be nothing else to check for and he would not have a diagnosis.

[cassP]

yes, ditto to everything mushroom said

in addition to retesting Antigliadin Iga & Igg, and asking for Total Iga Serum, you may also want to ask for:

Ttg Iga & Igg

&

Endomysial Antibodies

Celiac can be tricky to diagnose- so good to get a Complete panel.

annoying that the doc didnt prepare you for the first blood test.

[mushroom]

(I am in the process of trying to determine if it is regular milk or gluten containing foods that cause his loose stools). He does not have any of the other Celiac symptoms that I can tell.

My main concern is that he may have Gluten Ataxia (an MRI showed cerebellar atrophy). He has never been able to stand or walk without something to hold onto. All other blood tests for genetic stuff have come back normal. The Neurologist said that if the Gluten tests were normal there would be nothing else to check for and he would not have a diagnosis.

Be aware that if he is lactose intolerant that could be a sign of damage to the small intestine by gluten. Gluten destroys the villi in the small intestines and it is at the tips of the villi that lactase, the enzyme which digests lactose is manufactured. I was lactose intolerant long before I was aware that I was gluten intolerant. You could try giving him another milk (I would not trust soy, but try almond, hemp or rice milk (but not Rice Dream which is processed with barley) for a few days and see if his diarrhea is unchanged. Do not, of course, give him ice cream or yogurt or other dairy while you are doing this.

There are many people on this board who suffer(ed) from gluten ataxia, and it is a serious side effect of gluten. It is troubling that the neurologist would say there is nothing else to check for if gluten testing comes up negative. Did you get a copy of his MRI report so that you could tell us what it said. I am sure you are worried that a three-year-old child is unable to walk without some kind of support. Does the neurologist give you any information or possibilities about this?

I am not sure where you live, but would it be possible to take him to one of the recognized child celiac centers such as that run by Dr. Fassano in Maryland? It is starting to sound like he needs really specialist diagnostic care. I am not trying to worry you, but it is important to explore all avenues and the knowledge about gluten and its effects is not widespread.

[CorbinsMommy]

Be aware that if he is lactose intolerant that could be a sign of damage to the small intestine by gluten. Gluten destroys the villi in the small intestines and it is at the tips of the villi that lactase, the enzyme which digests lactose is manufactured. I was lactose intolerant long before I was aware that I was gluten intolerant. You could try giving him another milk (I would not trust soy, but try almond, hemp or rice milk (but not Rice Dream which is processed with barley) for a few days and see if his diarrhea is unchanged. Do not, of course, give him ice cream or yogurt or other dairy while you are doing this.

There are many people on this board who suffer(ed) from gluten ataxia, and it is a serious side effect of gluten. It is troubling that the neurologist would say there is nothing else to check for if gluten testing comes up negative. Did you get a copy of his MRI report so that you could tell us what it said. I am sure you are worried that a three-year-old child is unable to walk without some kind of support. Does the neurologist give you any information or possibilities about this?

I am not sure where you live, but would it be possible to take him to one of the recognized child celiac centers such as that run by Dr. Fassano in Maryland? It is starting to sound like he needs really specialist diagnostic care. I am not trying to worry you, but it is important to explore all avenues and the knowledge about gluten and its effects is not widespread.

Thanks, I did not realize the connection between lactose and gluten. I have not tried rice or almond milk. What about lactose free milk? That is what I have been giving him for several months now. Started that when he seemed to get "puffy" under his eyes when he had regular milk. I ran out of the lactose free milk and gave him regular milk that the rest of the family drinks for a few days and I think that caused the loose stools. Back on lactose free milk now since yesterday.

The neurologist said there was nothing else to check for because gluten testing was last on the list... they already ruled out a bunch of stuff just by looking at his physical features then they ran a couple dozen blood tests that all came back normal so now they don't know what else it could be.

We live in WA state. Yes, we have been trying everything trying to figure out what's going on. The neurologist was the first doctor I have talked to that even knew what gluten ataxia was!

[mushroom]

Ravenwoodglass who is a great resource on this forum, had gluten ataxia undiagnosed for years, and her brain MRI showed UBO's (unidentified bright objects) which her neurologist did not know about/consider significant, but which are a sign of gluten damage. This is why I asked if you had seen the MRI report. It is always a good idea to get copies of test reports not only so you have them, but so that you can show them to other doctors as well. At least your neuro knows what gluten ataxia is.

Some people can handle Lactaid milk; I have heard of some who can't.

Can you persuade your doc to do the biopsy for villi damage, since the blood tests were invalid? Although you do run into the same problems with healing having taken place... Another idea is to do the Enterolab testing - you can google it online. They test for stool gliadin antibodies, casein and soy intolerance, and will do genetic testing to see if he has gluten intolerance/celiac genetic susceptibility - although this is not diagnostic.

[CorbinsMommy]

Ravenwoodglass who is a great resource on this forum, had gluten ataxia undiagnosed for years, and her brain MRI showed UBO's (unidentified bright objects) which her neurologist did not know about/consider significant, but which are a sign of gluten damage. This is why I asked if you had seen the MRI report. It is always a good idea to get copies of test reports not only so you have them, but so that you can show them to other doctors as well. At least your neuro knows what gluten ataxia is.

Some people can handle Lactaid milk; I have heard of some who can't.

Can you persuade your doc to do the biopsy for villi damage, since the blood tests were invalid? Although you do run into the same problems with healing having taken place... Another idea is to do the Enterolab testing - you can google it online. They test for stool gliadin antibodies, casein and soy intolerance, and will do genetic testing to see if he has gluten intolerance/celiac genetic susceptibility - although this is not diagnostic.

No I don't have a copy of the MRI report but the Neurodevelopment doctor who had the MRI done showed us the MRI pictures on her computer. The pictures showed dark spots, not bright spots. She said the dark spots were fluid where there should be cerebellum tissue.

[MacieMay]

My son is going to be 3 on Oct. 17th. Thanks for the info.

I told the Neurologist that my son had been gluten free or at least gluten reduced since May and he did not say anything about that affecting the results... I don't know if Neurologist will be willing to retest but I am going to push.

There is the possibility that my son is actually just lactose intolerant as the only digestive symptom that I see is loose stools. (I am in the process of trying to determine if it is regular milk or gluten containing foods that cause his loose stools). He does not have any of the other Celiac symptoms that I can tell.

My main concern is that he may have Gluten Ataxia (an MRI showed cerebellar atrophy). He has never been able to stand or walk without something to hold onto. All other blood tests for genetic stuff have come back normal. The Neurologist said that if the Gluten tests were normal there would be nothing else to check for and he would not have a diagnosis.

Are you seeing a Pediatric Neurologist? If not, I would go for a second opinion.

[CorbinsMommy]

Are you seeing a Pediatric Neurologist? If not, I would go for a second opinion.

Yes, I would think so. He is at a Childrens hospital.

[i-geek]

Thanks, I did not realize the connection between lactose and gluten. I have not tried rice or almond milk. What about lactose free milk? That is what I have been giving him for several months now. Started that when he seemed to get "puffy" under his eyes when he had regular milk. I ran out of the lactose free milk and gave him regular milk that the rest of the family drinks for a few days and I think that caused the loose stools. Back on lactose free milk now since yesterday.

If he has gut damage, any dairy might be too much for him. When I first went gluten-free, I had enough damage that I couldn't handle even butter (which should be very low to no lactose), due to the casein protein in dairy. It was too much for my gut to handle. It took a few months and I still have problems with high lactose foods, but I can eat butter, cheese, yogurt and lactose-free milk now with no problems. If he'll eat yogurt, So Delicious makes a coconut milk one that is, in fact, delicious and will help him get some good probiotics. I ate that stuff almost daily for the first couple of months after going gluten-free.

(And I too had negative blood tests- my doctor said that she couldn't find anything wrong except a slightly elevated WBC count, which she attributed to fighting off a cold. I had also been on a low-gluten diet, and it's entirely possible that IgA-deficiency runs in my family. It's not something she tested for, and refused to test further when the TTG IgA test came back "normal". The gluten-free diet is the only thing that has helped my symptoms after 15 years of inconclusive tests and doctors telling me that they had no answers. It's cleared up everything except the infertility, and boy, do I ever know it now when I'm accidentally glutened. Demand a full test panel after loading him up with gluten and even if the panel is inconclusive, if he's improved on the gluten-free diet, that might be enough of a diagnosis for gluten intolerance. Best of luck to you both.)

[Skylark]

Your neurologist is right that he might only show anti-gliadin IgA or IgG. The anti-TTG is for the gut version, not the brain version. Brain antibody tests don't exist yet, except a few researchers who are working on them. It's unfortunate that your neurologist was unaware the gluten-free diet makes the antibodies go away, but in fairness that's not really mentioned in the gluten ataxia literature.

If you do a gluten challenge your son should still have a full celiac panel, since he has gut symptoms as well. Make sure he gets the newer DGP test (deamidated gliadin peptide) as it might come up positive when the anti-gliadin IgA doesn't.

Unfortunately, there are also genetic/developmental abnormalities where the cerebellum is underdeveloped.