Please Help Us Understand?

[Lisette]

Hi! We just got our 13 year old son's test results from Enterolab today and are a little confused... He shows negative on everything but does have two copies of the gene that

(Quote): "predisposes to gluten sensitivity (DQ1 or DQ3 not subtype8). Having two copies of a gluten sensitive gene means that each of your parents, and all of your children will possess at least one copy of the gene. Two copies also means there is an even stronger predispostition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe."

OK - I give! Does this mean that he will be healthier and feel better on a Gluten Free diet? Does anybody out there have kids with two gene copies like this and what did you do? He has so many symptoms and we are really anxious to do this as a family if we need to.

Please write in if you have ANY advice or help!

Thanks so much,

Elaine

[Guest greengirl]

Hi Elaine!

Is your son symptomatic? If not, then I would say that he is not actively gluten intolerant at this time, but could have a high likelihood of becoming intolerant in the future. If he's showing symptoms, then I would definitely put him on a gluten free diet at least on a trial basis (assuming you've ruled out other conditions).

I have all the celiac symptoms and my enterolab test showed that I have 2 copies of the celiac gene.

However, only my IgA was slightly elevated. I've been very sick so I expected my numbers to be higher, but in any case the gluten free diet helped me tremendously and I will never eat gluten again.

My daughter on the other hand hasn't been as overtly sick as me, but often complains of tummy aches, tiredness and has short stature for her age. Her enterolab results were high in every area including an intolerance to casein. She has 1 celiac gene and 1 gluten intolerant gene.

I'm not sure there's a correlation between the test numbers and the outward indications of the disease. So go with your instinct...

Christine

[CarlaB]

Apparently you carry the gene and don't necessarily have the sensitivity. The genes predispose him to trouble which could be triggered later. It can't hurt to go gluten free to see if he feels better, but if he doesn't, I would keep looking in case the problem is something else. Even Enterolab says dietary response is really the most important indicator. If he doesn't feel better on the diet, I wouldn't keep him on it since he currently does not have the reaction according to the test. The diet is not fun.

[TCA]

I'm not familiar with enterolab, but my kids had genetic testing with Prometheus. My son had Both gense aned my daughter has 1. Both were symptomatic, but have improved with the gluten-free diet. I'm not sure about the implications for parents, but I now believe that I too am gluten intolerant.

[Lisette]

I'm not familiar with enterolab, but my kids had genetic testing with Prometheus. My son had Both gense aned my daughter has 1. Both were symptomatic, but have improved with the gluten-free diet. I'm not sure about the implications for parents, but I now believe that I too am gluten intolerant.

Thank-you all for your responses! Christine, yes, Brent does have lots of the GI symptoms, plus seizures which started about a year and a half ago. I just recently began finding posts about Gluten Intolerance or Celiac Disease aggravating/causing seizures. That is when we really began trying to find out if he has GI or celiac disease. Nini and others on this forum have mentioned that their seizures stopped or lessened when they became Gluten free!

Anyway, he has so many other GI symptoms that we think we should go ahead and start the diet as a family. We just hate to do it if other parents think this is "jumping the gun" since he tested negative but has the two genes for gluten sensitivity.

Thanks again for all your help!

Take care,

Elaine

[AndreaB]

Thank-you all for your responses! Christine, yes, Brent does have lots of the GI symptoms, plus seizures which started about a year and a half ago. I just recently began finding posts about Gluten Intolerance or Celiac Disease aggravating/causing seizures. That is when we really began trying to find out if he has GI or celiac disease. Nini and others on this forum have mentioned that their seizures stopped or lessened when they became Gluten free!

Anyway, he has so many other GI symptoms that we think we should go ahead and start the diet as a family. We just hate to do it if other parents think this is "jumping the gun" since he tested negative but has the two genes for gluten sensitivity.

Thanks again for all your help!

Take care,

Elaine

I wouldn't think it was jumping the gun to go gluten free. I have found out I have allergies to wheat/soy/dairy among other things. My infant son broke out in ezcema which is why I was tested. He cleared up after I cut out soy and wheat. I have just ordered tests from enterolab even though I can't get my infant tested. My whole family is planning on going gluten free. My other two children have always had mild eczema on their cheeks.

[2kids4me]

My daughter had severe migraines prior to starting the gluten-free diet for celiac disease. She would stagger down the hall to bed.

There are journal articles regarding the neurologic impact of gluten in a celiac. For those interested please see: Open Original Shared Link

from: PEDIATRICS Vol. 108 No. 2 August 2001, p. e21

Brain White-Matter Lesions in Celiac Disease

part of the intro: Celiac disease (celiac disease), or gluten sensitivity, is considered to be a state of heightened immunologic responsiveness to ingested gluten proteins in genetically predisposed individuals. The gastrointestinal manifestation suggests a severe enteropathy of the small intestine with malabsorption, steatorrhea, and weight loss because of a deranged mucosal immune response. Neurologic complications occur, especially epilepsy, possibly associated with occipital calcifications or folate deficiency and cerebellar ataxia.