Latent Celiac Disease by: Kerri Knox, RN- The Immune Queen!
Hi Amy,
That's a tough situation. I'm glad that you actually got some diagnoses, but can relate to your frustration.
First of all, I got out of nursing so that I didn't HAVE to bring these subjects up with doctors any more!! It's like banging my head against the wall, so I can relate.
HOWEVER, are you seeing a GI or someone else for your other kids? If you don't, then the solution would be to get a specialist for your kids who ARE diagnosed and take the other kid's lab test along for the ride and ask him about it.
In any case, it seems like your son has SOME antibodies to gluten- just not enough to give him a diagnosis of Celiac Disease. Unfortunately, the ignorance of doctors on this disease makes them not understand that you can DEVELOP this disease. The time period that someone remains undiagnosed and seemingly doesn't have any problems- yet get diagnosed LATER is called 'Latent Celiac Disease'.
So, even in the case that EVERYONE assures you that your son absolutely positively does NOT have Celiac Disease, I would consider him 'Latent' and:
1) Keep him mostly gluten free at home anyway since you'll already be doing that for the other kids and he's so young that it shouldn't be that big of a deal. Just make it lifestyle and he won't know so much. And abstaining from gluten can delay his development of Celiac anyway.
2) Watch for any health problems and assume that they are due to Celiac Disease and insist on getting tested again.
3) Get him tested routinely every couple of years anyway just to make sure that he's not developing it.
Since most of your frustration lies in convincing doctors, etc then my suggestion to you to reduce your stress is to stop trying to get doctors to be on your side with this.
Keep your kids as gluten free as possible, keep gluten out of your house PERIOD. ONE of you parents is Celiac or is a latent Celiac otherwise the kids couldn't have got it- so just make it a point that there is no gluten in your house- ever and your problem is solved at home.
Assume that your son will develop Celiac at some point and begin educating him about it so that he can make gluten free choices when it comes the time if he ever has to be 100% gluten free. But unless someone tells you that he is Celiac or he develops health problems, don't stress about it if he has some gluten at school or with friends.
And just simply do your best. You don't NEED your doctor's cooperation other than to get him tested every couple of years- which you can do through private labs who do that for the public anyway if you need to.
Kerri Knox, RN- The Immune System Queen Functional Medicine Practitioner Immune System
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