Testing; How Important Is It I Know If My Daughter Is Celiac?

[TammyK]

My 11 yr old daughter started having seizures in May. We have had health issues since birth. At age 6 Asthma started after 6 years of chronic ear infections, diarrhea, and stomach cramps in her first year. At 6 years old we changed her diet to treat her Asthma and allergies. Little did we know that switching from wheat to spelt was doing nothing for her. Finally it caught up with us and she started with the seizures and migraines 5 years later. (UGH!)

Well, long story very short, she is now gluten-free and caseine-free. It took no time at all for her body to respond. We are still seeing doctors and next month she will have a 24 hour sleep deprived EEG/Video Monitoring at the Children's Hospital with a Pediatric Neurologist. I am to feed her the foods that make her sick and provoke her body to seize with any known trigger! (Not looking forward to that). It is very clear that gluten-free is what she has needed all along since now even her Asthma has cleared up here in the midst of pollen season! (Wow!)

Our ND did the blood test for Celiac (Negative) and suggested futher stool testing. What do you all think? How important is this for me to do more testing? My ND says blood test can turn out false negatives. The testing is so expensive and we have had to put many tests (MRI, CATs. EEG's) on our credit card. She is on a gluten-free and caseine-free diet and it is obviously what her body is begging for and we plan to stick to it. How important is it that I dig deeper into stool testing? Must I know if she is truly Celiac? What are the chances that she is Celiac? What could you share with me that is for you hindsight and for me, foresight? Does anyone know about the stool testing at EnteroLab?

Oh, and I must add, I have challenged foods and I itch when eating wheat, oats and eggs. I have environmental allergies as well. To support her, I am eating her diet and have noticed dramatic improvement with what I thought was environmental allergies. My symptoms are literally gone. (Wow!) My hubby and other three children are perfectly healthy.

Trying to decide on my next step.

TammyK

[happygirl]

Stool testing cannot diagnose Celiac Disease.

Celiac Disease is currently diagnosed by bloodwork/biopsy.

Stool testing can indicate gluten sensitivity. So can a diet challenge like the one you have done, that has provided you with answers on how your daughter responds to the diet (positively!)

[Adelle]

Put it this way, if her tests were negative, what would you do differently? And what if they were positive?

When I went gluten-free it was kind of a hail mary, last ditch effort to figure out what was wrong with me. AFTER I had such a fast and marked improvement, the docs wanted me to go back on gluten so they could do an endoscopy. But I realized that regardless of the results, I wanted to be gluten-free for life, so why bother with them cutting my poor intestines? Hadn't they been through enough?

If you want any hope of a positive test, you're gonna have to put her back on a LOT of gluten, for a LONG time. Is it worth that for a medical piece of paper??

I can tell you that for me, it was most definitely not.

Good luck with whatever you decide!