To diagnose or not to diagnose...

September 12, 2004

For all of those parents pondering whether to try for a

formal diagnosis or not…I would like to share my experience – maybe

it will help to make your decision.

My Son was diagnosed with CD two years ago at age 3. My DH

was diagnosed six months after. When my DH switched jobs, we lost our health

insurance. We chose not to do COBRA, because the new employer promised health

coverage within 6 months. That was over two years ago, and we are just now

getting coverage. We applied for an individual policy (at the employer’s

request), because it was less expensive for the employer. The insurance company

wrote a waiver regarding my Son’s and DH’s CD. For anyone not

familiar with waivers…it basically means they will not cover anything

related to CD. It’s a scary thought! There’s potentially an

enormous gray area, with all the research linking many illnesses/syndromes to

CD.

I am convinced my Daughter also has CD. The results from her

first blood test were mixed and she has foul-smelling diarrhea anytime she eats

something with gluten. After what we’ve been through trying to get health

insurance, there’s no way I’m getting her tested again…..I

don’t want that label following her around for the rest of her life, if

it means she won’t be fully insured. I had been experiencing CD symptoms

for about six months when I did the gene testing through Enterolab. I’m

positive for DQ2. Armed with that info….we’re all GF now. When she

is old enough to understand, I will tell my Daughter why I chose not to get her

tested …and when Mom carries the main gene, and Dad has CD…there’s

really no escape anyway!

Our pediatric GI warned us about the insurance companies.

Now I know she was right! I recommend going to an independent lab, such as

Enterolab or Prometheus. If you are positive, do not share this info with your

doctor as he/she will note it in your file. Insurance companies are extremely

sneaking about getting your medical information. Protect yourself!!!

I hope this was helpful to someone out there! J

~Jill

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