Re: To diagnose or not to diagnose...

[Guest guest]

Jill, I think this problem is something that the American Celiac Task Force should handle.

http://www.celiaccenter.org/taskforceabout.asp Because of your e-mail, I have written to them about this.

I have read that two years after gluten-free diet begins, most celiacs are healthier than average. The insurance actually should be cheaper.

Your husband's employer probably broke his contract with your husband, but many people wouldn't want to enforce it.

Jo Anne

To diagnose or not to diagnose...

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

[Guest guest]

Jill, I already have received a response from Dr. Fasano! I quote his answer and my message to him below:

Jo Anne

" To diagnose or not to diagnose...

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

[Guest guest]

Jill, I already have received a response from Dr. Fasano! I quote his answer and my message to him below:

Jo Anne

" To diagnose or not to diagnose...

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

[Guest guest]

Jo Anne….I hadn’t thought

about notifying the American Celiac Task Force. Much thanks!!

Jill

Re: To

diagnose or not to diagnose...

Jill, I already have received a response from Dr.

Fasano! I quote his answer and my message to him below:

Jo Anne

" To

diagnose or not to diagnose...

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

[Guest guest]

Jo Anne….I hadn’t thought

about notifying the American Celiac Task Force. Much thanks!!

Jill

Re: To

diagnose or not to diagnose...

Jill, I already have received a response from Dr.

Fasano! I quote his answer and my message to him below:

Jo Anne

" To

diagnose or not to diagnose...

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