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Dolcenotte

Dr. Suzanne Lewis & Celiac Disease Center

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Just wanted to know if anyone has seen Dr. Suzanne Lewis, an associate of Peter Green? I am going in May for my official diagnosis after all my tests are completed and it is not covered under my insurance. I wanted to be sure that it was worth it to pay outright and go through the hassle with my insurance to get partial reimbursement and have to pay a big deductible. Another question I have is would an insurance company waive the fees and pay for the visit since there are no GI doctors that specialize in Celiac disease except for this center. I went to a regular GI doctor and was not thrilled. He didnt seem to know much about celiac disease and didnt seem so interested. Doctors really need to be trained and insurances need to provide better coverage for people with this disease. Sorry I went so off track but if you have any feedback, please write to me!

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Just wanted to know if anyone has seen Dr. Suzanne Lewis, an associate of Peter Green? I am going in May for my official diagnosis after all my tests are completed and it is not covered under my insurance. I wanted to be sure that it was worth it to pay outright and go through the hassle with my insurance to get partial reimbursement and have to pay a big deductible. Another question I have is would an insurance company waive the fees and pay for the visit since there are no GI doctors that specialize in Celiac disease except for this center. I went to a regular GI doctor and was not thrilled. He didnt seem to know much about celiac disease and didnt seem so interested. Doctors really need to be trained and insurances need to provide better coverage for people with this disease. Sorry I went so off track but if you have any feedback, please write to me!

Our insurance company has been a constant source of frustration. Unfortunately, we learned the hard way how costly test can become when seeing a specialist. Our children see a specialist in Kansas City, Mo. about three hours from home. I have to have every appointment pre-approved including follow up appointments. There is not a GI specialist in our area that will see anyone under the age of 18. Our insurance will cover the out of network as in network if the paper work is in order. That means that I have to start weeks ahead of time getting approval. The cost of the biopsy, lab work, and physician care was over $4,000. The majority of the cost came from the biopsy. I don't feel that the GI doctor has really helped us over the last year, other than the diagnosis! We are currently looking for help through a registered dietitian. :)

Good luck I know finding a good Dr. can be a challenge!


Sandra

two children with Celiac disease, ages 13 and 17. Celiac diagnosis

through blood tests and biopsies.

gluten free (or at least trying) Nov. 2006

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Just wanted to know if anyone has seen Dr. Suzanne Lewis, an associate of Peter Green? I am going in May for my official diagnosis after all my tests are completed and it is not covered under my insurance. I wanted to be sure that it was worth it to pay outright and go through the hassle with my insurance to get partial reimbursement and have to pay a big deductible. Another question I have is would an insurance company waive the fees and pay for the visit since there are no GI doctors that specialize in Celiac disease except for this center. I went to a regular GI doctor and was not thrilled. He didnt seem to know much about celiac disease and didnt seem so interested. Doctors really need to be trained and insurances need to provide better coverage for people with this disease. Sorry I went so off track but if you have any feedback, please write to me!

I am a patient of Dr. Lewis, she is very nice and understanding. I am also going to see her in May. What insurance do you have. I have Aetna.

loretta

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Our children see a specialist in Kansas City, Mo. about three hours from home. I have to have every appointment pre-approved including follow up appointments.

Just out of curiosity... who do you see? Our daughter is also under the care of a GI in Kansas City, at Children's Mercy. Of course, we live here... so it's no big deal to travel. I just wondered if two kids from the forum are seen by the same GI. (Ours is Dr. Li - and we've also seen Dr. Roberts at CMH)


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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Just out of curiosity... who do you see? Our daughter is also under the care of a GI in Kansas City, at Children's Mercy. Of course, we live here... so it's no big deal to travel. I just wondered if two kids from the forum are seen by the same GI. (Ours is Dr. Li - and we've also seen Dr. Roberts at CMH)

They see Dr. Hodge at CMH. My parents live in Independence, so we usually stay with them when we have to go up there.

My daughter also sees Dr. Jacobson for growth delay at CMH, she is actually the reason we discovered Celiac disease.

We just got our latest test results back, and they are still picking up traces of gluten, which is why we need help from a dietitian. I guess I thought we could do it without one! :(


Sandra

two children with Celiac disease, ages 13 and 17. Celiac diagnosis

through blood tests and biopsies.

gluten free (or at least trying) Nov. 2006

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They see Dr. Hodge at CMH. My parents live in Independence, so we usually stay with them when we have to go up there.

My daughter also sees Dr. Jacobson for growth delay at CMH, she is actually the reason we discovered Celiac disease.

We just got our latest test results back, and they are still picking up traces of gluten, which is why we need help from a dietitian. I guess I thought we could do it without one! :(

Sandra,

Can you tell me about your daughter, her growth delay and her age? What are the doctor's doing? Or PM me. I'm not getting good answers and would appreciate any info that you could give me. Thank you!

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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They see Dr. Hodge at CMH. My parents live in Independence, so we usually stay with them when we have to go up there.

My daughter also sees Dr. Jacobson for growth delay at CMH, she is actually the reason we discovered Celiac disease.

We just got our latest test results back, and they are still picking up traces of gluten, which is why we need help from a dietitian. I guess I thought we could do it without one! :(

Test results - are you talking about Ttg blood test, or something else?

We are in Springfield, and my son sees Dr. Roberts at the Children's Specialty Clinic at St. Johns in Springfield when he comes here (2 days per month). We only had to go to CMH once for the initial endoscopy.


Bev

Mom of Garrett - Mizzou freshman; diagnosed Jan 2005

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Sandra,

Can you tell me about your daughter, her growth delay and her age? What are the doctor's doing? Or PM me. I'm not getting good answers and would appreciate any info that you could give me. Thank you!

~Laura

Emilee is 13 (14 in June ), she is 4'10" and is in 8th grade. The Dr. wants to start her on growth hormone therapy. We are trying to get the insurance to pay! We were hoping that through diet changes she would be begin to grow on her own, but really is not making gains quickly enough.


Sandra

two children with Celiac disease, ages 13 and 17. Celiac diagnosis

through blood tests and biopsies.

gluten free (or at least trying) Nov. 2006

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Emilee is 13 (14 in June ), she is 4'10" and is in 8th grade. The Dr. wants to start her on growth hormone therapy. We are trying to get the insurance to pay! We were hoping that through diet changes she would be begin to grow on her own, but really is not making gains quickly enough.

When did Emilee go gluten-free?

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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Test results - are you talking about Ttg blood test, or something else?

We are in Springfield, and my son sees Dr. Roberts at the Children's Specialty Clinic at St. Johns in Springfield when he comes here (2 days per month). We only had to go to CMH once for the initial endoscopy.

My son and daughter both tested positive through blood tests and biopsies in 2006. They have been on a gluten free diet. We repeat blood test looking for their Ttg levels to drop into a normal range. I am told that is how we will know we are doing a good job with their diets. My daughter's levels did drop from >100 to 41.7 normal range being less than 20. My son's first tests Ttg level was >250 we are currently waiting on his last set of blood test results! Are the Dr.s right will blood tests return to normal if gluten is out of their diets? I am very frustrated!

My insurance is through Cox not St.John's!


Sandra

two children with Celiac disease, ages 13 and 17. Celiac diagnosis

through blood tests and biopsies.

gluten free (or at least trying) Nov. 2006

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When did Emilee go gluten-free?

~Laura

Emilee went gluten free in Nov. 2006. It is really hard to believe it has been that long, but it has! She has grown but just not enough! She has felt better and gained weight too!


Sandra

two children with Celiac disease, ages 13 and 17. Celiac diagnosis

through blood tests and biopsies.

gluten free (or at least trying) Nov. 2006

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I am a patient of Dr. Lewis, she is very nice and understanding. I am also going to see her in May. What insurance do you have. I have Aetna.

loretta

I have GHI and am trying to make them cover me in network. Any suggestions?

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I think you are fortunate to be seeing an associate of Peter Green! He has a book published about Celiac Disease. I would advise anyone to read it! I don't believe that there are many out there who have a real grasp about this disease and all of it's manifestations, so I think you are going to a great place. Wish we all had those options. Good luck.


GOD IS GREAT, GOD IS GOOD, THANK YOU FOR OUR GLUTEN-FREE FOOD!

MUSIC IS THE BREATH OF LIFE

Theresa

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My son and daughter both tested positive through blood tests and biopsies in 2006. They have been on a gluten free diet. We repeat blood test looking for their Ttg levels to drop into a normal range. I am told that is how we will know we are doing a good job with their diets. My daughter's levels did drop from >100 to 41.7 normal range being less than 20. My son's first tests Ttg level was >250 we are currently waiting on his last set of blood test results! Are the Dr.s right will blood tests return to normal if gluten is out of their diets? I am very frustrated!

My insurance is through Cox not St.John's!

Our insurance is also Cox, but since there is no local pediatric GI they approved us seeing Dr. Roberts. Even though he sees patients in the St. John's office, all the billing is done through Children's Mercy, which is in network. (The St. John's people schedule the appointments and provide the facility.) The only bad thing is if we need bloodwork done, we have to go to Cox or our primary care doctor's office (what we normally do).

Also, if Dr. Robert's has to do a procedure, it is done in the hospital in KC.

We did indeed see my son's blood levels drop, but it took about a year overall to get negative. The good thing is it has stayed negative. Along the way I would find this or that was not gluten-free and it is very discouraging, but hang in there and keep at it.


Bev

Mom of Garrett - Mizzou freshman; diagnosed Jan 2005

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Our insurance is also Cox, but since there is no local pediatric GI they approved us seeing Dr. Roberts. Even though he sees patients in the St. John's office, all the billing is done through Children's Mercy, which is in network. (The St. John's people schedule the appointments and provide the facility.) The only bad thing is if we need bloodwork done, we have to go to Cox or our primary care doctor's office (what we normally do).

Also, if Dr. Robert's has to do a procedure, it is done in the hospital in KC.

We did indeed see my son's blood levels drop, but it took about a year overall to get negative. The good thing is it has stayed negative. Along the way I would find this or that was not gluten-free and it is very discouraging, but hang in there and keep at it.

That sounds like things are going well for you guys! I can also see our GI Dr. in Joplin as an outreach office, the only thing is they didn't tell me that until I had made I don't know how many trips to KC! Frustating!!!

Our Endocrinologist does not come down here, so we always drive to KC to see her!


Sandra

two children with Celiac disease, ages 13 and 17. Celiac diagnosis

through blood tests and biopsies.

gluten free (or at least trying) Nov. 2006

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