Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dr. Suzanne Lewis & Celiac Disease Center

Dolcenotte

By Dolcenotte
in Doctors

Recommended Posts

Dolcenotte Contributor
Dolcenotte
Posted

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


aaron&sam Rookie
aaron&sam
Posted
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!

irish Contributor
irish
Posted
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

jayhawkmom Enthusiast
jayhawkmom
Posted
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)

aaron&sam Rookie
aaron&sam
Posted
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! :(

cyberprof Enthusiast
cyberprof
Posted
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

bbuster Explorer
bbuster
Posted
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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


aaron&sam Rookie
aaron&sam
Posted
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.

cyberprof Enthusiast
cyberprof
Posted
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

aaron&sam Rookie
aaron&sam
Posted
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!

aaron&sam Rookie
aaron&sam
Posted
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!

Dolcenotte Contributor
Dolcenotte
Posted
  • Author
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?

flourgirl Apprentice
flourgirl
Posted

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.

bbuster Explorer
bbuster
Posted
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.

aaron&sam Rookie
aaron&sam
Posted
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!

luciasmom Rookie
luciasmom
Posted

Does anybody know if Dr. Suzanne Lewis see Children? She sounds like a good option for my daughter..

Thanks

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of...
    3. Ginger38
      - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this. He couldn’t guarantee me a negative biopsy meant ...
    4. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    5. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,472
    • Most Online (within 30 mins)
      7,748
    731049
    Newest Member
    731049
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      My only proof

      By Mari · Posted

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      Challenges eating gluten before biopsy

      By Ginger38 · Posted

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.