Jump to content





   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Real Celiac Specialist In Seattle?


  • Please log in to reply

10 replies to this topic

#1 GlutenFree-MLDub

 
GlutenFree-MLDub

    New Community Member

  • Advanced Members
  • Pip
  • 20 posts
 

Posted 19 July 2012 - 11:28 PM

Hi, Does anyone know of a 'real' celiac specialist in Seattle? I know about Driscoll... and he's not what I'm looking for. He told me not to worry about my Celiac because I had a biopsy after a month on GFD last year and it was clear. I had records in my hand from Columbia 2004-2006 (from when I lived in NYC) which stated a Celiac diagnosis (although 'mild' compared to a lot of people here). I used to see Suzanne Lewis at Peter Greene's office, but now that I'm in Seattle, finding someone with that level of expertise is tough. There are many GI specialists who list Celiac in their areas of expertise, but they really aren't. My biopsy was done at Polyclinic and then I saw Driscoll as a backup. The doctors in both of those places told me I didn't have to be eating gluten since it had only been a month on GFD. I need someone who is well-versed on the neuro symptoms because my gut symptoms had faded over the years and all I had was neuro (BAD) when I saw these docs. They really didn't know anything about it.

My primary is a great ND and she seems to know a lot, but I much prefer my experience at the Celiac Disease Center at Columbia. <spoiled>

Any recommendations would be great. Or maybe some great doc can move to Seattle and start a research center! ;)

There is actually this guy here, Dr. Wangen, http://ibstreatmentcenter.com/ - but he doesn't take insurance and I'm hoping to find an MD to compliment my ND.

Thanks!
  • 0
Celiac disease, undiagnosed for 20 years
Add to that 9 years of denial and doctors telling me to ignore the diagnosis :huh:
Mix in 2 years of debilitating illness from complications of Celiac, leading me back to the gluten-free light
Diagnosed Celiac 4/2004
Moving on officially with GFD and Gluten-free since 5/2012

Celiac.com Sponsor:

#2 Piccolo

 
Piccolo

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 136 posts
 

Posted 20 July 2012 - 08:02 AM

Welcome to the board. I was going to suggest Dr Wangen, but I see you have already heard about him. In my opinion he is one of the best. He will cure what ails you.

Susan
  • 0
Dairy/Cesain free Oct. 2005
Gluten free June 2006

#3 GlutenFree-MLDub

 
GlutenFree-MLDub

    New Community Member

  • Advanced Members
  • Pip
  • 20 posts
 

Posted 20 July 2012 - 10:01 AM

Welcome to the board. I was going to suggest Dr Wangen, but I see you have already heard about him. In my opinion he is one of the best. He will cure what ails you.

Susan


Thanks Susan for the welcome!

I'm going to keep Dr. Wangen in mind. Currently my insurance covers 100% in network, but that is going to end next year at which point, it may not be that much different to see someone out of network. I'll wait and see.

I keep hoping there's a Peter Green type doc here, but it doesn't seem there is.
  • 0
Celiac disease, undiagnosed for 20 years
Add to that 9 years of denial and doctors telling me to ignore the diagnosis :huh:
Mix in 2 years of debilitating illness from complications of Celiac, leading me back to the gluten-free light
Diagnosed Celiac 4/2004
Moving on officially with GFD and Gluten-free since 5/2012

#4 WitsEnd

 
WitsEnd

    Community Member

  • Advanced Members
  • PipPipPip
  • 43 posts
 

Posted 23 July 2012 - 09:21 PM

I've been surprised they are so hard to find in the Seattle area. We have so many top notch specialists here, but finding one with a celiac focus has been difficult. I think bastyr has a few homeopathic doctors that focus on celiac but I am not positive. I've had good luck with Virginia Mason GIs, but I'm still early in my testing and such so who knows how it will turn out. They have a good reputation though.
  • 0

#5 seattlejoy

 
seattlejoy

    New Community Member

  • Advanced Members
  • Pip
  • 11 posts
 

Posted 29 July 2012 - 09:07 PM

Wouldn't it be AMAZING to have a research center started here? I am in the same boat as you. I had my biopsy at Eastside Gastro and wasn't impressed with what followed my diagnosis- 3 sheets of paper. One with a list of gluten foods, one page printed from the internet with Celiac Disease Foundation's website (I think), and the last was a small list of gluten-free food. Basically- "Good luck with your Celiac! See you in 6 mos to retest your levels!"

No care whatsoever for repairing my gut, supplements, testing for other conditions and deficiencies, etc. Thankfully I have an ND who tested everything I asked for and helped get me on thyroid and a bunch of vitamins and supps. Now I need someone who will take care of me and tell me what the next step is instead of me doing hours of research and taking it to my ND. I know there are still things that aren't right because I still feel horrible.
  • 0

#6 GlutenFree-MLDub

 
GlutenFree-MLDub

    New Community Member

  • Advanced Members
  • Pip
  • 20 posts
 

Posted 30 July 2012 - 10:24 AM

My issues are severe enough that I'm not sure my ND is going to be enough. I had severe neuro complications. I'm not sure if Dr. Wangen can help me to the degree I need either. Part of me wants a celiac specialist from one of the centers to tell me that what I've been experiencing the past few years can all be attributed to untreated celiac. Even though I've found a lot of evidence, I'm having a hard time being confident that I can control and recover from what has happened in my brain. I keep thinking something else is going to come out as an issue that is undiagnosed.

The other part of me thinks I have to be an example that a research center would want to document and understand... so I'm considering getting an appt and flying somewhere to a research center. Has anyone done that? Traveled to a specialist?

What about Dr. Wangen here in Seattle? Does he know much about the neuro stuff? Or is he just good with the gut? I would go see him even though he doesn't take insurance if I could just get some guidance or reassurance...

UGH, I'm so frustrated right now.
  • 0
Celiac disease, undiagnosed for 20 years
Add to that 9 years of denial and doctors telling me to ignore the diagnosis :huh:
Mix in 2 years of debilitating illness from complications of Celiac, leading me back to the gluten-free light
Diagnosed Celiac 4/2004
Moving on officially with GFD and Gluten-free since 5/2012

#7 ciamarie

 
ciamarie

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 419 posts
 

Posted 30 July 2012 - 06:13 PM

 Thankfully I have an ND who tested everything I asked for and helped get me on thyroid and a bunch of vitamins and supps.  Now I need someone who will take care of me and tell me what the next step is instead of me doing hours of research and taking it to my ND. I know there are still things that aren't right because I still feel horrible.

If you want, you could start a new thread for ideas. However, when I read about your ND putting you on a bunch of vitamins and supplements, I would start there. Stop taking any that aren't absolutely necessary, for a few days and then add back one at a time. Take just that one for a couple days or so, and see how you feel. If one of them makes you feel yucky after the first time, don't take it again. Sometimes there are fillers and binders that can disagree with us. For me, I avoid anything with maltodextrin, as well as gelatin capsules. They're gluten-free, but they don't agree with me.
  • 0
Gluten-free since the end of October 2011

#8 seattlejoy

 
seattlejoy

    New Community Member

  • Advanced Members
  • Pip
  • 11 posts
 

Posted 07 January 2013 - 12:54 PM

I missed this post earlier this year. Thanks for that advice. I will try that.
Most of what she gave me is liquid or powder- liquid vitamin D, calcium and fish oil, powdered probiotics, powdered L-glutamine, vitamin b injections....

But I do have a few other capsules for iron and such.
  • 0

#9 seattlejoy

 
seattlejoy

    New Community Member

  • Advanced Members
  • Pip
  • 11 posts
 

Posted 07 January 2013 - 12:56 PM

Hi, Does anyone know of a 'real' celiac specialist in Seattle? I know about Driscoll... and he's not what I'm looking for. He told me not to worry about my Celiac because I had a biopsy after a month on GFD last year and it was clear. I had records in my hand from Columbia 2004-2006 (from when I lived in NYC) which stated a Celiac diagnosis (although 'mild' compared to a lot of people here). I used to see Suzanne Lewis at Peter Greene's office, but now that I'm in Seattle, finding someone with that level of expertise is tough. There are many GI specialists who list Celiac in their areas of expertise, but they really aren't. My biopsy was done at Polyclinic and then I saw Driscoll as a backup. The doctors in both of those places told me I didn't have to be eating gluten since it had only been a month on GFD. I need someone who is well-versed on the neuro symptoms because my gut symptoms had faded over the years and all I had was neuro (BAD) when I saw these docs. They really didn't know anything about it.

My primary is a great ND and she seems to know a lot, but I much prefer my experience at the Celiac Disease Center at Columbia. <spoiled>

Any recommendations would be great. Or maybe some great doc can move to Seattle and start a research center! Posted Image

There is actually this guy here, Dr. Wangen, http://ibstreatmentcenter.com/ - but he doesn't take insurance and I'm hoping to find an MD to compliment my ND.

Thanks!



Did you ever make any progress on this? I am still searchin for someone that is better educated to help me navigate getting my body back on track. Would you mind sharing names of any MD or ND that you may have come across?

Of course, anyone else that might be able to share their pracitioners would be appreciated as well!
  • 0

#10 susanqi

 
susanqi

    New Community Member

  • Members
  • Pip
  • 1 posts
 

Posted 10 January 2013 - 10:49 AM

Hi,

We are considering moving to Seattle, so I googled celiac and Seattle and found this thread.

I too, have been mainly plagued by neuro issues, and would love to find a specialist who understands this from a celiac perspective. I recently found a study out of Germany which speaks to anxiety, yet it doesn't refer to a suggested protocol: http://www.ncbi.nlm....pubmed/20533598

I would so appreciate hearing about treatments any of you have possibly come upon. Also, are there certain organs/systems which are compromised due to the celiac, which could be prompting the brain issues? I realize our neurotransmitter production is compromised due to unhealthy guts, but is there more I could know? I would give anything to have a consistent ability to think, get things done, sleep well, no depression, anxiety, fatigue, etc.

Any names of docs you believe could be helpful, would also be appreciated! I am willing to travel.
Could working with docs out of Columbia make a huge difference in my life?

Thanks so much~

Best,
Susan
  • 0

#11 burdee

 
burdee

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,400 posts
 

Posted 11 January 2013 - 08:43 PM

My issues are severe enough that I'm not sure my ND is going to be enough. I had severe neuro complications. I'm not sure if Dr. Wangen can help me to the degree I need either. Part of me wants a celiac specialist from one of the centers to tell me that what I've been experiencing the past few years can all be attributed to untreated celiac. Even though I've found a lot of evidence, I'm having a hard time being confident that I can control and recover from what has happened in my brain. I keep thinking something else is going to come out as an issue that is undiagnosed.

The other part of me thinks I have to be an example that a research center would want to document and understand... so I'm considering getting an appt and flying somewhere to a research center. Has anyone done that? Traveled to a specialist?

What about Dr. Wangen here in Seattle? Does he know much about the neuro stuff? Or is he just good with the gut? I would go see him even though he doesn't take insurance if I could just get some guidance or reassurance...


I sawDr. Wangen for 4 years while we tested for and diagnosed my 6 other delayed reaction allergies and testedfor and treated my 8 different gut bug infections. I looked for another doc when Dr. Wangen couldn't explain why I kept getting those infections. My current ND (Wendy Ellis of Tahoma Clinic North) tested me and discovered 4 different conditions that caused my immunity problems. I no longer get gut bugs or even respiratory infections. However, I still read Dr. Wangen's blog at http://www.ibstreatmentcenter.com and noticed that he learned a lot after I left 4 years ago. He seems very knowledgeable about all aspects, symptoms and complications of celiac disease. BTW his own experience with celiac disease during medical school motivated him to become an ND, rather than go the traditional medical doctor route. I for one am glad he did. I've never gotten anything bur misdiagnoses from traditional doctors.

I suggest you call his clinic (IBS Treatment center) and ask the receptioinist whether Dr. Wangen can help your problem. If you're not satisfied, doctors at the Tahoma Clinic are very knowledgeable about food allergies, celiac disease, etc.
  • 0

Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: