Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Real Celiac Specialist In Seattle?
0

11 posts in this topic

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

Share this post


Link to post
Share on other sites


Ads by Google:

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites




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

Share this post


Link to post
Share on other sites
0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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! wink.gif

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

Share this post


Link to post
Share on other sites

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.nih.gov/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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,358
    • Total Posts
      920,531
  • Topics

  • Posts

    • Here's another thing.  Feeling deprived?  Order two of the same item.  I was hungry by the time dinner arrived! 
    • The doctors just made me feel like I was crazy because they did not have a clue of what was wrong with me. I did a stool test (positive) and I did a genes test (positive for two gluten sensitive genes, one in each chromosome).  Blood test are not so foolproof, if you read the comments/experiences in such topic you will see the problems. Biopsy can give a false negative if taken from an undamaged area. If you have medical problems that go away once on a gluten free diet then gluten is the problem. The medical establishment profit from managing your medical problems and big pharma makes money by pushing pills so we need to be careful because they won't benefit if a gluten-free diet solve your problems. Since I started a Gluten free diet I have been free of the following: (all related to Celiac)  Irregularity, Intestinal noise, Irregular stool, Tooth enamel defects, Rash in upper arms, Abdominal swelling, depression, fatigue, irritability, lactose intolerance, 
      loss of memory, dandruff, uncontrollable bladder, suicidal thoughts, unable to sleep, Canker sores/ Mouth ulcers, high blood pressure, and probably others that I did not realize. I was at the end of my rope, thanks to Google and the people that are able to talk about this I was able to get my life back. I am passionate about this because I know how bad its can get. 
    • Well, I have never cruised on Carnival, but I am sure they can accommodate you.  I assume that you have already alerted them that you require gluten free meals.  If not, please contact Carnival immediately. Here are my own tips.  Some folks eat off the buffet line, but not me or hubby except for coffee/drinks and baked potatoes (jacketed) and fruit that we wash in the restroom (people touch everything!)  Okay, I am OCD, but my last glutening which occurred the previous summer made me sick for three months (GI tested my antibodies to prove it).   When we board, I go to the buffet restaurant ASAP and ask to speak to the Head Waiter (they are usually there greeting customers and often trying to up sell to specialty restaurants.   Let them know you have celiac disease and must be gluten free.  They may try to tell you that each dish is clearly marked gluten free, but really?  Who's to say that some other passenger is not going to switch spoons (or I have seen passengers wandering around with serving spoons...I kid you not!  The staff usually will  go downstairs and fetch a gluten free meal for me from the main dining room's kitchen as there is usually a dedicated area for allergies.  We have to wait up to 20 minutes or so but it is worth it.  Starving?  Get a baked potato wrapped in foil until your gluten-free meal arrives.  Now, do not do this every single time.  Those folks have to go down several levels to fetch food and you don't want to be a pain.  But if the main dining area is closed, they need to make an effort to keep you safe.  On our last cruise, we were advised not to eat anywhere but the main dining room and that included room service (they are not trained to handled allergies).  My headwaiters have sent goodies (prepackaged gluten free rolls and cookies for us to keep in our room.  We can always grab whole fruit (I wash it first) to snack on.  I bring gluten-free non-perishable items with me to eat while at port in case we can't find anything (which can be often).  Again, when we get back to our ship, we contact our headwaiter and he/she can prepare some snacks until we have dinner.   Be grateful and not picky.   We eat all meals in the dining room (or at least as much as possible).  Our headwaiter had a few other celiacs on our cruise this summer, so they prepared some gluten-free waffles, etc. for our breakfast!  What a treat!  At breakfast, we'd have different waiters, so our headwaiter would always instruct our waiters each and every time!  They even let me tour the kitchen and showed me the allergy section.   The only time I did not feel safe was at the buffet.  We once ordered gluten-free pizza and I realized (I watched) that that restaurant didn't really have the gluten-free thing down), do I called him on it.  Got the manager etc.  So, be careful.  Other cruises made us frozen Udi"s which was just fine with us.  They covered it up in foil so that we would not get any cross contamination from their pizza oven. So, have fun!   Tipping?  We prepaid our gratuities, but we gave our headwaiter an extra $200.00 for his time.  For us, it was well worth the service and safety of our food.  It does not hurt to slip some of the tip ahead of time (like after your first meal!)   Oh, I checked your ship.  You must eat in the diningroom if you have special dietary needs.
    • French Celiac / Coeliac Gluten Free Restaurant Card <strong>What is ... What to know about celiac disease, gluten sensitivity, and gluten-free diets. View the full article
    • <strong>Celiac Disease & Gluten-free Diet Information at Celiac.com. Gluten Free Diabetes ::The 3 Step Trick that Reverses Diabetes Permanently in ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,432
    • Most Online
      1,763

    Newest Member
    rbeckler60
    Joined