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
      104,152
    • Total Posts
      919,607
  • Topics

  • Posts

    • Thanks, I'll check that out. I may have to apply for my own Medicare card in order to get any kind of coeliac-testing done beyond the screen (see above post.)  No, nobody has even mentioned it. I'm unsure if my doctor knows that I do not need to use my hands to vomit, or if she knows about the involuntary vomiting.  I have a part time job at McDonald's and make around $150 per week, which is how I afford to smoke. Mostly, I spend my money on (generally gluten-containing) binge food and cigarettes. I did attempt to start saving money, but then my shifts were cut at work - which meant I had more time to study, but no money, which was kind of pointless. It's complicated. Here in Australia, cigarettes are $25 per pack. These aren't fancy cigarettes either, just your run-of-the-mill Marlboro 20s. Thanks for caring. I am trying to stop I've had the vomiting thing all my life, way before I started smoking. And no, I'm not sure. I know he had an endoscopy and the flattened villi, but I'm not sure if he got a blood test - I assume he would have done, don;t know if it was the full panel. Supposedly he has this FODMAP thing, which I'll admit that I know next to nothing about. Interestingly, people who have to follow low-FODMAP or no-FODMAP diets can't eat gluten either, so there's that. 
    • Would a coeliac screen be the same as a test for antibodies, then? I have no idea why it was even included in my list of tests. It could be my brother, or my symptoms, or both - regardless, I can't say I know too much about the testing.  It's possible that my brother has coeliac disease, I really do worry about it sometimes. He was told to follow a strict low-FODMAP diet by his doctor, and eventually my parents stopped caring. Occasionally they will remind him not to eat things like pasta, greasy foods, etc. because of his condition, but by and large they don't care. He basically just eats whatever he wants. I'm not sure if it affects him or not. However, he isn't shorter than other family members - my dad is 183cm, and my brother is 178cm at the age of 14. Our mother is 173cm.  I do think I have bad digestion, yes. I get gassy and very bloated often, as well as constipated phases (and then following that, diarrhea phases.)  I have tried to ask my mum to call the doctor to get the tests done, but I'm hesitant to mention anything to do with gluten as I know they won't believe me, solely because a good friend of mine has celiac disease. I know they'll think I'm doing it for attention, or to be trendy, when in actual fact I'm just tired of being sick and having no explanation for it other than diet. I'm positive it's not dairy, as I was vegan for a couple of months at one stage. When I went back to eating animal products, I had no issues whatsoever. 
    • He had the IgG ELISA done as well as other blood panels, fecal and saliva tests. He is on an elimination diet right now where foods that score above 0.2 are eliminated for 2-6 months depending on the score, then added back slowly after the detox period.  I am aware that there is a lot of controversy over the IgG, and I'm not here to go into that issue, but I can say with certainty that eliminating the additional foods he reacted to has seen a huge reduction in the symptoms that persisted after cutting gluten and dairy. We will be attempting to add rice back in around October, and see how he does but until then I still need a solution for a baking mix.  I tried to wing it a bit with pumpkin bread today and my attempt was okay but not great. The loaf sank a bit and was overly chewy.  So, to my original question....recipes?
    • Ask the doctor's office!  But usually you can eat right after if you feel like it.  But ask them!  Some of them will try to give you crackers, so you may want to bring some gluten-free applesauce or Rice Chex
    • I'm wondering if he doesn't have an oat problem. He was only dx'd several months ago and really shouldn't use oats for a year after dx. Just thinking out loud. I too am wondering how the rice was picked out of all those other flours to be determined to be affecting him.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,189
    • Most Online
      1,763

    Newest Member
    Raany
    Joined