• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Real Celiac Specialist In Seattle?
0

Rate this topic

11 posts in this topic

Recommended Posts

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!

Share this post


Link to post
Share on other sites
Ads by Google:
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

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.

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.

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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!

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

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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
      108,141
    • Total Posts
      939,884
  • Member Statistics

    • Total Members
      66,129
    • Most Online
      3,093

    Newest Member
    Serah
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi!  I wasn’t sure where to post this inquiry so I’m sorry if it is in the wrong place!  My blood work was negative for celiac although biopsy was suspicious.  I have severe joint pain and GI issues so have decided to eliminate all gluten to see if that helps. I hear I may need to supplement my diet with vitamins to make up for what I’m missing, but I don’t know what vitamins they are!  Can anyone help? Thanks, Sarah
    • Hello everyone Thank you so much for all your contributions and tips, I'm sorry for my absence but I've had a big project deadline to complete. Over all, I think things are on the mend for me too.  I was quite cynical at the doctors' approach at first. I'd have much rather had a scope to find out what was happening, instead of being prescribed three months of omemprazole or zantac to see if it helped.  Unfortunately the gen on the zantac contraindictaions list stipulated that zantac should only be prescribed if your doctor is sure what is wrong with you, as it might otherwise be covering up cancer!  Those aren't the things a hypochondriac wants to read!  Anyway,  during this that time I've taken one months of omeprazole (20mg) and as that gave me D I changed to two months of zantac (most days only 75mg a day, but doubling the dose on odd occasions when the burn seemed to come back).  During much of this period I've tried to keep my diet low in fat, spicy food, drinking very little caffeine, drinking strong camomile and slipper elm, and I think a key help has not eating for a 12 hour stretch overnight because I think that really helps the stomach heal.  I hope my system is finally recovering and hope to come off the zantac towards the end of this month.  It is hard to phase these things out slowly when you are already on the minimum dose, but all the tips about marshmallow, licorice and slippery elm etc will no doubt come very helpful then!   I have come to the conclusion that this is a new weakness in my system and I'll have to be very careful to avoid gastritis in the future, by no longer taking asprin (unless the doctor ever tells me I have to), not over doing fat, greasy food, etc.  The last time I drank some sparkling wine or fizzy drinks was awful, so I shall avoid them too. Throughout this time probiotics have helped me with the C, upper left quadrant pain  and wind that the zantac seems to have produced! And of course all the help from you guys. Will keep you posted Whitepaw on life post-zantac!
    • Ennis, can you tell us how to tell the difference between a UC flare and a glutening? It must be confusing for folks diagnosed with both to know at first which it is that is happening.
    • i ended up with dairy intolerance over 10 years ago, and celiac over 4 years ago, then this year got ulcerative colitis diagnosis.

      Dairy issues are caused by the fact the enzymes to digest it are produced by the tips of your villi, these are damaged first and most by the disease and you end up with dairy intolerance. Some people can add it back after a few years of healing. Other allergies and intolerance issues will also develop the longer your on gluten.....it will really just shorten the list more, as damage ramps up, digestive issues arise, and your body starts confusing other foods as a culprit and developing allergies.

      Your UC complicates things and is honestly going to make you much madder then the Celiac as per its flare ups. UC common triggers are gluten, soy, dairy, and in some cases like mine it is triggered by carbs and sugars like glucose and fructose.....yeah I had to go grain free and change to a nut, seed, leafy low carb veggies and egg white diet.
      Since you can not have nuts but do not mention meats I can say your lucky. I developed a issue where I can not digest meats due to my damage. I might suggest you look into a keto/paleo diet. Where you eat meats, eggs, leafy greens. a higher fat/protein diet.

      Now after 8 months on this diet I am seeing even more improvement and had have several issues resolve and am putting on weight.
    • You say your on a gluten free diet, just a check. Did you get new cookware, check every ingredient, throw out old contaminated cutting boards, jars of condiments, etc. Clean out everything? You first have to decon your house in a way and make sure it is not in anything, including cosmetics and soaps, as these get on your hands and evenutally into your food. Gluten is a protein smaller then a germ, it only takes a tiny bit to start to raise your antibodies, and bleach does not kill it.  Please check hte Newbie 101 form.

      Now to address your questions, a whole foods only diet, nothing processes will speed up your healing, changing to making your own foods with simple ingredients (keeping it under say 5-7 things) and nothing processes or not labels gluten free (with certification, none of that made in the same facility) is the best way to heal faster.

      Keep a food diary to keep track of what you eat and any other problems, many of us have other food intolerance and allergies crop up. Also make sure your getting a little bit of everything nutrient wise.

      Iron and supplements, iron works with vitamin c and b vitamins and some  others. You have to be taking vitamin C with your iron to get your ferratain up. I personally have this issue also. I can give you some suggest some other stuff to help clear up the fog, even if your levels are alright they still help on a gluten free diet. Liquid Health Stress & Energy and Liquid Health Neurological Support 1tbsp each twice a day. I recently changed over to a sublingual iron from trace minerals....takes some getting used to be is supposed to be easier to absorb.  Magnesium, Look into either Natural Vitality calm or Doctors Best in the powder, both these mix in a drink. With calm you have to start off at 1/4tsp and slowly up to the full dose over a week....it can be a bit harsh on the gut if you find this to be then use doctors best. I rotate vitamin C between a pill, and sublingual depending on price myself. I find pricing on the above goes to either LuckyVitamin.com or Amazon as they fluctuate.

      https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/  
  • Upcoming Events