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

Referral Needed For Doc In Portland, Or


jlinc

Recommended Posts

jlinc Rookie

Hi,

Has someone out there has had experience with a celiac specialist in Portland? I think there must be someone good up at OHSU, but given some of my previous experiences, I would like to get a referral before I plunk down my (all my?) money.

Any help would be greatly appreciated.

Thank you very much!

Josh.


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



Celiac.com Sponsor (A8-M):



kristi Rookie

Josh I want to know too, you are not alone. I'm currently in Portland as well. At this point I'd travel anywhere and relocate for awhile to get this figured out. Here's my story already posted...My original diagnosis showed up with high IgG and low levels of adrenal antibodies in my blood work from a gland specialist in a hospital. I was so sick back then and was seeing a zillion doctors in the Seattle area. I felt like I was dieing and all of them weren't coming up with anything. I kept asking where I could go for more tests and a different kind of specialist with what they found in the bloodwork but they just said no more tests, just don't eat wheat and see your GP. My general practioner said she had never heard of such a thing, she had no idea how to read the test results and ran to her computer in the hall shortly followed by bringing in a nurse for "dietary advice". The nurse said, "Now it's important not to eat flour." That was it! I think you got a longer sentance out of them. That is just scary. Oh my gosh there is so much more to it. I had learned more than that the evening before on the very first hit on the internet. They sent me out the door. I went back to the hospital pleading for direction and they aimed me to an allergy clinic were I spent hundreds and hundreds $$$ (on top of the thousands already spent) just for me to finally learn there is a difference between intolerances and allergies as this was showing nothing. They only tested for allergies not intollerances at that clinic. Nobody seems to be very educated in this. I sure we are not a unique experience. I'm afraid to experient and go backwards without a good doctor in the wings while I do home tests if that involves eating more wheat to get correct results. I'm up for a trip to the east coast, lower west coast, Europe??? Keep in touch if you get any direction, especially local ! Thanks

Kristi

burdee Enthusiast

Kristi: I'm sorry you had such a frustrating experience with Seattle area docs. I was misdiagnosed for over 10 years by Group Health docs in the Seattle area. However I FINALLY found a fantastic celiac naturopath who founded the Seattle IBS Treatment Center. He doesn't just give that IBS diagnosis and say 'good luck', like most docs. He believes IBS is caused by (1) celiac disease; (2) other food allergies; (3) bacterial dysbiosis (too much bad bacteria and too little good bacteria); (4) yeast and/or (5) parasites. He uses specific tests to determine the cause of IBS symptoms. Then he treats the CAUSES of the symptoms, rather than just medicating or dismissing the symptoms.

I've seen him since last August and discovered through blood tests 2 more food allergies and a nasty bacterial infection, which I treated with an herbal med and probiotics. (I already had diagnosed celiac disease, dairy and soy allergies before I say him.) He sees out of town patients initially at his Seattle office, but can consult by phone and email thereafter, if travel is too expensive or difficult for follow-up visits. His name is Dr. Stephan Wangen, ND, at the IBS Treatment Center in Seattle, 206-264-1111. You can also read his website at Open Original Shared Link where he explains his approach.

BURDEE

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,660
    • Most Online (within 30 mins)
      7,748

    MandyK
    Newest Member
    MandyK
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Julie 911
      I finally got rhe answer and Tylenol is ok. Thanks everyone 
    • trents
      I don't see how cornstarch could alter the test results. Where did you read that?
    • knitty kitty
      For pain relief I take a combination of Thiamine (Benfotiamine), Pyridoxine B 6, and Cobalamine B12.  The combination of these three vitamins has analgesic effects.  I have back pain and this really works.  The B vitamins are water soluble and easily excreted.   Hope this helps!  Keep us posted on your results!
    • knitty kitty
      Welcome to the forum, @Xravith. I experienced similar symptoms before my diagnosis.  Mine were due to the loss of vitamins and minerals, essential nutrients we must get from our food.  With Celiac Disease, the intestinal lining, made up of thousands of villi, gets damaged and cannot absorb essential vitamins and minerals, especially the eight B vitamins.  The loss of Thiamine B 1 can cause muscle loss, inability to gain weight, edema (swelling), fatigue, migraines and palpitations.  Low thiamine can cause Gastrointestinal Beriberi with symptoms of nausea, abdominal pain and bloating.   Thiamine is only stored for a couple of weeks, so if you don't absorb enough from food daily, as the thiamine deficiency worsens physical symptoms gradually worsen.  If you're eating lots of carbs (like gluten containing foods usually do), you need more thiamine to process them (called high calorie malnutrition).  Thiamine works with all the other B vitamins, so if you're low in one, you're probably getting low in the others, too, and minerals like iron, magnesium, zinc, and calcium, as well as Vitamin D..  Talk to your doctor about checking for nutritional deficiencies.  Most doctors rarely recognize vitamin deficiency symptoms, especially in thiamine. Get a DNA test to see if you carry any Celiac genes.  If you do not have genetic markers for Celiac, it's probably IBS.  If you do have genetic markers for Celiac, it's probably Celiac.  I was misdiagnosed with IBS for years before my Celiac diagnosis.   Keep us posted on your progress. P. S. Deficiency in thiamine can cause false negatives on antibody tests, as can diabetes and anemia.  
    • Julie 911
      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
×
×
  • 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.