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

Hepatologist- Portland, Or


Mothering3

Recommended Posts

Mothering3 Apprentice

So I was diagnosed by my holistic MD based on positive blood test. I have an appt with a GI, but will most likely not be agreeing to endoscopy/biopsy as I have already been off gluten for 10 days and am finally starting to feel better.

My symptoms were kind of vague: chronic bronchitis, chronic UTIs for the past 6 months. Worst in the past 2 months or so: fatigue, malaise, nausea, no appetite, vomiting, dark urine, went from 151 lbs to 128. The first thing we found was poor liver function. Further blood work revealed Celiac. My liver ultrasound was normal, Thank You God. After a week off gluten my liver function was still bad, but I am hoping it will be better now that I am not nauseous and my tummy doesn't hurt. Also bronchitis seems to finally be going away, and UTI got better with antibiotics.

SO I am a little confused as to whether I even have damage to my gut at all? Is it possible I just have liver-presenting extra-intestinal Celiac? If so, I don't know that the GI will be helpful. My Dr thought he will want to do the endoscopy which could be helpful in seeing what else it going on, but my appt for that is a month off, and do you think I am going to go back to eating gluten for a month? Hell no.

I wonder if I need to see a hepatologist who understands Celiac. I know its a long shot, but anyone know of a good one in the Portland Oregon area?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

It might be a good idea to see your regular GP for a follow up on the liver issue and ask them if a referral is needed. Are you jaundiced in addition to the dark urine? Has your regular doctor ruled out hepatitis? You have only been gluten free for a bit over a week so it isn't surprising that your liver function tests have not improved. It takes a while to heal.

Mothering3 Apprentice

I expect I will be having regular follow-ups with my doctor regarding all of this. She did discuss with me the option of seeing various specialists, including a hepatologist. She said she would refer if I wanted, but she did not know of one to recommend. She did not feel strongly that I needed to see one, but neither is she against it. She talked about the importance of choosing specialists who do understand celiac and support my choices for holistic health care.

It might be a good idea to see your regular GP for a follow up on the liver issue and ask them if a referral is needed. Are you jaundiced in addition to the dark urine? Has your regular doctor ruled out hepatitis? You have only been gluten free for a bit over a week so it isn't surprising that your liver function tests have not improved. It takes a while to heal.

Mothering3 Apprentice

I expect I will be having regular follow-ups with my doctor regarding all of this. She did discuss with me the option of seeing various specialists, including a hepatologist. She said she would refer if I wanted, but she did not know of one to recommend. She did not feel strongly that I needed to see one, but neither is she against it. She talked about the importance of choosing specialists who do understand celiac and support my choices for holistic health care.

It might be a good idea to see your regular GP for a follow up on the liver issue and ask them if a referral is needed. Are you jaundiced in addition to the dark urine? Has your regular doctor ruled out hepatitis? You have only been gluten free for a bit over a week so it isn't surprising that your liver function tests have not improved. It takes a while to heal.

Mothering3 Apprentice

Ooh. I just found out that hepatology is actually a specialty area for internists, and the GI I am seeing that was recommended by others here, Dr. Alan Kaynard, specializes in hepatology. Hooray! Two specialists in one. Now I just have one to go.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,995
    • Most Online (within 30 mins)
      7,748

    Naner4
    Newest Member
    Naner4
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @sleuth, Has your son been checked for nutritional deficiencies?  All of those symptoms can be caused by malnutrition.  I had severe malnutrition that went unrecognized by my doctors.  Intense fatigue, brain fog, depression, anxiety, and gastrointestinal distress are symptoms of deficiencies in the eight essential B vitamins, especially Thiamine B1, which becomes low first because the demand is higher when we're sick.     Celiac Disease causes inflammation and damage of the intestinal lining which inhibits absorption of essential nutrients.  Checking for nutritional deficiencies is part of proper follow up care for people with celiac disease.   Is your son taking any vitamin supplements?  Most supplements contain thiamine mononitrate which in not readily absorbed and utilized by the body.  Benfotiamine is a form of thiamine that is shown to promote intestinal healing.  Benfotiamine is available over the counter.  Benfotiamine is safe and nontoxic.   Is your son eating processed gluten-free foods?  Gluten-free processed foods are not required to be enriched with vitamins like their gluten containing counterparts.   Is your son following a low histamine diet?  Histamine is released as part of the immune response to gluten and other foods high in histamine.  High levels of histamine in the brain can cause anxiety, insomnia, and depression.  The body needs the B vitamins to make the enzyme Diamine Oxidase (DAO) to break down and clear histamine.  DAO supplements are available over the counter.  Vitamin C helps clear histamine as well.  Some people find over the counter antihistamines helpful as well, but they're not for long term use.   Nicotine has antihistamine-like properties, but can also irritate the gut.  Tobacco, from which nicotine is derived, is a nightshade (like tomatoes, potatoes, peppers and eggplant).  Nightshades contain alkaloids which affect gastrointestinal permeability, causing leaky gut syndrome.  Nicotine can cause gastrointestinal irritation and alter for the worse the microbiome. Safer alternatives to Nicotine that have antihistamine properties include Lemon Balm (Sweet Melissa),  Passion Flower, Chamomile, and Bilberry.  They can be taken as supplements, extracts, or tea.  These will help with the anxiety, insomnia and depression in a much safer way. Oolong tea is also helpful.  Oolong tea contains the amino acid L-Theanine which helps the digestive tract heal.  (L -Theanine supplements are available over the counter, if not a tea drinker.)  Tryptophan, a form of Niacin B3, also helps calm digestive symptoms.  Another amino acid, L-Lysine, can help with anxiety and depression.  I've used these for years without problems.   What ways to cope have you tried in the past?
    • Scott Adams
      They are a sponsor here, and I did noticed a free shipping coupon: GFships
    • Scott Adams
      In general if it is labelled gluten-free then it should be ok for most celiacs, however, those who are super sensitive (which is most who have dermatitis herpetiformis) may want to eat only certified gluten-free items, which are supposed to test down to 10ppm (but don't always!).
    • Wheatwacked
      Have faith, you will survive. I get mine from Pipingrock.com.  500 capsules of 10,000 IU for $22.  That is almost two years worth for me.  250 caps 5000 IU for $6.69 if you only take 5,000 a day.  It's like half the price of Walmart.
    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
×
×
  • 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.