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Mothering3

Hepatologist- Portland, Or

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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?

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Celiac.com Sponsor (A8):

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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.

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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.

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