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Jewels50

Dr Deficiency

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I live in the Eastern NC area and am struggling to find a good Dr, gastroenterologist here in the area.  

I was was told yesterday by the FNP at my gastroenterologist’s office that it is “not true” that other autoimmune diseases can be present with Celiac.  When I showed here the FAQ from the U of Chicago Celiac Disease Center, she replied, “well, they could be.”  

When I showed her the full Celiac panel I had done and paid for myself, she wanted to know why I did that.  I again mentioned that the DGP IgG is the best indicator of Gluten in the diet (mine is negative).  She again told me that wasn’t true and it is the TTG that show if Gluten is in the diet.  (She only ran a TTG test back in July and it was a 5 so her assistant lectured me on “cheating” on the diet.  Yes, I went to the nutritionist/dietician.  I know what I am doing with my diet.)  Again, this is contrary to the FAQ and answers on the U of Chicago CDC’s website and Mayo Clinic about TTg.

I asked her about Ttg2 and TTg 6.  She snorted.  She was adamant that I have no idea of what I am talking about.

She told me to stop “chasing it” and that she’d move my endoscopy up to this month.  (Which she did.)

I told her that was great, but that I cannot go another 3 months battling the chronic fatigue, joint pain, brain fog and basically feeling like crap.  She kinda listened but my 10 minutes were up and off she went.  (I do have an appointment with an Endocrinologist sent up because I do have TPO antibodies in my blood work.)

She works with a gastroenterologist that others with Colitis and Chron’s praise, but I don’t think he is very good with Celiac.  I am definitely thinking the FNP doesn’t do any continuing ed about Celiac.

Anyone know of a good Gastroenterologist in the Eastern NC area?

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I do not but I am going to tell you your not alone in to running into ignorant "Know it all" doctors......I know I went through over 6 of them....forgot the exact number....before I found one that even considered celiac. Honestly I think it comes down to there is no money in helping people with it....no medications help and it is completely self regulated via diet. I wish you luck in finding one perhaps someone can help you.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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1 hour ago, Ennis_TX said:

Honestly I think it comes down to there is no money in helping people with it....no medications help and it is completely self regulated via diet.

I think you hit it right on the head.  The only way to get production ($$$$$) out of Celiac patients is to do endoscopic surgeries.  And I know the big medical conglomerate that actually owns the gastroenterology practice has production goals that the doctors and staff have to meet.  Hence the reason to have a FNP on staff and meeting with patients.

HMO and PPO insurance has really hurt the medical profession.  But that is another topic.

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Remember that this nurse practitioner is not the gastroenterologist. They are not the same people. Just because they represent the same office does not mean they have the same knowledge base.  The gastroenterologist went to school for 11 years while the NP only 2.  That's not to say that there aren't great NPs out there, but they provide a different skill and knowledge base. Your GI may very well be a great doc and know the answers that you seek.  Make an appointment with him/her and insist that you see him every time since you don't feel comfortable with the NP. If you still don't find him to be helpful, go to a different office.

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