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Primary Care Physician


nothing but nicole

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nothing but nicole Apprentice

I dont have a primary care, I just have an OBGYN and a GI doctor, is it important that I find one that is knowlegable in Celiac or should I not bother and just continue to go to my GI doctor and other doctors as needed?

When I started having problems I called my sister's primary care, who is also the physician who visits my job on a weekly basis, and they told me that I needed to go to a doctor that knew my history. The same doctor laughed at my sister when she asked to be tested for the gene since me and another sister have Celiac. I just moved to florida a year ago and havent bothered to go to a primary care. So obviously I dont want to go to that doc, anyone know of any good docs in northern florida (Jacksonville area) if I even need one?


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lorka150 Collaborator

I don't have a Primary Care... Just an internist I see every 3 months, and a GI when needed. If I ever need to see anyone else, my internist refers me. I can't give you a recommendation, but honestly, I don't think that you're in need of a huge hurry if you are under care already.

sherylj Rookie
I dont have a primary care, I just have an OBGYN and a GI doctor, is it important that I find one that is knowlegable in Celiac or should I not bother and just continue to go to my GI doctor and other doctors as needed?

When I started having problems I called my sister's primary care, who is also the physician who visits my job on a weekly basis, and they told me that I needed to go to a doctor that knew my history. The same doctor laughed at my sister when she asked to be tested for the gene since me and another sister have Celiac. I just moved to florida a year ago and havent bothered to go to a primary care. So obviously I dont want to go to that doc, anyone know of any good docs in northern florida (Jacksonville area) if I even need one?

Hello,,Your gastro dr. will be the most helpful I think..I am new so I think you will get some more knowledgeable sources. My insurance co. requires me to go through a primary care physician,,if your insurance co. doesn't you are lucky cause my primary care listened for 10 years about my symptoms,,was sympathic but didn't recommended the test. I wish I had been more assertive. The last 10 years of my life might have been very different!

So,,,get a dr. that KNOWS about celiac. A dr. who laughs when questioned about celiac is not the person you want treating you.

From reading other posts it seems some have been diagnosed with allergist and others have the small intestine biopsy which I think is the best source. I had my biopsy a few weeks ago and it confirmed celiac. I feel like giving my Primary Care a boot in the !!!!! If you want to go for the biopsy then you need to continue to eat wheat,,,I have read that your villi begin to heal within 3 days and if the villi are not damaged what good is the test. I ate wheat heavily for a week before my biopsy but I have read othr post that indicate you have to eat wheat for two months!!

You didn't say how severe your symptoms are? And are there mental/emotional as well as digestive/skin problems? Sherylj

Guest cassidy

I am a drug rep who works with primary care doctors. I bring them lunch and most ask why I'm eating something different, so I explain that I have celiac. Out of the 100+ doctors I have brought lunch to, I would say that 50% have heard of it but are not sure exactly what it is, 25% know that you can't have gluten but are not sure what that is in and 25% have never had a patient with celiac in their 20 or 30 years of practicing. So, just based on what I have seen it is tough to find a doctor who has dealt with celiac.

I chose a different route and found a doctor who doesn't argue with me. He had one patient with celiac but he is one of these doctors that will give me a script if I request one or order a test if I ask for one. I wouldn't trust him if I had a serious problem that I couldn't identify, but he works out fine for normal issues. Once my diet has been under control I haven't needed to go to a doctor at all and since celiac isn't something that needs to be monitored (as long as you are doing well), I think if you have a gi that understands it you are in good shape.

Some people do have good doctors, so there is hope, but it may take a bit of digging to find one.

debmidge Rising Star

I suggest that you ask your GI for a recommendation for a General Practioner; remind him/her that you need someone who is at least eager to learn about celiac disease if they don't know too much about it in first place; but you'd prefer someone who knows what celiac disease is.

darlindeb25 Collaborator

I finally have found a primary care physician that I really like. He admits to not knowing much about celiac disease and what he knows now is from info I have given him, yet he is always willing to listen and learn. He offers advice and is always ready to find me a good specialist, if needed. My insurance does require referrals, so I do need a PCP. I do trust him with me, that's wonderful.

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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