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

Primary Care Physician


nothing but nicole

Recommended Posts

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?


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



Celiac.com Sponsor (A8-M):



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.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Is this celiac?

    2. - knitty kitty replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Fiber Supplement

    3. - knitty kitty replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      ttg iga high (646 mg/dl) other results are normal

    4. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Fiber Supplement

    5. - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      36

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,345
    • Most Online (within 30 mins)
      7,748

    rolland mcclay
    Newest Member
    rolland mcclay
    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

    • Hmart
      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
      @Trish G,  I like dates, they have lots if fiber as well.  But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small intestines where our nutrients are absorbed.  If you have constipation, where your body is rather pushing your food away and not interacting with it, the nutrients in the food are not being released and absorbed.  You can develop deficiencies in all the vitamins and minerals necessary for the body to function properly.   The B vitamins cannot be stored for long, so they must be replenished daily.  Thiamine B 1 stores can run out in as little as three days.  Constipation (or diarrhea or alternating) is one of the first symptoms of thiamine deficiency.  Thiamine needs magnesium, Pyridoxine B 6, and Riboflavin B 2 to make the intestinal tract function.  Thiamine and Niacin make digestive enzymes.  Thiamine provides the energy for nerve impulses to carry messages to the brain and back about digestion.  Thiamine provides the energy for the muscle contractions which move your food through the digestive tract. High calorie meals containing lots of starches and sugars can deplete thiamine stores quickly because more thiamine is required to turn them into energy.   Are you taking any vitamin and mineral supplements?  Correction of malnutrition is very important in Celiac disease.  Thiamine, the other B vitamins and magnesium will help with constipation better than adding more fiber.  What did your nutritionist recommend you take, besides just the fiber? The association between dietary vitamin B1 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11100033/ Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Association between dietary vitamin B6 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11584952/
    • knitty kitty
      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines.  Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured in blood tests. If you had already gone gluten free or if you had lowered your consumption of gluten before testing, your results will be inaccurate and inconclusive.   See link below on gluten challenge guidelines. Have you had any genetic testing done to see if you carry genes for Celiac disease?  If you don't have genes for Celiac, look elsewhere for a diagnosis.  But if you have Celiac genes, you cannot rule out Celiac disease. You mentioned in another post that you are vegetarian.  Have you been checked for nutritional deficiencies?  The best sources of the eight essential B vitamins are found in meats.  Do you supplement any of the B vitamins as a vegetarian? Deficiency in Thiamine Vitamin B 1 is strongly associated with anemia which can cause false negatives on antibody tests.  Fatigue, numbness or tingling in extremities, difficulty with coordination, headaches and anemia are strongly associated with thiamine deficiency.  Other B vitamins that contribute to those symptoms are Riboflavin B 2, Pyridoxine B 6, Folate B 9 and B12 Cobalamine.  The eight B vitamins all work together with minerals like magnesium and iron.  So your symptoms are indicative of B vitamin deficiencies.  You can develop vitamin and mineral deficiencies just being a vegetarian and not eating good sources of B vitamins like meat.  B vitamin deficiencies are found in Celiac due to the malabsorption of nutrients because the lining of the intestines gets damaged by the antibodies produced in response to gluten.    
    • Trish G
      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement.  Thanks again
    • Wheatwacked
      If you were wondering why milk protein bothers you with Celiac Disease.  Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
×
×
  • 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.