Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Why Are Knowledgeable Doctor's So Hard To Find?

eden-arteaga

By eden-arteaga
in Doctors

Recommended Posts

eden-arteaga Rookie
eden-arteaga
Posted

I live in Los Angeles, San Fernando Valley area to be exact. I've consulted 3 doctor's already, one GI and two General Practitioners. Nobody seems to know anything about Celiac's or how to test for it. After having stomach problems for nearly four years, constant diarrhea, bloating, cramping, and nausea when I eat the only answers I've gotten is you probably just have IBS or acid reflux. When my first cousin was diagnosed six months ago with Celiac's I started doing my own research and tried eating Gluten Free. I've been Gluten Free for about two weeks now and I'm feeling a lot better generally speaking. I only have gotten sick a few times. Even though it seems to be Celiac's, ( I've also been anemic for years, gotten frequent headaches, and light headedness along with the GI symptoms) I would like to know for sure! So far my GI has tested for ulcers & gallbladder disease. When I asked him to test me for Celiac's his reply was "if it looks like a Zebra don't go chasing a Horse." I recently left him a message asking him again to test me for Celiac's since my other tests came back negative, and since the Gluten Free diet seemed to be working and he hasn't returned my calls. My other two doctor's have stated that they would need to do more research and they are not familiar with even how to do the blood tests for the disease. Does anyone know a Doctor in my area with knowledge of Celiac's? I'm beginning to get so frustrated with the whole thing, it makes me want to say forget it!!

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

Celiac.com Sponsor (A8-M):


queenofhearts Explorer
queenofhearts
Posted

I really feel for you, Eden. My previous doctors didn't catch on to Celiac's despite 20 years of recurrent diarrhea, anemia, joint pain & migraines. It was only elevated liver enzymes (& even then a clear CAT scan) that finally got me a referral to the wonderful specialist who almost instantly diagnosed Celiac's just from my list of symptoms. Endoscopy confirmed it. It's distressing that even your GI specialist isn't seeing the pattern, but my first GI didn't either. (Good ol' IBS was his diagnosis.)

I hope another L.A. Celiac can help you find a doctor who knows what he/she is doing. But be careful of following the gluten free diet before you are diagnosed as it can throw off the test results.

Hang in there! You sound exactly like me pre-diagnosis, so keep fighting to get tested.

Leah

eden-arteaga Rookie
eden-arteaga
Posted
  • Author

Thanks Leah! It does seem like we've had a few similar experiences. I appreciate the support!!

Samantha Newbie
Samantha
Posted

Eden:

Go to the Celiac Sprue Association website (csa.org) and look for local units or use this link Open Original Shared Link

Someone there should be able to point you in the right direction.

I have really bad news for you, though. You are probably going to have to start eating gluten again before you're tested so that they can get a positive diagnosis.

Good luck!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,750
    • Most Online (within 30 mins)
      7,748
    Ajustice
    Newest Member
    Ajustice
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      High blood test numbers - with scales. Any advice?

      By Scott Adams · Posted

      I agree with @RMJ, you have multiple positive tests so celiac disease is likely.  This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.     
    • trents
      Newly gluten free… withdrawal?

      By trents · Posted

      One small study found that 50% of celiacs react to the dairy protein "casein" like they do to gluten. It is also common for celiacs to be lactose (the sugar in milk) intolerant, though that often disappears in time as the villi heal. About 10% of celiacs react to the oat protein "avenin" like they do gluten.
    • K6315
      Newly gluten free… withdrawal?

      By K6315 · Posted

      Thank you so much Trents (Scott?)! I have started working with a dietitian and did a deep research dive as soon as I got the diagnosis. I am aware of what you mentioned in the first two paragraphs, and was not aware of anything in the third, so I am grateful for that information, and will talk to the dietitian about that. I think I was most interested in the withdrawal process - it gives me hope that, although I have felt unwell recently, I just need to be patient (not a strong suit). I have printed the article you sent and will look at it more closely. Thanks again!
    • Sandi20
      Gluten Free Daily Vitamins for Kids w/ Celiac

      By Sandi20 · Posted

      I really like Thorne!  I've researched thier products.  Thank you so much.
    • trents
      Newly gluten free… withdrawal?

      By trents · Posted

      Welcome to the forum, @K6315! Gluten withdrawal typically lasts for a period of a few weeks. But there is a real learning curve involved in actually attaining to a gluten free dietary state. Much more is involved than just cutting out major sources of gluten such as bread and pasta. It's all the places that gluten is hidden in the food supply that is difficult to ferret out, like soy sauce and canned tomato soup, canned chili and canned pork n' beans, some "lite" pancake syrups, potato salad, flavorings, etc., etc. Gluten-containing grain products are hidden through alternate terminology and found in places you would never expect.  There is also "cross contamination" where naturally gluten free foods come into contact with gluten-containing grains during farming, transportation, storage and manufacturing processes. Then there is the issue of "cross reactivity" whereby you may be having gluten-like reaction to food proteins whose structure is similar to gluten. Chief among these are dairy, oats (even gluten-free oats), soy, corn and eggs. I am including this article that you might find helpful:   
×
×
  • Create New...