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

Celiac, IBS, SIBO and an online health clinic

JD-New to Celiac
 Share

Recommended Posts

JD-New to Celiac Explorer
JD-New to Celiac
Posted

Does anyone know of an online reputable health clinic that will help me manage my celiac, IBS and what I now believe to be SIBO. I cannot get my local doctors or a GI to assist as I did not have the biopsy done for diagnosis. I saw a few online options but I am concerned that they are just looking to sell you their miracle cures and formulas. I continue to remain so very sick and my PCP told me I need to see a GI and the GI won't treat me without going back on gluten and then doing a biopsy.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Tracy414 Explorer
Tracy414
Posted

Is there a different GI that would see you? Not sure where you live, but that seems pretty awful. Is there a way you can self refer? Some insurances allow that. Again, not sure where you are from. I am sorry you are going through all of this and I hope you find a medical professional who will listen.

Link to comment
Share on other sites
JD-New to Celiac Explorer
JD-New to Celiac
  • Author
Posted
1 hour ago, Tracy414 said:

Is there a different GI that would see you? Not sure where you live, but that seems pretty awful. Is there a way you can self refer? Some insurances allow that. Again, not sure where you are from. I am sorry you are going through all of this and I hope you find a medical professional who will listen.

Because of the insurance I have when I see a specialist (which takes about two months for a new patient), I have to. pay out-of-pocket, which is hundreds of dollars. I don't want to go to another GI for them to say, "Patient states came here at direction primary care provider since "GI is supposed to be the expert" but is largely self directing his therapy." That is what the GI wrote in the report after I went to him. Actually the truth is the PCP would not treat me as he is unfamiliar with Celiac and referred me to this GI who told me that you cannot diagnose Celiac without doing a biopsy. He wanted me to go back on gluten and have the procedure done. So, a year later and a new PCP and I recently asked to have bloodwork done for deficiencies and here is what my new PCP said, "I added in the requested labs, but you'll probably have to pay for some of them.  I did my best to justify some of them, but this is an exhaustive list that isn't usually covered."  Really an exhaustive list? I asked him for the following, which I don't feel is exhaustive.

-Transglutaminase IgA or a tTg-IgA blood test
-Tests for iron, folate/folic acid, vitamin D, zinc, copper, calcium and vitamin B status (including B6/ B12/homocysteine levels)

Link to comment
Share on other sites
Tracy414 Explorer
Tracy414
Posted

You can get the celiac antibodies for around $100, online. Poke your finger and send it back to be analyzed. I’m pretty sure you can do vitamins ones too, but not 💯 sure which ones or how they are resulted. May be cheaper and at least give you some ideas about possible deficiencies. Healthcare is so frustrating!! 

Link to comment
Share on other sites
JD-New to Celiac Explorer
JD-New to Celiac
  • Author
Posted
16 minutes ago, Tracy414 said:

You can get the celiac antibodies for around $100, online. Poke your finger and send it back to be analyzed. I’m pretty sure you can do vitamins ones too, but not 💯 sure which ones or how they are resulted. May be cheaper and at least give you some ideas about possible deficiencies. Healthcare is so frustrating!! 

Yes, that is my new GO TO...online testing. I use "Request a Test" and so far they seem to be legit. I just had the genetic testing done as I just wanted further confirmation. My doctor would not order the copper test that I've been reading about so I might get that done.

Thanks for advice and indeed...healthcare is frustrating.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing

  • 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. Wheatwacked
      - Wheatwacked replied to Chris Tonelli's topic in Related Issues & Disorders
      3

      Rampant decay caused by Celiac’s disease

      She should be tested for 25(OH)D vitamin D blood level. Most newly diagnosed with Celiac Disease are disturbingly low. Malabsorption syndrome causes poor dietary absorption of vitamin D orally and super high sunscreens block skin production. Hypervitminosis D which nearly every article written warns of, is a very rare disease. Many these days drink...
    2. Wheatwacked
      - Wheatwacked replied to Zoe26's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Toddler gluten challenge and vomiting

      When my son was diagnosed with Celiac Disease in 1976 as soon as he was weaned, his doctor insisted that we feed him only Nutramigen it was the only hyperallergenic with complete nutrition. Enfamil and Similac were not acceptable if we wanted him to get healthy. For one thing they had no choline back then. Given the lawsuits against them now, he was...
    3. knitty kitty
      - knitty kitty replied to AmandaA's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      20

      New and Frustrated

      Check the label and tell us what kind of B12 is in your gummies. If it's Cyanocobalamin, switch to a methylated (active) form of B12. Some of us need to take the active form of B12 because our bodies have problems turning other forms of B12 into the active methylated form due to MTHFR genetic variations. Take a B Complex supplement, too...
    4. Barrie9
      - Barrie9 replied to Sarah8793's topic in Coping with Celiac Disease
      23

      Anyone Have Dumping Syndrome Related To Celiac Disease?

      Hi! I've been gluten free for years. No surgery, but have dumping syndrome symptoms, particularly if I've eaten a lot of FODMAP foods, or xanthan gum, or any other gums that are in many gluten free foods. You may want to stop eating foods with gums and see if that helps!
    5. knitty kitty
      - knitty kitty replied to Zoe26's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Toddler gluten challenge and vomiting

      @Zoe26, Has he been checked for vitamin deficiencies? Is he pulling up to standing position? Does he crawl? I ask because delayed development can be associated with nutritional deficiencies. Having a hoarse low voice is symptomatic of Thiamine deficiency in children and adults. Complete loss of voice is possible, too. ...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      124,994
    • Most Online (within 30 mins)
      7,748
    Xuan Nguyen
    Newest Member
    Xuan Nguyen
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

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


  • Upcoming Events

  • Posts

    • Wheatwacked
      Rampant decay caused by Celiac’s disease

      By Wheatwacked · Posted

      She should be tested for 25(OH)D vitamin D blood level.  Most newly diagnosed with Celiac Disease are disturbingly low.  Malabsorption syndrome causes poor dietary absorption of vitamin D orally and super high sunscreens block skin production.  Hypervitminosis D which nearly every article written warns of, is a very rare disease. Many these days drink bottled water so do not get the benefit of floridation.  I had lots of cavities as a kid and when they floridated the water I stopped getting cavities.  Of course in those days all we had for sunscreen was baby oil and that "don't be a paleface" stuff, so we actually got vitamin D from the sun.  Celiac Disease uses a lot of vitamin D to control the immune system response to gluten, but we don't get enough. Iodine can help prevent tooth decay and gum disease, and may be more effective when used in combination with fluoride.  Get her medium urinary iodine concentration (Muic) tested for iodine intake deficiency.  In the last 30 years iodine levels have fallen by 50% in the United States.
    • Wheatwacked
      Toddler gluten challenge and vomiting

      By Wheatwacked · Posted

      When my son was diagnosed with Celiac Disease in 1976 as soon as he was weaned, his doctor insisted that we feed him only Nutramigen it was the only hyperallergenic with complete nutrition.  Enfamil and Similac were not acceptable if we wanted him to get healthy.  For one thing they had no  choline back then. Given the lawsuits against them now, he was right. He spent about 6 months on the Nutramigen formula exclusively and weaned off of that to a gluten free diet and thrived. He also predicted that by kindergarden the teacher would beg us to put him on Ritalin, which he took all the way through High School.  
    • knitty kitty
      New and Frustrated

      By knitty kitty · Posted

      Check the label and tell us what kind of B12 is in your gummies.   If it's Cyanocobalamin, switch to a methylated (active) form of B12.   Some of us need to take the active form of B12 because our bodies have problems turning other forms of B12 into the active methylated form due to MTHFR genetic variations.   Take a B Complex supplement, too, because B12 needs the other B vitamins to function properly.
    • Barrie9
      Anyone Have Dumping Syndrome Related To Celiac Disease?

      By Barrie9 · Posted

      Hi! I've been gluten free for years. No surgery,  but have dumping syndrome symptoms,  particularly if I've eaten a lot of FODMAP foods, or xanthan gum, or any other gums that are in many gluten free foods. You may want to stop eating foods with gums and see if that helps!
    • knitty kitty
      Toddler gluten challenge and vomiting

      By knitty kitty · Posted

      @Zoe26, Has he been checked for vitamin deficiencies?    Is he pulling up to standing position?  Does he crawl? I ask because delayed development can be associated with nutritional deficiencies.   Having a hoarse low voice is symptomatic of Thiamine deficiency in children and adults.  Complete loss of voice is possible, too.   "He's extremely lethargic, barely moving."  This statement really worries me.  Thiamine deficiency can cause fatigue and loss of energy like this.  Thiamine deficiency can be serious in small children.  Do mention this to the doctor. It's horrible you and your son had to wait so long for an appointment.
×
×
  • Create New...