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-FLA
 Share

Recommended Posts

JD-FLA Contributor
JD-FLA
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.

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.

JD-FLA Contributor
JD-FLA
Posted
  • Author
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)

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!! 

JD-FLA Contributor
JD-FLA
Posted
  • Author
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.

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,134
    • Most Online (within 30 mins)
      7,748
    Sewingmomma
    Newest Member
    Sewingmomma
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jenny (AZ via TX)
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Jenny (AZ via TX) · Posted

      Thank you both so much!
    • Bev in Milw
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      Reading labels at dailymed.com is simpler if you’re familiar w/ gluten-free list of inert ingredients (aka ‘excipients’  allowed by FDA.      www.gluten-free.com has that list & I’ve included It’s below…. Tricky ones for me are the “4 D’s“ because names are similar. These 2 are gluten-free by ‘legal’ definition— •Dextrans - Partially hydrolyzed corn or potato starch. •Dextrose - Powdered corn starch. Other 2 need to be questioned. (Maybe ok for isolated 7-10 day Rx,   antibiotic?,  but gluten-free status needs to be verified for long term / daily use for chronic condition, like thyroid or BP meds.)   These are : •Dextrates - Mix of sugars resulting from the controlled enzymatic hydrolysis of starch. •Dextrins - Result from the hydrolysis of starch by heat or hydrochloric acid (from corn).  It can also be obtained from wheat, rice or tapioca.  (Maltodextrin on US labels MUST be corn so gluten-free.) Technically, ‘Starch’ on USDA ‘food’ labels in US must be from corn, & if not, the source must be identified.   In drugs,‘ Pregelatinized starch’ & ‘Sodium starch glycolate’ can also be from potato, rice, OR wheat.  Wheat is more likely to be found in products made outside of US (Europe) where corn is not the major(readily available & least costly) crop.     Hope this helps even though  learning sources of some gluten-free ones may make them less appealing. (And while the “Read every label, every time” for gluten is a pain, I’ve learned there are worse things than celiac dx—Allergy to corn would be at top on my list!)          Bev in Milwaukee From www.gluten-free.com EXCIPIENT INGREDIENTS IN MEDICATIONS  Aspartame - An artificial sweetening agent derived from aspartic acid. Aspartic Acid - A crystalline amino acid found naturally in sugar beets and sugar cane.  Benzyl alcohol - Made synthetically from benzyl chloride which is derived from toluene (a tar oil). Cellulose - (ethylcellulose, methylcellulose, hydroxymethylcellulose, hydroxypropyl, microcrystalline) – Obtained from fibrous plant material (woody pulp or chemical cotton). Cetyl alcohol - Derived from a fat source (spermaceti, which is a waxy substance from the head of the sperm whale). Croscarmellose sodium - An internally cross-linked sodium carboxymethylcellulose for use as a disintegrant in pharmaceutical formulations.  Comes from wood pulp or cotton fibers to form carboxymethylcellulose.  It contains no sugar or starch. Dextrans - Partially hydrolyzed corn or potato starch. Dextrates - Mix of sugars resulting from the controlled enzymatic hydrolysis of starch. Dextrins - Result from the hydrolysis of starch by heat or hydrochloric acid (from corn).  It can also be obtained from wheat, rice or tapioca. Dextrose - Powdered corn starch. Fructose - Obtained naturally from fruits or honey; hydrolyzed cane or beet sugar. Gelatin - Obtained from the skin, white connective and bones of animals (by boiling skin, tendons, ligaments, bones, etc with water). Glycerin - Historically, glycerin (also known as glycerol), was made the following ways: -  Saponification (a type of chemical process) of fats and oils in the manufacturing of soaps -  Hydrolysis of fats and oils through pressure and superheated steam -  Fermentation of beet sugar molasses in the presence of large amounts of sodium sulfite   Today its is made mostly from propylene (a petroleum product) Glycerols - Obtained from fats and oils as byproducts in the manufacture of soaps and fatty acids (may also be listed as mono-glycerides or di-glycerides). Glycols - Products of ethylene oxide gas. Hypromellose – A brand of hydroxypropyl methylcellulose (see cellulose). Iron oxide (rust) - Used as a coloring agent. Kaolin - A clay-like substance. Lactilol - Lactose derivative; a sugar alcohol. Lactose - Also known as milk sugar, is used in the pharmaceutical industry as a filler or binder for the manufacture of coated pills and tablets.   Commercially produced from cow's milk. Maltodextrins - A starch hydrolysate that is obtained from corn in the United States but can also be extracted from wheat, potato or rice. Mannitol - Derived from monosaccharides (glucose or mannose). Methyl Paraben – Comes from the combination of denatured wood alcohol and benzoic acid (benzoic acid occurs naturally in cherry bark, raspberries, tea, anise and cassia bark).  Polysorbates - Chemically altered sorbitol (a sugar alcohol). Polyvinyl alcohol – A water soluble synthetic alcohol (synthesized by hydrolysis of polyvinyl acetate). Povidone (crospovidone, copovidone) - synthetic polymers  Pregelatinized starch - A starch that has been chemically or mechanically processed.  The starch can come from corn, wheat, potato or tapioca. Shellac - A natural wax product used in tablet or capsule coating. Sodium lauryl sulfate – A derivative of the fatty acids of coconut oil. Sodium starch glycolate - Sodium salt of carboxymethyl ether of starch. Usually from potato but can be from corn, wheat or rice. Stearates (calcium, magnesium) - Derived from stearic acid (a fat; occurs as a glyceride in tallow and other animal fats and oils, as well as some vegetables; prepared synthetically by hydrogenation of cottonseed and other vegetable oils). Sucrose - Sugar also known as refined sugar, beet sugar or cane sugar. Titanium dioxide - Chemical not derived from any starch source used as a white pigment.  Triacetin – A derivative of glycerin (acetylation of glycerol). Silcon dioxide – A dispersing agent made from silicon.  
    • NoriTori
      Celiac symptoms but negative endoscopy and antibody test + family history of gastro problems

      By NoriTori · Posted

      @Scott Adams  Sure, Any and all information is welcome. Also the only was to convince my family to get tested is to get tested myself and conclusive answers. Very stubborn lot.  
    • trents
      Blood results

      By trents · Posted

      Understood. It's very anxiety-provoking when you don't know what you are dealing with and don't know if you are attacking it correctly.
    • Heatherisle
      Blood results

      By Heatherisle · Posted

      I have heard of NCGS, but everything is just so confusing!!! Just unsure of things as her EMA test was negative but TTG was positive @19u/ml(lab range 0.0-7.0).Apparently she also has occasional bubble like blisters in between her fingers, don’t know if that’s significant. She is triallling gluten free as suggested by the gastroenterologist after her endoscopy. Keep getting different answers when typing in her symptoms etc. Some sites say it can be possible to have coeliac, even with a negative EMA . It’s so frustrating and her anxiety levels are through the roof. I know she’s hoping it’s coeliac which is weird I know!!! But if it’s not it just means more tests. Sorry to ramble on!!!
×
×
  • Create New...