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

How Do You Find A Doctor With The Right Tests!?

taynichaf

Recommended Posts

taynichaf Contributor
taynichaf
Posted

I saw one specifically for a full celiac panel... He tested like two things out of the whole panel I requested. They were negative, but I'm not convinced. I just went to a different doctor to get the test and I'm not sure what she tested.. But I asked if it would be the FULL celiac panel, including the the one that starts with D(I had it written down) and she never gave me a yes or no answer... She went on and said that the blood tests don't diagnose it, the biopsy would. She made it seem like I would get an endoscopy if the tests were negative, so I am happy about that.. But really... How hard is it to do a FULL celiac panel!?!? Testing only a few things leads me to not believing those tests..

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

Celiac.com Sponsor (A8-M):


Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Hi taynichaf,

 

It's me again.

In your city is it the doctor office that draws the blood and sends it to the lab?
Where I am, the doctor gives us a paper requisition and we can go to any lab we want to.
How does it work for you?

Excuse my English but that doctor is a moron.
There are several causes for damaged villi.
The point of doing the Celiac panel is to screen for Celiac and to confirm
that the flattened villi is caused by Celiac and not some other cause.


So these are the tests I did on my Celiac panel.

Total IgA
Transglutaminase IgA tTG-IgA
Deaminated Gliadin IgA DGP-IgA
Deaminated Gliadin IgG DGP-IgG



Other tests are (if available)

Transglutaminase IgG tTG-IgG

Gliadin Antibody IgA AGA-IgA
Gliadin Antibody IgG AGA-IgG


It was a while back that I had talked to my doctor as I was procastinating to get back on the gluten wagon.
I think he suggested the AGA or the tTG.

But from having read Celiac library books I knew there was more to it.



So to answer your question: I did it backwards from you.

I made a list of the tests based on what I had read in books and on the internet.

Then I looked up the 3 blood test lab companies in my city.

I searched their web site using the key word: Celiac and Celiac panel.
You may have to search for their individual test names.

For example Blood lab ABC only had one 2 test panel and were expensive.

The blood lab XYZ had 3 Celiac panels and other individual tests.

 

I also spoke to the hospital lab but they only did the tTG test.

 

I made a list of their panels and individual tests that were not on the panel.
I included their test codes when possible.
I called them and the lady on the phone sounded confused about the prices.
So I when I was in that area of their head office, I stopped by with my printouts and asked them for the prices for the tests.
One of their panels no longer existed but was still on their web site.
So that is why you have to phone them to make sure the test panel still exists and get the test code.

I wondered which of the 2 panels to do so I read on this web site
and saw I might as well do the big panel as some people test positive for one of the 3 tests.


So in conclusion:

1. Don't rely on the doctors as they don't know up from down.

2. Find out all the names of the blood labs in your city.

3. For each lab:
Make a list of the Celiac tests they offer individually and as panels.
Write down the prices for each test or panel.
Write down the test codes (very very very important)
You may have to phone them to get the prices.

Compare the prices and which lab and which test covers the most bases.

I suggest:

Total IgA
Transglutaminase IgA tTG-IgA
Deaminated Gliadin IgA DGP-IgA
Deaminated Gliadin IgG DGP-IgG


VIP: get the test code for the test panel you want from the lab you picked.

Double check on the phone or in person the code and the price for the one you finally picked.

Go to your doctor and ask for "this test panel" to be printed on your requisition form.

MAKE SURE the doctor writes down the TEST CODE you want for the panel you want.

Ask the doctor to write down "CC to patient".

After you leave the doctor's office, Photocopy the requisition in case the blood lab loses it or gets the tests mixed up.

And of course eat your gluten (pasta, whole wheat bread and white bread)
The Celiac Disease Center says you should be eating gluten for 12 weeks prior to the Celiac blood panel.
The sooner you start the sooner you can do the test.

You are paying for the blood tests so the doctor should give it to you.
The blood is coming from you and not the doctor so why won't they test you?

Let us know how it works out.

 

Marcus

PS: please say a prayer for me,
I'm going to the gastro doctor that I've been waiting months to see  for a consult .
I hope he's receptive to me. I have a lot of notes and aspergers.

 

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Addendum:

I remember my doctor telling me that the blood test lab I used is also in the US so that panel I did should be available to you.

(I'm in Canada)

taynichaf Contributor
taynichaf
Posted
  • Author

Where I am the doctors choose the tests... :( I could probably try and get my own somehow, but insurance wouldn't cover that and I'm unemployed..

Thank you for the info! And I will def pray for you <3

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Hi taynichaf,

 

Here too the doctor choses the test but we get to decide which blood test lab we want to go to.

Do you get to choose the lab for your test?

Or does the insurance company say to go to lab XYZ.

 

If you don't get to choose the lab for your test but know the test will be done by lab XYZ find out on their web site or phone to find out:

 

Do they have a full Celiac panel

What test is on that panel

What is the Celiac  test panel name

What is the code for that Celiac test panel.

 

Then when you see the doctor you give her the test code and test panel name.

 

A lot of us on this board had to tell our doctor which test to do or the test panel name because they don’t know.

 

When I went gluten free my first doctor didn’t want me to be tested.

Had I known what I know now about the importance of being tested

while I was half dead before going gluten free and which test to do, I would have done it then.

(2 years ago). Last week I failed the Celiac panel test.

 

My current doctor is a good guy but he only knew about the old AGA test.

So after my research,  I gave him the test code of the panel I wanted.

He wanted to find out too and he filled in the blood test requisition with that test code.

 

 So to answer your question in the title: you choose the test and then tell the doctor you want this test panel (with the code).

 

Best of luck.

taynichaf Contributor
taynichaf
Posted
  • Author

Ohh! That makes sense.... For the tests i've done, I just tell the doctor that I think I have celiac disease and ask for the full panel... Then they would just find a test and i'd go get blood drawn. I shouldve tried to look up certain tests before... but I never thought I could even chose, ha. But thanks!!

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

I think you were saying that she didn't give you a blood test form, right?

So you still have a chance at getting a Celiac panel done.

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

Celiac.com Sponsor (A8-M):


taynichaf Contributor
taynichaf
Posted
  • Author

Nope, she already ordered the tests and sent my blood out:/ just praying that I'm celiac while I wait for the results now...

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

So the doctor takes your blood in her office and sends it herself?

She doesn't give you a form and you go to the lab of your choice?

Because my doctor always give me the requisition (therefore I know what is on it) and I go to any lab.

 

Please ask her for a photocopy (say it's for your file in an official tone) and let us know which tests you got.

taynichaf Contributor
taynichaf
Posted
  • Author

Well she gave me this paper and told me to go next door..and when I asked if it was the full panel, she didn't make sure it was..I had no choice in it then:/ when she cals with the results I'm ordinary asking for a copy! :)

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

You should have run to a photocopy place, copy it and run back to the lab LOL  :rolleyes:  

So many people here just get tTG, I hope you got the DGP-IgA and DGP-IgG.

Did you peek at the paper?

taynichaf Contributor
taynichaf
Posted
  • Author

Lol,I should've!..but I guess I wasn't thinking:/ I did look at it, but it didn't say any specific tests..just something about celiac lab..

taynichaf Contributor
taynichaf
Posted
  • Author

Ohhh! And I checked out my old tests and looked up the lab they came from...and all the tests were available!!! But he only did one!

Archived

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

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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,333
    • Most Online (within 30 mins)
      7,748
    Donna Chem
    Newest Member
    Donna Chem
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.