Jump to content

  • 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):

Mayo Clinic Easy To Read Celiac Testing Algorithm

pgrovetom

Recommended Posts

pgrovetom Rookie
pgrovetom
Posted

I found this very helpful. Its the Mayo Clinic's Celiac diagnosis flow chart. Check it out. Its about the most straightforward way to describe the standard method for diagnosing Celiac.

Open Original Shared Link

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

I must say that I hate that the chart says that if you don't have one of the most common two genes, you can't have celiac. But this is otherwise a decent chart. I do love that it says about 10% test seronegative.

organicmama Contributor
organicmama
Posted

Do you have that article about the other genes? I remember reading it but haven't found again.

beachbirdie Contributor
beachbirdie
Posted

I found this very helpful. Its the Mayo Clinic's Celiac diagnosis flow chart. Check it out. Its about the most straightforward way to describe the standard method for diagnosing Celiac.

Open Original Shared Link

That is interesting to look at. Makes it easy to think one's way through the puzzles. By the Mayo Clinic chart, I should be asking for more testing since I had more than 4 units of TTG IgA.

Wonder if my doc will do the Deamidated Gliadin antibody...

pgrovetom Rookie
pgrovetom
Posted
  • Author

That is interesting to look at. Makes it easy to think one's way through the puzzles. By the Mayo Clinic chart, I should be asking for more testing since I had more than 4 units of TTG IgA.

Wonder if my doc will do the Deamidated Gliadin antibody...

My Kaiser Docs ONLY tested TTG IgA and yet I took the Labcorp Comprehensive panel myself almost 2 years ago and only failed the DGA IgA badly at 10.4 with a 0-10 range. I passed all the other tests in the panel. According to the Mayo Clinic, given their reputation, the Kaiser Docs cut corners by doing only the one test plus they violated the current recommendations of 4 samples in the biopsy plus they ignored the DQ2 and DQ8 tests.

Don't ever trust Kaiser as they cut corners such that the diagnostic success is seriously compromised. Now I plan On bringing this and other articles to them plus I went ahead and did the DQ2 and DQ8 tests myself this week and have yet to get results. Since I've been on a Gluten free diet almost 2 years ( but suspect contamination or something else), I might not test correctly but when you are desperate, you do what you can.

Even though the Mayo diagram is good, it doesn't really recognize that Gluten sensitivity reactions by themselves without any or much intestine damage is a real problem.

ravenwoodglass Mentor
ravenwoodglass
Posted

I found this very helpful. Its the Mayo Clinic's Celiac diagnosis flow chart. Check it out. Its about the most straightforward way to describe the standard method for diagnosing Celiac.

Open Original Shared Link

Gee going by their chart I guess I don't really have celiac. It must all be 'in my head'. :unsure::angry: Guess I should pull out my tackle box of drugs that I had to take prediagnosis and go have a big mac. Y'all will come to my funeral right......

sue1234 Rookie
sue1234
Posted

I do know one thing--celiac or gluten intolerance is NOT an easy, logorithmic thing that can diagnosed by a flow chart!

I am still sitting as undiagnosed. Let me show where my numbers fit into this:

My tTG is 0. So, if you stop there, I am completely negative.

BUT, my doctor also tested my deaminated antigliadin IgA, and it was 45.4(0-10).

According to their chart, a negative tTG just means no celiac, stop testing. BUT, if it is positive, THEN test the antigliadin. Why? I thought the tTG was "the" blood test to rule in/out celiac. So why do further testing???

Then, if the antigliadin is over 10, biopsy. Mine was 4x the upper limit, yet the biopsy was negative. So, where do I fit into all this? I think they are missing something here, possibly that my 4x antigliadin maybe represents gluten intolerance?

This is soooo confusing.

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

But how can you provide reproduce-able studies if you don't have flow charts and algorithms? :rolleyes:

I think a lot of the newer generation doctors forget that there is as much art to being a physician as there is science.

beachbirdie Contributor
beachbirdie
Posted

Gee going by their chart I guess I don't really have celiac. It must all be 'in my head'. :unsure::angry: Guess I should pull out my tackle box of drugs that I had to take prediagnosis and go have a big mac. Y'all will come to my funeral right......

:lol: You have a wonderful sense of humor! You got me ROFL!

It was hard enough to get a doc to think "outside the box" for thyroid care, celiac is ten times trickier!

Please, do stay away from that Big Mac! :o

eatmeat4good Enthusiast
eatmeat4good
Posted

I think a lot of the newer generation doctors forget that there is as much art to being a physician as there is science.

And a lot of them should really have been "Artists" instead of Doctors...at least in my experience... :huh::unsure:

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. trents
      - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Iron loss and potential celiac.

      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint...
    2. Joseph01
      - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

      This is way past due for your post. I have Celiac and have been recovering for more than a year. Doing well. Used Essential oil to day to fry some chicken. Read the label all good. Then ate some chicken. Here comes the gluten reaction. I haven't had a gluten reaction since year. I am angry. I have been so careful with this crap and don't wan't any...
    3. ThomasA55
      - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Iron loss and potential celiac.

      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary...
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Edy's and Dreyer's ice cream

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I...
    5. knitty kitty
      - knitty kitty replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Edy's and Dreyer's ice cream

      Do keep in mind that many of the newly diagnosed have lactose intolerance. This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse. When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442
    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Iron loss and potential celiac.

      By trents · Posted

      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      We Keep Getting Glutened With Vegetable Oil

      By Joseph01 · Posted

      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Iron loss and potential celiac.

      By ThomasA55 · Posted

      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
×
×
  • Create New...