Test result insight

[disneyfamilyfive]

Hello, I had celiac tests run a week ago and my doctor still has not viewed my results (I saw them on mychart 4 days ago), hoping to get a little insight.  Background: my grandma had been diagnosed celiac and my dad was recently diagnosed with a form of celiac (rash but no gi symptoms). I have been battling anemia and have some gi symptoms similar to celiac symptoms. 
My test results came back as the following:

TISSUE TRANSGLUTAMINASE IGG value 5

Normal <6 U/ml

Iga - 287

Normal value: 70 - 400 mg/dL

Iga, Gliadin - 119

Normal value: <20 Units

Igg, Gliadin -75

Normal value: <20 UNITS

Thank you in advance for your thoughts, experience or insight.  

 

[Scott Adams]

It sounds like you're navigating a lot right now, and it’s good that you’re being proactive about your health given your family history and symptoms. Based on the results you shared, the elevated IgA Gliadin and IgG Gliadin antibody levels could indicate an immune response to gluten, which may suggest celiac disease or gluten sensitivity. However, your tissue transglutaminase IgG (tTG-IgG) result is within the normal range, and your total IgA level is sufficient, meaning the test was likely accurate. While these results might point towards celiac disease, the diagnosis often requires further interpretation by your doctor, especially in light of your symptoms and family history. Your doctor may recommend an endoscopy with a biopsy to confirm the diagnosis, as blood tests alone are not always definitive. In the meantime, you might want to avoid making dietary changes until you discuss the results with your healthcare provider, as going gluten-free before further testing can interfere with an accurate diagnosis.

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. This section covers your two positive results: DGP-IgA and DGP-IgG (Deamidated Gliadin Peptide)

 

 

[disneyfamilyfive]

Thank you for the article Scott. It was very informative.  I didn’t realize I should have been eating a certain amount of gluten prior to the test.  I only eat bread maybe 1x a week, don’t eat cereal.  Pasta occasionally.  I’m sure there is gluten in nearly everything, so I’ve had gluten but no idea how much, but definitely not slices of bread. Not sure how much or how little that could affect my results.  My doctor didn’t mention anything about eating more gluten or eating bread. 

[Wheatwacked]

  On 12/4/2024 at 11:57 PM, disneyfamilyfive said:

I have been battling anemia and have some gi symptoms similar to celiac symptoms. 

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Given your symptoms and family history and your low gluten consumption before the blood test, eventually you will be diagnosed, but it may take years.  Ask your doctor about nutrition deficiencies due to malabsorption.  Vitamin D deficiency is almost ubiquitous.

Unless your doctor has an answer to your health issues, once you've pursued a diagnosis to your satisfaction I would suggest a trial period of gluten free.  In the meatime, 

  On 12/5/2024 at 12:34 AM, Scott Adams said:

as going gluten-free before further testing can interfere with an accurate diagnosis.

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Mayo Clinic research indicates a first degree relative of a diagnosed Celiac is 42% likely to also be Celiac.

  On 12/4/2024 at 11:57 PM, disneyfamilyfive said:

my dad was recently diagnosed with a form of celiac (rash but no gi symptoms).

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Dermatitis herpetiformis causes itchy bumps and burning blisters as a result of a gluten sensitivity that makes your immune system overreact. 

Are You Confused About Your Celiac Disease Lab Results?

[Scott Adams]

  On 12/5/2024 at 1:17 AM, disneyfamilyfive said:

Thank you for the article Scott. It was very informative.  I didn’t realize I should have been eating a certain amount of gluten prior to the test.  I only eat bread maybe 1x a week, don’t eat cereal.  Pasta occasionally.  I’m sure there is gluten in nearly everything, so I’ve had gluten but no idea how much, but definitely not slices of bread. Not sure how much or how little that could affect my results.  My doctor didn’t mention anything about eating more gluten or eating bread. 

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Unfortunately many doctors don't know the proper protocol for a screening for celiac disease.

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

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"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

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and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[disneyfamilyfive]

Good morning, I thought I’d quickly update this post.  A week or so after my test results were posted, my doctor’s nurse called to say 2 of 3 blood tests showed elevated numbers and referred to GI for further evaluation.  It took about 3 -4 weeks to get into a GI, it was over the holidays too, so I’m sure that pushed things out a bit.  Met with the GI who was great, really listened and said that even though the main celiac test was still in normal range, there are 2 tests that are not and in his experience not all 3 tests need to be positive to take the next steps.  He said after listening to all my symptoms, and looking through my recent medical history he felt that celiac was very likely.  5 days later I was in for an endoscopy (and colonoscopy just to cover all bases at once) and 6 days later the biopsy results came back as positive for celiac sprue.  GI of course said a strict gluten free diet, referred to GI registered Dietitian and come back in one year for a repeat endoscopy to determine healing. If symptoms don’t subside (or improve) after gluten free diet for a couple then return sooner. 

[Scott Adams]

Thanks for the follow up, and at least you know the cause of your health issues and can now start working towards better health!

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[disneyfamilyfive]

Thank you! This will be so helpful.  It’s overwhelming for sure!