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I am so very confused...


DorySue

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DorySue Newbie

I am very confused by my blood results, and 2 of my children being diagnosed. So, I am 43 yrs old I am complete menopause (at age 36), I have onset epileptic at 38, with my blood work my IgA is low 0.81, but my celiac test is still negative? How?


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trents Grand Master

Welcome to the forum community @DorySue!

I take it to mean that your IGA score of 81 is referring to what we call "total IGA"! The total IGA is not a test for celiac disease per se. However, if total IGA is low it will drive down individual celiac antibody IGA scores toward the negative range and so can create false negatives in, for instance the tTG-IGA celiac antibody test, which is the primary test ordered by physicians when checking for celiac disease. In this situation, physicians should reflexively (i.e., in response to) order other celiac antibody tests that are not affected by low total IGA such as the DGP-IGA and the DGP-IGG. Here is an overview of celiac disease antibody testing: 

 

DorySue Newbie

Here is a screenshot of what the results say..

Immunology Celiac Screening                            RESULT           RANGE

Tissue Transglutaminase Ab IgA                         <0.5             <12.0 U/mL

                                                                        NEGATIVE
IgA antibody to tissue transglutaminase has
approximately 95% sensitivity and specificity for
celiac disease. False negative results may occur
with a gluten-restricted diet or IgA deficiency.
The BioPlex method includes an internal control
to confirm IgA is sufficient, thus avoiding false
negatives due to IgA deficiency.

Tested by a multiplex flow immunoassay (BioPlex)
method.             

                                    RESULTS       RANGE

Immunoglobulin IgA  0.81 LOW     0.54-4.17 g/L

trents Grand Master

Yes, you are IGA deficient and should request a more complete celiac panel that includes the tests I mentioned above that do not depend on normal IGA levels.

If those other tests are negative then you could have NCGS (Non Celiac Gluten Sensitivity) for which there is no test but shares many of the same symptoms with celiac disease. But first, celiac disease must first be ruled out. NCGS is 10x more common than celiac disease and also requires a commitment to gluten free eating.

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    • trents
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      Your situation involves interpreting elevated Deamidated Gliadin Peptide (DGP) IgG levels, which can indeed be confusing without clear symptoms or additional diagnostic tools like a biopsy. Here’s a possible approach to help clarify your next steps: Understanding DGP IgG: DGP IgG is a blood test often used to help diagnose celiac disease, particularly in individuals with IgA deficiency. However, since you’ve confirmed you don’t have IgA deficiency, the focus should shift to other celiac-specific tests, such as tissue transglutaminase IgA (tTG-IgA) and endomysial antibodies (EMA-IgA), which are more specific for celiac disease. Elevated DGP IgG alone is not diagnostic of celiac disease but may indicate gluten-related immune activity. Non-Celiac Gluten Sensitivity (NCGS): You’re correct that NCGS does not typically show abnormalities in blood tests like celiac disease does. NCGS is diagnosed based on symptoms (e.g., bloating, fatigue, brain fog) that improve on a gluten-free diet, after celiac disease and wheat allergy have been ruled out. Since you don’t currently have symptoms, NCGS seems less likely in your case. Possible Next Steps: Monitor Symptoms: If you remain asymptomatic, it’s reasonable to continue eating gluten and retest after some time. This is because celiac disease can develop or become symptomatic later, and ongoing gluten consumption is necessary for accurate testing. Repeat Testing: Consider repeating the tTG-IgA test, as it is the most sensitive and specific for celiac disease. If this is also elevated, it strengthens the case for further investigation. Genetic Testing: If available, HLA-DQ2 and HLA-DQ8 genetic testing can help rule out celiac disease if negative, as nearly all celiac patients carry one or both of these genes. However, a positive result doesn’t confirm celiac disease, as these genes are common in the general population. Dietary Trial: If testing remains inconclusive and you develop symptoms, a supervised gluten-free diet trial might provide clarity. However, this should only be done after thorough testing, as going gluten-free prematurely can interfere with accurate diagnosis. Biopsy Limitation: Since a biopsy is not available in your town, you’ll need to rely on blood tests and clinical judgment. If your tests remain inconclusive but you develop symptoms, you may need to travel to a facility that can perform a biopsy for definitive diagnosis. In summary, if I were in your position, I would continue consuming gluten, monitor for symptoms, and retest with more specific celiac markers (tTG-IgA and EMA-IgA) in a few months. If symptoms develop or tests remain ambiguous, consulting a gastroenterologist for further guidance would be advisable. Always work with a healthcare provider to interpret results and tailor next steps to your specific situation.
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      The fact is, we know very little about the mechanism of NCGS at this point. We know much more about celiac disease. Some experts believe that NCGS can transition into celiac disease. And I do not agree with what you read about NCGS not producing any elevated antibody tests. IMO, and I have no scientific data to support this, it's just a hunch base on reading many, many forum contributor test result reports, elevated igg antibodies may signal a transition from NCGS to celiac disease.  But there are other things besides gluten that can cause elevated dgp igg and ttg igg antibody levels. So, yes. I would continue to monitor the situation if I were you and get regular testing. Not necessarily every 6 months but yearly anyway if you can. In the meantime, if you know gluten causes you unwellness, continue to avoid it.
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