Celiac Serology after Gluten Challenge

[GfreeOH]

Hello,

I have a one-off question regarding Celiac Serology. I had an EGD on Monday of Last week after a 7/8 week gluten challenge. I had been gluten free for 6 months prior to the gluten challenge. The EGD found Villous flattening and suspected Celiac. I have the Celiac HLADQ Genes confirmed by Mayo clinic already.

My question is:

The Gastro's office called me this AM to let me know that they would still like my to have Celiac Serology drawn and I need to be eating gluten while having them drawn. I explained to them I had gone gluten free again over the weekend (since Thursday evening) to get out of the abdominal pain I was having and asked when I should have the bloodwork drawn. The nurse stated to have them done in a day or two. Would me not eating Gluten Thursday-today skew the ttg-iga/Igg results if I have the labwork drawn in a day or two ? I want to have accurate bloodwork this time and do not mind waiting a week or two to have the lab drawn if I need to eat gluten for a longer period of time for accuracy. I was gluten free for at least 6 months prior to the 7/8 week gluten challenge.  

Thanks in advance for any input:)

[Scott Adams]

Having stopped for a couple of days may not affect the result greatly, but the recommendation is that you should be eating gluten daily for 6-8 weeks before a blood test. I think if you just started eating it again for the few days before the test it should still be accurate. This article has more info:

 

[GfreeOH]

Thanks Scott. I had that idea as well, so, I went back on a gluten-diet Monday after just a brief few days of being gluten free. I can’t imagine it would skew the blood serology much. I had the bloodwork drawn today - so we shall see what it says. I was instructed to go gluten free post serology testing since I have already had the positive EGD and gene testing, so I will know in a few days if the diagnosis will be confirmed.

I appreciate the feedback.

[Scott Adams]

Let us know how it turns out, and the biopsy results alone mean that a gluten-free diet is very likely in your future.

[GfreeOH]

15 minutes ago, Scott Adams said:

Let us know how it turns out, and the biopsy results alone mean that a gluten-free diet is very likely in your future.

Absolutely will do! 😊

[GfreeOH]

On 1/26/2023 at 8:21 PM, Scott Adams said:

Let us know how it turns out, and the biopsy results alone mean that a gluten-free diet is very likely in your future.

So…my TTG-IGA and IGG results just posted to the portal. Both were <1.2 - so they are NEGATIVE. My total IGA is over 200 so I am not deficient in IGA. I asked multiple times if they were doing the full panel and he said yes. I even called the Gastro office before heading to the lab to ensure it was a full Celiac lab panel, and the nurse guaranteed it was.

Now, I sit with a POSTITVE EGD, POSITIVE Gene pairs, and NEGATIVE TTG-IGA & TTG-IGG (not a full panel of serology).

It’s so very frustrating not knowing what’s causing your abdominal pain/symptomology. I’m worried I will get a call Monday once he reads my TTG-IGA is negative only to tell me I am NCGS. How can one be NCGS and still have damage to the Vili/intestinal damage? Everything I read says NCGS has no intestinal damage - so how can that be my answer? 

[Scott Adams]

We've seen your scenario before, and traditionally the biopsy results have always been the gold standard. After all tests are done perhaps you should just try a gluten-free diet for a few months to see if your symptoms disappear?