Diagnosis query

[Nadia Whiffin]

Hi,

I had a blood test for celiac disease a few months back which came back as 226 TTG level, normal range 0-19, and had an gastroscopy today to confirm this. The findings were all normal, but they have taken biopsies from the first and second part of my duodenum to confirm celiac.

What is the likelihood of having celiac disease if the gastroscopy results were normal? Or do I just have to wait for the biopsy results?  
 

Thanks. 

[cnazrael89]

Is the "TTG level" you had tested the tTg-IgA? A tTg-IgA of 226 with the standard range being 0-19 is markedly elevated. My tTg-IgA at diagnosis was 11 with the normal range being 0-3. I had my endoscopy with biopsies and the GI doctor could see that there were some patchy areas of inflammation but was not able to visualize any villi to determine if they were atrophied at all. He told me that Celiac is diagnosed microscopically (hence the biopsies). My pathology report came back with near complete villous blunting despite him not being able to see anything Celiac specific during the procedure. You need to wait to hear what the pathologist is able to see under the microscope. Hopefully it is a fast turnaround time for you to get your pathology report. Other important things they will look for and commented on my pathology report was "intraepithelial lymphocytosis" and "crypt hyperplasia" consistent with Celiac sprue. 

The good news for you is now that you have had your Celiac blood testing and also the endoscopy with biopsies, you could begin the gluten free life and begin to heal and have symptom improvement if you do indeed have Celiac disease. I was told after my endoscopy to begin a gluten free diet immediately even before the pathology report came back. tTg-IgA lab test is highly specific to Celiac disease and your level was over 10x the upper limit of normal, which is quite elevated. Celiac disease can cause deficiencies in your vitamins/minerals and you should discuss with your GI doctor once you get your results back about the follow up care you will be needing after diagnosis (assuming you do have Celiac). They tested me for Vitamin A, E, D, K (PT/INR), Folate, B12, B6, B1, Copper, Zinc, TIBC/Iron/Ferritin, Methylmalonic Acid (MMA), and homocysteine. Once I had my labs drawn I was instructed on which vitamins/minerals I was needing to supplement. There are a lot of great resources on this forum for more information on supplementation but definitely discuss the labs and supplementation with your GI provider. The other post diagnosis testing I had done was a DEXA scan to check for osteoporosis (which I was found to have). Also, they wrote a referral to a dietician.  I hope this is helpful. I am relaying information I have been told on this forum and also information from my GI doctor. I am young in my Celiac journey as I was diagnosed 10/24/22 but have really been saturating myself with information on here by searching in the search bar whatever it is I'm trying to learn more about. There are some awesome Moderators on here that have decades of Celiac experience and I imagine one or more will chime in soon to give you their input on your situation. Take care!

[Scott Adams]

In Europe they are currently diagnosing celiac disease if a tTg test result is 10x the normal positive level for celiac disease, without doing any biopsy. If I were you I'd go gluten-free no matter what your biopsy outcome is, as your blood test results indicates that you are having a strongly positive autoimmune reaction to gluten.