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Tests results, negative and positive, please help me.

Gloria L
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Gloria L Enthusiast
Gloria L
Posted
  • Hi, I'm new to this forum, I hope someone can help me with these tests results, I started feeling sick in March 2020 and getting tested for celiac disease since June 2020 with negative results, even the biopsy done in August was negative. The biopsy report details the findings from specimen A through specimen F, so I’m assuming only 6 samples were taken?? Biopsy was all normal and they even ruled out celiac disease, it says “Duodenal bulb appeared normal, biopsy done to rule out celiac disease”, the doctor confirmed no celiac disease. After that, more blood tests were done with more negative results until this past December, it was positive for celiac disease. Is this possible, to have in the beginning negative blood tests and biopsy results and then all of a sudden a positive blood test? Thank you for reading, please see the pictures.

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Scott Adams Grand Master
Scott Adams
Posted

You DGP results, which are the best tests available, are high positive, so it looks like you likely have celiac disease. Many doctors are diagnosing celiac disease via blood tests alone, however, your doctor may also want you to do a endoscope/biopsy to confirm it. Normally you need to keep eating gluten until that part is finished, so be sure to consult with your doctor regarding their interpretation of your blood tests, and whether or not you need a biopsy.

Gloria L Enthusiast
Gloria L
Posted
  • Author
32 minutes ago, Scott Adams said:

You DGP results, which are the best tests available, are high positive, so it looks like you likely have celiac disease. Many doctors are diagnosing celiac disease via blood tests alone, however, your doctor may also want you to do a endoscope/biopsy to confirm it. Normally you need to keep eating gluten until that part is finished, so be sure to consult with your doctor regarding their interpretation of your blood tests, and whether or not you need a biopsy.

Hi Scott, an endoscopy was done in August 2020, the diagnosis of the biopsy is as follows: "Duodenal mucosa with intact villous architecture and no increase in intraepithelial lymphocytosis seen", "Duodenal bulb appeared normal, biopsy done to rule out celiac disease".

The DGP test was in December 2020 ordered by an Integrative medicine doctor, that's why I'm confused, in the beginning all blood tests and even the biopsy were negative until this past December that this new doctor ran the DGP test with a positive result, this doctor told me to keep away from gluten and sent me home, he will see me again in a month. As per this doctor, I started going gluten free since January 7th. 

Gloria L Enthusiast
Gloria L
Posted
  • Author

Should I still call the GI doctor?

Scott Adams Grand Master
Scott Adams
Posted

Many people who are gluten sensitive don't have villi damage. It would not hurt to contact the GI and aske them how many samples they took, and if they used the Marsh scale to grade them. At least 4 samples are recommended, and then they should be graded using the the Marsh scale.

Given your high DGP results though, some doctors would diagnose you with celiac disease based on these results alone, which it sounds like they've done. If your doctor has recommended a gluten-free diet, and you are on one now, I would stay gluten-free. You don't want to end up with intestinal damage. 

Gloria L Enthusiast
Gloria L
Posted
  • Author
1 hour ago, Scott Adams said:

Many people who are gluten sensitive don't have villi damage. It would not hurt to contact the GI and aske them how many samples they took, and if they used the Marsh scale to grade them. At least 4 samples are recommended, and then they should be graded using the the Marsh scale.

Given your high DGP results though, some doctors would diagnose you with celiac disease based on these results alone, which it sounds like they've done. If your doctor has recommended a gluten-free diet, and you are on one now, I would stay gluten-free. You don't want to end up with intestinal damage. 

Thanks Scott, by looking at the biopsy report, it looks like they took 6 samples because it has reports from specimens A,B,C,D,E,F. I'll call tomorrow the GI doctor and ask anyways. I started to experience digestive problems in March, before March I never had any. The biopsy was done in August, do you think that it could be a possibility that between March and August there was not enough time to cause significant damage to my intestine even though I was having digestive problems already? or only when the intestine has been damaged you start having symptoms? in symptomatic patients I mean. 

Scott Adams Grand Master
Scott Adams
Posted

Yes, it is a possibility that your celiac disease, similarly to Type I diabetes, kicked in at that time. If you keep eating gluten I suspect your symptoms would continue to get worse and worse, and you may end up with full blown celiac disease with flattened villi and malabsorption of nutrients (trust me that you don't want to go there!).

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      I wasn't given any blood tests. I think I should try the gluten free diet because when I cut it out a few weeks ago for just a couple of days, I know I started feeling better. The difference was actually pretty dramatic. When I learned gluten free eating may cause false negative biopsy results, I went back to gluten full force and feel like you know what × 10. Do you feel it would be okay since the gold standard for diagnosis is behind me or should I wait for biopsy results? In your opinion, of course. I know you can't offer me medical advice.
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