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Negative Blood Tests Positve Biopsy?

lilbit

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lilbit Apprentice
lilbit
Posted

I'm pretty new to Celiac's, I didn't know it even existed until about a month ago! I will ask my question up front incase noone wants to hear all the gory details :)

How common is it to have negative test results and end up with a positive biopsy?

I went to the doctor in early March becuase I was throwing up everything I ate. I ended up getting scoped and there were ulcers blocking the hole to my small intestines. The doctor put me on nexium and sent me home on leave for two weeks. After about a week I finally stopped throwing up, but I felt terrible.

I had some symptoms before the ulcer that I didn't think of so much as symptoms as really annoying. I'm gonna list some of them just for comparison's sake:

Muscle Spasm and Cramps (cramps in legs- wake me up in the night)

Muscle Weakness (by the end of the day legs can

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sb2178 Enthusiast
sb2178
Posted

It happens. There are also people who don't produce (much) IgA, so don't test positive because they just don't make the antibodies, and have to be tested using the less common IgG tests. You also have to be eating enough gluten for your body to make the antibodies.

Find out if you doc did a total IgA with your blood tests and if that was normal. If it was, it could be a false negative or you may just have negative bloodwork. If it wasn't, you could follow up on getting the IgG tests done while you are waiting.

BUT, if you want the tests to be valid, you should consider upping your gluten intake if you don't normally eat much of it. Typical recommendations are around 3-4 slices of bread/day.

Good luck.

ravenwoodglass Mentor
ravenwoodglass
Posted

I am sorry you are having to wait so long to get into the GI. You may want to call the office and see if you can get on the cancellation list if you are able to get there on short notice. Do keep eating gluten until after the scope is done. You don't have to wait for the results to give the diet a try, just don't go gluten light or free till after the biopsy is done. False negatives on blood work and even biopsy are all too common so do try the diet after testing is done. Your symptoms do make it sound like you could be one of us.

lilbit Apprentice
lilbit
Posted
  • Author

I'm pretty sure he did the IgG as well, but he wasn't too concerned that the results came back negative. He just referred me to the GI right away (granted I had to wait 6 weeks to get in). He actually said he could still be Celiac's or some form IBD... I'm kinda voting for Celiac's since I'm not a big fan of taking all kinds of meds.

I tried to get in earlier, but it just wasn't happening. I go next week now. I also just learned that my paternal aunt has celiac's- neg blood work... 1st biopsy negative... 2nd positive. Apparently she tried to nag my dad into getting a biopsy (he has type1 diabetes) and he refuses... He did get the blood tests, and showed positive, but hasn't done the biopsy yet.

I have to say its helpful to read these posts and know that other people are having the same symptoms and struggles... makes me feel alot less insane :)

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