should even get the tests done? everyone told me not to

[aprilmimi]

Hey! i’m new here. I’m 18 and since december for some reason i started getting very sick after eating gluten, like after a few hours I would throw up the entire night, i started sweating but i was freezing and summed up I felt like s$#& and that was all after eating a slice of bread last week. There were previous times that were pretty bad too but i had eaten much more gluten. and since then i stopped eating gluten because it just makes me so sick that i have to stay in bed for the rest of the day.Ive read that for the tests to be accurate u have to be actively eating gluten.

I told my parents about it and about getting the tests done and my dad told me that he knew people with celiac disease and that they were all skinny. I’m definitely not the skinniest my bmi is like 21. And my mom told me that everyone with celiac disease poops blood. And that they are sure that i don’t have it and that i’m just intolerant. Anyway I wanted to ask people here since you guys obviously know more about the topic.

[Ennis-TX]

Now I was actually over 200lb before diagnosis, a lot of it was inflammation and my body was in hoard mode all the time thinking it was starving since it could not get the proper nutrients so it held on to everything it could. I dropped down to the 120s within 6 months removing gluten.
Blood in poop...no that is Ulcerative Colitis or Crohns, you only see blood when your large intestine is bleeding, small intestines and stomach bleeding would be black and tar like stool....none of this is directly celiac but secondary issues and other autoimmune diseases if I recall properly.

Celiac has hundreds of symptoms and it varies from person to person, and yes you could have celiac. You HAVE to be eating gluten daily (1-2 slices of bread) for around 6-8 weeks for the blood test. This is followed with a endoscope and a biopsy to look for damage to the intestines under a microscope.
https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/
https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/
 

[GFinDC]

Ennis has it right, bleeding is not a usual thing in celiac disease.  Also right about the testing.  If you go gluten-free before testing the tests are not accurate.  The blood tests are easy to get but ask for the full celiac antibodies panel, not just the ttg screening test.  You do need to keep eating at least a small amount of gluten until all testing done.

Regarding symptoms, yes many people do have gastrointestinal symptoms.  But many people with celiac don't have GI symptoms but instead have nerve problems or skin rash or other symptoms.  Some people even have no symptoms but still have celiac disease.  So the only way to know is to be tested.  They generally do the blood antibodies tests first and then do an endoscopy later.

While you are getting tests done consider getting your vitamin and mineral levels checked also.  Celiac can cause malabsorption leading to vitamin/mineral deficiencies.