Could the test be wrong?

[radele]

Hi, I am here because I started having a lot of headaches about 2 years ago, which was joined by vertigo/dizziness, fatigue, nausea, about one year ago and then stomach and bowel issues a few months later and most recently acid reflux.

I am able to live a normal life and started college this fall but I feel like this keeps interrupting my life and I would really like to solve it once and for all. I am a 19-year-old female, 5'2", 119lbs. I run or workout nearly every day, but sometimes feel like I'm dragging myself out to the track even after 8 hours of sleep.

About 4 months ago my doctor suddenly suggested a celiac test and did it right then. It was negative and I dismissed it but remembered later that I had had oatmeal for breakfast and probably hadn't eaten gluten for 12 hours or so. Would that cause a false negative?

I don't get as many headaches now and can have gotten used to being a little bit dizzy sometimes, but my GI issues: diarrhea, gas, stomach ache, nausea are what make me wonder if I should be taking action again. Part of the problem is I've moved several times recently and keep switching doctors. Please let me know what you think.

Thank you so much,

Radele

[trents]

41 minutes ago, radele said:

About 4 months ago my doctor suddenly suggested a celiac test and did it right then. It was negative and I dismissed it but remembered later that I had had oatmeal for breakfast and probably hadn't eaten gluten for 12 hours or so. Would that cause a false negative?

Welcome to the forum, radele!

No. Not having gluten for 12 hr. or so would not cause a false negative. The Mayo Clinic guidelines for a pretest gluten challenge are 2 slices of wheat bread daily (or the gluten equivalent) for 6-8 weeks leading up to the celiac antibody test. So, you can see it takes weeks for the antibodies to build up to the point where they should be detectable and it would certainly take more than 12 hr. without gluten to make them undetectable. 

Do you know what test or tests were run? There are a number of antibody tests that can be run when checking for celiac disease but many doctors will only run the tTG-IGA antibody tests and that misses 20% of those who actually do have celiac disease who are of white European decent and 80% of those of black African decent. Many doctors do not know this. The best approach is to ask for a "full celiac panel" where a number of antibody tests are run. What one misses another may catch. Do you have access to the test results online to get more information? Unfortunately, there is a lot of ignorance in the medical community at large about gluten related disorders and many doctors do not order thorough testing or they neglect to tell their patients not to go gluten free until all testing is complete. Arming yourself with knowledge when going to doctor appointments about gluten related disorders is important. You can't depend on them knowing what they should know about this.

There is also the possibility that you have NCGS (Non Celiac Gluten Sensitivity) for which there currently are not any definitive tests available. NCGS shares many of the same symptoms with celiac disease and is 10x more common. A diagnosis of NCGS depends on first ruling out celiac disease. All of your symptoms are common to celiac disease and/or NCGS. The antidote is the same for both: total abstinence from gluten for a lifetime. And yes, I realize that is a very daunting scenario for someone at your stage of life since it has significant social implications. 

I would suggest following the Mayo Clinic guidelines for a pretest gluten challenge and then get retested. But this time, ask for a full celiac panel. Here is a primer explaining the various antibody tests that can be run: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

It is important to make sure "total IGA" is tested since if your total IGA is low it can skew other IGA tests downward toward the negative range.

Edited September 22, 2022 by trents

[Scott Adams]

If you can share your full blood tests results with us that would be helpful. Your many symptoms could be related to gluten sensitivity, and since you had negative results you could simply start a gluten-free diet for a while. Keep in mind that you may also want to cut out oats for a while as well, as some with gluten sensitivity also cannot tolerate oats. If you do add them to your diet, be sure they are gluten-free oats.

[radele]

3 minutes ago, Scott Adams said:

If you can share your full blood tests results with us that would be helpful. Your many symptoms could be related to gluten sensitivity, and since you had negative results you could simply start a gluten-free diet for a while. Keep in mind that you may also want to cut out oats for a while as well, as some with gluten sensitivity also cannot tolerate oats. If you do add them to your diet, be sure they are gluten-free oats.

I don't have my full test results. The doctor just said they were normal. That is good to know about oats, I thought oats were always gluten-free. I will talk to my doctor and possibly get more tests, but if they're negative, I might consider going to a gluten-free diet anyway. 

Thank you so much

[trents]

About 10% of celaics react to oats like they do wheat, barely and rye. There are two potential problems with oats, radele. One is that the oat protein, avenin, is similar enough to the gluten protein to cause some celiacs to react to pure oats like they do gluten. The other potential problem is that mainstream oatmeal brands are often cross-contaminated with wheat. The two grains are grown in the same areas, harvested, transported, stored and processed with the same equipment as wheat, barley and rye (the three gluten-containing grains). If you're goal is to eat gluten free then you must take into account cross-contamination, elsewise you will be eating a lower gluten diet but not gluten free. One big source of cross contamination (CC) is eating out at restaurants. For instance, you may order gluten free spaghetti noodles at Olive Garden but they may cook them in the same pot as they were using for wheat noodles. Or, at Denny's they will cook that fried egg on the same griddle they were using for French toast. McDonalds French fries will be cooked in the same fryer with breaded chicken patties, etc. Most newbies to gluten free eating don't take CC seriously.

[Scott Adams]

One correction on McDonald's, they do not use shared fryers for their French fries. This decision has nothing to do with gluten contamination, and more with quality control of their fries (not wanting batter particles on them, strange tastes, etc.).