Postponing seeking a diagnosis?

[kim-d]

Hello. I'm a 22 year old college student and I've had constant stomach problems since I was 14. Recently I noticed that my problems get worse when I eat more wheat. I tried to follow a gluten free diet, which didn't end up entirely gluten free, but I still had reduced my gluten consumption very much, and I felt a lot better. I also have fatigue, inability to gain any weight, iron deficiency, possible vitamin deficiencies, really bad memory and brain fog that increases by time, unexplainable muscle aches and tachycardia which all can possibly explained by celiac/NCGS. 

I wasn't able to continue a completely gluten free diet as I am eating from my school and dorm's cafeteria and almost all food there have gluten so I was going very hungry. They do offer a gluten free menu with a report though. So I decided I should try getting a diagnosis if I can, especially after reading how it was much harder to do gluten challenge after quitting gluten for a while. I was able to get an appointment for next week, and started eating around 150gr of bread per day to be sure. 

First 24 hours I didn't feel any worse so I was starting to doubt myself, but then bloating hit hard. It wasn't anything unbearable, but the problem is I have finals soon and I'm now realizing this is a really bad time to do this. I can't begin studying from pain distracting me. I'm thinking of cancelling the appointment and eat low gluten until exams are over. 

I worry about one thing. Before I went low gluten, I was eating a lot of bread already for over a month, which is what clued me into gluten, and I only went low gluten for around 10 days before going high gluten again. I wasn't that worried about a false negative. But if I eat low gluten until my exams are over, it means over a month of low gluten, and I would need a lot more time eating high gluten later to get a correct result. 

I'm not sure which one should I do, bear it until my appointment or cancel it and try again when I'm free later. And If I choose the second one, how long would I need to do the gluten challenge for a blood test?

[trents]

Welcome to the forum, @kim-d!

Recently revised guidelines or the "gluten challenge" recommends the daily consumption of at least 10g of gluten for at least two weeks up until the day of the antibody test blood draw. 10g of gluten is the amount found in about 4-6 slices of wheat bread.

IMO, I would wait until you have time to do it right so as to remove all doubt as to whether or not your gluten consumption was adequate for long enough to ensure valid testing. In the meantime, focus on removing gluten from your diet and see how your symptoms improve (or not) as one piece of the diagnostic puzzle.

[kim-d]

Thanks, @trents. That was what I was thinking of as well, but I'm a huge worrier and keep doubting if it was right thing to do so it seemed better to ask more experienced people. My diet won't be 100% gluten free unfortunately, but I'm thinking of using it as an opportunity to keep a food log and try to see what makes things worse. 

[trents]

Although the gluten challenge guidelines suggest at least two weeks of at least 10g of gluten daily, I would go for 4 weeks to make sure - if you can tolerate it, that is.

When you go in for the blood draw, make sure to ask your physician to order not only the tTG-IGA test but the total IGA test. The tTG-IGA test result cannot be trusted if you are IGA deficient. The total IGA test checks for IGA deficiency. Many physicians will order only the tTG-IGA. So, at the minimum, the doc should order the tTG-IGA and the total IGA. There are other celiac antibody tests that can also be ordered for a more comprehensive panel, especially in the case of IGA deficiency. 

Here is an overview of celiac disease antibody testing: