Intestinal Growling (Part 2)

[klcarne30]

Hi! My name is Katie. I'm 18 years old. 

About seven months ago, I posted a similar forum about how I was a newly diagnosed patient struggling with symptoms of celiac disease. The one I primarily focused on was my "intestinal growling."

Now, I am nine months gluten free and pretty far into my recovery process. Unfortunately, I'm still struggling with the same symptoms I started with...EVERY DAY. I promise I am not still eating gluten. I am very careful, I don't eat out, and my parents and I understand how to read labels. 

I'm going to do my best to describe my symptoms: Every day I experience the same thing-- I wake up, I eat breakfast around 7 or 8 (usually like fruit with oats and peanut butter, or a bagel with peanut butter and banana, or a smoothie bowl, or a protein bar and fruit, etc.), then since I'm a remote student, I'll go to school in my room for classes, and about less than an hour after, I start having small growls and cramps. Sorry for the TMI, but then I will go to the bathroom to relieve these feelings. This helps with the cramping, but almost immediately after I empty myself, my intestines feel HOLLOW. Then I get the loudest stomach/intestinal growling--so loud it can echo across the room (RIP my SATs). I don't know how to explain how it feels. It's like I'm starving even though I just ate. I hate eating so much during the day because I don't want to gain more weight, and I also don't have time when I have classes and work. Before I got diagnosed, I could eat something small in the morning and make it until 1 o'clock without eating anything and have no symptoms. I long for those days.

To make this clear: it's the worst in the mornings, but it does not go away in the evening either. So it's basically 24/7.

I keep bringing these issues up with my GI. I told her that I was convinced I had SIBO. So she put me on Flagyl (an anti-biotic) for 10 days. I was hoping that this would work because I have exams coming up very soon, where I have to be in a silent room again and be able to concentrate (which has now become one of my biggest fears). Spoiler: it did nothing.

I went to a nutritional dietician. She told me to go dairy free and corn free. But then my GI told me not to cut out ANYTHING other than gluten. So after a week or two of being dairy free, I went back on dairy. THEN, the SIBO treatment didn't work out and I took matters into my own hands and went dairy free again. I have only been dairy free now for like five days. I'm still experiencing constant growling.

I don't know what to do. I just keep praying that something will fix me, and that I'll be "normal" again. But I don't think it should take this long, maybe I'm wrong. I just need some guidance so I can get through my exams embarrassment free. 

Thanks for listening! Sorry if this was really long!

 

[RMJ]

Are your oats labeled gluten free?  If not carefully processed, oats can be contaminated with wheat because of how they are grown and transported.  One can buy “pure” oats, but even then about 10% of people with celiac disease react to oats in the same way that they react to wheat. Perhaps stop eating oats and see if that helps.

Have you had your antibody levels rechecked to see if they are dropping?

[klcarne30]

Yes, my oats are 100% gluten free and produced in a celiac safe facility! And my antibody levels were great and on the perfect track the last I had them checked! Thank you for your response!