Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Intestinal Growling (Part 2)

klcarne30
 Share

Recommended Posts

klcarne30 Rookie
klcarne30
Posted

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!

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


RMJ Mentor
RMJ
Posted

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 Rookie
klcarne30
Posted
  • Author

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!

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,025
    • Most Online (within 30 mins)
      7,748
    Captain173
    Newest Member
    Captain173
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • StaciField
      My bone structure is disintegrating and I’m having to have my teeth removed

      By StaciField · Posted

      I am so scared of going to my doctor because she didn’t give me any information on my condition just saying remove gluten. I have a number of things that relate to coeliac disease but the doctor never picked up on it years ago when I was questioning my health.
    • StaciField
      My bone structure is disintegrating and I’m having to have my teeth removed

      By StaciField · Posted

      I was diagnosed with coeliac disease about 8 months ago. I have been on a gluten free diet since then but I am still struggling with symptoms.  My bones hurt all over my body, my hips and elbows especially. My arms are tingling a lot and feeling numb.
    • trents
      My bone structure is disintegrating and I’m having to have my teeth removed

      By trents · Posted

      Welcome to the forum, @StaciField! That is a question for a dental professional. But let's get some background info from you in relation to things we are more qualified to give input about. Have you been diagnosed with celiac disease? If so, are you consistent in gluten free eating?  If you haven't been checked for celiac disease, you certainly should be as mineral depletion of the bones is a common symptom of the condition. Celiac disease results in vitamin and mineral malabsorption.
    • StaciField
      My bone structure is disintegrating and I’m having to have my teeth removed

      By StaciField · Posted

      I had an ex ray yesterday and I was told that my bones in my jaw were broken and falling away. I have 2 front bottom teeth that are wiggling and I have to take them out. I am so scared of this as I have more broken teeth that I’m wanting removed. If I have them removed would I be able to get false teeth if I have a bone problem?? 
    • trents
      Son recently got diagnosed with Celiac disease

      By trents · Posted

      Welcome to the forum, @ShRa! First of all, celiac disease is not a food allergy. It is an autoimmune disorder. That is, the ingestion of gluten triggers the body's immune system to attack it's own tissues, primarily the tissues that line the small intestine. This causes inflammation. This inflammation produces certain antibodies that can be detected by serum testing. Over time, the inflammation damages the lining of the small intestine and compromises the efficiency of nutrient absorption since the small intestine (aka, small bowel) is the part of the intestinal track where essentially all of the nutrition in the food we eat is absorbed. Gluten is a protein found in three grains: wheat, barley and rye. In people with celiac disease, the immune system mistakes gluten as an invader. Two factors have to be present to develop active celiac disease. The first is the genetic potential. Two genes (and their variants), HLA-DQ2 and HLA-DQ8, have been tied to celiac disease. About 40% of the population has 1 or both of these genes but only about 1% of the population develops active celiac disease. That means there is a second factor that must come into play to turn the genes on such that they become active in producing celiac disease. This second factor is not well understood but it is thought to involve some kind of stress event. For example, a viral infection or other acute illness or even prolonged psychological/emotional distress. Apparently, for most with the genetic potential for celiac disease, this never happens. Your son has been diagnosed as a celiac via serum antibody testing. Normally, there is a second stage of testing involving an endoscopy with biopsy of the small bowel lining to microscopically check for damage. This second stage procedure is considered the gold standard of celiac disease diagnosis but is sometimes dispensed with if the serum antibody scores are quite high. Your son's tTG Ab-IGA score apparently qualifies for this in your PCP's opinion. The "normal" IGA (aka, "total IGA") score simply means he is not IGA deficient and is not a test for celiac disease per se. In the case of IGA deficiency, the tTG Ab-IGA score can present as a false negative. Since his total IGA is normal this is not an issue. The other celiac antibody test done was the Gliadin DGP Ab IgA and it was normal. Do not be concerned that one antibody test was high positive and the other was normal. This is typical. The tTG Ab-IGA is the most important one and the one test most ordered by doctors when checking for celiac disease. One concern I have going forward is the instruction from your PCP to have your son stop eating gluten before he sees the specialist. If the specialist wants to do an endoscopy with biopsy and a good amount of time elapses before that procedure happens, going gluten free now might allow for enough healing of the small bowel lining to invalidate the biopsy results. Kids heal fast! I would consider holding off on going gluten free unless your son's health is clearly in immediate danger by not doing so. I am linking two articles that might be helpful in. One is an overview of celiac serum antibody testing. The other is a primer for getting a handle on eating gluten free.  
×
×
  • Create New...