Severe abdominal distension

[CarolineJo]

Hi everybody,

I’ve been reading this forum for a while now and I think I’m finally ready to made a post.

When I was a kid, I had a tummy ache and had to use the bathroom (if you know what I mean) every single day, but that was eventually attributed to my anxiety disorder. However, my mother was diagnosed with celiac disease after she got colon cancer in 1994. She was severely allergic—a single crumb of gluten and she’d be vomiting for days. But of course she didn’t have any major symptoms prior to the cancer in her early 40s.

I am about to turn 33 and for the past decade or so I’ve had such severe bloating that I get asked if I’m pregnant (not a chance since I’m a female married to a female with no infidelity!). If my anxiety acts up and makes me nauseated, I won’t eat for a few days and my stomach will be flat as a board. A single, small meal and I’m bloated up again.

I’ve also had mysterious stomach cramps that pop up about once a year or so—they are so painful that I vomit, can’t speak or do anything but focus on breathing through the pain, and I swear profusely during these episodes. I’ve gone to the ER, who told me to talk to my primary care physician, and my primary care physician says to go to the ER.

I sought out a gastroenterologist on my own, told him about my symptoms, and asked for an endoscopy/biopsy to check for celiac disease. He said I was “gassy” but he didn’t really see anything. I asked him what could be causing such severe bloating and intense episodes of pain, and he basically shrugged his shoulders and told me to do some crunches if I didn’t like how my stomach looks.

I’ve also had severe constipation for years—enemas and even colonoscopy preps don’t seem to work for me, but on the off chance that they do, my tummy is flat again.

I can only wear leggings and loose sweaters and this is really getting me down. Nobody seems to believe me or take my symptoms seriously except my wife. I’ve just started on a gluten-free diet and set up an appointment with a new primary care doctor and will take it from there, but I’m feelinf very discouraged that I’m eating gluten-free (thank you mom for teaching me how to do this!) but I’m still super bloated. My wife says to give it time and see how the diet works.

My mother had chemo during her colon cancer, and the radiation from that treatment caused her to get pancreatic cancer in her 50s. She died at 56, and I’m scared that every doctor turning me away and dismissing my concerns is leading me down the same path since the disease is highly genetic. I realize “gluten-free” has become a health food fad, but I’m pretty educated on celiac disease, thanks to my mom. I need someone to take my concerns about it seriously. They dismiss my complaints as symptoms of my mental illness, but I’m not aware of any mental illness that requires maternity pants. Oh, yeah—my whole body is super skinny except for my tummy. My legs need a size 2 pant but my tummy needs a size 8. My arms and breasts need a size small but my tummy needs a size XL. I’m at my wits end. I need advice on how to proceed. I’ve met my new doctor once and she seems very attentive and understanding, but possibly too young and new to the practice to be fully educated on celiac. I can’t afford a specialist—I’ve already filed for medical bankruptcy.

I just want someone to tell me if this sound like celiac disease and if I can ever lose this belly that is causing me to have severe body image issues. I cry about it all the time, but no one believes it’s there because I wear loose sweaters so they think I’m skinny. Please help.

[CarolineJo]

I SWEAT profusely, not swear. Though I’d probably swear if it weren’t so darned painful!

[Jmg]

Hi and welcome

As the child of a celiac you should've been tested. And indeed when you mention here:

2 hours ago, CarolineJo said:

I sought out a gastroenterologist on my own, told him about my symptoms, and asked for an endoscopy/biopsy to check for celiac disease. He said I was “gassy” but he didn’t really see anything.

He presumably tested your blood for celiac antibodies prior to the scope? What were the results? Did he take biopsies? Celiac damage cant neccesarily be seen by the naked eye. 

2 hours ago, CarolineJo said:

’ve just started on a gluten-free diet and set up an appointment with a new primary care doctor and will take it from there, but I’m feelinf very discouraged that I’m eating gluten-free (thank you mom for teaching me how to do this!) but I’m still super bloated.

Ok, so you probably know but going gluten free will make testing difficult. So if you're still pursuing a diagnosis you'd be better off on gluten till testing is complete. 

Having said that, if you're through with doctors and just after a solution then there's no harm in trialling the diet. You may want to keep a food journal. Note what you eat, when, and any symptoms, level of bloating, stomach cramps etc.  With your close family history of celiac it could be gluten, could be you don't test positive but still have a problem (like me!) or it could be something completely different. Fodmaps, Dairy or another food intolerance:

Open Original Shared Link

Open Original Shared Link

The food journal could help you either way.  You could measure your stomach each day and take a note of it.  You can try an elimination diet, removing one particular food, say dairy, and seeing what impact that has, then reintroducing. Then if you see a difference you may have an answer?

Best of luck!

Matt