Finding doctors who take celiac seriously, looking for opinions.
Hey! So for some back story, I (22f) have struggled with chronic severe constipation my whole life. For the longest time I thought it was normal, my mom was always secretive about that stuff so I grew up thinking oh girls don’t poop lol! When I say severe, I would go weeks & weeks. In college is when I started to be concerned of bowel movements as a former roommate was studying nutrition. This year, I had an emergency situation with my constipation that required an ER visit and I won’t go into the details.
Due to my circumstances and insurance, I wasn’t able to receive proper care from a doctor long story short (military) and I was doing a lot of self research.
I ended up having a miscarriage in December that wrecked me and caused a lot of trauma. Shortly after this timeframe, I started developing insane abdominal pain, bloating, joint pain, and fatigue associated after eating meals.
I ended up self diagnosing myself basically with IBS-C so I tried the LOWFODMAP diet to gather information to give to my doctor. I have since moved since college & now in a location I can receive care but even that took forever to organize.
I tried the LOWFODMAP diet as I had assumed my problem was onion, garlic, or cheese.
I cut out gluten but was eating sourdough and my problems never went away. The pain would get slightly better but I would eat a bland sourdough sandwich and feel the consequences.
So, I fully cut out gluten. I was being super careful & 48 hours after cutting out gluten my bowel movements went to normal & I literally lost 10 pounds of straight poop. TMI apologies.
I had basically pinpointed my issue with gluten. I ended up going to a semi fast food restaurant that handled my lettuce with unchanged gloves & I got super ill about 20-30 minutes later.
The pain associated with gluten exposure is a very specific pain, it’s not just a belly ache. It feels like my stomach is being pumped with air where my belly just inflated and there’s not way to get the air out and no way to suck it in & all at the same time someone is twisting and pulling my intestines. Which develops into tight and severe joint pain which makes it hard to walk. Followed by fatigue that almost feels like the flu where I can’t get out of bed.
So the pain definitely sticks out like a sore thumb where I know I don’t just have a belly ache from eating too much / too fast or something like food poisoning.
I was finally able to see my new primary care who told me this was normal, I didn’t mention being concerned of celiac. But she told me gluten is an inflammatory & these symptoms were normal. She also stated that she wasn’t going to test me for celiac as she has only had 1 patient with true celiac and it is extremely rare. I asked her if I should stop eating gluten & she said yes.
My roommate has severe symptomatic celiac, developed in her 20’s & told me that that is contradicting because technically people with gluten intolerances can eat small amounts of gluten. Neither myself or my roommate are doctors so I took that with a grain of salt.
But my doctor tested me for my thyroid, for autoimmune (lupus) & rheumatoid arthritis all came back negative.
After my appointment, I got Italian ice from a supposed to be allergen friendly location & found a crumb of graham cracker. I panicked but I pulled out the piece & kept eating because I was thinking oh well I don’t have celiac. About 20-30 minutes later I got sick.
So, I took a muscle relaxer to fall asleep & my doctor said that was fine to continue if I get glutened.
My mom is frustrated with me because she thinks I should trust the medical professionals but I am wondering if I should give up trying to get answers or just go with it.
I’ve been telling restaurants I have celiac because if it’s just an intolerance that don’t take the same precautions & I feel like I’m lying - which I am. But I’m so frustrated!!!