So, I've been on this epic search for a gastroenterologist. I had one a couple of years ago that was...ok, but she didn't really listen when I was talking about the gastro issues I was having. All she wanted to talk about was my first EGD/Colonoscopy and how I need to take Pepcid every day. (I didn't want to do that. I'd take it temporarily to ease the damage from the GERD they found, but I wanted a longer term solution that did not involve medications.) Her solution? "I don't know, figure out your GERD triggers" with a shrug.
Cool. No information about how I can go about doing that? SUPER HELPFUL.
So I just carried on with my life. Had a couple of colonoscopies over a couple of years, then this year I was due for another EGD/Colonoscopy because I'm supposed to get a colonoscopy annually, and an EGD every three. Except, I couldn't get in. I started trying to get one scheduled in May, and they were booking out a full year no matter how many times I said I was due in October.
Then July and September happened. Multiple ED visits. No answers. I finally got in with my PCP and she was like "We need to get you into a gastro right away." They were able to fit me in quickly!
Then the gastro just talked at me and the end result was the same: Shrugging with a side of "Just figure out your triggers."
What are GERD triggers? I know how to tell if something triggers it, but do I eliminate all GERD triggers at once? One at a time? What the fuck am I supposed to do with that? She had no answers. She was also more irreverent with me than I'm comfortable with when I'm meeting with a doctor for the first time, so no thanks. BUT she ordered the EGD/Colonoscopy that I'd been trying to get since June. I couldn't get in with MGH until Christmas Eve and I was suffering, so hard no for that. I was able to get in with another practice in October.
The only word that comes to mind when I think about the results I was given?
Yikes.
Barrett's Esophagus. Multiple ulcers. Damage from GERD. Colonoscopy was the best one yet though! And, I got pretty teary when the doctor was giving me the results because I finally had answers. Everything I'd been going through since July, I finally could point at the cause.
So I tried to get these results back to my regular gastro, and it was the biggest shit show I've ever experienced. There was no communication, no coordination, nothing. At that point, I was like "That's the ballgame. Time to try someone different." So I talked to my PCP and after four weeks of wrangling, I was able to get into the MGH network for a new gastro. (I was told that the gastro that I saw originally was in the MGH network, then I was told she wasn't then I was told that she was and then I was told that she wasn't again. MGH is going through a thing right now and they're super disorganized. A merger of some kind I'm told, but regardless. My frustration was unending.)
So! I went to this new gastro last week. Wearing this shirt. I've been waiting my entire life for this moment.
Let's be real. This was the true test. If she laughed at this shirt, she was my new gastro. Screw answers. She needed to have a sense of humor. I don't know how she wouldn't, talking about literal poop all day. (Some really don't!)
She came in, took one look at me, and cracked up laughing.
Then she talked to me about IBS. Key points:
1. I probably have it, and if it's not IBS, then it's Ulcerative Colitis
2. I'm to go on the FODMAPS diet for three months and then start to reincorporate things
3. It's very likely dairy so I should start eliminating that immediately even though I'll otherwise be eating normally the first week of it to see how things go
4. (And this is the big one) It can cause a false positive on a celiac test.
All of my celiac biopsies have come back negative. You know why? I'm supposed to be eating gluten for eight weeks before it and I've been very strictly gluten free for the past five and a half years. So, the alternative? Another blood test. "It's more sensitive than the biopsy, so you don't have to be eating gluten for weeks before it and it'll pick it up even if you have a small amount, which everyone does."
Cool cool cool.
The celiac tests were negative.
Every single one.
I was at a training when the test results came in. Lunch was like a half hour later.
You bet your ass I devoured a sandwich. I absolutely destroyed that thing and also had a shitload of pasta salad. If I could have just taken the whole bowl of it and poured it into my mouth, I would have.
You know what I had for breakfast yesterday?
Overnight oats.
ACTUAL OATS. REAL ONES.
DO YOU KNOW HOW MUCH I MISSED OATMEAL.
So, ALSO, I'm already starting to feel better, day four of being dairy free. I had a bagel yesterday, but I took a lactaid pill before I ate it, and I seemed to do ok with that, actually.
If I can eat gluten, I'll be ok. I've tried gluten-dairy-egg free before and it does not go well. There are tantrums involved. Big ones.
I'm also relieved, because I cannot, cannot, cannot do low-FODMAPS and be oat-free at the same time. I'm sure it's possible, but I'd decided that it's not.
Is going dairy-free (and quite possibly onion and/or garlic-free) for the long term the answer I wanted? Sure isn't. But if I can manage gluten-free for five and a half years, I can manage dairy-free, especially since there are pills out there to help so if I decide I want to cheat, I can without major consequences.
Stay tuned for FODMAPS shenanigans - there are sure to be some! For now, I am going to basically go knit until my hands fall off.
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