Sometimes you just have to respect your gut instinct for important decisions. (Pun intended)
Gut Guy (Image: Fast Company)
After about six months of dealing with all of the items on the surefire Celiac diagnostic checklist, I decided to pay a visit to the local gastroenterologist. That was fun. I’ll spare the details, but let’s just say that the local Home Depot was probably sold out of PVC pipe, various random plumbing fittings, and air compressors for quite some time.
After the, umm, therapy, I remember hearing a voice through my drug induced haze. “You have Celiac.” the voice said. “Look it up on the Internet. And always choose the red pill. Have a nice day; you can pay at the front desk.”
So I went home. And Google told me not to eat bread. Or donuts. So I didn’t – and complained about it the whole time. And I stayed sick.
After a couple of months, I began to doubt. What could a local guy know about a (then) rare condition? So the Specialist 2002 World Tour began. I didn’t know it, but apparently I might have had everything from genetic immune deficiency disorders to male pattern baldness. Thank God it didn’t turn out to be male pattern baldness – I don’t think my insurance covers Rogaine.
I’m pretty sure I spent more hours in doctors offices than Bernie Madoff is about to spend in prison – all to no avail. The following (mostly true) conversation pretty well sums up the whole experience.
Highly Compensated Specialist (HCS): “I don’t think you have Celiac disease.”
Me: “Are you sure? This is kind of a big deal for me.”
HCS: “No, but I have a number of Celiac patients and I don’t think you have it. Unfortunately I don’t know what you DO have, so I can’t make a definitive diagnosis until I do.”
Me: “You have a wonderful gift of inspiring confidence. How will you go about finding out what I DO have?”
HCS: “We’re going to keep running tests. And I am going to think extra special hard on your case. You might as well go back on a regular diet. I don’t see any harm in that.
Me: (What I wish I actually said, but I wimped out and only thought it) “Except that I might DIE!!!”
HCS: “Well that certainly is a risk we’re taking.”
Me: “We???”
Moral of the story: Trust your gut. Literally. Don’t keep eating the same stuff if you don’t feel better.
It turns out the local guy was right after all. Granted, he didn’t do me any favors with helping me deal with Celiac, but then again, he beat all the Highly Compensated Specialists. I hear he will be on Jeopardy next week.
Photo: Fast Company
After an 18 month adventure through the catacombs of the medical system, I was formally diagnosed with Celiac Disease. The bright side of that journey is that I know 3,712 nasty and horrible conditions that I do NOT have. 
I actually gave up on asking Drs about my gut problems. No one seemed to think it mattered that I had been having diarrhea for years. I talked to my PCP, a couple chiropractors (I figured maybe, since they come from a different view point, they might listen)a couple neurologists, hey maybe it’s a nerve problem, I do have back and neck problems…Honestly, it took a while to finally admit out loud that the vast majority of the time I don’t have normal bowel movements. I wasn’t exactly hoping for these conversations. Then they were brushed aside. I figured, hey if the doctors don’t think it’s a big deal, maybe I shouldn’t either. WRONG! Last year I started running into Celiac sufferers like Scooby & Shaggy run into mysteries! After experiencing a number of these run-ins I decided, just for the fun of it, I’d try not to eat Gluten. I felt better after one day, I felt about 14 after a week (I’m 40). Of course, I decided it was a coincidence and went back to my old way of eating. I felt sick in less than a day and felt 95 in less than a week. Tried avoiding gluten and darned if I didn’t feel better within a day. I’ve been increasingly gluten-free since then, about three months. You’re right, I have poisoned myself more than a few times. I have become a label reader and am now even learning some of the trickier ingredients. I have also had the frustration of eating a seemingly safe food and getting really sick. I was doubting myself but after reading this article I guess maybe I should just “trust my gut.” Thanks for sharing your thoughts and experiences.
You bring up a great point – it’s the tricky stuff that will get you. Avoiding all the bread in the world means nothing if you keep getting exposed with the hidden gluten sources. Nothing drives me more insane that foods loosely referred to as gluten free that are produced on the same equipment as gluteninated foods. Vendor claims of “good cleaning practices” between food batches has never really worked for me. I still get sick. Keep the faith, and never stop looking for the hidden sources! I am a huge fan of the Clan Thompson Food and Drug databases – mainly because they provide lot’s of additional information. They will list foods that are “Gluten Free” from an ingredients perspective, but they will also tell you if the food is made in a shared facility. Highly recommended and well worth the money!
Hi Cheri – I meant to post this link as it might provide a bit of helpful information on cross contamination risks: http://www.celiacbites.com/2009/07/my-gluten-detection-superpower.html