I don’t know when it all began. It was a subtle process. Over the course of a few years, I became someone who always hurt. All over. Real bad. And I had IBS. A lot. Like ‘it’ was never normal. Cramps and pain all the time. An endoscopy confirmed chronic gastritis which I couldn’t seem to get under control. Always with the gnawing in my gut. I’ve always dealt with skin cancers of varying degrees of concern but it started to get worse. I started naming the growths as they took on their own personalities. I have interstitial cystitis (think UTI but 50 times more painful). Then unexplained fevers started. And the fatigue. Like tired to the bone, want to cry all the time, no energy at all – fatigue.
Get ready for this one…
Yes, I went to the doctor. I was thinking hormones, maybe? I’m fifty. Things are changing. I get that and I can roll with it. But this was too much. The gynecologist told me – okay, if you know me, get ready for this one – she told me I was exercising too much and not getting enough calories and that’s why I was fatigued!
Imagine the awkward silence in the room as I waited for her to say, “Bazinga!”
She didn’t. She was serious.
This woman had been treating me for eighteen years…had she learned nothing? I can assure everyone out there that I do not exercise too much and I can confidently say there has never been a time in my life when I have not consumed enough calories. I have problems but that is most definitely not one of them. I will be finding a new gynecologist. Sheesh.
Then on to the internist. A woman, my age, similar place in life whose children went to school with my children. A kindred spirit who was on my side and would surely partner with me to get to the bottom of this. And then…
“It has to be the flu,” she said. The symptoms of being tired, low grade fever, and a teacher. Sure, it makes sense except I’ve felt this way for years.
Still she insisted. Ran the test and – shockingly I did not have the flu for two years straight.
Next step, lots of blood drawn from my very non cooperative veins. We think it might be rheumatoid arthritis! Yippee! I was prescribed medication that helped the joint pain but flared all the stomach issues into a frenzy.
Turns out inflammatory markers were increased but the RA test was negative. So more giant bruises on my arms and hands as the poor nurse struggled to get even more blood from this turnip.
And finally, the kicker. “It’s stress. I think you need to consider seeing a therapist.”
Well, shit. I wasn’t stressed before but now I am!
The effects of stress on the body are real, but…
Let me back up a bit. Yes, I have a fair amount of stress in my life. WE ALL DO! It’s called life and it sucks to varying degrees for everyone. This doctor knows some of what has been happening with my challenging daughter and the stress that her choices have brought on. However, these stressors have existed for almost five years!
I did therapy. A LOT of therapy throughout my life and went back when things got really bad. I’ve found a peace in that I settled into not liking the young adult’s choices but knowing it’s her life, not mine. Her consequences, not mine. I hurt for her and I hate her struggles but I don’t sit around and ruminate over them all the time. I AM DEALING WITH IT!
So to have all these shitty symptoms, that had been creating havoc in my life years, rolled up into the trite comment, “You should consider therapy,” really sent me over the edge.
Enter Dr. Google
By now, I was pissed and frustrated and looking for two new doctors. Because I am who I am, I went to Dr. Google. Yes, I know. Terrible idea. But after hearing that I was exercising too much and was just too darn skinny and in dire need of a therapist…I figured, what do I have to lose?
As I poked around, confirming the various cancers I was certain to have, the horrible immune diseases that were lurking just below the surface, the Ebola I had somehow contracted, I stumbled upon the dumbest, simplest solution.
I turned to Benton and said, “I think I have a wheat allergy. Or intolerance. I don’t think Celiacs, but something like it.”
He was not as impressed with my revelation as I would have hoped and instead suggested the gastroenterologist. Which, to be fair, he had been suggesting for a while.
I committed glutiny
So, I committed glutiny. I did my own experiment and cut all guten from my diet. You would be surprised where that stuff hides. I even found it in a brand of cream cheese! So, Philadelphia has my business for life now.
Of course, it’s in beer. Bummer. But there are gluten free beers out there and some aren’t too bad! Cider and wine are naturally gluten-free so I will survive.
Gluten free bread sucks soooooo bad.
I love dark chocolate and it’s always been my go-to so that still works. Rice is good. Potatoes are good. It’s like a low-carb diet but I can still have carbs! Weird.
Of course, I had moments of doubt because I started to feel better pretty quickly. It all seemed too simple. Even now I make myself go back and read journal entries to remind myself of how bad I did feel. Like the pain of childbirth, it is fading in my memory.
And, yes. I tested the theory. Twice I had a big old sammich on a yummy bun. And I paid a terrible price. Every damn symptom came roaring back with stunning ferocity. Okay, fine. Lesson learned.
I went to the gastroenterologist who made me feel not crazy. It was nice to see a doctor who didn’t accuse me of being too darn healthy or in need of psychiatric care. She listened to my theory. She considered my symptoms. She looked at the results of the blood work that had been so tediously acquired. She confirmed my suspicions.
The ah, ha moment!
She told me the only way to really confirm Celiacs was to start eating gluten again for a month, then test. I chose not to do that. I will not spend any more of my life miserable because of some stupid little protein. She agreed that was a good idea. Recognizing that I am an adult, I know my body and if not eating that makes me feel better, then, um, don’t eat it. She said from everything I told her, while it might not be Celiacs, it is definitely some sort of allergy/intolerance. Like the shellfish allergy I’ve had my whole life. Another protein that I can’t handle.
Sadly though, I have a colonoscopy scheduled for next week. I fell right into that trap…
But she will do a biopsy that will give some more information and will show some markers to potentially narrow down the diagnosis. Either way, I’m fifty so it’s time for that joy anyway.
And, your point is…?
So my point in sharing this annoying story is this…if you feel bad and there seems to be no answer, keep trying and keep looking. It is okay to know yourself and to take an active role in your health. Doctors are very intelligent people but I think the two I saw missed a very simple explanation that was right under their noses. They are human. It can happen. But if it does happen to you, don’t stop. Dig around. Feel better!
And my second point…there are tons of articles and books, written by actual researchers, scientists and doctors, peer reviewed and validated by the medical community, that point to exactly how the wheat plant has changed through the decades. It is extremely likely that the changes in the plant make it less friendly to some folks. Think how a peanut, shellfish, bee sting, citrus, pollen or latex allergy can really mess with people. So can the evolution of the wheat plant.
It is real, folks. It’s taken me six months to truly come to believe something this simple caused so much havoc in my life for so long. Take control of your own health. Dig around. Think outside the box. We are supposed to feel good, pain is not normal, find the root cause and dig it out! Go be healthy! Even if it means committing glutiny!