Frank and I went to see Frank’s doctor a while back. I insisted on accompanying him, because Frank is one of those people who just says, “Yes, doctor, you’re the doctor, whatever you say, doctor. I trust you.” Me? Not so much. See my gluten bigot category for why. Frank was going to the doctor because 1) he was going gluten-free with me, because that makes life around here a lot simpler. No, I did not ask him to do this; he is just that wonderful, and he told me a couple of weeks before my test that he was going to do it. Made the decision all on his own–I told y’all I was married to Mr. Wonderful. This way I won’t have to worry about him glutening me through a kiss, or eating something glutenous with his hands, then sticking his hands in my bag of chips without thinking about it and contaminating the whole bag of chips. Stuff like that. It’s crazy the ways I can get sick on gluten, and how teeny amounts can hurt me in significant ways. And not just for a day. For the future. 2) During my gluten challenge, Frank was eating exactly what I was been eating. Glutenous foods full of gluten, gluten, and more gluten. Pizza, soy sauce, bread containing wheat flour, glutenous ice cream (like Chubby Hubby), na’an, Nacho Cheese Doritos, etc. And get this. He had some gastric symptoms; his acne got a lot worse, just like mine did (and when we were gluten-free for three months December to February, and the only gluten he had was the sandwich and Doritos I sent him for lunch, his acne was so much better); he had heartburn, and one night it was so bad that it kept him up until 3 a.m.; he had fatigue on the days that I had fatigue; his unexplained blistery rash on his hands was back (it’s not DH, the rash associated with celiac, but it is a form of eczema for which doctors have found no cause. No cause? Get back to me after you know what’s going on, docs, and quit screwing around.). And when we got to the doctor’s office for the appointment, guess what we found out? While I was gaining twelve pounds on the three-month gluten challenge? Frank was losing ten! Eating a bunch of fluorescent orange mac-n-cheese! And then Frank said, “Oh yeah. I’ve never been able to gain weight, ever, until you were cooking gluten-free dinners all the time when you were gluten-free during those three months before. And I gained all that weight when you were losing 12 pounds.” Uhhhh. Can’t believe I didn’t pick up on it, but then again, I was a little preoccupied with how awesome I was feeling off gluten and how awful I felt on gluten.
Alright. So I made the case for the doctor to test Frank for celiac, all written out nice and pretty, just in case he’s one of those boneheads like Dr. Ego who won’t test you for anything unless he comes up with it first because he needs to feel important.
And of course, Frank started off things by saying, “My wife has celiac, so I want to get tested for it.” And he left off the part that he had practiced on his own in the car, because it was early and he was tired and going on one only one cup of coffee, the part where he was going to say, “I understand that her having it has no bearing on whether I would have it.” So I just took over. I mean, come on. The doctor was already looking at us like we were stu.pid. I would have been, too. Like he could catch celiac from me through sex. Good thing we didn’t tell him my test results weren’t even in yet. And seriously, the doctor had already taken that one statement as license to treat us like just any ol’ stupid patient who will buy anything you want to sell them off the back of the discount doctor wagon. Or maybe he truly knows nothing about celiac, because he tried to feed us a load of watery diarrhea later about it, so I’m kinda inclined to believe that he knows pretty much nothing about it except that some people get diarrhea from it.
Anyway, after Frank’s statement that he wants to get tested because I have celiac, I told the doctor, “here’s why we want him to get tested. He’s going gluten-free anyway, he has a history of autoimmunes all over his family [and I had listed every single one of them for him], while I was on the gluten challenge and he was eating the same foods I was eating, he had a lot of the same symptoms I did [he probably has no idea what a gluten challenge is, now that I think of it], and while I was gaining twelve pounds gluten-loading, he was losing at least ten.” By the time I got to “autoimmunes,” he had stopped listening, because I had handed him the piece of paper.
“Is this something you looked up on the internet?”
Attention doctors: Y’all just have no idea how patronizing and infuriating this statement is. Well, you probably do, and you say things like this anyway, just to assert that you’re the doctors and we’re the patients. And the thing is, he seemed like a cluelessly nice doctor. Just completely clueless about pretty much everything except coughs and runny noses. But the whole did I look it up on the internet thing? I wanted to punch him. It was so hard for me to keep my voice calm. “No, this isn’t something I looked up on the internet. I’ve been studying the disease for about seven months.” But I am glad he asked me the internet thing before the next part.
“Well, it looks like we should be testing you for Lupus. Do you want me to test you for that?” Ok, so Frank has a second-degree family member with Lupus and a first-degree family member with Lupus antibodies but no Lupus, but he also has very few Lupus symptoms. Other than the fatigue, which he didn’t have until the gluten challenge, and some muscle aches that are easily attributed to all that painting he’s been doing (I have muscle aches, but even I wasn’t saying that Frank’s were possibly a celiac symptom, since his are all in the shoulder area and tend to go away when there’s not a room to paint, hmm), there’s not much there in the way of Lupus. He has no RA, no joint pains, no kidney issues, no heart troubles, no lung problems, no persistent mouth ulcers, no eye problems, no fevers, no chills. He does have that vague symptom of dizziness about two or three times a year, but that is usually right after I’ve been acting crazy, which might stress him out a little, so Frank likes to chalk that one up to stress. He does have vague symptoms occasionally, I’ll give the doctor that one. And I’m never opposed to any bloodwork.
After the Lupus question, I said, “I don’t really know the symptoms of Lupus, but if you think you should test him for that, fine. As long as you’re also testing him for celiac.” At this, Frank said, “Yeah, I just want to make sure I’m tested for celiac. I’m probably going gluten-free anyway, so I just want to get the test before I change the diet.” The doctor probably doesn’t know the arguments for getting tested before changing the diet. There are lots against, of course, but lots for. Most doctors seem to think that you should get the tests before. And actually, last November, I could have told you anything you wanted to know about Lupus, and in the doctor’s office Tuesday, I was just sitting there thinking, I can’t remember all that stuff I used to know about Lupus, but I do know enough about it to understand that a lot of organ systems would be affected, at least after the disease progresses. Even when he has the flu about once a year, it’s gone within a couple of days.
Ok, so Frank jumped onto the doctor table where they listen to all your organs and make sure you’re breathing, and the doctor said jovially (it was good I was a couple feet away), “Well, unless you get explosive, watery diarrhea right after you eat a Quizno’s sub, you probably don’t have celiac, but I’ll test you for it.” DANGEROUS DOCTOR! I made eye contact and made sure that my eyes had a death grip on his eyes. “Actually, a lot of celiacs have no gastric symptoms at all. That is a huge misconception.” And I wanted to tell him that more than 50% of celiacs have no gastric symptoms, but I didn’t want to give him that figure and be wrong about it, so I just went with “a lot.” I hate it when I have to educate doctors, but Dr. Arrogant broke me of that doctors-are-gods creed we all grew up on, and I ain’t nevah lookin’ back.
I was HOT. What if that had been some patient who read something or heard something about celiac and thought, “Maybe that’s me. Maybe that’s the source of my misery.” And Dr. Can’t Tie His Own Shoes is telling her that she has to have explosive, watery diarrhea or she probably doesn’t have celiac? This is why it takes an average of nine years for a celiac diagnosis (sometimes I even hear eleven). NINE. Because dangerous doctors like this guy are out there, and their patients leave with their IBS diagnoses (heavy on the BS) or their “you just have the flu” pep talks and go on their sad, miserable ways. And then three more years pass by, because after all, doctor knows best, and if he says I don’t have it, I don’t have it, but finally, one day, she eats a Quizno’s sub on rye and drinks a Braum’s malt along with it, and while she’s at it, she has bread pudding for dessert. And then she finally has the explosive, watery diarrhea and feels maybe brave enough to go present her case to the doctor again. “But doctor, I got the explosion. I got the water. Out my butt. All there. Whaddaya think?” Even worse, what if it’s someone who’s never heard of the disease, and she just has a bunch of vague symptoms, and there’s Dr. You Have The Flu giving her meds for IBS. BTW, I used to get really ticked off when I would see those bloaty stomach commercials for IBS (yes, I’m quite happy that Zelnorm is off the market). Really ticked off. I mean, a lot of doctors, I’m sure, because I have experience with a lot of dumb doctors, probably just call it IBS and give them the med from the commercial. Here, have a pill! Who cares what’s causing your IBS? As long as we can cover it up! Bandaids are awesome!
From the Celiac Disease Center at Columbia:
The vast majority of individuals with celiac disease have little in the way of gastrointestinal symptoms or have symptoms that may receive a diagnosis of irritable bowel syndrome. While the classical symptoms include diarrhea, weight loss and edema, other patients may present with constipation, anemia, bone pain or bone loss, chronic fatigue, skin problems, abnormal liver chemistries, dental enamel defects and neurological symptoms such as peripheral neuropathy, ataxia or seizures. Some patients with celiac disease are truly asymptomatic or have symptoms related to an associated autoimmune problem.
Anyway, once the doctor decided Frank was breathing and had a heartbeat, he started to write down all the bloodwork he would send Frank for. When he mentioned the celiac test, I threw in, “Do you want to go ahead and send him for the DQ2/DQ8 test while you’re at?” Hey, why not, right? He said, “The what?” Haha. He deserved it. I know that’s gastro territory, but I was mad at him for prolonging celiac diagnoses in unsuspecting individuals. “It’s the genetic marker test for celiac disease.” Not that I have faith in our blood labs around here, but why not. “Oh, ok, sure. What is it again? That’s really gastroenterologist territory [yep] but sure, let’s just send him for everything.” I think Frank was still in the room. Don’t worry, y’all. Before we went to the appointment, I had asked if I could go with him. I also said, “And can I get obstinate in my SarahK kind of way?” “Sure, Sweetie.” “Because you know you’re never gonna see him again anyway, since we’re moving and all that.” “Okay.” I beat him down, I know.
The doc did send him for all the bloodwork, and it all came back normal… However, considering that his symptoms have all but gone away on the GF diet (except for some problems that seem to pop up after he eats soy — we’re testing that one now), and considering that serologic tests are for crap at most blood labs around the country, I think it’s wonderful that he decided (all on his own) to go off gluten when I did. I’m not gonna lie, it’s awesome knowing that there’s very little chance the food he eats will make me sick (I get sick from eating non-glutenous products made in a facility that also processes wheat, I’m that sensitive), he seems to be getting healthier along with me.
In short, I’m glad I went with him to his appointment. And I’m glad I got to school a doctor. Doctors need schooling.