Irreverent solutions to your real life allergy & sensitivity dramas – Fall 2017
I don’t have celiac disease but I feel like I have celiac disease—or maybe something worse. I have no idea because I’m not getting any answers from my doctor. I’ve been having stomach pain, joint pain, constipation sometimes and diarrhea sometimes and nausea a lot of the time for going on two years and nothing seems to make it go away for any significant amount of time. I’ve also just gained about 20 pounds, which is not making me feel any better. I’ve been going through the rigmarole of going to my doctor’s office non-stop with nothing to show for it. The last time I was there, he told me I needed to see a psychiatrist!
I had the screening for celiac and have no indicators, so I did not have the biopsy. There are some autoimmune diseases in my family and I know that the incidence of celiac is on the rise. Maybe the blood test is missing something. Is it possible my doctor is wrong? How can I find out what’s going on with my body? I’m feeling so desperate and angry. Maybe I should just go see a psychiatrist.
I’m not going to be able to diagnose you, of course, but I can certainly commiserate, as can thousands of others in similar circumstances. I always say I was lucky to get violently ill pretty quickly. The extreme nature of my symptoms put me in the hospital and into a whole system of care that led to my celiac diagnosis and put me on my way to better (mostly) health within a few months. But most people who are dealing with autoimmune diseases don’t have that experience. And honestly, there are still some questions I have about my own autoimmune issues that I haven’t found answers to yet.
Modern medicine is wonderful and general practitioners do the best they can—but they’re not infallible. Many GPs are unable to connect the dots when a multi-symptomatic patient walks in the door. It’s time to consult the medical specialists who focus on autoimmune diseases. To start, you should be thoroughly examined by a gastroenterologist and a rheumatologist and undergo blood tests to check for a thyroid disorder and other autoimmune diseases. Please push for this. You need a diagnosis or at least a clear picture of what’s harming you. The fact that you don’t know what’s going on is a big frustration.
While you set up the referrals to get appointments with medical specialists, do yourself a favor and consult an excellent dietitian. Even if the source of your illness doesn’t turn out to be gluten or diet-related, a dietitian can advise you on food to eat to make you the healthiest and to reduce inflammation. She might also have some recommendations for a physician who will take you seriously and not leave you feeling like you’re the crazy one.
All that being said, there’s one more thing—and it’s very important: Look into a condition known as non-celiac gluten sensitivity. People with NCGS have persistent celiac-like symptoms—stomach pain, digestive issues, achy joints, migraines, sinus problems, etc.—but they test negative for celiac disease. These people do very well when they remove gluten from their diet.
Belly Ache Fake
My teenage son has a history of complaining when he doesn’t want to go somewhere, which is usually church, school and his grandmother’s house—you get the idea. Recently he’s been complaining a lot about stomach pain. I have celiac disease and have been gluten-free since he was a baby. I had him tested when he went through a particularly skinny period as a tween and he didn’t have any of the markers.
I’ve honestly never worried about it—well, I’m a mom so “never” is probably too strong of a word. I’m the one who always cooks for him and our house is gluten-free. I’ve always packed his lunch and he rarely eats gluten, only if he’s at someone else’s house or out with friends. Of course, now that he’s 17, he’s spending a lot more time away from home and dining elsewhere, so he’s probably consuming more gluten than he ever has before. That could be making him sick if he does have celiac.
Still, I’m very suspicious since his complaints seem timed to those moments we’re trying to get everyone out the door to school or church or another family activity. Is he just being a teenager? Am I overreacting or under-reacting?
Congratulations on raising a child until almost adult age. I have two younger ones and some days I wonder if this is the day I snap, screaming, “Not one more Taylor Swift/Zayn song in my house!” —and drive away forever.
Yes, we’ve all seen kids fake the stomachache in an attempt to get out of school/homework/boring adult events. It works so well because we’re terrified of children throwing up all over us or the brand new sectional. Your mom radar about faking may be right about this one. There are a few things you report, however, that make me wonder if your son’s complaints aren’t legit.
Since you’re celiac and you say you only cook gluten-free, I wonder if his blood test was accurate when he was a tween. If he wasn’t eating enough gluten for a long enough time period before his test, he would not show the markers that indicate he has celiac disease. I suggest you revisit this test and make sure the physician ordering the test is clear on this and understands that a certain level of gluten exposure is necessary before testing.
Now that your teen is mobile and not eating mom-approved breakfast, lunch and dinner, it’s possible he’s getting sufficient gluten exposure to make him sick. It would be great for you all to find out before he turns 18 and moves out or goes away to college and is on his own, meal-wise.
I understand your skepticism. However, why not have him continue eating gluten and have him tested again for celiac disease? The best case scenario is you find out he is faking and he can never use that lame excuse on you again!
April Peveteaux (glutenismybitch.com) is author of Gluten Is My B*tch: Rants, Recipes and Ridiculousness for the Gluten-Free (Stewart, Tabori & Chang), The Gluten Free Cheat Sheet (Penguin Group) and, Bake Sales Are My B*tch (Rodale).