Nearly five years of health-related nonsense left me depressed, anxious, over-tired, over-weight, and feeling defeated. Until I shared a glass (or two) with my girlfriends and they insisted that I not give up. I didn’t. And that’s how I finally found out what was actually wrong.
It was one of those four thousand snowy days in New Jersey, where the kids were off from school for the second day in a row and I was getting some serious cabin fever. The roads were still a mess and too icy to go anywhere, but I needed company. “Cabin Fever Cocktails?” I texted my neighborhood girlfriends, all in walking distance of my front door. “OMG YES” they texted back, and at 5 p.m. on the dot, my winter emotional rescue team walked in. My grandmother used to have a cake in the kitchen for anyone who might stop by and share a cup of coffee. I, apparently, always have bubblies on hand, and we popped open a couple bottles and sat around with our feet tucked and caught up with life. Maybe it was the cozy fire, maybe it was too much self-reflection after 48 hours of being cooped up, maybe it was just the vibe of the room of supportive and caring people, but I finally confessed to my (skinny, fit and fabulous) friends how frustrated I was that I was having such a hard time losing weight, and feeling crummy in general.
Weight has been an up and down thing for me my whole life. Puberty and middle school was an awesome time of growing sideways first, then sprouting taller and leaner. College freshman fifteen, up, down. Pregnancy did not make me a baby-bump glowing human – I gained just as much weight in my butt as I did in my belly. I used to say it was nature’s way of making sure I wouldn’t tip over. Baby weight on, baby weight off. Up. Down. By the time the pounds had started creeping on in my late thirties, I blamed age and a lack of time to exercise, and decided to make some lifestyle changes, really try and take care of myself once and for all. Then I tried some fun anti-anxiety meds, which packed on 50 pounds in six months. I wasn’t anxious – because I was a zombie. I stopped the meds but couldn’t get rid of the pounds. For the last two years I had been really trying, seriously trying, to little avail.
“I just feel like I’m stuck – like if the answer really is that it’s just that hard to lose weight when you’re older I get it, but this is ridiculous,” I told the ladies. “What have you been doing?” they asked, wanting to listen, wanting to understand, the way good girlfriends do. I explained how I had joined a gym in the fall, and had been seeing a trainer three times a week for an hour at a time, and was on the Peloton bike one or two times in addition to that. I explained how I had joined a meal delivery service and was eating 1300 calories a day. How I read an article that said sleep was important for weight loss so I was maniacal about sleep health and sleep hygiene and was getting eight hours a night and had started using essential oils so I would have better sleep and despite all of this, I hadn’t seen a difference on the scale.
“That’s not normal.”
“You’re working too hard for there not to be success.”
I’d never been so glad to have other people tell me there was something wrong with me. That’s how I’d been feeling too. A couple of years of raised eyebrows, and a serious six months of WTF?
They asked me more questions. Was I seriously not sweating sitting so close to the fire? Nope. I was usually chilly. My feet were always cold. I wore socks to bed every night. I had rosacea that started in the fall as well – my whole life I’d always had great skin and now this was a new awful WTF thing. They asked about my poop, periods, pimples, all the good things that good girlfriends want to know.
“That’s too many things. I think it’s auto-immune,” Marni said. Amy agreed. “Could be thyroid. You know that stuff runs in threes too, right? You could have a bunch of things going on at the same time.” Mandy nodded. “Your body is acting like it’s starving to death, it’s holding on to every ounce of fat it can.” “You’re working so hard, there should be results with all that work!” Chris exclaimed. “Go see my doctor,” said Kristen, “he’s a functional medicine doctor. He’s like a detective. He doesn’t take insurance but he’s worth it.” And then we drank some more champagne and complained about our kids and families and parents and spouses and dogs. And I felt so much better, because of all of it.
I decided to go see my primary doctor again. She’s a general practioner, and I’ve always liked her. Plus, she takes insurance, so for $25 maybe I could get her to order me a blood test to check my thyroid and I could find out what was wrong and get a magic thyroid pill and be skinny. Right, skinny and healthy. But really what I was focused on was wanting to be skinny again instead of feeling like I was trapped in a fat suit. Dr. M saw me the next day. She came in and was friendly and curious why I was there. I’m either super healthy, or super not healthy. I won’t need to talk to a doctor for three years and then I’ll get bronchitis and cough and break a rib. Or get bitten by a neighbor’s dog that leaves teeth marks around my arm and requires a tetanus booster, just to be safe. You know, fun stuff like that.
I explained why I was there. How frustrated I was that I wasn’t losing weight, and that I’d been anxious and depressed and exhausted and generally having a hard time.
“What are you eating?” she asked. And I explained about the meal delivery plan and how I’d been following it for six months and wasn’t having success.
“Are you really only eating 1300 calories a day?” Dr. M asked me. “Well, mostly,” I said. “If I get really hungry I might eat an apple or some almonds,” I confessed. Dr. M nodded. “Yup. That’s your problem. An apple is too much. You should never eat a whole apple. A THIRD of an apple. That’s a snack,” she told me. “Look at me,” she said, and I did. She might be four foot eleven and I doubt she weighs triple digits. She’s super cute and super little. “I eat nothing – that’s how I stay looking like this.”
I bit my tongue. I think my skeleton (or left boob) might weigh more than her full corporal form. “Do you really think that a whole apple instead of a third of an apple is my problem though? My girlfriends suggested I might have a thyroid issue?” She started writing out a blood work form. “We can test you for thyroid. You only need Free T4, I don’t need to test you for T3.” I tried to remember what Amy had said about the full panel of thyroid testing, but I was feeling fat and badly about my existence and all of a sudden lost my ability to ask questions or advocate for myself. In the six minutes Dr. M had spent with me in the exam room I went from thinking about my written list of symptoms to wondering if I could survive on a third of a piece of fruit. She handed me the lab form. “If you want to talk to me about a gastric sleeve we can have that conversation. I’m not against that,” and she walked out of the room.
A gastric sleeve?
OMG. Was everyone looking at me and thinking “Jesus, she needs to get her stomach stapled, what is her problem?” and I was thinking I was fat, but like in a just a little fat kind of way? I thought about my half-hearted joke that I needed fatter friends, like Chubby Checkers, how I went to Disney World and felt skinny and was so glad I wasn’t on a jazzy scooter. Was I one giant turkey leg and a big gulp away from needing electric transport to roll my fat ass through life?
I had my blood drawn at the lime green lab of lost souls down the hall and walked outside. I called my sister from the car.
“I need to ask you something and I need you to be completely honest with me. Because if you are lying to me you are not helping me and I need the truth from you right now,” I started out, not even saying hello.
“Okay…..” she said. “I can do that.”
“Do I need gastric bypass? Are you all looking at me and talking about how morbidly obese I am and not telling me? Because I just saw my doctor…” and I spilled my guts on the whole thing. My sister was furious. “If you tell me where she lives, I will egg her house,” she said. “She didn’t listen to you. She isn’t trying to help you. She’s blaming you. This is not what you need. Go to another doctor.”
So I did. I called Kristen’s doctor who didn’t take insurance. I had my first test results from Dr. M by the time I went to see him. Thyroid T4 or whatever was normal. No further follow up requested. I wondered if there were giant GMO apples I could buy.
I told Dr. Z “I was on the phone with my sister this morning on my way here and she was glad I was coming to talk to you. She said she didn’t want to sound mean but that I’m kind of a bit of a mess right now.” Dr. Z smiled. “What does your sister want me to know about you?” And I went through my story again. Dr. Z listened and asked questions. For an HOUR. We talked about how I’m tired ALL THE TIME. We talked about my weight gain and inability to lose pounds, my restrictive calories, working out with a trainer (who also said I should see a doctor and get my blood checked, because even SHE thought I should be more successful than was my reality), we talked about my depression, anxiety, rosacea skin, my tendency to complain and then make jokes, my blog, my kids, my dogs, my parents and my childhood, my vitamins, my husband and marriage, and how I love to travel. After an hour, Dr. Z asked if he could do an exam, and then we talked again. We did a fasting blood draw and he explained that the last test I had wasn’t “as complete” as what he would be ordering. “I can’t tell you much right now,” he said, “we’ll need to see what’s going on with the blood work, but I think something is definitely out of balance. We’ll get you back on that path where you want to be.”
Dr. Z emailed me the blood work results a couple weeks later. The first test packet came from my typical lab of despair and had a bunch of the usual stuff, some I recognized. Others I did not. I did recognize that my once-perfect cholesterol was no longer perfect. I sent my mom a text thanking her for our crummy family DNA. I am snarky that way. Thankfully my mom puts up with me. Then I read the second test packet, something called a “Custom NutriQuant Panel” and read the first item, Arsenic. It was high, like out of range high. I called my sister. Obviously I was being poisoned by my husband and someone needed to know, so when I wound up dead the police would be pointed in the right direction. “I don’t think that’s how he’d kill you,” my sister told me. “I think he’d find something more modern. Arsenic is so old-fashioned. Unless he’s a time traveler, I don’t think that’s it.” My sister can be so logical. She didn’t argue that my husband wouldn’t kill me. She just thought he would find a more efficient and modern way to do it. “What’s the rest of the test say?” she asked. “I don’t know.” I said. “There’s stuff all over the place. I’m supposed to call the doctor.” “And you called me instead?” my sister asked. “Cool. Go call the doctor.”
So I called Dr. Z. “Which page do you have in front of you?” he asked. “Arsenic!” I declared. “I already told my sister my husband is trying to kill me,” I explained to him. “Mm, well that might be true, but, I wouldn’t worry too much about the arsenic. It could be that you eat a lot of rice or had some fish with some higher arsenic levels. It’s not worth worrying about that but we can retest it again just to check if that would make you feel better.” I sniffed. I was glad everyone was taking my husband potentially poisoning me seriously. We talked about my Vitamin B12 being low, my Vitamin D being low, even a weird level for Copper was low. I didn’t even know the body needed Copper. Was I going to turn green like the Statue of Liberty? “I’m so confused,” I said. “I take a multi vitamin every day with 1667% of Vitamin B12. And for Vitamin D I take 4000IU every morning. How on earth am I still so low?” And Dr. Z told me. “All of these things are probably testing low because your body isn’t able to absorb them. If you turn the page you’ll see you tested positive for Celiacs. You’re malnourished in several areas.”
Celiacs? Malnourished? This was a cosmic joke. Why couldn’t I get skinny person Celiacs? How on earth did I get fat from being malnourished?
I had been so fixated on my arsenic poisoning that I hadn’t bothered to look up most of the other stuff on the test. I had been tested for Celiacs ten years ago when my daughter was first diagnosed with it. I was negative then. I was positive now. Was the test ten years ago wrong? Apparently the negative tests are only correct 71% of the time. Or had the Celiacs just turned on at some point in the last few years? I have no way of knowing. Part of fun and funky thing about autoimmune diseases like Celiacs is that they can activate at any point in life. Katie and I had zero similarities in terms of symptoms. She was nearly two when she was diagnosed, and her pediatrician suggested that we test her because Katie had fallen off the growth chart. She was tiny, hovering near that “failure to thrive” mark. Within 6 months of a gluten-free diet, Katie was growing and thriving and her blood work was back to perfect. All the blood testing helped lay the foundation for her fear of needles, but that’s another story.
My symptoms were different, but apparently not atypical at all. The unfortunate thing is that most doctors think of a “celiac look”, and test people who are really skinny and little. But, according to research, a full 39% of celiac patients are overweight, with 30% actually obese. Malnourished vitamin and mineral-deprived bodies become super efficient at holding on to excess fat. They can get a gastric sleeve, eat a third of an apple a day, and their body will still recognize malnourishment as starvation. I’m convinced that undiagnosed Celiacs is part of the obesity problem in America. Yes, there are some facts and studies that support that. Mostly I just think these things in my own head and have little actual medical knowledge, but I’m totally ok with that.
At the end of the day, I will miss good New York / Northern New Jersey bagels, croissants and crusty bread in Paris, and Carvel ice cream crunchies. But I will not miss my body attacking itself, holding onto excess weight, and feeling exhausted all the time because I can’t maintain needed vitamin and mineral levels. I want my body back in balance, and I want to feel good again. Is a celiacs diagnosis going to cure all my life problems? Maybe. Maybe not. I still have that whole arsenic poisoning thing to obsess about. I’m really good at obsessing in general. Thankfully my girlfriends listened to my troubles and pushed me in the right direction. What we all need is to make sure we are speaking up and pushing for ourselves too. Onwards.
Are you like me? Do you think you have every disease you read about? Here’s some info on Celiacs disease, the extensive blood work you might want to consider, and the link to a great card set called “Fifty Things that Might Kill You”. Because why not?
Facts, Figures, and Fantastical Ideas:
- What the heck is gluten? A protein found in Wheat, Oats, Rye, Malt and Barley. Not the kind of good energy protein you find in eggs and meat and things. Just some weird science protein that makes everyone confused. Technically oats do not have gluten in them, but most farmers growing oats rotate the crop with wheat, and the gluten leaches out into the soil, and then when you plant the oats the gluten gets absorbed into the oats. You can find gluten-free oats in the store because those farmers are following gluten-free farming practices. Tuck that away for your trivia night evening.
- Celiacs Disease is not an allergy. It’s an auto-immune disease. Essentially it’s your body reacting to the presence of gluten in a way that creates an attack on your own self. Your intestines have these cute little villi that are like little fingers or tentacles reaching out to absorb nutrients. In Celiacs, the gluten makes the body think it’s under attack and the immune system kills off the villi. So no more nutrient absorption, and the body becomes malnourished. That’s what the blood test looks for – antibodies in your blood which indicates your immune system is in attack formation. There are three separate tests you need to diagnose celiac (and yes, you need all three, not just one) – Tissue Transglutam AB IGA, Gliadin Deamidated AB, IGA, and Gliadin Deamidated AB, IGG. You see why I didn’t notice I had Celiacs. None of those say Celiacs. Arsenic is way more fun to talk about.
- Celiacs can make people react in so many different ways that there isn’t really a “typical” symptoms list that would make you want to go get tested. I just think every human should be tested anyway. Like a CBC, cholesterol check. Just do it. A healthy gut is too important not to take care of. Did you know that 80% of your immune system is in your gut? So if your gut is sick then you’re just going to feel rotten. Maybe we’re not all sleep deprived because of long commutes and screen time. Maybe we all have celiacs. Maybe celiacs is the magic answer for everything. I wonder if Harry Potter has a spell for that? “Reparo My Gut!”
- In Italy, they simply test every child at age 5. That’s your baseline. And then you can get tested again later to see if you have a change. Or if you’re already Celiac as a kid you know to make changes (a strict gluten-free diet) and you get healthy early in life.
- I also think this Custom NutriQuant Panel was wicked important. We can all take vitamins, but how do we know if our body is absorbing them if we aren’t checking? Think about this. I was taking 1667% of Vitamin B12 thru my multivitamin EVERY DAY. And it was going right thru my body like it was water. While my body is repairing I’m taking B12 as a dissolvable tablet under my tongue so it goes directly into my blood stream instead of needing to be absorbed through my gut. Cuz apparently my gut isn’t working all that well.
- It can take six months for my body to heal while doing this whole gluten free diet thing. As little as one eighth of a teaspoon can be enough to set an immune system into attack mode. There’s no cheating. Or mistakes. Which makes this part really fun:
- Food companies do not need to indicate if their product has gluten in it. The allergy people are much better organized with the lobbyists on this front. The eight major allergens (fish, shellfish, peanuts, treenuts, eggs, milk, soy, wheat) are required to be listed on packaging. Gluten can be hidden in the ingredients – in things like “natural and artificial flavoring” – and when I have called company customer service hotlines (places like Dannon yogurt) to ask them if there is any hidden gluten I was told “the ingredients are proprietary information” (and I never bought a Dannon product again).
- Yes, there is a ton of gluten free options in the grocery store. Some of them actually taste good. Most are in the meh category.
- Gluten can hide in things like soy sauce, rice krispies (because malt flavoring is cheaper than sugar), toothpaste, medications, and envelope glue. Remember that episode of Seinfeld where Susan died from licking envelopes? Again, celiacs might be the answer to all the world’s problems.
- Celiacs is not something you grow out of. It’s a disease you have forever (until they find a cure). The only way to live a healthy life is to be completely 100% gluten free all the time. With all the choices of other things I could have, I’ll take this one, thank you very much.