A fellow celiac sent me the below rant and since it’s a long (and very important) read, I will waste no more time. Here you go:
On June 22, 2013, on the CNN website I read that the American Medical Association is going to declare obesity a disease.
What does this have to do with celiac?
I’ve now read enough posts by people who have celiac to know that many MANY of us prior to diagnosis fell into one of two camps on the basis of outward appearance: the sickly-looking waif, and the diet-frustrated overweight.
Thus, my rant.
I have always been big… by the 5th grade I was 5’5, 165 pounds, and on the diet carousel. And I was an active child throughout my childhood and adolescence. I played soccer in a boys’ league (there was no girls’ league). I was in my high school’s marching band, which doesn’t sound rigorous until you go try high-stepping and quick-stepping in 85 degree heat wearing 10 pounds of wool and polyester. I haven’t been smaller than a size 16 since I was 14 years old, and graduated from high school exclusively shopping at Lane Bryant.
In June of 2010, having tried every major diet out there, showing the signs of insulin resistance and hypothyroidism (without a low TSH), having arthritic knees, and weighing 280 pounds, my husband and I went on a version of the Mediterranean diet to try, one final time, to kick the weight prior to gastric bypass. Lo and behold, this time I was successful! I was on a diet of lean proteins, fruits and vegetables, and, most importantly, NO CARBS. I lost 20 pounds in two weeks! My husband lost another 25 himself. To celebrate, we went out to eat, ordering a thin crust pizza with toppings on it that were allowed on our diet regime.
Within 45 minutes I was in excruciating abdominal pain and ravingly psychotic. I thought I was going to die – either from the pain or from doing something completely stupid.
It took me days to recover and I called my doctor afterward. He took a diet record. And then he said: “I think you have celiac. But we’re going to try an experiment, since you can’t be consciously sedated for an endoscopy. Go back to eating how you have been and then the day after the 4th of July, go back to eating anything containing gluten. Then we’ll run the antibody test.”
Three hours and one donut into July 5 and I was begging to any deity I could beseech for the pain to end.
So my doctor decided not to push it with the antibody test and, when he heard about three main components of my family history in relationship to my own history with food (including a complete intolerance to beer during my undergraduate college years), diagnosed me with celiac (though I am willing to say that it might be severe non-celiac gluten intolerance [NCGI]). Those three components were: a strong family history of diverticulosis; a strong family history of tinea versicolor (a skin fungus that leaves brownish-red patches that bleach white in the sun); and my grandmother’s story of surviving her childhood in the Great Depression eating only rice gruel cooked in goats’ milk because she couldn’t keep anything else down.
Within a year, I was down 98 pounds and wearing the smallest clothing I had worn since I was 13 years old (mostly 14W and 16). But I also fastidiously avoided the “GF substitute” foods, mostly because, on a graduate student’s budget, I wouldn’t pay $6 a loaf for the nastiest bread I’d ever had in my life.
Then on Halloween of 2012 I was diagnosed with breast cancer. For those of you who know the lingo, my tumor was Stage IIA, Grade II, node negative, ER/PR+, all of which means the tumor was the size of an Easter jellybean, showed moderate irregular growth, had not spread to the lymph nodes, and was fed by estrogen. But because my tumor tested as having an aggressive recurrence streak, I had four rounds of chemotherapy.
The chemotherapy nearly killed me (and I must add, celiac was likely NOT a culprit in what happened to me). I was at first on a regimen of Cytoxen and Taxotere, and then five minutes into my second infusion session (which started with Taxotere), I had a complete systemic inflammatory reaction that came within three minutes of killing me. Between the inflammation caused by the Taxotere and the inflammation caused by being flooded with more steroids than an East German female bodybuilder, I was a wreck for two weeks. I ate very little.
And I gained 30 pounds. In two freaking weeks.
Here’s my point.
The experience with both my celiac diagnosis and my chemotherapy has demonstrated to me how important it is to understand inflammatory models of obesity. For some of us with celiac or severe NCGI, the inflammation of the condition appears to cause weight retention, while for others the malabsorption causes waif-like malnutrition. In my body, inflammation directly influences my weight in powerful ways. It is clear, whether I have celiac or NCGI, that gluten, like chemotherapy, is an inflammatory toxin – the difference is that there’s at least some hope/ideal that the chemotherapy might actually be treating a more severe life-threatening condition. I see no such use for ******* gluten.
I know I am not alone in my experience of inflammatory obesity secondary to celiac/NCGI – even just in reading the stories of people on this blog, I know I am not alone in this. If the medical community wants to take curing/treating obesity seriously, then CELIAC AND NCGI MUST BE PART OF THE CONVERSATION AS A POSSIBLE CAUSATIVE AGENT– AND NOT AS A ******* GLUTEN FREE DIET FAD.
I call on the celiac research communities at Columbia University, the University of Maryland, and the University of Chicago to actively collaborate with obesity researchers in public health and medicine to explore inflammatory and auto-immune models of obesity secondary to celiac/NCGI and to start paying attention to these symptoms in young children.
For the most part, the overweight celiac diagnosis is largely an adult phenomenon. But if you scratch the surface and look underneath, symptoms were there in childhood. I know they were for me. I suffered physically and psychologically for many years, many of them as a child, as a result of my obesity. I’m still a large woman, but at least now I am not obese and am healthier than I have been – even while coping with celiac/NCGI, fighting a cancer diagnosis, and taking tamoxifen. Equally importantly, I now know for the first time in my life that I am a beautiful, strong woman, and carry myself with pride in my outward appearance.
If the medical community wants to take obesity-as-disease seriously, then it MUST START TAKING CELIAC-AS-DISEASE SERIOUSLY. It might be surprised how connected the two actually are.