Wednesday, June 15, 2011

Knowing When to Change Direction. A Case Study.

Laura wasn’t gaining weight, and I was puzzled. Now most practitioners who have been working with eating disorder patients might laugh at me and call me naïve. She has anorexia, after all! How odd is it for her not to be gaining weight, when you think she’s eating all that she tells you? You can’t trust the eating disorder!

Here’s the backdrop.

Laura, a woman in her early thirties, had struggled with anorexia for years before first seeing me. She was painfully honest about her unsuccessful attempts to eat amounts we had agreed upon, to follow a plan we had negotiated. At times she made some progress with eating a bit more but it was never sustained enough to change her weight or her health. And in between she cycled through numerous hospitalizations and eating disorder programs.

Several months had gone by and Laura was now in a very different place. She had shifted her will, in favor of recovery, of change. She asked great questions in our sessions and strategized about practical changes to boost her food intake. There was a notable change in her food records, which supported what I was hearing in my office. I was impressed by both her determination and the significant increase in food she had reported eating.

Yet Laura wasn’t gaining weight.

So I called her doctor, the best MD around for eating disorders. I told her it just wasn’t adding up. Yes, she reminded me that Laura has a long history with this eating disorder, and that I shouldn’t forget this. But, she trusted me and accepted, albeit reluctantly, my recommendation for a GI consult. If there were no clinical explanations for the lack of weight gain in spite of her reported intake, than I’d accept my foolishness in believing, in having some faith in this patient.

Following the procedure, the gastroenterologist report read like none I had ever seen. As head of a GI department, with a specialty in celiac disease, he stated that never before had he seen such a progressed case of celiac disease. Celiac disease is an intolerance to a protein called gluten found in many grains and foods, including wheat, barley, and rye. Gluten is also found to contaminate grains, showing up where it shouldn’t occur. For those with celiac, taking in gluten causes damage to the intestine’s ability to absorb nutrients, and results in discomfort and often weight loss and other consequences.)

Despite eating all she was eating, her body was unable to use most of these calories.  Her reports of eating were likely not exaggerated. And so for many months Laura followed the prescribed celiac diet, a gluten free plan, and finally began to gain weight as expected.
But it's going to take some work!
But the story doesn’t end here. When you have a medical condition, everyone, perhaps including you, assumes that everything you experience is the result of your condition. It took some convincing that Laura was seemingly eating what she said, and that there could be something else going on. As a person living with MS, I have to remind myself this all the time. I could have pain or numbness because I did something in my workout, not just because I live with a neurological disease. Similarly, Laura had two conditions—one of which managed to get missed, because we were all so focused on the other one.

The reverse is also true. Just because we knew Laura had celiac disease, didn’t mean that her lapses in progress with weight restoration were directly linked to her celiac disease. Sometimes they were, the direct result of restrictive eating.  And sometimes the two diseases were linked, like when her eating disorder side sabotaged her recovery and chose to eat gluten-containing foods, leading to more malabsorption and poor weight gain.

Laura’s case is rather atypical. But there’s a lot we can learn from it. We, all of us, need to watch our assumptions. We are quick to attribute everything to a single condition—and that includes obesity, as well as eating disorders. Remember that post where I shared I have high blood pressure Yes, in spite of my normal weight and active lifestyle, I take meds for hypertension, as did my slim father.
Not giving up, just respecting his limits, acknowledging when
it's time to slow down.

That being said, even medical conditions, including eating disorders, can be changed, so don't give up! No, there’s no medication to resolve it, but even individuals like Laura, and like Jamie dealing with anorexia and bulimia and Maggie and Erin dealing with binge eating disorder, with significant obesity for most of their lives before changing it, can recover. 

It takes some faith in your self and some good supports, including a treatment team that believes you can move on. And a willingness to change course when you need to—to learn how to manage obstacles, to explore additional therapies and levels of care that might get you over a hurdle.
I wouldn't have married him if he couldn't find a better solution!

And now?

Laura has had her share of ups and downs over the many years I have worked with her. But she is the best I have ever seen her. And she wanted me to share her story with my readers. I continue to try to support her as she balances her newfound interest in food and eating (including foods such as lasagna) with guidance for preparing such foods gluten free.


  1. I wonder how much of being ill with celiac disease was a trigger for developing the anorexia in the first place? Surely being in pain would result in not wanting to eat, which then leads to that terrible vicious circle that anorexia throws us into.
    Also thank you Lori for sharing the part of the story where you actually believed her. I know it's just me taking it personally because of where I am in my recovery. And I know that a lot of the time those trapped in AN can't be trusted - but it really hurts when you really are trying and eating and no-one believes you. I guess it just shows your experience when you can tell the difference.
    Fantastic story of hope to start the day with (especially as I'm seeing my dietician today!)

  2. Lori,
    I just wanted to thank you for your posts. I am in recovery (see an RD twice a week, a therapist once) and it is so nice to have found a site that gives me hope. Sometimes this whole thing seems so overwhelming. I am at the point where I am not dangerously thin anymore so the "real" work is starting. Fear foods, over exercising..those are going to be challenging. Thank you for giving me hope that it can be done.

    Totally off topic here, but can anyone tell me how long it will take to regain my period? It has been 16mos. I am at a "healthy" bmi now, just wondering.

  3. From one anonymous to another... I think the period thing differs from person to person. I just wanted to tell you taht, for me, truly, it took me a year and a half at my healthy BMI (not just bare minimum) for me to regain my period. I don't know if this is true or not, but the timing of my period's return might have been correlated to when I agreed to increase my fat intake (added walnuts, avocado, etc.). When I increased my fat intake (per RD recommendation), I didn't gain weight, but, a few months after that, I did get my period back. Be patient. Eat your food - including fats. And make sure your BMI is healthy FOR YOU.

  4. Thanks so much for your comments! So glad you find the site of value.
    As for periods--it typically will take 4-6 months for menses to resume after achieving a healthy weight. But as Anonymous #2 states, it is certainly variable. Inadequate dietary fat may delay the return.

  5. Found your blog through Carrie at Confessions of an RD and I love it!!! I feel like I am smarter by reading your blog, it reminds me of reading in university (and I LOVED my program, so that was meant as a compliment!) :)