Gluten Free or Gluten Freedom? You Decide. How a Gluten Free Diet Impacts Weight & Health

Do you really need to give this up?

Go ahead and eat how you’d like. Want to only buy organic produce? It’s your call—just don’t ask me to foot the bill. Into whole grains? Vegetarian or Vegan? Serious meat eater? Really it’s not for me to judge.

But you know I can’t just leave it at that. My concern is that if you choose to eat in a particular manner that it be without unnecessary rules that negatively impact your wellbeing—either physical or mental. And I’m concerned when you and others get caught up in the supposed health hype of the day, only to learn the hard way that it just wasn’t worth it.

Let’s talk gluten free

Yes, I even add gluten to my breads!

I hate pain and suffering. So if you have celiac disease and are suffering the effects of this autoimmune condition—this reaction to gluten that strangely results in self destruction of part of your small intestine, there is no diet I’d rather see you follow. Please follow it 100%. Period. Avoid cross contamination from wheat, rye, barley and its derivatives. Read labels and avoid it like the plague. And contact a Registered Dietitian who knows the ins and outs of following this diet to focus on what you can include, not just what you need to avoid.

And I hate deprivation. I mean, denying yourself great, fresh gluten-rich breads and hearty wheatberries and barley (see recipes from Food to Eat and Drop the Diet) to me is painful. I simply don’t see the why if you don’t have celiac disease. If you don’t have celiac choosing gluten free does nothing to enhance your wellbeing nor help you manage your weight. But you’re not alone for believing it will. At my 30^th college reunion recently, I confessed my profession to a classmate, a very bright MBA, Ivy educated attorney. This smart and sensible guy hopefully queried “Do you think I have to stick with this gluten free diet I’m on? Would I be okay if I just gave it up?” Yes, poor judgment knows no IQ limits! So LA classmate, this one goes out to you!

But aren’t there benefits of a gluten free diet?

What Gluten Free will do to your weight

Or these?

Start following a GF diet and no doubt you’ll be much more mindful of what goes in your mouth—because you have to be. You read labels and you think before you eat. And that’s a good thing from a weight management standpoint. It’s hard to be an impulse eater while following a GF diet. Besides, how many rice cakes or GF cookies can you really eat? But if you don’t cook much and you rely on ready-made GF products, the quality of your diet may suffer—along with your weight. GF breads are more calorie dense, as they are missing the scaffolding that gluten provides to assist leavening. And GF breads and other products are often (although not always) lower in fiber—there’s no whole wheat, or rye or barley. (Of course you can add quinoa and brown rice, but these you need to prepare.)

Or this?

If you are following a GF diet because of celiac disease, then your weight may very well increase; with poorly controlled celiac (think pre-GF diet), there is malabsorption. You eat, but much of what you eat passes through without being incorporated into your body. Resolve the underlying issue by avoiding the culprit—gluten—and you will restore normal absorption and get all that you eat. And yes, that may result in some (perhaps very appropriate) weight gain.

But if you’re like the majority of individuals following a gluten free diet, you haven’t tested positive for celiac (through a blood test or via an endoscopy and biopsy of your small intestine). Rather, you follow this diet for a range of other reasons.

A tale of 2 RDs

My favorite, homemade rugelach. Recipe on this blog! Not GF!

It’s amazing what desperation will do. When the medical community fails you—when they have no answer for your symptoms or no cure for your disease, alternative, non-evidence based practices look very appealing. And what’s to lose? Yes, even rational thinkers can be sucked into the hope that this may solve our problems. As I’ve written about previously, my diagnosis with MS 12 years ago lead me to the gluten free diet. Anecdotal evidence abounds and the theories seemed believable. So yes, I followed a gluten free diet—meticulously. Labels were read and dining out was largely avoided—except for at establishments that took gluten free seriously. I was cautious about cross contamination as well—I had my own jar of preserves and butter—no gluten rich crumbs were to enter my body.

And then I stopped. It wasn’t just that I thought about my favorite breads and baked goods I could no longer eat—that was a challenge— or the time it took to prepare everything from scratch—I do that largely anyway. But when my 3 month MRI showed more new damage to my spinal cord it was a done deal. The GF diet did nothing for my disease. Mind you, I’m not blaming it for the worsening of my condition during that time period; the disease progression coincided with the GF diet, but there was no evidence that it was caused by it! Anecdotes like mine are rarely posted. You generally just hear the success stories, leading you to believe only the positive.  

Which brings me to another RD

Kay struggled with many of the classic symptoms you hear about, attributed to gluten intolerance—GI cramping, low back pain, diarrhea, fatigue, to name a few. And regrettably, her doctors failed to screen her with the simple blood test that picks up the majority of sufferers with celiac, nor suggested an endoscopy to take a look at what was going on. Rather than delay, Kay began a gluten free diet and by her report started to get relief from her symptoms within days—not fully, but significantly.

In Kay’s situation, this was likely celiac—just never diagnosed. I often see patients, though, who believe they have a gluten problem who likely don’t. One recent patient had been avoiding all gluten for many months, yet continues to have diarrhea 3 times/day. If it were a gluten issue, symptoms would certainly be improving. Another patient believes she fails to tolerate gluten and reports following a GF diet and feeling great. But a closer look revealed lots of hidden gluten sources—like on a daily basis. No, avoiding gluten wasn’t what was helping her—because surely she only perceived she was avoiding it. Rather, the placebo effect just might have been working its magic.

Dessert, not bread, from Tartine, San Francisco. Yum.

So why share all this? Because there is so much misinformation out there that it’s easy to get sucked into the craze of the days. And I believe that you should be educated about the impact of your diet choices—both physically and mentally—so you may make informed decisions.

And no, I have no financial interest in gluten-rich products, but I do love my favorites including Tartine (San Francisco), Seven Stars (Providence, RI), Guillaume (Montreal, Canada), and Clear Flour (Boston, MA). And of course Kings Highway Bagel in Brooklyn, NY, where I grew up. What are your favorites?

And for those who follow GF, what are your favorite, certified GF baked goods? Please share!

Following a Vegan Diet. And, a Gluten Free Diet. And, and, and…

Couldn't Resist This Photo Op In Switzerland!

It’s time for some praise for doctors. Surprised? I know you are used to my airing my complaints here, for inappropriate, unconstructive assumptions some doctors make. And, for their misinformation not infrequently conveyed to patients, when it comes to diet and disease management. Just last week, a patient with type 2 diabetes shared her experience about her follow up MD visit. Jane has been eating well, resulting in a significant and appropriate weight loss. She’s moving more, and watching her carbohydrate intake, improving her post meal blood sugars. But given that her morning numbers remained quite high, in spite of her fabulous lifestyle changes, I encouraged her to address this with her doctor, hoping for a shake up in her diabetes medications.

Can you guess what he told her? 

You guessed it. Just lose weight. Yes, he wanted her to continue to stay with sugars almost 100 points too high, potentially causing damage to her blood vessels and her organs. Perhaps continued weight change will improve her sugars—but that takes time, and with the 50 or so pounds she has already lost, the numbers haven’t changed significantly. But it’s easier to pin the responsibility on the patient to change.

Oops! I was planning on praising a doctor today!

The wisdom of Dr. Mars

His patient was not an obvious referral for nutrition counseling. She did not present with any complaints about her health, and her rudimentary labs did not flag any concerns of disease in the works—normal cholesterol, blood sugar, thyroid, to name few. Other, more detailed nutrient assessment is pending. Her blood pressure is fine, low in fact, with that “healthy runner’s pulse”. And her weight? It had dropped from her usual place many years ago, from the normal range, when she had been diagnosed with cancer, now in remission; but it had increased somewhat since then.

“What brings you here?” I asked, as it was not so clear, at first glance. “Dr. Mars suggested I get in to see you”, she replied.  “His concerns?” I continued. “He’d like you to assess my diet and be sure it’s adequate.” Fair enough, I thought.

At least she's left with these--if they're uncooked!

And here’s what I heard. Di moved from a vegetarian diet to a vegan diet some years ago, presumably to be healthier. She then cut out soy products because of inconclusive evidence of a link between soy and some cancer. Only she did not have the type of cancer that might have even been impacted by soy. She then decided that she should cut out gluten, because she thought she might be allergic. She didn’t notice any change, but had heard (from reliable sources, no doubt) that it helps. So she stuck with it. Rumor had it (Hollywood tabloids, perhaps?) that the raw food diet was a means to extend life and stay fit, so she tacked on those rules too. 

I’m not sure I could have created such a patient from my imagination. The only thing she hadn’t reportedly restricted was fats. But judging by her food selection her intake of fat was quite low, unhealthily low. Oh, how wise of Dr. Mars to send her my way!

My confession

We do the craziest things for our cause.

I get it, at least to some extent. If you’ve been handed a diagnosis for which there is no cure, or one which can easily take your life, you feel quite vulnerable. So anything you can do to potentially help your situation makes perfect sense. And so early in my diagnosis with Multiple Sclerosis I embarked on my own gluten free adventure. Armed with anecdotes spread across the Internet, I was determined to take charge of my condition in any way I could. I knew that the science was sketchy, at best, in its infancy in fact. Much had been written about other auto-immune conditions and the benefits of a gluten free diet, but little to no research existed for MS. I had my MD check my labs, which revealed some abnormal levels—so maybe there was a link, I thought. Celiac experts (those that address the autoimmune disease truly caused by consuming gluten) dismissed these labs as inconclusive, but I was determined.

Three months of strict adherence to a gluten-free diet cured my MS!

Don’t I wish! Rather, meticulously following a gluten-free diet was a constant reminder that I lived with this medical condition; kind of like following a meal plan with an eating disorder. But if it worked, I would follow it forever. Only it didn’t work. Sure, I felt I was taking charge, doing my part to control my disease. But in those three months I had more new lesions on my brain and spinal column than perhaps at any other time in my 9 years with MS.

There’s a point you have to ask yourself “Is this strategy working for me?” Is it really meeting the need I intended it to meet?

 Gluten-free failed. But fundraising and riding with my team of friends and
family (almost half of whom are MDs) has helped me enormously.

Did Di’s strategy improve her health with her myriad of diets rules? Hardly! She now had irregular periods (potentially due to a low percent body fat), and she likely will be experiencing muscle wasting, as her total calories and total protein are insufficient for her need. Osteoporosis or osteopenia , its precursor, is inevitable, with her low calcium intake and vitamin D, and with her questionable estrogen levels, given erratic periods. I could go on listing the pitfalls of her diet, but I think you get the point.

Focusing on her food rules may very well work for Di—on some level. But if she allows herself to be honest, she’ll realize that this is not a healthy diet at all.

And you?

Is it time to reexamine your own patterns of eating or food rules? Are your eating behaviors really working for you? And is it in your hands to change?

I’d love to hear from you.

Thanks for reading and for giving me your invaluable feedback!

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 http://dropitandeat.blogspot.com/2011/04/lies-theyre-feeding-you-about-your.html? 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 http://dropitandeat.blogspot.com/2010/09/insanity-or-recovery.html dealing with anorexia and bulimia and Maggie http://dropitandeat.blogspot.com/2011/02/maggies-152-lbs-weight-lossthis-time.html and Erin http://dropitandeat.blogspot.com/2010/09/meg-hit-300-pounds-wednesday-and-was.html 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.