To gluten or not to gluten: That is the question

DSC_0768By Carie Sherman

It’s a question on a lot of people’s minds, especially those of us who just want to get better.

Promotion of the gluten free lifestyle is everywhere. There’s even speculation that gluten is a reason for the increased incidence of–yep, you guessed it!– autoimmune disorders.

Change Your Diet; Cure Your Incurable Disease

There’s no known cause of or cure for lupus. And despite the fact that a quick search of “lupus + gluten” reveals “studies” that link the two, it hasn’t been proven. (In a lab. By scientists. Real ones, who follow scientific standards and whose research can be duplicated in the lab by other real scientists. Findings that have been peer-reviewed. That kind of study.)

Despite that fact, there’s a movement on the interwebs that strongly suggests wheat is Public Enemy Number One. Books and blogs have been written. Conspiracy theorists have gotten on board and celebrities are endorsing the GF lifestyle.

And, no surprise here: the consumer-market is fully engaged.

So why all the interest in going gluten free? Is it just a fad? Should the average lupus patient try it?

Confession: I’m Gluten Free

I’ve been off gluten for nearly a year. I made the change at the suggestion of a well-respected rheumatologist. (The suggestion was given with the preface of: There isn’t any scientific proof to this, but I’ve had patients feel better off gluten.)

That was good enough for me.

When you feel like crap, you’ll try anything. Even if science can’t back it up.

When Gluten Free is Medically Indicated

A gluten free diet is the only treatment for an autoimmune condition called celiac disease. According to the Mayo Clinic, celiac disease is “an immune reaction to eating gluten, a protein found in wheat, barley and rye. If you have celiac disease, eating gluten triggers an immune response in your small intestine. Over time, this reaction produces inflammation that damages the small intestine’s lining and prevents absorption of some nutrients (malabsorption). The intestinal damage can cause weight loss, bloating and sometimes diarrhea. Eventually, your brain, nervous system, bones, liver and other organs can be deprived of vital nourishment.” In kids, celiac can affect growth and development. My husband has a friend whose daughter wasn’t growing. She grew 3 inches in a year post celiac-diagnosis by following the only known cure: the GF diet.

I was tested for celiac, which involves blood tests that look for elevated levels of certain antibodies as well as genetic indicators. My antibody levels weren’t elevated but I did have the genetic markers. Confirmation for me would involve an intestinal biopsy. Coming off a year of multiple, lengthy MRIs (where I accurately self-diagnosed myself with claustrophobia) and receiving electrical shock testing, I was over it. So when the doc said I could try GF and see if I felt better, I went for it.

And my headaches stopped, and my brain was less foggy.

So I stuck with it. But here’s the thing: I can’t remember HOW much better I felt after going GF. And I can’t remember if anything else could have caused my symptom relief. (Did I start any new meds? Was I on steroids? Had my sleep apnea treatment just started working? Did I feel better because I was eating more whole foods and cut out junk?)

It’s likely that I have a gluten sensitivity (it’s a real thing). If you’re sensitive to gluten, a GF diet will help alleviate symptoms. Yet I’m kicking myself for not getting that biopsy. Because once you go GF, it’s difficult to go back. I really miss bread.

GF is all or nothing. You can’t go “almost” GF. And each time you accidentally ingest gluten, you feel awful. It’s not a weight-loss miracle (Milk Duds are GF). I’m the anchor on the fun boat of eating French food and drinking beer and going out for pizza. My hubby is more than a little over me saying “I can’t eat that” when he’s in charge of dinner.

And anecdotally-speaking, I’m a year out and I still have undifferentiated connective tissue disorder and Sjogren’s Syndrome and IBS and GERD and fibromyalgia.

But I do feel “better.”

What’s the Evidence?

Although most of us have heard a plethora of anecdotal evidence on GF lifestyles, science hasn’t shown any links as it relates to autoimmune disorders. It’s true that the research on gluten–particularly as it relates to non-celiac gluten sensitivity– is lacking.

In fact, there are a handful of studies that suggest the reason people feel better off of wheat has nothing to do with gluten at all–rather, other proteins contained in wheat that we don’t fully understand. Writer (and fellow GF-er) Roxanne Khamsi says in the above referenced article that further research can help clinicians develop more accurate tests for various grain-related sensitivities. She states: “Ultimately clinicians hope such tests will help people who have a genuine medical condition to avoid the specific constituents of grains that make them ill and will stop others from unnecessarily cutting out nutrient dense whole grains.”

One Blogger’s Opinion on Do’s and Don’ts

If you’re considering going gluten-free based on anecedotal evidence, I completely understand. But it’s important you fully understand your choice.

So for what it’s worth (remember, I’m a blogger, not a health expert):

  • Don’t self-diagnose. Go to your doc, get tested, and don’t stop eating gluten until you’re diagnosed. If you quit before you’re tested, your test results won’t be accurate. Many people feel better GF. But years from now, you’ll want to know if you’re sensitive or if you have celiac.
  • Do consider your diet. We don’t understand lupus, and great nutrition isn’t what we Americans are known for. Most of us eat way too many processed foods. So it makes sense to give your body a break and eat real food — sick or not.
  • Don’t assume what works for one lupus patient will work for another. We’ve accepted that lupus presents differently in every person, which is why it’s so difficult to manage and treat. I think we can also safely assume that a one-size-fits-all approach to diet isn’t the answer either.
  • Do consider a visit to a nutritionist. I haven’t done this yet, but it’s been on my to-do list for a while.
  • Do what’s right for your body. My grandpa won’t touch onions or garlic or chocolate. My grandma swears that eating nightshades (eggplants, tomatoes) makes her arthritis flare. Most people I know have labeled at least some food as bad for their body. So my best advice? Let your body be your guide and don’t hang your hat on the hype that surrounds this diet or that.

What’s the Bottom line?

I know if I post that there “isn’t” evidence of GF being right for everyone, this blog will see more enraged comments than a post about politics (seriously, medical professionals can’t blog on the topic without getting really inflammatory comments!).

So I’ll just say this: Anecdotal evidence exists that suggests a GF diet can be helpful for some non-celiac patients. But as of today, there is no science that suggests a link between gluten and lupus. Period. So until the science (you know, that published-in-a-peer-reviewed medical journal-type science) suggests otherwise, be wary of gluten free being a cure-all for your autoimmune disorder.

Are you gluten free? Have you made dietary changes that have benefited you? Share in the comments below.


It Starts in the Lab: Why Everyone Wins When You Support Lupus Research

DSC_0768By Carie Sherman

Hooray, hooray, the first of May! Okay, I’m a little late there. But it’s for good reason: Lupus Colorado has updated their website. It looks awesome. Nice work, Team LC!

But, again, hooray! Because it’s May, which means it’s Lupus Awareness Month.

Beautiful month. Terrible disease.

Twenty years ago, while I was putting the finishing touches on my college entrance essays, lupus patients everywhere were receiving grim news: 40 percent of people diagnosed with lupus were NOT expected to live more than 3 years.

Today, more lupus patients than ever can expect to live a normal life span. Yet these facts remain:

There is no cure.

  • More than 1.5 million Americans have it.
  • Even “mild” cases can be debilitating and if not monitored appropriately, life-threatening.
  • Prior to the FDA-approval of Benlysta in 2011, it had been 50 years (!!!) since a new lupus therapy had been introduced.
  • More than 90 percent of people with lupus are women.
  • Women of color are 2-3 times more at risk for lupus than Caucasians.
  • Lupus research is underfunded and poorly understood, despite the disease’s prevalence.

So what can be done about this disease which has no known cause, few medicines, and no cure?

To me, that answer is simple: Support lupus research.

Supporting lupus research is a win for everyone. Why?

  • The incidence of autoimmune disease is rising. The National Institutes of Health estimate, “up to 23.5 million Americans have an autoimmune disorder,” (cancer affects up to 9 million; heart disease = 22 million).
  • An increased understanding of immune system activity can benefit us beyond lupus — people who receive transplants, AIDS patients, cancer patients, and patients of infectious disease are also likely to benefit from increase knowledge.

Help LC Support the Lupus Research Institute (LRI) Harness the “Power of 10” CampaignPower-of-10-Image140

Advance lupus research by getting informed and getting involved. According to the LRI, lupus is considered to be the scientific prototype for autoimmune research because the immune system can attack any part of the body. When scientists unlock lupus, the door may open for some 100 other autoimmune diseases affecting millions of people.

  • Lupus patients, consider joining a clinical trial. Every medication we currently take was approved because of volunteers.
  • Spread awareness. Email 10 friends or post info on your social media platform of choice. I changed my profile pics–did you?
  • Donate. Gifts of any size can make a large impact. I just sent a text that said LUPUS to 50555 to make a $10 donation to the Lupus Research Institute (92 cents of every dollar goes directly to research).

Before my doctor handed me that slip of paper saying “systemic lupus erythematosus,” I knew nothing about lupus. The last few years have been eye-opening to me in terms of the number of people who suffer (often in silence), the misunderstanding of autoimmune disease, the lack of tolerance we as a society have for chronic illness, and the lack of understanding we have about systemic disease. We have a lot to learn. Any donation helps.



Three Things You Can Do TODAY to Make a Difference for People with Lupus

And each takes only a few minutes (and are mostly self-serving). I promise. 

Carie Sherman1) Go shopping! I’ll be putting my Amazon Prime account to good use this week by specifying Lupus Colorado (under its incorporation name of Lupus Foundation of Colorado) as the beneficiary. In addition to the regular portion of donations, Lupus Colorado will receive an extra $5 for each donation. Learn more.

2) Make room for your Amazon purchases (and have someone ELSE pick up the stuff!). Lupus Colorado depends on your support to help the individuals and families impacted by this lupus. Meet spring with a cleaner house and a do-gooder spirit by donating your unwanted clothes, goods, and household items by calling 303-231-9337. Learn more.

3) Become an armchair advocate. While you’re waiting for your lives on Candy Crush to reset (I’m looking at you, dear husband!), visit http://www.congressweb.com/lri. There you’ll find info on increasing access to medications that already exist and increasing funding for important research. Our executive director is in Washington, D.C., now. Let’s show her that we’ve got her back.

These are just a few simple ideas to get you into support mode. As always, thanks for supporting me and all the people who benefit from the amazing work of Lupus Colorado.

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