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You can’t lead a remarkable career if you aren’t able to take care of the basics in life: family, health, nutrition. That’s why over the years we’ve been expanding the Safari catalog beyond just IT and programming books to include thousands of titles on personal development and wellness. We find these titles are a great complement to the library — some of our most popular titles within our company right now are about personal finance.

This very personal post by our engineer Nikk Folts addresses celiac disease specifically, but I think every organization benefits from a holistic approach to wellness, and access to trusted and reliable health resources.

— Liza Daly, CTO Safari

I’m a 32-year-old senior software engineer here at Safari. For the first 30 years of my life, I had health problems that broadened and progressively got worse as I got older. Finally, in March of 2013, while frugally researching my issues on WebMD, I decided to try out this “hipster” diet; I decided to go gluten-free.

This decision was a desperate one. I was grasping for anything that might help slow down my declining health. After years and years of doctor visits that were inconclusive, multiple prescriptions written for ibuprofen, and a litany of other treatments for my many symptoms, I gave up on doctors and, sadly, resorted to hours and hours on WebMD. Doctors just couldn’t seem to identify the cause; they just kept treating my symptoms. What was the reason for my persistent pain and recurring health problems? Nobody could tell me. As it turns out, this is an extremely common story, one shared by millions of Americans with Celiac disease. I’m one of the lucky ones that was able to figure out what was causing my issues.

Living Gluten-Free by Kate Santon

What is Celiac disease?

Celiac disease (or Coeliac for those in the UK) is an autoimmune disease where your own body actually attacks itself and destroys the villi – finger shaped protrusions responsible for absorbing nutrients – in your small intestines, all in response to being exposed to gluten. Gluten is a protein that is found in many grains, such as wheat, barley, and rye. People with Celiac can react to extremely small quantities and must worry about cross contamination. If the food we eat so much as touches a plate/hand/utensil that’s been in contact with a source of gluten, we can react. Even a couple crumbs can cause a reaction that lasts days.

Celiac disease can cause hundreds of health problems, besides intestinal damage. These problems vary for each person, because they are not caused by a virus or bacteria, they are caused by the individual’s immune system going into overdrive. Untreated, it can actually lead to other diseases, like multiple sclerosis, rheumatoid arthritis, osteoporosis, even Type 1 diabetes! The inflammation throughout the body that is caused by Celiac disease also leads to much higher risk of heart attack and even depression (amongst many many other things).

How do I know if I’ve got it?

Celiac is a genetic disease, which means only people with the right (or, I guess, “wrong”) genes can have it. The Celiac Disease Foundation reports that “people with a first-degree relative with Celiac disease (parent, child, sibling) have a 1 in 10 risk of developing Celiac disease.” (read more). However, not everyone that has the gene develops the disease. What determines whether or not it manifests is still unknown.

The age at which you start showing symptoms of the disease also varies. Some people react as soon as they are exposed to gluten, but there has also been evidence that an autoimmune response can develop later in life, triggered by things such as giving birth. Stranger yet, the disease may show up in adolescence, go into a sort of remission during your teens and early twenties, and then resurface in your late twenties and early thirties.

On top of all that, Celiac is really tricky to diagnose. There is a blood test that looks for certain antibodies, but it’s pretty unreliable. The only “official” diagnostic tool is a biopsy of the small intestines to inspect for damage. By “a biopsy”, I really mean multiple biopsies of several different parts of the small intestines. The challenge here is that the biopsy is only useful if there’s already damage. That means the disease needs to have reared its ugly head, and you have to have been on a gluten-rich diet leading up to the biopsy for sufficiently long enough to cause damage, and one of the biopsies has to have been taken from the damaged area.

Cooking for Geeks by Jeff Potter

Is there a treatment or cure?

The only known treatment for Celiac disease is a COMPLETELY gluten-free diet. There is no cure (yet). There is no pill that you can take before you eat. It is a rigorous lifestyle change that involves reading every label, calling companies to make sure the facilities were dedicated gluten-free, researching every ingredient, and trusting everyone that comes near your food. Imagine if most of the food in the world had anthrax or some other poison in it… you’d be careful, no? It isn’t easy, and you can’t expect other people to get it right. I will audit anything you serve me, and it’s not because I don’t trust you; it’s because I don’t trust anyone. I still make mistakes, and I’m nearly 2 years in!

Heritability

Some time after going gluten-free for my own health, my wife and I became concerned about our daughter, Kaylee, because she lost weight between the ages of 18 and 24 months. She had already developed Celiac, though we didn’t know it yet. Her intestines were already so bad off that it had caused her to become malnourished; to the point you could see her ribs. We tried to get her to eat more, but she wouldn’t have it. And what she did eat, she didn’t absorb any nutrients from. She had uncontrollable tantrums over the simplest things. She fell behind in her gross motor skills, because she was lethargic from malnutrition and aching from inflammation. She didn’t want to run or jump.

Last May, shortly after her second birthday, Kaylee was positively diagnosed. We immediately changed her diet, and the impact was astounding. Her appetite was back, she was running around the house, and her tantrums had stopped (almost completely!). Her teachers were blown away by the dramatic swing in her behavior and energy level. Eight months,  one completely gluten-free house, and a very supportive preschool later, and she’s nearly caught up on her weight and gross motor skills.

Appetite Recovering

Less than a month gluten-free, and she ate 6 ears of corn and asked for more!

Why write about Celiac now?

Recently, there has been a lot of inaccurate publicity regarding gluten intolerances/sensitivities. People with gluten intolerance — a very real thing — have similar digestive responses to gluten as Celiacs, but without the intestinal damage – or probably a majority of the time, with an “inconclusive biopsy” when getting tested.

In addition to the bad publicity, there are some people who use a gluten-free diet in hopes of losing weight. These people are both a blessing and a curse for those of us with Celiac. They’ve helped create a significant market for gluten-free foods. There are now a ton of companies and restaurants dedicated to making gluten-free food — thanks! The problem is, many restaurants that started offering gluten-free menus to meet the demand don’t take the precautions necessary to prevent cross-contamination.

There are millions of us who have to eat gluten-free just to make it through the day without suffering from major digestive distress or other health problems, many of which can kill us… slowly. What’s worse, the media has increasingly poked fun at the diet, and most recently, Nascar and NBC have put out a controversial commercial. Two years ago, I would have probably thought this was something to laugh at, but after learning about Celiac disease first hand I now find it disrespectful. Despite protests and even an apology from NBC, the commercial is still being aired.

How do I learn more?

Ever since learning I have Celiac, I’ve become focused on finding all the best resources to make both mine and my daughter’s life as close to “normal” as possible. The list below is the culmination of that quest. Please feel free to comment if you’ve found other resources I should check out; I’m still learning myself!

Resources on Safari

Even more resources

Tags: health,

3 Responses to “Living with Celiac: An Engineer’s Story”

  1. Hap

    Nikk

    Great article – very informative. I wish I had your article many years ago. Also appreciated your comment on GD’s blog. I thought you must have some valuable experience with CD & now I know.

    Keep up the writing – you have some very valuable insights to share and you share so well.

    Best regards and health to you, your daughter & family. As difficult as CD and all of its related ravages have been for me, my sincerest empathies go out to parents who must endure the sufferings of their children with this disease until better health is accomplished.

    Hap

  2. Amy Markakis

    Thank you so much for this blog. I intend to share this with my daughter’s school as you have explained things very well. Two of my children have been positively identified as having Celiac Disease. It is always helpful to read about others struggles and triumphs. Thank you.

  3. Su Watson

    Great article and great resources: Thanks Nikk. Your authentic approach to educating others as you proceed toward understanding more for yourself and Kaylee, affords all interested an opportunity to simply better themselves by being more empathic. Along with your resources, I found the Mayo Clinic website offers continuous updated empirical articles on the disease. I hope you and other readers will find their website as helpful as I have found it, as I approach my first appointment there in March (2015). I can’t wait to map out my own plan toward holistic wellness. Here’s the link: http://www.mayoclinic.org/diseases-conditions/celiac-disease/basics/definition/con-20030410