What the Gluten?!

The interview with Eugenie was really awesome to share with everyone—I was particularly excited because it gave me some insight into what it is to travel in another country with diabetes supplies, considerations to think about, and it supported some things I’ve already done to prepare, validating the amount of effort I’ve spent (which feels great!). There was an additional point of interest that I had not expected: Eugenie’s comments on trying a diet that avoided gluten. I was intrigued, and reached out to some of my gluten free (GF) friends, to hear about their experiences and insights! And here is what I found!

The people:

Sara: 18, started GF in 2004 after being diagnosed with T1 and Celiac

Lydia: 22, started GF August of 2012 after suffering from small, but not insignificant, health problems (tiredness, frequent stomachaches, bloating, mysterious aches and pains)

Jen: 20, started GF fall of 2007 after being diagnose with Celiac disease

Summer: 19, started GF summer of 2012 after being diagnosed with Crohn’s disease (GF diets help reduce symptoms)

Question 1: Tell me about your overall experience with a GF diet?

Sara: When I first started a GF diet (9 years ago), it was very difficult, as the GF industry had not become popular, so we had to order food from Canada that tasted like Styrofoam. I was forced to mainly eat vegetables.

Jen: Within the past 3 years, the GF industry has exploded. Now many restaurants are aware and even popular brands like General Mills and Betty Crocker provide options for GF.

Lydia: Now, it’s actually not that hard. I’m a GF vegetarian, so you’d think my options would be limited… but, I can substitute GF pasta and bread products when I want them. I’ve gotten into baking and even made my own GF pasta and gnocchi!

Question 2: What physical effects do you experience with a GF diet?

Sara: At first, I had a really hard time staying completely away from gluten… sometimes it was a matter of not being able to resist Oreos, and sometimes I wasn’t aware there was gluten in so many things, like red food coloring. At first, I would barely notice the difference, so I ended up eating a lot of gluten. After about a month of eating gluten, I ended up in the hospital with some serious side effects of not being on a GF diet. The result has been that I am now much more sensitive, so I have to be very strict—any contamination can send me into a puking fit and eventually to the hospital with DKA (diabetes ketoacidosis).

Jen: Similarly, removing gluten from my body didn’t change much beyond not getting sick anymore.

Lydia: When I started, I didn’t know what would happen to my body on a GF diet, but I have found that I feel much more rested, and my energy is way up.

Summer: I believe GF diet is a main factor in what keeps most of my Crohn’s symptoms away. Some added benefits of a GF diet include: stopping having skin breakouts, the puffiness under my eyes is greatly reduced, I have more energy, and I feel “light”… not like a weight thing, but more of a feeling.

Question 3: What do you classify as gluten—what do you avoid?

Summer: All grains in general, so soy, wheat, rice, corn, and oats.

Lydia: Wheat, barely, rye, malt. Although barley malt hasn’t made me sick… I wonder if I’m only allergic to wheat and not barley and rye.

Sara: I stay away from anything risky because my sensitivity to gluten is so high. I absolutely cannot eat wheat, rye, barley or oats. What makes it difficult is that gluten can be in so many things: red food coloring, a lot of preservatives in drinks and candies. I also avoid anything I cannot pronounce on the first try. Also, I recommend to avoid dairy if you are going to slip up a bit and eat gluten—dairy makes the reaction way worse.

Jen: I classify gluten as wheat, rye, barley and malt. I also always avoid all types and never make exceptions. I also consider oats as gluten, as they are often farmed in the same field as wheat. But, I will eat specially grown gluten-free oats.

Question 4: What is your perception of GF diets for the masses (like the Atkins diet)?

Sara: I love that people are so interested in GF! The more people who are interested, the more opportunities I get to eat (as more companies produce better and a wider range of products)!! It’s a really healthy diet and I have heard from a large number of people that they just feel better after not eating gluten anymore, regardless if they didn’t feel like anything was wrong in the first place.

Jen: I have never been a fan of fad diets, so I don’t believe there is one type of food or one solution to a healthy diet. As in anything, I believe that gluten is appropriate in moderation, and whole grain wheat provides important diversity in nutrition.

Lydia: Do a GF diet it if you feel better! If you don’t have health problems related to gluten, you are just restricting yourself pointlessly. Avoiding gluten isn’t necessarily healthier. You have to see what personally benefits you. No harm done in trial and error!

Summer: I think everyone has his or her degree of tolerance for gluten. So if a person is even a little bit intolerant, they might benefit, but if they are perfectly tolerant, there is no reason to spend the extra effort and money to go GF.

Question 5: Any other insights on certain foods/food categories and health?

Sara: There are a lot of great bakeries that make GF options, and there simply isn’t anything better than being able to walk into a place expecting temptation and tourture and walking out with a cupcake that won’t make you sick.

Lydia: The best gluten free breads are Schar, Udi’s and Kinnickinick.

Jen: One time I went two weeks trying a pseudo-raw diet without eating processed or packaged food. I really felt a lot better, but it was too challenging. Since I don’t leave much time for cooking from scratch, I only was eating vegetables and rice and missed things like pasta, granola and yogurt in my diet.

A few weeks ago, the FDA released an announcement that it has (finally) created a gluten free label that will be regulated and enforced: products sporting this label must have no more than 20 parts per million of gluten in the product. (http://www.npr.org/templates/story/story.php?storyId=209265283) What’s your take on this ruling?

Summer: I’m for the new regulations on the labels. 20 parts per million is a very small amount… it would be like adding an 8th a teaspoon of flour to a loaf of gluten-free bread. I don’t think its likely gluten free manufactures would bother to do that, so I think the FDA has set a pretty high standard. Even if they were to add it, the gluten would be so saturated within the gluten free product itself it likely wouldn’t cause much harm. I would use the analogy that this is similar to the 99.9% of bacteria that anti-bacterial soap eliminates…that other .1% probably won’t get you sick.

Lydia: 20 parts per million is small enough for me. I am able to get away with eating non-GF labeled products that “may contain wheat”; they usually don’t make me ill. So, yes, I will eat things with a GF label!

Jen: I would ideally like to see it down to 10 or 5, but I understand testing for those amounts can be much more expensive.  As a celiac, every molecule of gluten I digest contributes to colon damage. I generally will eat products with the 20ppm labeling without any physical response, but to me it is not 100% “safe”.

A big thanks to you ladies for sharing your experiences and insight!


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