Embracing Celiac and FAQ

The Story

Many of you know that I started this year on a gluten-free journey with Jaden in hopes of finding a solution to his constant illness. He missed all but 3 days of school in November and I was called to pick him up from school several times in November and December. (His teacher said he was like a limp rag and unable to work.)

After the 3 week trial diet we found that I too was reactive to the gluten. Then we tested Dallin and he joined us on the journey (although his digestive tract was less reactive his moods were violent). Allison, a Celiac dietician, believes that our moods are an outward expression of the war that is raging within our bodies.

In February we went to Guatemala. I got so sick that we decided I should see a Celiac specialist and have an endoscopy/colonoscopy. During which they took a biopsy and found that my small intestine is paralyzed.

We received the results of the biopsy this week and I learned that I have Celiac Disease. I thought it would be an easy transition to go from gluten-free to gluten-free with Celiac. I was wrong. There was something devastating about being told that not only can I not have gluten, but even the slightest trace will be like swallowing a spoon full of glass. 

I'm not sure why that was so difficult to hear. Maybe because I still have a shelf in the storage room of gluten-filled foods. Or maybe because I wanted my childrens' chances of having it to be lower. Either way, I shed some tears and am now ready to move on.

The Transition

Making our home gluten-free is a challenge that will take time, but there are several obvious items to go (like the toaster and all our plastics).

The hardest thing to get rid of? Yes, our good old Friday-night-friend who we've faithfully made the best sourdough pizza on for many years.

Goodbye dear Pizza Stone…

Eating out is a lot harder but pizza and lettuce wraps are yummy. We just ask them to put new gloves on when fixing our food. It helps to let them know we are not tolerant of gluten rather than just a part of the huge GF fad for weight loss.

And so the easiest thing to embrace? The Jimmy John's Unwich!

Jimmy John's Unwich 

FAQ

I have been asked many questions about Celiac and gluten-intolerance and often the answer has been "I really don't know". So I made lists of questions to ask the *Celiac Specialist, Dr. Ligorria in Guatemala, and the *Celiac Registered Dietician, Allison Morotz in Pocatello (who by the way is amazing!)…she even answers my texts from the grocery store when I don't know what is gluten-free.

*I tried to write their answers as quickly as possible so that I could remember them word for word. However, they aren't exact.

Q. What is the difference between Celiac and gluten intolerance?

A. There are 3 types of gluten reactions. 

• Celiac Disease- This is an autoimmune response where your body attacks the tissue of the small intestine when there is gluten present and interferes with the absorption of nutrients in the food. This is called Villous Atrophy.
• Gluten Intolerance or Non-Celiac Gluten Sensitivity (NCGS) is a condition where your body reacts to gluten with diarrhea and bloating but there is no damage to the small intestine (although some studies have found damage to other organs).
• Gluten Allergy is when your body sends histamines to fight the gluten off. A gluten allergy can cause a life-threatening reaction to gluten.

Q. Is the damage in my intestine permanent?

A. Villi normally stand straight up and grab all the nutrients they can. With celiac they lay flat because they are sick and damaged. They are usually good at rebounding and absorption rates improve. Permanent damage is rare.

Q. Will I be able to eat gluten once I detox or repair my digestive system?

A. No. Regardless of which of the three previously mentioned conditions you have, you should never eat gluten again.

Q. What foods have gluten?

A. Wheat, Barley and Rye (although often oats contain traces because of where they are grown and processed).

Q. What happens if I continue to eat gluten even though I have Celiac Disease?

A. Eating gluten as a Celiac can cause permanent damage to the small intestine, malnutrition, miscarriage in pregnant women, colitis, as well as thyroid disease, osteoporosis, other autoimmune diseases and cancer.

Q. What are the chances of my children having Celiac?

A. First degree relatives (siblings and children) have a 15-30% chance. Some studies have shown that it can be more common among siblings because while it is genetic it can be environmentally triggered.

Q. How do I explain this to others?

A. You can't. Everyday is different because your body is in internal chaos. No one can understand that constant discomfort and many prefer not to believe it is real. What matters the most is that you do what is best for yourself and your family.

Q. Is it unhealthy or unfair to my family to have a gluten-free home?

A. No. There is absolutely nothing wrong with a gluten-free diet.

Q. How do I make sure we are getting the nutrition we need?

A. With Celiac you cannot meet your bodies' needs with just the food you eat. You NEED a multivitamin!

*Allison suggests: Children's chewable multivitamin

•       1 per Child; 2 per Adult **EVERYDAY**
•       As you chew it is absorbed by your mouth and stomach before hitting your intestines
•       Chewable. No Gummy because the gelatin can bind nutrients.

Q. Is it truth or myth that you can develop an intolerance to gluten when you don't eat it regularly?

A. Myth. "Removing gluten won't make you gluten intolerant."

Q. Can I only eat foods labeled "Gluten Free"?

A. No. "FDA law requires any food item containing wheat or gluten must declare it on the label. Usually seen under the ingredient list."

Q. How can you be overweight and have Celiac?

A. Being overweight can go hand in hand with malnutrition. Fat is easily absorbed. Your body will not give up fat stores until it starts getting nutrients.

**My disclaimer…there is so much information out there on the internet so I decided to talk to the specialists. They did tell me that Celiac changes every day, so what I write today, which they told me several days ago, could be changed tomorrow.