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Celiac Disease - A Mother's Perspective

A Mother’s Perspective: Danna Korn Tells Her Story
and Offers Advice

Danna Korn is considered one of the foremost patient experts on celiac disease and living gluten-free. Danna has been researching celiac disease since her son, Tyler, was diagnosed in 1991. That same year, she founded R.O.C.K (Raising Our Celiac Kids), a free support group for families of children on a gluten-free diet. Today, Danna leads nearly 150 chapters of R.O.C.K throughout the U.S. Her books include Wheat-Free, Worry-Free: The Art of Happy, Healthy, Gluten-Free Living, Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children, and Living Gluten-Free for Dummies.

Danna Korn is a paid consultant of Prometheus Laboratories Inc.

  

Danna Korn

Click on the links below to see Danna’s answers to questions about her experience with celiac disease and her advice for adopting a gluten-free lifestyle.

Danna and Tyler’s story

About celiac disease and the gluten-free diet


Tyler’s initial symptoms and doctor visits

When Tyler was very young, around six- or seven- months-old, he started developing very severe diarrhea. Being the first-time mom that I was, I ran to the pediatrician, and they said it was normal, that kids get diarrhea. They told me not to worry. But I was worried. He had a lot of ear infections at the same time, and they said the antibiotics for the ear infections could be causing the diarrhea. They said to come back in a few weeks if it didn’t get better. Well, it didn’t get better, so I came rushing back. They looked in his eyes, nose, and mouth, and I thought, “That’s not where the problem is!” It just went on and on. They kept telling me not to worry and sending me away. After several weeks of this, I just kept calling and trying to get in and, at one point, they would not accept me in the office again. They said there was nothing wrong with Tyler and that if I was going to continue pressing the matter, I would be “excused” from the pediatric practice as a patient. So, in a way, we were fired!

After that, we went to another doctor, who agreed with the first one and said there was nothing wrong. He actually took my hand and said, “Don’t worry about it, honey. Mommies get neurotic about diarrhea, and there is nothing to worry about. It will go away. Just give him lots of crackers and bread.” I tried to be patient, but it did not get better. I was going through a case of diapers per day. I tried a third doctor, but got the same response. At this point, I was ready to give up.

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Tyler’s diagnosis

Finally, I ended up in the hands of a fourth pediatrician. This was about nine months after our initial doctor visit. I actually took Tyler to this new doctor for an ear infection because I’d given up on the diarrheaissue. At this time, Tyler had a huge, distended belly. His arms and legs were skinny, and he was tired, listless, and unhappy. This fourth doctor said he’d look at the ear infection, but he wanted to look at Tyler’s stomach first. He thumped on his belly and said, “An ear infection is the least of your problems right now.” He said we had to immediately take Tyler to the children’s hospital. They were extremely concerned, and I was terrified, though excited in a way because someone was finally listening to me.

At the children’s hospital, I was fortunate to have a gastroenterologist who was an expert in malabsorption conditions. And remember, that in 1991, we didn’t have blood testing for celiac disease, so his doctor did several tests, and some of the tests were invasive as he even did an intestinal biopsy. This process took several months to actually confirm a diagnosis. We learned after the biopsy, that the villi on Tyler’s small intestine were “blunted,” which is what happens when people with celiac disease consume gluten. Villi are responsible for absorbing nutrients. We removed gluten from his diet for six months. A second biopsy showed the villi were healthy. To confirm the diagnosis, they had us put him back on gluten, then do another biopsy to see the negative effects. The doctor finally came back to me and said, “I have a confirmed diagnosis for you, but it’s not going to be an easy life for you or your child. He’s got a very rare condition called celiac disease.”

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Learning about gluten

At the time Tyler was diagnosed, they thought celiac disease was a very rare, pediatric disorder. The doctor said we could no longer feed him gluten, but he had no idea what that meant. He said I should speak to the hospital dietician. Well, the hospital dietician didn’t know anything either. When I mentioned gluten, she said, “You must mean ‘glucose’.” She also said she’d never seen celiac disease in a patient before, but she dug through her files and found a sheet with 7,538 things Tyler could no longer eat. On the other side, there were four things he could eat. Of course, this wasn’t accurate. They had listed Corn Flakes and Rice Krispies as “allowed foods.” They sent us away, saying they didn’t have much information for us. Keep in mind this was before the Internet. There were no books written about celiac disease or gluten-free diets. Therewere no support groups. All we knew was that feeding him gluten was “like feeding him rat poison.” We didn’t know what gluten was. I was totally terrified to feed my own child.

What is gluten?

Gluten is found in the cereal grains wheat, rye, and barley. That means flour and other wheat-based products contain gluten, but so do many foods you may not suspect, such as soups, soy sauce, sauces, cold cuts, and gravy. While oats don’t contain gluten, they are often contaminated, so unless they’re declared gluten-free, oats should be avoided, too. It’s important to regularly read food labels and talk to a dietician to find out what you can include in a gluten-free diet. Get information about gluten-free foods and diets.

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Feelings and frustrations after the diagnosis

My feelings after the diagnosis were bittersweet. On one hand, there was a name to go along with the problem. In an odd way, that was comforting. It was a relief. On the other hand, I was terrified to feed my child. As a mom, your job is to love and nurture, and I was afraid that I was going to poison him. It was terrifying and frustrating, and I wallowed in that for about an hour. Then, I realized he was hungry, and I was going to have to figure out how to feed him. I asked him what he wanted for snack time and he said, “Crackers!” Clueless, I started down the crackers aisle at the grocery store. I read ingredient labels. I thought I was fine because I didn’t see “gluten” listed, but then I remembered that hospital dietician’s list. I realized flour is gluten. I had to put the crackers back. Tyler was impatient and starving. I was determined to find something for him to eat. Turns out, Fritos seemed safe for him to eat. I must have hugged every person in the store when I discovered that. I was so happy I put seven bags of Fritos in the cart. That’s what he ate for three days. We were on our way! I knew there was no room for me to get depressed about his disease; I just had to deal with it. And we have!

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Helping Tyler take responsibility for his diet

When Tyler was about 18-months-old, we would “read” every nutrition label together. Of course, he couldn’t actually read, but I was telling him at the time that we were reading to see if there was gluten in the food. I would ask him, “Do you think this is something you can eat?” He would decide “yes” or “no,” and he would be wrong half the time because he was guessing, but at least he was engaged. This helped him learn pretty quickly what he could and couldn’t eat.

More importantly, he learned that he really liked apples, or grapes, or other healthy snacks that don’t require reading a label. I remember sending Tyler to a friend’s house and she told me he didn’t want the cookies she offered; he wanted fruit instead. He was only five-years-old and already so responsible. Even at that age, it was natural for him to say “No, thank you” to cookies, which amazed me!

Of course, it’s normal for kids to cheat, and Tyler did. He went through a period when he was 17 or 18 years old when he did cheat. But, he felt the effects of it. He saw for himself that eating gluten made him feel horrible, and he went back to his diet.

The thing is that Tyler has never liked to make a big deal of his diet, so I never made a big deal of it. We just accommodated his diet as best we could. If there was a pizza party, for example, we would stick to the salad bar. Interestingly, as a teenager, he decided to tell his good friends about his diet, and they said they hadn’t even noticed he ate differently. Together, as a team, we’ve really made it work.

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The under-diagnosis of celiac disease

In my opinion, the under-diagnosis could be a result of the training doctors receive in medical school. My brother went to medical school and they spent about five minutes on celiac disease. Celiac disease is the most common genetic disease and they are spending five minutes on it! So, I think that’s where the problem starts. Plus, in those five minutes, they only review the classic symptoms – diarrhea, failure to thrive, andother gastrointestinal issues. And yet studies now show that the majority of patients don’t have gastrointestinal symptoms. So, many people with headaches, or fatigue, or iron-deficient anemia, or depression, or fertility issues are being missed.

All of those are symptoms, but these symptoms aren’t always taught in medical school as being associated with celiac disease. If you go to the doctor and say you have migraines, they are not likely to test you for celiac disease. If you go to the doctor and you are overweight, they are not likely to test you for celiac disease (though many patients with celiac disease are overweight). If you are depressed, they probably won’t test you for celiac disease. They will be far more likely to put you on an anti-depressant. The lack of knowledge of all possible symptoms of celiac disease means many people are not getting diagnosed, and don’t know how much a gluten-free diet could improve their lives.

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Recognizing symptoms and going to the doctor

Diarrhea, constipation, gas, bloating, or an inability or desire to eat are all classic red flags. Sometimes, children may become anorexic. If your child is underweight or shows a failure to thrive, that’s a sign that something is wrong. Of course, these are all “classic” symptoms. There are many other symptoms that may mean celiac disease – depression, fatigue, headache, to name a few. As a parent, tune into your child’s disposition. If your child is acting irritable, tired or listless, these are also red flags for celiac disease.

Also, remember that celiac disease is not a pediatric disorder. Many adults develop celiac disease. It can be triggered at any time, and it’s actually more common in adults than children.

Most importantly, if you see red flags, go to the doctor! And don’t be afraid of your doctor! Do your homework and know the symptoms and the tests and don’t hesitate to discuss these with your doctor. Many doctors still believe celiac disease is rare and will be hesitant to test, but if you know something is wrong, push for a test. It is important to be informed. Know that celiac disease is the most common genetic disease. It could be inherited from one parent or both. Often, families don’t know where it came from – maybe they have a relative with celiac disease, but maybe they don’t. Or perhaps, they have relatives who haven’t been diagnosed. It’s important to find out your own family history, and communicate this to your doctor. The more knowledgeable you are, the more seriously you will be taken. You are your own best advocate!

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The importance of testing

Testing for celiac disease has become so much easier since Tyler was diagnosed. I’m a big advocate for proper testing. Some parents will just remove gluten from a child’s diet to see if that improves the situation. This seems like a good idea, but the problem is if gluten is removed, a conclusive test can’t be done. It’s important to get a test that will confirm a diagnosis so you know for sure what’s going on.

With blood testing, sometimes doctors will only order a partial panel. Make sure to get a full panel, including total serum IgA for IgA deficiency, and anti-gliadin (AGA), anti-endomysium (EMA), and anti-tTG antibodies. Once the blood test is done, try the gluten-free diet. It is a very healthy if done correctly. There’s no reason to hesitate about trying a gluten-free diet if you suspect celiac disease. It’s just important to get a confirmed diagnosis.

Also, it’s important to note that one test result is not the be all and end all. Many times, children under the age of two will show a false negative. They may not be old enough to show the antibody response. Doctors will not always tell you to come back and get re-tested. If you suspect celiac disease, because of symptoms or family history, you should take it upon yourself to get tested again. Celiac disease can be triggered at any time and at any age. Proper testing is really crucial.

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The post-diagnosis “To-do” list

After getting a diagnosis for celiac disease, there are four things you should do:

  • Educate yourself. Make sure to find credible sources. There are a number of excellent websites and books with accurate information.

  • Educate people around you. Keep a positive, upbeat attitude. Consider the fact that being diagnosed with celiac disease is giving you the key to better health! If you are a parent of a child diagnosed with celiac disease, you absolutely have to realize that everything your child feels about his or her condition will be based on how you present information not only to your child, but to other people as well.

  • Incorporate as many “normal” foods as you can. This includes junk foods, like Starbursts, M&Ms, and some varieties of Doritos. It’s important, for kids especially, to eat the same foods as their friends. They may not be able to eat the same breads, but they can enjoy other treats. If you are a parent, always have a treat trade at school for the teacher to give if there is a surprise party, so that your child doesn’t feel leftout.

  • Take responsibility. Don’t feel that anyone else needs to accommodate your diet or your child’s diet. It’s not anyone else’s job to meet you or your child’s dietary needs. Empower yourself with the gluten-free diet and see that you can still live a very “normal” life.

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Eating gluten-free

The conclusion I’ve come to is this: if it’s man-made, don’t eat it. If you stick with natural foods – fruits, vegetables, meats, fish – you’re doing great! These days, finding gluten on ingredient labels is easier, and there are websites and toll-free numbers to find out if you’re not sure. Most customer service people know about gluten-free diets now. One important note is that ingredients in products change, so keep checking for gluten. Because of changes in products, it really is easier to just stick with the natural rule. Eating natural foods is the easiest way to be gluten-free. Of course, kids need junk food, so I encourage parents to check the labels and call the companies to make sure certain treats are okay for their children to eat.

There are also books with great menu ideas for gluten-free diets! It really can be fun to eat gluten-free!

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Teaching your child to eat gluten-free

My philosophy is that the child should be in control from day one. Even if the child is two-years-old, that child needs to know that he or she is in charge. If your child is diagnosed at an early age, the message should be something like, “you get to eat some special foods!” Make a point of saying how tasty the foods are. Teach them sound bites, like, “I can’t eat wheat, rye, barley or oats,” so they start to learn about what is good for them, and what’s not. Also, you may want to associate any time they don’t feel good with having eaten gluten. The lesson ends up being that “gluten is the bad guy.” When children are young, they don’t really want to cheat. They tend to follow their diet. It’s when children get older that they may want to stray.

By the time they are eight-, nine-, or ten-years-old, you as the parent will have less control over what they eat. That’s why it’s important to have laid a good foundation early on. That way, your child is empowered to make good food choices. With older children, it’s important to keep giving them knowledge. Knowledge is the power they need to keep them on track. It’s just like any of us who want to engage in unhealthy behavior, whether it’s eating donuts or smoking cigarettes. Once we know how bad these things are for us, we are less likely to do them.

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Dealing with social situations involving food

There is no reason celiac disease should limit social events. You should continue to go to restaurants and to live a normal life. These days, many restaurants have started adding gluten-free options to their menus, so that’s a big plus. Even if restaurants don’t have gluten-free options listed, it’s really not hard to find something – steak, baked potato, chicken (without any breading). With other events, like holidays or parties, there are so many good products that are inherently gluten-free, so it’s pretty easy to adapt. For example, at a birthday party, instead of having cake, have an ice cream sundae. Nearly all ice cream is gluten-free, and ice cream is completely “normal” for a birthday party. Most people don’t even notice the food choices of a person with celiac disease as being “different.” It’s important to remember that social situation are not about the food!

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The family’s diet

Many people want to know if their entire family should adopt a gluten-free diet if a child is diagnosed. I would say this isn’t necessary, or even advisable. First of all, it’s important to have gluten in the house for a family, unless every member of the family has celiac disease. There are many reasons for this. You want your child with celiac disease to learn to be around all kinds of foods. If they are surrounded by only gluten-free foods, they won’t learn to distinguish what’s safe from what’s unsafe for them. With many foods to choose from, they are empowered to make the right decisions!

Second, kids have to learn that the world eats gluten, including maybe their parents or their siblings. Nobody is trying to make them feel badly about this; it’s just a fact, which can be learned in a very loving way at home.

Lastly, if siblings or parents adopt a gluten-free diet for the sake of the child with celiac disease, they could end up resenting that family member. It’s important to keep family relationships as healthy and normal as possible. Celiac disease does not, and should not, change the way people go about their daily lives.

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Teaching others about celiac disease

If your child is diagnosed with celiac disease, it’s important to give information to the daycare provider or teacher. The more information, the better. They should know that celiac disease is something to be taken seriously. It’s not an Atkins diet, or other fad diet. We didn’t decide to just take away bread for no reason. Also, for classroom parties, arrange with the teacher to have a treat trade on hand with goodies for your child to enjoy. This way, when someone surprises the class with cookies, your child isn’t left out.

Also, make sure to have a positive attitude when talking to your child’s teacher or daycare provider. Your child may be listening and if you say, “I’m sorry to be such an inconvenience,” the message is that celiac disease makes life difficult. This could make the child feel badly. And, the truth is that celiac disease does not have to make life difficult!

It’s also important to teach family members. Some family members may offer gluten-containing foods as a “treat.” They’re not doing it maliciously. They mean well; they just need to be educated. Of course, mistakes happen, and it’s important for parents to understand this and not overreact. The more educated the child is, the better the chances that mistakes will not happen. The child will be able to say “no” when offered something with gluten in it.

With friends, there is a need-to-know rating that you assign people. You can’t rely on others to accommodate your child’s diet. You and your child have to take responsibility. As your child gets older, he or she may want to tell certain close friends, and that’s entirely their choice.

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Medical complications

If people with celiac disease stop eating gluten, they are happy and their health is fully restored. If they continue to eat gluten, especially on a chronic basis, then they are doing damage. They are destroying the villi on their small intestine. This can lead to malabsorption of nutrients, anemia, and other problems. When continuing to eat gluten, people with celiac disease may develop associated auto-immune conditions, some of which are irreversible.

As a parent, you have to be careful to talk about these long-term complications that result from eating gluten. Teenagers, especially, need to know about these complications. They may be tempted to cheat on their diet, and if they know that there are long-term repercussions of eating gluten, they may be more likely to stick to the plan. At an age-appropriate time, have a sensitive conversation with your child or teenager about the effects of eating gluten over time.

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Psychological implications

Kids with celiac disease usually go one of two paths. The first path is usually paved by parents who have a positive attitude and have been proactive about finding gluten-free foods and maintaining a “normal” life. These kids usually end up being advocates for the gluten-free diet themselves. They are very knowledgeable, empowered, and in control.

The other path is one of fear. Some kids grow up very intimidated by their disease, and unsure of what to eat. They are afraid to go to restaurants or social functions involving food. These kids are not empowered with the knowledge of what they can and cannot eat. They often turn to their parents to tell them, instead of taking charge and building their own confidence.

Celiac disease is nothing to fear. Eating gluten-free does not have to add great complication to the life of the child or the family!

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Long-term management

Celiac disease is 100% manageable over time. Having said that, patients should probably have a follow-up blood test once a year in my opinion, to make sure they are complying with the diet. If they are following the diet, they should feel the benefits. Most people will feel healthier than they’ve ever felt in their lives once they start on a gluten-free diet.

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Getting support: R.O.C.K

R.O.C.K (Raising Our Celiac Kids) is a free support group. There are no dues or other fees. It has grown to include 150 chapters in and throughout the country and Canada. Some chapters have up to a couple hundred people in them. We give kids a place to go where everything is gluten-free, and we give parents a place to exchange information and discuss new product ideas, tips, and tests. It’s avery fun atmosphere, where we celebrate the gluten-free lifestyle.

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Other resources

There are three great books with information about celiac disease and living gluten-free:

Living Gluten-Free for Dummies by Danna Korn
Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children by Danna Korn

Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children by Danna Korn
Living Gluten-Free for Dummies by Danna Korn

Wheat-Free, Worry-Free: The Art of Happy, Healthy, Gluten-Free Living by Danna Korn
Wheat-Free, Worry-Free: The Art of Happy, Healthy, Gluten-Free Living by Danna Korn

There are a number of great websites, in addition to online forums. Though you should be aware that forums are not an absolute source for medical information, they are a great place for people to get together and share thoughts and ideas. SillyYaks and CeliacKids are two Yahoo groups I suggest. For newsletters and other support ideas, check out www.CeliacKids.com.

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