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PRx Host : |
Welcome to tonight's chat with guests Rich and Shelley Gannon. Rich is the quarterback for the Oakland Raiders. He and Shelley are here tonight to talk about raising their daughter, Danielle, who suffers from celiac sprue disease, a chronic digestive illness. Welcome to PlanetRx, Rich and Shelley.
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Shelley Gannon : |
Thank you!
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Rich Gannon : |
Thanks!
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PRx Host : |
Could you describe what celiac sprue disease is, for starters?
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Shelley Gannon : |
It's a malabsorption problem that occurs in the small intestine from a reaction to gluten, which is found in wheat, rye, barley, and oats.
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PRx Host : |
How did you discover that Danielle had the disease?
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Shelley Gannon : |
It took quite a while. We didn't know for about two months, and she was very seriously ill, going through many tests. Towards the end of these two months, we were told to go to a pediatric gastroenterologist. We ended up in the Children's Hospital here in Minneapolis that evening. They diagnosed it about three days later.
Once the GI doctor saw her, he seemed to know from the symptoms and everything that was going on that she needed to have this one specific test which is called an endoscopy. They actually take samples of the small intestine. What happens is that the villi in your small intestine are actually damaged. They can see that. What happens is that, when a person has this disease, their intestines become so damaged that they cannot absorb all the nutrients that they need from their food.
She was at the point where she wasn't absorbing anything. She was starving. Nutrients were going right through her. She was having diarrhea, constipation, throwing up -- all of this at the same time -- and, of course, was losing weight. The doctors labeled her as "failing to thrive." It was really a scary ordeal. They ran many, many tests. We were very happy to find out that it was something that we could actually treat with diet.
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PRx Host : |
It's amazing that after two months, it only took three days to get the correct diagnosis once you were in the right place. Why did it take so long to get there?
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Rich Gannon : |
One of the reasons is that it is often misdiagnosed. You don't know until you change the formula.
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Shelley Gannon : |
It can fall into so many other categories.
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Rich Gannon : |
You're trying all these things and the child isn't getting any better.
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sweety : |
Do you blame the doctors for taking so long to figure out it was celiac sprue disease?
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Shelley Gannon : |
No, not at all. My pediatrician here was doing every single thing she could to find out what was going on. It almost was masked at the beginning as a type of a virus or something. She wasn't showing poor growth, but towards the end, she was losing weight. In the beginning she wasn't.
It was kind of tricky, but they really listened to us. We knew something was going on, and they kept having us go down during the day to Children's Hospital to run tests. I talked to other parents who have waited a year to find out why their child is having slower growth and all sorts of problems -- slow walking, slow speaking -- all the kinds of things that happen when they aren't getting the nutrients they need.
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PRx Host : |
I understand that there are nearly one million people affected by celiac sprue. Why do you think it is relatively unknown to the general public?
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Shelley Gannon : |
In other countries, I've been told, there is so much more knowledge of it. Here, we're just starting to learn about it. I feel like [the need for] there's much more awareness. It's not a disease that needs to be treated by medications. It is treated by diet. If they follow the correct diet, they should have no problem. We're trying to raise awareness so people can realize that they may possibly have it.
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Rich Gannon : |
The Celiac Sprue Association has been helpful with public service announcements and other types of informative commercials to kind of get the word out that there's something that affects one in 250 Americans.
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PRx Host : |
We have another audience question.
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rozemaree : |
Is it genetic or caused by outside forces?
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Shelley Gannon : |
It's both. You have to have it in your genes, but it's brought out by something in the environment. From the reading we have done and what the doctors have told us, it's clear there's not a ton known about it. It's an autoimmune type of disease, perhaps brought on by a virus or some kind of trauma, like diabetes -- they even have some questions about antibiotics. But there's nothing for sure, so I don't know. People can have different levels or different degrees of celiac sprue. Our daughter happens to be very sensitive.
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PRx Host : |
So Danielle has a severe case?
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Shelley Gannon : |
Yes. After she was weaned and had begun to eat solid foods, it took about six months of exposure to gluten before she began showing signs that she was having problems with it. She is pretty sensitive, whereas other children might not show signs of an inability to tolerate gluten until they are much older.
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PRx Host : |
Another audience question.
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NancySev : |
How is she doing now?
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Rich Gannon : |
She's doing very well. My wife does an exceptional job in preparing her meals and buying groceries that she can eat. Danielle is growing like a weed, her motor skills are good, and she's right on schedule with other kids her age. We keep a close eye on what she eats and she does very well.
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Shelley Gannon : |
If she does get gluten, she will have some problems. She's been doing wonderfully well, although she's still at that stage where she may grab something and eat it, but she's learning really fast. Once she gets older, we'll be able to do a more strict moderation of her diet -- she'll be 3 in April.
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PRx Host : |
I'm so glad to hear it! We have some more questions from the audience.
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noglute : |
What do you tell Danielle when she wants to eat something she can't?
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Shelley Gannon : |
We tell her that it will make her tummy hurt and it will make her sick. I try to always have options for her. I bring things with me for her, so if somebody's having a special treat or a snack, I'll bring something very similar. I try to make home a real safe haven and as gluten-free as possible.
It was really tough at first, but now we've got the system down. We're all eating healthier because of it. We're eating more fresh fruits and vegetables and meats that haven't been processed. It's been great for our family, too. They can't eat any of the fast, quick meals. It's got to be more of the home-cooked-type meals.
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Caroline99 : |
Does your whole family eat the same diet?
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Shelley Gannon : |
I try to make dinners, but we have gluten-free pasta and regular pasta. There are certain products, like bread -- the family eats regular bread that I buy, but I make Danielle's bread in a bread machine, out of rice flour. I buy a mix from The Gluten-Free Pantry, which is a wonderful mail-order company. It's the best mix we've found, and it's really good. It's made with brown rice, it's nutritious, and it tastes almost like the real thing. In some of them, you probably wouldn't even know if I didn't tell you. There's a cake mix I buy, and pastas, and breads. Everyone here likes them. I've got some pretty picky ones, and they like them.
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rukoski : |
Do you find it hard to find the right foods?
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Shelley Gannon : |
At first, it was very challenging. There are several different celiac sprue groups, probably one in every state or area. Then there's a national organization. They sent us a ton of information about the diet. There are also a number of mail-order companies. Health-food stores carry many of the products that we need. Whole Foods carries quite a few gluten-free products. There are some in the regular grocery stores, but I do much better at the health-food store.
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PRx Host : |
I know that it can be very difficult for adults to accept when they are sick. Does Danielle understand her disease? How do you explain it to her?
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Shelley Gannon : |
We've always kind of told her that she needs to check with Mommy and Daddy before she eats things so she doesn't feel sick. She hasn't had a problem yet, or cried or felt bad, because I keep home really, really safe. If we go to a birthday party, I make her own cupcakes and bring those. She can have Reese's Peanut Butter Cups, they're gluten-free. She will always be happy about some sort of treat like that. If we didn't keep home a safe, gluten-free, environment, it could cause problems.
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JaneyLo : |
How do you let Danielle go over to friends' houses?
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Shelley Gannon : |
Usually I am with her. I'll just pack a snack. Some friends have talked to me about the diet and found out what she can have, and they try to buy those things. When she goes over to Grandma's house, I bring a bag of her kind of cereal to snack on. The key is just being prepared.
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rozemaree : |
Now that you have described the symptoms, I realize my little brother had a very similar problem years ago, but was never diagnosed. He recovered spontaneously. Are doctors more aware of this problem now? Why?
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Shelley Gannon : |
If he had celiac disease, he would never outgrow it. It may have been something different. When children reach puberty, their body will concentrate on them growing more than the disease. It will seem like they're growing out of it, but it will come back in later years. The research has shown that they don't know what kind of damage occurs in adolescence if children are consuming gluten. The idea is to remain on the gluten-free diet indefinitely so you don't have any of the complications that go along with it.
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PRx Host : |
Another question from the audience.
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rozemaree : |
Does any of the literature on celiac sprue imply that this condition may be due to all of the processed carbohydrates we eat in our modern diets?
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Shelley Gannon : |
I think the whole processed thing does cause this to be way harder than it could. They're adding modified food starch, which can either be wheat-based/flour-based or corn-based, to everything. There are hidden ingredients that contain actual flour that people would never even know about, but we know because we have to know. There are additives in cereals, there are colorings, emulsifiers, derivatives of gluten, malt flavoring, all the preservatives, MSG, and vinegars. It's all hidden in there. Even in small amounts, it can make a person with celiac disease very sick.
Then there's the cross-contamination issue. Say a manufacturer is making corn tortillas and we think they're OK for her to eat, but flour is put on the conveyor belts. That would make her really sick. We actually have to call the manufacturer to find out how the products are produced, and where.
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PRx Host : |
So even a tiny little bit of flour can make her sick?
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Shelley Gannon : |
Yes, she's very sensitive. One Cheerio could make her sick. But it's not like the peanut allergy, where they have to have those shots or they could die right then. It's not that scary, but it goes through her intestines and it can damage them and cause her pain and throwing up and diarrhea.
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PRx Host : |
Here's a great audience question.
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zrica : |
What would you tell other parents raising a child with a chronic illness?
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Rich Gannon : |
Well, I think the biggest thing is staying positive and trying to not treat her any different. We are very encouraging, but at the same time, we have rules and restrictions on what she can and can't have. I think she understands what that feeling of being sick to her stomach is like, so she's been pretty good in listening to us and what we have to say about her diet.
We try to be fair with Danielle and make sure we give her the same opportunities as our other daughter. We want to make sure she has a good time as well. If she is at a party and can't have any cake, we try to make it fair for her and make it the best experience we can for her. The other thing is that we try to not look at it as a handicap; we look at it as an opportunity for the family to eat better.
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Shelley Gannon : |
Find a great doctor. If you're not happy or communicating well with one, or they're not listening to you, keep looking. There are some great doctors out there, and some may know more about celiac disease or your children's problems than others. There are plenty of groups. We have gotten tons of information from other families who have children with celiac disease. There are local and national meetings, and if you get on the Internet, you can find access to all those groups.
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NancySev : |
Have the two of you considered going around to different places to speak on this to support parents?
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Shelley Gannon : |
We are going to do some things to raise awareness in whatever way we can. I don't know if right now we'd be able to travel around and speak. We have told the University of Maryland and the organization that's trying to do research that Rich would like to be a spokesperson for them to raise awareness and funds. It's hard, with young children and Rich's football, to be traveling a whole lot.
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PRx Host : |
Here's a question from a Raiders fan.
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GoRaiders : |
Are the Raiders doing anything to support her illness?
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Rich Gannon : |
Actually, that's a good question. Not specifically, but last year, I was elected NFL-Miller Lite Player of the Game and the Miller Brewing Co. donated $1,000 to the Celiac Sprue Association.
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PRx Host : |
Another one from the audience.
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aimhigh : |
Did your daughter's sickness affect your relationship?
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Shelley Gannon : |
No, not at all. We work together. It was very stressful and we didn't have time for much of a relationship when she was very ill. Once things were under control, our lives went back to normal. We were able to get together as a team and figure out what was wrong. That was our main focus for a while.
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zrica : |
Rich, do you cook gluten-free meals? What's your specialty?
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Rich Gannon : |
Well, I'm not a gourmet chef, but I do prepare gluten-free meals so that when Shelley is out of town, Mr. Mom can prepare meals that taste good and are safe for Danielle. Not a whole lot of cupcakes, but I can make a real mean pasta for her!
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NancySev : |
I am a Family Resource Specialist working with children ages 0-3 with disabilities. What would be the most important support I could give to a family with a newly diagnosed child?
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Shelley Gannon : |
Another parent who's gone through it. Team them up with a parent who's dealing with the same thing who lives in the same area and who would be willing to help.
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PRx Host : |
Did you have trouble finding people who had been through the same trials as you?
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Shelley Gannon : |
Actually, my gastroenterologist at Children's Hospital did a wonderful job of connecting quite a few of us. We have a support group here, and I'd like to start meeting some people in California, also. We meet once a month -- we just kind of started making it a permanent monthly thing.
We have about four new moms in our group. Our last meeting was a lot of the basics, and it's just great to be able to feel like you can make a difference for some little child who's struggling through this. There were some tears shed, but it was nice to know that you're not alone and that you're not the only one spending three hours in the grocery store reading every label.
We exchange tons of information on products that are safe, and recipes as well. Half of it is talking about the medical part of it, and half of it is talking about the diet itself. It's been our best resource. The doctors tell you, this is what she has, you need to stay on this diet, but they don't know anything about the diet. It's really a total mystery and hard to get a good grip on it. It may take a while to get to the gluten-free point, but you see the kids get better fast. You really can see it.
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PRx Host : |
We have a comment from an audience member, could you respond to it?
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mherren : |
I think it is wonderful that you have decided to share your experiences with others. As the parent of a child with a rare GI disorder, I've discovered that the hardest thing is to find another family who can say "I've been there, done that, and here's what may help."
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Shelley Gannon : |
Keep looking to find out if there's a group in your area -- you could look on the Internet, too. If not, I'd love to chat with you.
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anyhow : |
Did anything in you lives prepare you for this?
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Rich Gannon : |
We had faith in the Lord. Just knowing that things would work out for Danielle and that the Lord put us in touch with the right doctors and the right hospital after we found out what was wrong. We knew how to be aggressive: We did what we could through our research, and by talking with other families, we got a better understanding of what the diet would consist of.
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Shelley Gannon : |
I was not prepared for something like this -- I don't think I've ever prayed that hard in my entire life. It was one of the most stressful experiences I've ever had. I think all parents can relate when there's something wrong with your child and you don't know what it is. They're getting tests for every horrible disease you can think of -- it was pretty scary. When the actual thing happened, Rich was at training camp. He was away, and they let him come back for three days while she was in the hospital. I don't think I could have made it by myself. He wasn't there [at first], so it was hard for him, too.
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PRx Host : |
That sounds like it must have been very hard, especially not knowing initially what the problem was.
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Shelley Gannon : |
That was the scariest thing.
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PRx Host : |
Someone in the audience has had a similar experience.
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NancySev : |
I have three children with disabilities and I grieved at first upon diagnosis. Did you find yourself in this place at once?
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Shelley Gannon : |
I was very overwhelmed with the diet. I felt like I didn't have time to grieve right away. We try to stay really positive that she's able to still be healthy and here with us. Whenever we catch ourselves being bummed out about the disease itself, we just thank the Lord that they found out what it was and were able to do something about it.
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PRx Host : |
Sometimes that's all you can do. I know that in many families where one child is affected by a condition that requires a large amount of time or energy, the other child is sometimes overlooked. How do you avoid this in your family?
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Shelley Gannon : |
I have to say while she was very, very ill, there was nothing we could do -- we just did the best we could. You get friends or neighbors or family to help you out in those situations if you have them near. We did go through some of that, and it can't be helped, but Alexis is a little bit older, and she was able to help. She knows more about the diet than Rich and I! No, I'm teasing. She knows what's OK and not OK for Danielle to eat, and we praise her for helping out her little sister. She's a tough little cookie. She hung in there through the diagnosis, and it was a pretty traumatic time. Now things are pretty OK, but for a while there … you have to do what you have to do.
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PRx Host : |
It sounds like you and Rich are very on top of the trying feelings involved. How do you manage to be so centered in the midst of all this?
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Rich Gannon : |
We try not to look at it as a disease; we look at is as a condition.
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Shelley Gannon : |
We're not trying to make her feel different.
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Rich Gannon : |
We try to move past it. It's going to be something that's with us for the rest of our lives. We're not going to focus on the condition, we focus on the diet. We try to be positive and look ahead and raise our daughters as if they were healthy young kids with a healthy, bright future ahead of them. It's something that we have to be aware of and deal with, but we don't want to let it limit Danielle. We want our daughter to have a healthy and productive life and we want to give her the opportunity to be happy.
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PRx Host : |
That sounds like good advice for all parents, whether their children are perfectly healthy or not! Did you learn that from your parents?
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Rich Gannon : |
I think so. I think we all have certain limitations, and our strengths and weaknesses. I think that we can be much better served by being positive and having a positive outlook on the opportunities that are presented to us every day. That's how I want to raise my kids. I want them to feel that they can accomplish whatever they want. We want Danielle to have the opportunity to experience stuff like other kids. I don't want her to be treated differently, but she has to eat different foods.
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PRx Host : |
We have some more audience questions.
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zrica : |
This sounds a lot like raising a child with type 1 diabetes. Have you talked much with parents of diabetic children?
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Shelley Gannon : |
My mother is diabetic. I know quite a bit about that. There's also a mother in our group here that has a daughter who has diabetes and celiac disease. That could be a pretty interesting diet! It sounds like she's got a great grip on it. Her daughter's older, and she's been doing it for a while. Our situation is quite similar in that you need to really watch what's going on all the time -- what she's eating and her behavior. If there's a change in behavior, it means she may have gotten something.
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PRx Host : |
You may have already answered this question, but some people in the audience are wondering. …
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rukoski : |
Some people say oats are OK. What do you hear?
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Shelley Gannon : |
There could be a possibility that they are OK. This was from a Mayo doctor who spoke to our group here. He said that oats could possibly be OK, but because of the high cross-contamination issue, there are no pure oats to be bought right now. They rotate the crops, and there's wheat mixed in the oats. They're doing studies on it.
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PRx Host : |
You mentioned a change in behavior could signal a problem.
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NancySev : |
What kind of behavior changes do you observe when she has gotten a hold of the wrong food?
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Shelley Gannon : |
She will be hyperactive almost within an hour or two of eating something. I kind of figured it out, because she has gotten things a couple of times by accident. She will get hyper as can be, and then she will get very tired and crabby. The next day she'll be in a lot of pain. It takes a whole day for it to get into her system and it causes her a lot of pain. It's very uncomfortable.
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PRx Host : |
Does celiac sprue disease have any symptoms or side effects that develop independently of the gluten contamination?
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Shelley Gannon : |
Not unless it's hidden gluten. If she doesn't adhere to the diet, if anyone who has celiac doesn't adhere to the diet, there can be all sorts of complications later on from that.
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PRx Host : |
Can celiac sprue be a fatal if it's not diagnosed?
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Shelley Gannon : |
Yes. Back when they didn't know what the disease was, and during wartime, when grain was rationed, it was found that people who were sick from celiac would get better because they were eating other things. When rationing was over and they returned to eating grain again, they would become sick again. That was part of the process of figuring out what the disease was.
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PRx Host : |
We have a question from someone who has been following Rich's career.
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mherren : |
Was it difficult to change doctors and hospitals in your move to Oakland? Did it factor into your decision at all?
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Rich Gannon : |
No, not really, but it is difficult, and not only from the standpoint of packing up all the different kitchen items that Shelley has to have in the preparation of foods. Having to find new health-food stores and specialists, and a new pediatrician can be difficult. But the Raiders have been helpful in helping us find the very best doctors and healthcare professionals.
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PRx Host : |
It's great that you can depend on the Raiders for that support. Here's another support question.
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zrica : |
Are your daughters Raiders fans?
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Shelley Gannon : |
Yes, huge Raiders fans. They have Raiders cheerleading outfits and pom-poms. They scream and yell for Dad and the Raiders every Sunday.
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PRx Host : |
We are just about out of time. I want to thank you both so much for joining us and sharing your experience with everyone. I have no doubt that you have helped many people.
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Shelley Gannon : |
Thank you for having us! This is wonderful that you're doing this and raising awareness this way. We really appreciate it.
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Rich Gannon : |
Thanks again for the opportunity.
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PRx Host : |
We wish you all the best in the future with your children and careers! Audience members, be sure to look at the Celiac Sprue Association website. Thank you and good-night!
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