The Often Overlooked GI problem: Celiac Disease AM 570 KVI October 29, 2006 Michael Saunders, M.D. Shaynee Snider Annette Van Dyke.

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1 The Often Overlooked GI problem: Celiac Disease AM 570 KVI October 29, 2006 Michael Saunders, M.D. Shaynee Snider Annette Van Dyke Please remember the opinions expressed on Patient Power are not necessarily the views of KVI, our sponsors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you re your own doctor, that s how you ll get care that s most appropriate for you. A Mother s Story Good morning wherever you may be with us on the internet, around the country, around the world or here in kind of somewhat gray Western Washington. Today we're going to talk about something that really as my guest was telling me before the show has been one of the great masqueraders in medicine. It's called celiac disease, and it's a condition that happens in the GI tract, and it's where people have a reaction to gluten, wheat, barley, rye, things like that, often additives in food you didn't even know were there. And it can cause problems, often presents significantly with small children at infancy, but not always, and it develops in adults. And there's stories I heard of people where the kid gets diagnosed and then they check further with the adult, and the adult has it too, and say, oh, that's why I was having these stomach problems. So we're going to get answers for that. I want to thank the University of Washington Medical Center, Harborview Medical Center, Virginia Mason Medical Center for week after week sponsoring this program and making Patient Power possible not only for the Western Washington area but really all across the world as so many of you listen on the internet or on our website, patientpower.info. First I want you to meet a woman named Annette Van Dyke. Annette, welcome. And so Annette is a mom, and she lives in the Lake Stevens area near Everett, Washington. And you have a 15-year-old named Katie, but years ago when she was about five months old what kind of change did you see in Katie? Well, the changes occurred when she was about 10 months old, and it was right after her pediatrician said just switch her to whole milk. She had increasing stomach discomfort, crying, she had diarrhea and vomiting, and that would just increase in frequency throughout the day and in the months to come. 1

2 And what you found out was over time that your child had celiac disease, right? Yes. So since you found that out then you and your family have been having what kind of diet to help Katie lead kind of a normal life? Well, I don't keep flour, wheat flour in the house. I make my own flour mixture, a gluten-free you flour mixture, so anything I bake I bake with gluten-free flour. I make our own breads. So that's--in cookies, breads, anything home baked, that's what the rest of the family eats. We've also come to find that it's a lot easier and we actually like the taste better of the pasta, Tinkyada pasta, so it's just easier to make one gluten-free batch even though it's really expensive instead of making two pots. So with the gluten-free diet, though, Katie is going to have--she's a normal teenager without digestive problems now, right? Yes. If she gets ahold of something that she's not supposed to eat, she knows it within an hour. Okay. And that's what we might consider classic celiac disease. And I know you're active with the Celiac Foundation, Annette, and I want to thank them for helping people around the country know about our program, and there's a previous program we did with a pediatric gastroenterologist who is well known in the field, Michelle Pietzak, and that's on our website, patientpower.info. Just click on Topics, and there it is under celiac disease. So now I want to introduce someone else. And that someone else is Shaynee Snider. Shaynee, thanks for being with us. Shaynee s Story: Diagnosed After Pregnancy Shaynee: You're welcome. Hi. So your situation is different. You had a baby and then started to notice some GI problems for yourself. What started happening? 2

3 Shaynee: Well, I had always had some digestive problems that would sort of come and go and had been termed irritable bowel syndrome. And about six months after my daughter was born I had what I thought was just sort of a flare-up of that, a lot of abdominal discomfort, diarrhea. Usually that would pass in a day or so with anything I'd experienced in the past, but this kept going on for two to three weeks sort of in waves, and eventually I decided I needed to see a general practitioner to try to get some answers for that. And eventually you got to a gastroenterologist and you were scoped, if you will. Shaynee: Yes. And blood tests as well. And so what did that show? Shaynee: Well, the blood test had shown that I had elevated markers for celiac disease, which led the gastroenterologist to suggest an endoscopy, and the results of the endoscopy showed some inflammation to the cilia but not a significant amount of damage. I guess that could indicate either catching it--catching the disease before it had really had a chance to take off. In any case it was a lucky coincidence that I found it then, and I was able to start a gluten-free diet. Okay. So your doctor happens to be sitting here across from me, Dr. Michael Saunders. He's the director of endoscopy at the University of Washington Medical Center. So Dr. Saunders, the question is we have young infant Katie, very significant symptoms, and I think pediatricians are more and more alert to this now, but then you have adults who develop--could be this, could be that, not sure. So is it black in white in celiac, or is Shaynee an example of somebody where it's somewhere more on the continuum, I guess I would say. Those are good questions. I think Katie certainly represents what we are taught in medical school, the infant presenting with failure to thrive and all signs and symptoms and malabsorbed, maldigestive condition, whereas Shaynee, much more subtle. And I think that's what we're realizing now with celiac disease is that there is a continuum and a very variable presentation where patients can certainly present with very mild symptoms, different organ systems involved, and you have to have a high index of suspicion for it. Shaynee, as she mentioned, she was sort of diagnosed with a condition called irritable bowel syndrome, or IBS. 3

4 And very common. Very common, about 10 to 20 percent of the population depending on what epidemiologic studies you look at. And all IBS is is an altered abdominal discomfort with altered bowel habits, and that's very nonspecific. And what we are finding out is if you test patients in that group of IBS-like symptoms about five percent will have celiac disease, more so than any other organic condition, in fact the only organic condition that's associated with a higher prevalence than the IBS than normal controls. So many guidelines, Gastroenterologic Society guidelines suggest that really the only test that needs to be done in that group of patients with the patient's altered bowel habits, abdominal discomfort but no other warning signs or symptoms, the only cost effective test really is to look for celia disease. Okay. We're going to learn more about that, and this show is all about helping you or a family member be a smarter patient, and so we want to put celiac disease on your radar and now discuss it for adults as well as for kids and these sort of variable symptoms so you and your doctor can say, could it be that and when do we look further. How do we do that? We'll be back with much more of Patient Power right after this. Controlling Celiac Disease with Diet Welcome back live on AM 570 KVI. Andrew Schorr here with Patient Power week after week talking about chronic health concerns and cancer, things that affect you, your family, your neighbor. We're talking today about celiac disease. I didn't know much about it until my daughter started to have some GI problems. It turns out not to be that, but there are blood tests now that they have and certainly endoscopy to take a look and understand what the difference is. We're visiting with Dr. Michael Saunders. He's the director of endoscopy at the University of Washington so he's looking inside people all the time to see are there changes that are going on that could have been triggered simple by a reaction to gluten, and some of the things that we eat in bread and additives in food, could that be the villain here. So Dr. Saunders, it's sort of a curable or a changeable condition, isn't it? In other words, you take that out of the diet and you eat differently like Annette's family does or as Shaynee has done, and then the symptoms go away, right? 4

5 It's the only autoimmune disease that we know of the environmental trigger. So multiple sclerosis, diabetes mellitus, all these autoimmune conditions where we don't know the environmental trigger, celiac disease is the only one. And because of that it's the only autoimmune disease that we can treat and basically eliminate with dietary modification. So the bad news is you have to watch your diet pretty carefully in our society, although I guess there's some good news is that we're more aware of it and there are choices for people. And then the other good news is if you follow that gluten-free diet you live well. That's correct. The Genetic Connection Okay. Now, I want to get Annette back on here now. Annette, I think that the doctor had some questions for you, but as you were saying, though, Katie is doing well now. She's thriving where as an infant she didn't. Correct. Michael, you had some questions for Annette? Annette, thanks for coming on. I just want to ask you, I take it the family was all subsequently tested, and I wanted to know if any other family members tested positive for celiac disease. Yes. We have all had at least blood tests, and although my husband just a few years ago he had some gastro problems and he had an endoscopy, and he is negative for celiac disease. The rest of us through the blood tests are also negative. Okay. Tell us about why you asked about a family connection, Doctor. Well, clearly family history is the most important risk factor. There is a very strong genetic link with this disorder. Some of the largest studies performed in this country suggest that the risk in a first-degree relative is about 1 in 20. With the prevalence in the 5

6 general population, most recent studies suggesting it's half to one percent, so it's a very common disorder. She mentioned the blood tests, and the serologies now that we have for these, they're basically just testing antibodies for certain markers that are elevated in celiac disease, are actually very good and the sensitivity and specificity are well over 90, 95 percent. Malabsorption So I know the gold standard eventually is that they see somebody like you and you do endoscopy and look exactly at the tissue in the stomach, I guess. Or is it the stomach or other parts of the intestine? It's generally the small intestine. In fact celiac disease is unique in that it is the only malabsorptive condition--well, it's the most common malabsorptive condition that we see in the United States. And it typically involves the duodenum, which is the first part of the small intestine and then extends a variable amount downstream. So you can easily reach the duodenum with a standard upper endoscopy. And when you say malabsorption, then, is like they looked at that with my child because she was becoming anemic and seemed not to be absorbing iron from food. So would anemia be a possible sign of celiac disease? And what would be others? Sure, anemia, particularly iron deficiency because iron is best absorbed in the duodenum. So if you have any patient with iron deficiency anemia--out of reproductive age. It's very common for reproductive females to have iron deficiency, but certainly in a child iron deficiency would be very abnormal, and if there's no signs or symptoms of ongoing bleeding somewhere then certainly looking for a malabsorptive condition is important. Okay. And what others sorts of things would you not be absorbing? Well, certainly your nutrients. If enough of your small intestine is involved you may malabsorb proteins and fats and lose weight. So weight loss would be one. Vitamin deficiencies, vitamin D, calcium, so osteoporosis is another important sign of celiac disease. 6

7 Latent Disease Okay. Now, we talked about a family relative maybe having it too. And I do know a story of a man I think in his 50s where his daughter was diagnosed I think as a teenager, and then they checked him with the blood test you were talking about, and, sure enough, he was positive. How does this show up in adults? And can it show up in different ways where people were fine, never had any GI problems and Shaynee spoke about that, has a baby, and then starts to have problems. And also maybe you can explain in your answer does pregnancy trigger anything like this? Those are the $64,000 question. Pregnancy, certainly many hormonal and immunologic changes occur with pregnancy, and it's always hard to know how that affects immune regulation and functioning. It certainly wouldn't be implausible for immune changes to occur during pregnancy or as a result of pregnancy and an autoimmune disease then become manifest. And there's good examples of that such as lupus, another autoimmune disease that can occasionally be unmasked or worsened or aggravated by pregnancy. Now, what about it showing up as an adult? Can celiac be latent and not even known that it was there and then start to give you GI problems later in life? And what age would it show up at? Certainly we are now seeing it in adults, and it's estimated that about 20 percent of patients will present after the age of 60. Wow. So certainly at any age you can develop celiac disease. What we're finding out now, there really are three classifications of celiac disease. There's classic celiac disease that Katie presented as. There's silent or potential celiac disease, so patients with maybe an abnormal duodenal biopsy but really no symptoms. And then there's the latent celiac disease, where they may have genetic predisposition to it but have not developed the disease yet. Okay. And where do you put Shaynee where she had some symptoms variable? 7

8 I think Shaynee is a good example of a couple of important issues. First of all, you have to look for celiac disease. If you look for it, you'll find it, number one. Number two, whether her symptoms are caused by celiac disease is unclear. As Shaynee mentioned, her duodenal biopsy was pretty mild. There was abnormal chronic lymphocytic infiltration in her duodenum, but the villi were still maintained as far as their integrity. These are the little tissue that absorb things? The finger-like projections that absorb nutrients and things. And so the only way of knowing in Shaynee's case is to put her on a gluten-free diet. And that's actually part of the diagnosis, meaning you have to have a compatible duodenal biopsy and clinical response to symptoms with a gluten-free diet. And so time will tell whether Shaynee --in fact, maybe she can tell us whether she's feeling better. Gluten-Free Diet Shaynee, has the gluten-free diet worked? Or where are you with that? Shaynee: I went on it exclusively for three or four months, and ironically at the time that I began the gluten-free diet my symptoms had somewhat subsided to begin with. I wasn't sure how much of them could have been attributable to just the stress of having a newborn child and not sleeping terribly much. So I pursued the gluten-free diet and after three or four months had my blood work redone and the levels of the markers had come down and were within normal range at that point. So I have allowed a little bit of wheat to be reintroduced into my diet and have not noticed a reexacerbation of symptoms at this point. I'll probably continue with a largely gluten-free but allowing myself the occasional treat, as it were. So, Dr. Saunders, where I was coming from prior to the show, and I'm going to bring Annette on because she's involved with the Celiac Foundation too, I thought for people who had this problem with gluten that just like a crumb of wheat or barley, rye, gluten in some additive in some food, they have big problems, and I think you mentioned, Annette, Katie, if she goes off it does, but here we're hearing about people where maybe it's not so severe. Is it really celiac, or can it come and go? Or help us understand that. Well, again, it's a continuum. There are certainly patients like Katie who if they get an ounce of gluten in their diet they will have an exacerbation of their symptoms. But it's a 8

9 spectrum of disease, and Shaynee can obviously do well with a little bit of gluten getting into her diet. I guess the main question is is there risk for her doing that. Is strict gluten avoidance necessary? We're going to talk about that after the break. And I also want to talk about how people raise this with their doctor because I know that many physicians, particularly physicians who take care of adults, are less aware about celiac disease. You as a gastroenterologist and doing testing all the time are very aware of it, but that's not always the case. So how we bring that up. Stay with us as we continue with more Patient Power live on AM 570 KVI. Related Autoimmune Conditions Thanks for spending part of your Sunday with us on 570 out of Seattle. I am Andrew Schorr with Patient Power. And so whatever you're doing today, I hope you have a great day. I wish the Seattle Seahawks well against Kansas City. But let's talk about gastroenterology. So many of us have digestion problems at one time or another, and now we've put on your radar so to speak this condition, celiac disease, which affects more people than we realize. And we met Shaynee Snider who lives here in Seattle. And, Shaynee, you were just saying that you've tried the gluten-free diet to avoid certain things that maybe could be the bad actors in celiac, and you mentioned that you've been reintroducing wheat and things we all love into your diet. So the question for Dr. Saunders is, if she has some signs of this, or has at times, is it a good idea? Well, Shaynee and I have discussed this too in detail. Again she represents the other end of the spectrum, almost the silent celiac disease or potential celiac disease, and clearly I think if she was getting symptoms and ingesting gluten, we'd avoid that. The main question is is there harm? If she's having no symptoms, is she still doing harm by putting gluten in there every once in a while. And the answer is we really don't know. We do have some observational data that certainly micro nutrient deficiencies like iron and calcium can occur in patients with celiac disease who otherwise have no symptoms, and so monitors those closely, periodically checking her iron and calcium levels, making sure she's taking calcium. If you look at case control studies published, often from Scandinavia where they keep a nice registry of patients with celiac disease, there is an overall increased mortality in patients with celiac disease compared to the general population, but that clearly goes down when they adhere to the gluten-free diet. Now, does that mean a hundred percent 9

10 adhering to a gluten-free diet, or 90 percent, like Shaynee is doing? Mothers with untreated celiac disease have a risk of having low birth weight children, but again that's untreated celiac disease. This is almost completely treated or partially treated. I think another interesting observation is that patients with--or the level and duration of gluten exposure may be related to the development of other autoimmune disorders, and so that would be another argument to really try and avoid gluten. And I can't recall Shaynee, if she has other autoimmune disorders. I think she may have some thyroid disease. Anything else going on, Shaynee? Shaynee: I have a little bit of hypothyroidism, yes. Which is not uncommon in women. Shaynee: Right. And actually other autoimmune conditions associated with celiac diseases is quite common, so I suspect they probably are related. I think the thyroid predated well long before the celiac disease. So we're still opening the black box of celiac disease, learning a lot more about it. So many doctors have not known about it. And you mentioned earlier in the program, well, what we're taught in medical school, and your dad is an gastroenterologist and for all I know maybe he was one of your professors. He used to head the GI department at UW. And so what you're taught and now what you're learning. So you're a gastroenterologist, but it must be that there are a lot of interns around and other doctors throughout America who don't know much about this at all. I think it is off the radar, and we're trying to make it part of the adult physician's radar. In fact I've seen patients this year, that again this is the great masquerader part of celiac disease. One patient had a cardiomyopathy. No gastrointestinal symptoms at all but heart disease, unexplained heart disease in a young person and turned out to be celiac disease. A patient with unexplained neurologic symptoms and high fevers, no gastrointestinal symptoms except weight loss and had celiac disease. And so the extraintestinal manifestations, if you will, are numerous and it needs to just be thought of. 10

11 So is the way to think of it that our digestion and of course absorption of nutrients is so basic to who we are and our overall health that if that's out of whack or affected somehow by these substances, gluten and wheat and all these things, that you need to correct that, and then often you can correct the other things? That's true. The patients I mentioned with the unexplained cardiomyopathy, his heart has gradually gotten better, going on a strict gluten-free diet even though he had no gastrointestinal symptoms whatsoever. So something obviously was being malabsorbed, and the malnutrition and malabsorption led to primarily heart disease. So there you are, you hear about it on our radio show, on Patient Power, and you think, well, Dr. Saunders says this and that, and you go to the Celiac Foundation website, which I believe is celiac, c-e-l-i-a-c.o-r-g, and you learn more about it just to see could this be what's going on. How do people bring this up with their doctor? You mention there's a blood test. How do you see whether that's indicated, called for or even whether you should be referred to a gastroenterologist? That's what happened to Shaynee, she was referred to your department. Well, certainly not everybody needs to go see a gastroenterologist. A primary care provider can certainly initiate the workup for celiac disease. I think if a patient has any unexplained gastrointestinal symptoms, as I mentioned, the patient would be IBS-like symptoms, again the only cost effective test, not colonoscopy, upper endoscopy or CT scan, the main cost effective test would be a celiac panel, which is a blood test. And although any serology is not perfect, I mean there are false positives and false negatives, the sensitivity and specificity for these tests are well greater than 90 percent. Now, if a patient has a positive test I still think it's important that they get a small intestinal biopsy to look for changes of celiac disease. Foods to Avoid And then in the end you would change your diet, maybe be really strict about it, take all this out of your diet and then see how it goes, and you might see real change. Now, Annette, when we talked about--since you're related to the Celiac Foundation there, gotten so active, what are things that people need to avoid then? 11

12 The wheat, rye and barley. And to a certain extent people need to be careful with oats. Right now the Celiac Disease Foundation has changed their statement or has a statement on oats meaning that oats does not contain the gluten protein. What's the concern is the way it's grown and the cross contamination of oats. My daughter has since been--for the last couple of years has eaten oats now, and she's fine with it. But certainly wheat. Wheat and any kind of derivative of wheat, which is semolina, kamut. Right. So pasta for sure, so many pastas. Now, you go to the store, and we had on the lady who is responsible for the change in food labels nationwide, we had her on a few months ago, and that really made a difference. You now look at labels pretty carefully looking at food labels to see whether there's anything that's been added that could be a problem for Katie, right? Correct. Yes, I do, and those food labels really help because what I do is I just scan down immediately to the bottom where it's in bold where it says what the allergies ingredients are, and then I rescan again to make sure I didn't miss anything. Okay. What a great mom. But this is what you need to do though if you have these problems. And Dr. Saunders, that sounds right. You've got to be vigilant, right? You do, and I think these websites are extremely helpful too for patients. We certainly encourage consultation with a registered dietician initially, but patients generally become so well educated and get such good help from these societies that they become experts on their own. And I have a friend, he went many, many years before he was diagnosed. I think he's probably close to 70 now but a man I know who is very involved with the Celiac Foundation. So he's not embarrassed at all. If he's going to someone's home for dinner he brings his own special pasta that's made differently, and they all understand. Here comes Marv, and Marv follows a special strict diet, but it helps him be healthier. We love Marv, it's fine with us. And I think you can tell restaurants, you know, say, This is my special requirement. What do you have that can help me? 12

13 We're going to take another break, and we'll be back with more with Dr. Michael Saunders as we discuss celiac disease and how it affects in particular adults and again the symptoms you look for, the way you advocate for yourself Here we are again live on KVI. Andrew Schorr here as we discuss Patient Power and celiac disease, could that be what's going on with your digestion. And, Dr. Saunders, you have told me that it often shows up for people after the age of 60. That's true. A good proportion of patients present in adulthood. Okay. So what again they should be looking for would be change in bowel habits. Sometimes it's obviously chronic diarrhea and signs of malabsorption or maldigestion would be one. But it can be subtle. Anemia, blooding, gassiness that's new. Listener Questions Okay. Well, I have a few questions that we've been getting and some from around the country. So this one came from Green Bay, Wisconsin, Ann, said she heard somewhere that there could be a connection between celiac disease and increased chance of developed Alzheimer's. Have you ever heard of that? Sure, and neurologic associations with celiac disease are numerous. Schizophrenia has been linked to celiac disease, and I think Alzheimer's has as well. It remains to be determined how much of these are true, true related or are just coincidence of having common conditions. But again going back to what I said, though, it stands to reason that if over a long period of time you're not properly absorbing certain nutrients could that affect other systems in the body, in a way? Sure. 13

14 Okay. So then somebody writes in, this was Ken and Sherry Johns from Orange, California sent us an and they said, well, then therefore what about the importance of taking supplements? If I take a bunch of supplements could I maybe absorb those and that will help? As opposed to adhering to a gluten-free diet, I think that taking supplements instead of adhering to a gluten-free diet is probably not appropriate, but supplements in addition to a gluten-free diet often are needed. In fact calcium supplementation, iron supplementation would be very important things to do with patients with celiac disease. Okay. And Martha, you're on the air in Seattle. What's your question? Caller: My question is if you've been on the diet very faithfully for 15 years how long do you need to be off the diet for the damage to show? Good question. Good question, Martha. It depends. As Katie's case, it can be instantaneous where the patient gets symptoms. Usually the intestinal tract and the immune system responds pretty quickly, and within three to five days you can find abnormalities in small bowel biopsies. The other thing that's interesting is that it take a long time for things to normalize. It can be a year before a patient's duodenal histology looks near normal. In fact it often never does go back to normal. There are some subtle findings of chronic inflammation despite being on a strict gluten-free diet. So advice for Martha would be, though, if it's working, if it's not broke don't change it. I think that's right, yeah. Martha, so you're probably pretty good at it now, 15 years. Caller: I'm a pro. And I'm always real sorry if I ever go off it so there's the proof. 14

15 There you go. So keep playing pro golf with your celiac bag. Caller: Exactly. Thank you. Bye-bye. Other GI Conditions Her point and Shaynee's case bring up an important aspect of medicine, the art of medicine. There's no hard and set rules, and I think with Shaynee's case we'll watch her very closely for signs of nutrient malabsorption and maybe she can sneak in a little bit of gluten and have no damage done. So we'll keep a close eye on her. Okay. So I want you to help us differentiate though between the much more common condition of irritable bowel syndrome where you can have some of this. Maybe, I don't know if you have the absorption problems, but you can have diarrhea and just other things. You just don't feel very good. That affects millions of people. And there are over-the-counter products dealing with the diarrhea, the constipation, and people try to manage it. That versus celiac. How does somebody begin to say, well, am I in that five percent where that's really what's going on? I think it's hard to know. The symptoms can be very similar. Irritable bowel syndrome really belongs to a class of disorders called functional bowel disorders, meaning it's the function of the gastrointestinal tract which is abnormal, nothing structurally. So by definition it excludes signs of malabsorption or maldigestion or bleeding. And so patients with irritable bowel syndrome, it's generally thought to be a motility sensory disorder of the gut. We don't understand what causes it, and we don't have great therapies for it, but it doesn't change the length of someone's life. It can make their quality of life sometimes miserable-- And if you had an endoscopy it just looks normal. Completely normal. Okay. But when you do endoscopy on somebody with celiac you may see subtle changes like with Shaynee or dramatic changes. 15

16 That's true. So interesting points. Are there other things you want to point out to people so that they can come away from the show, Michael, getting the best care? Because sometimes people are just out there suffering and they've never heard of celiac, or maybe some relative who is diagnosed, they never thought it could be them too. Again, I think if they have chronic digestive complaints that sort of fall into the category of irritable bowel syndrome, most likely it is irritable bowel, and it's functional and it's a nuisance. But I think in that setting testing for celiac disease is reasonable, and a simple blood test is all that needs to be done. With one caveat and that is if a patient is on a self-imposed gluten-free diet that will maybe change the results of a blood test. So I would actually recommend that they don't do that, do a self-imposed gluten-free diet. Right. That's what I know, and we originally wondered about that for my daughter, that was exactly what we did. Elaine Monarch, who helps run the Celiac Foundation, she said don't go on the gluten-free diet yet. Let's see what things show. That's true. And the converse to that is there are many patients that have food intolerances, and maybe their functional bowel or irritable bowel is aggravated by certain types of foods, and I know of many patients that have actually felt better going on a gluten-free diet or a low carbohydrate diet, but that's not the same thing as celiac disease. Okay. We're going to come up with some final comments and maybe have time for just a few more questions if you want to give us a call at We're going to buzz through some questions real quick with Dr. Michael Saunders from the University of Washington. And let's see if we can get to Maureen from Issaquah. Maureen, you're on the air. What's your question? Caller: Hi. I don't have a question about celiac disease. I'm familiar with it. Good. 16

17 Caller: But I do have a question that kind of relates to it. My oldest child has Asperger's Syndrome, and my youngest child has probably some food intolerances that manifest itself through eczema and some breathing difficulties when he gets sick. And I'm wondering if it's possible for me to do some testing just take away foods and what would I do, how long would I take away foods? What would be the foods? I know that soy and dairy are common culprits of things like that. And would you suggest that, no, I should go to somebody like an allergist and have that done? All right. Let's find out. Dr. Saunders. Well, these are very difficult situations. True food allergies or food intolerances often are very difficult to sort out, and in fact in one condition that's called eosinophilic gastroenteritis where there is clearly an allergy going on-- My daughter has that, Maureen. Caller: Okay. Most often you cannot find the allergic trigger. To do so you often have to go on an elemental diet and gradually bring in certain proteins until you find the ones that causes it. The testing, there's skin testing and blood testing for allergies, those often are inaccurate. I would certainly seek the advice of an allergist though if this is something that's clearly affecting him rather than shooting in the dark a little bit. An elemental diet is not an easy thing to do. It's not very palatable. So I would certainly seek of advice of an allergist. I'll mention, Maureen, in a week I'm going to take Ruth where she's going to have patch testing, which is yet more sophisticated. Not everybody knows how to read it so you really have to talk to allergists who are familiar with this, although we have some great ones in the Seattle area. But you can go down this road, and obviously you're trying to make life-long changes, so it would seem like that would be a way to go. We're running short on time, but I want to thank you for calling. Caller: Thank you. 17

18 Good luck with it, Maureen. Caller: Thanks, bye-bye. Getting Appropriate Care Well, when we talk about food problems, celiac, others, there are a lot of people out there who are curious about this. So I want to go back to Shaynee and just get a comment. Shaynee, what would you say to people? You developed these digestive problems. What would you say to people to just make sure they get the care they need and deserve? Shaynee: I guess I would just say to trust yourself when you notice that something different is going on. I was very lucky in terms of the course of my diagnosis. I never encountered any resistance or dismissiveness from any of the physicians or medical staff with whom I dealt, although I know other people often have. When they come in with symptoms that are rather nebulous or nonspecific. But the greatest problem I had was even deciding whether I should seek professional help or was this just something, an exacerbation of life-long IBS and, oh, maybe I should just ignore it and it will go away. But if you really recognize that something different is going on go and try to find out what might be causing it. Well said. Well, I wish the best for you. Thank you for being with us today. And, Annette, what would you say? You approached it as a parent, but also your family looked into it too after Katie was diagnosed. What would you say to people so they get the best? Well, first of all, the most important thing would be to read labels. And that means read labels every time you shop because products do change their ingredients. And secondly, one thing we've tried to emphasis with our daughter is we go to places for the event, not the food. We're not afraid to bring food for her. We're not afraid to ask ahead of time what kind of food will be served, but we're there mainly to celebrate the event. Good point. 18

19 And be happy that way. Thirdly, this is a saying with the Celiac Disease Foundation, when in doubt, do without. If you're at all not sure what's in the ingredients just don't eat it. Okay. Good points. Annette in Lake Stevens, we wish you, Katie living with celiac, and your family all the best. Thank you for being with us today. Thank you very much. Okay. And Dr. Michael Saunders, we have just a brief amount of time. Any final comment from you? Well, I think this is a disorder we're recognizing more frequently. Again the National Institutes of Health published a consensus statement about a year ago estimating the prevalence of 0.5 to 1 percent in the general population. That's much higher than we thought it was beforehand. And the bottom line is if you look for it, you will find it. Okay, folks. Celiac disease, if you want to learn more, that's celiac, c-e-l-i-a-c.o-r-g. Take a look at the Celiac Foundation's website. Dr. Saunders from the University of Washington Medical Center, thank you for being with us, sir. Also University of Washington Medical Center and Harborview Medical Center and Virginia Mason Medical Center, great sponsors who help us do this. And if you go to one of those places for care give them a big thank you because they make this possible. The replay of this program will be on patientpower.info tomorrow afternoon so tell your friends. We wish you and your family the best of health. And remember, knowledge can be the best medicine of all. Have a great week, everybody. Please remember the opinions expressed on Patient Power are not necessarily the views of KVI, our sponsors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you re your own doctor, that s how you ll get care that s most appropriate for you. 19