Strategies for maintaining a 100% gluten-free diet

Michelle Melin-Rogovin, Program Director, University of Chicago Celiac Disease Program

My mission is to be a bridge between patients and doctors. There are a lot of things we say to doctors that they don’t hear. And there are a lot of things that doctors say to us that we don’t get. It’s not that there aren’t good intentions, but I think there is a lot that doctors need to learn. There are tips and hints and ideas and information that can help you as you go to your doctor to be happier and healthier. Not only in taming temptation, but in general as someone who has celiac disease. I want you to know that today, after my presentation, I can answer and talk to you about any questions that you have. I am here to help you and provide you with the information you need, and you will tell me what I can do to be more useful and helpful for you.

What is celiac disease?

I think this is important, and I find this to be the case wherever I go, that if we are going to be talking about celiac disease, it will be helpful to establish some pieces of information right up front. It doesn’t matter where I go in the country, people have different levels of knowledge about celiac disease, and it’s going to be helpful for us to establish a baseline, a place to start from in order to talk about taming temptation and some of the other issues you may be interested in. I know everybody rolls their eyes and thinks “I have celiac disease. Of course I know what celiac disease is.”

Celiac disease is a genetically inherited autoimmune disorder that can develop at any age.

But it’s important to realize that celiac disease is genetically inherited. Unfortunately, we do live in a day and age where many many people with celiac disease do not know that their family is at risk also for developing the condition and that they need to be screened on a regular basis. If you have first degree relatives, which would be a sibling or a child or a parent, they need to be screened. Aunts, uncles, cousins also need to be screened, every year or two. Celiac disease can develop at any age.

A lot of physicians still believe that it is a condition that affects only children. Do you know the most common age range in which someone is diagnosed with celiac disease in this country? How old are you likely to be when you are diagnosed? You’re most likely going to be an adult, and, in fact, the most common age of a newly diagnosed celiac is between 40 and 60 years of age. So we know for sure that this is not a disease that affects only children.

A delayed diagnosis or incomplete adherence with the gluten-free diet can increase the chances of health complications.

 We do also know that a delayed diagnosis but also incomplete adherence, not following the gluten-free diet every day or completely will increase your chances of health complications. That’s why it is important to know the consequences and the reasons why taming temptation is important, and that is why I am here.

Prevalence is equivalent to Alzheimer’s disease: 1 in 133 Americans.

You may not have heard that the prevalence of celiac disease is equivalent to the prevalence of Alzheimer’s in this country. That’s actually a very useful statistic when you are trying to educate doctors, family, friends, grocery stores, etc.

Facts about celiac disease

There are 208 signs and symptoms associated with celiac disease; they are different in children than adults.

You may not know that there are 208 signs and symptoms associated with celiac disease. Two hundred and eight. And every time I want to give a doctor a thump on the head (and I want to do that often), I remember this. And I remember that right now doctors with the best intentions don’t have the information or the way to distinguish between some of those signs and symptoms. They are asked to put these very complicated puzzle pieces together with different symptoms and try to come up with celiac disease when in fact these conditions can also indicate other problems. So they are trying to rule out other situations and diagnose celiac disease. That’s no excuse for the doctor who doesn’t ask about it or doesn’t care to test for it. But for those who have the right intentions, you can see why it is taking longer than it should.

It is common to have celiac disease without any symptoms at all. The extent of symptoms does not indicate the extent of damage.

Looking at children diagnosed with celiac disease, do you know what percentage of children have no symptoms? Sixty percent of children have no symptoms whatever. Adults? Of all adults diagnosed, 40 percent have no symptoms. What does this tell us? It tells us that screening is incredibly important because there is not going to be any other way to find someone who has celiac disease when they have no symptoms. And we know that celiac disease with symptoms and celiac disease without symptoms are both celiac disease; they both need to be treated with a gluten-free diet.

There is no case of celiac disease that is less or more severe. People with celiac disease are affected differently by the condition.

One situation is not worse than the other or less severe than the other. People are affected differently. We hear a lot of times, especially when we are talking about taming temptation, that someone says “Well, I just had a little bit of symptoms.” or “When I was diagnosed, I had a mild case.” or “I have a light case of celiac disease, so I’m going to have a little bit of gluten now.” It’s important to say this is the kind of information that we need to get out there to help people see that even though you had fewer symptoms when you were diagnosed does not mean that following the diet is any less important.

The only treatment for celiac disease is a strict gluten-free diet.

We know that the only treatment, as of now, for celiac disease is a strict gluten-free diet. In fact, research is going on at the University of Chicago looking at the earliest signs of celiac disease in the lining of the intestine. A lot of people have a positive blood test but a negative biopsy and a lot of physicians don’t know what to do with those folks. They ask “Does this person have celiac disease or not?” Well, we can tell if someone does have celiac disease or not because we know how to read the very earliest signs in the lining of the intestine. And because we know that, we can take it one step further, this is where our research is going, to start to say what creates that signal in the lining of the intestine that otherwise looks normal and how can we turn it off. There are wonderful advances in research that are going on around the country, but also at the University of Chicago.

This is the reason I am here today: The only way to measure the success with the diet is follow-up testing.

Tests to diagnose celiac disease

• Tissue Transglutaminase-IGA (tTG-IgA)
• Endomesial Antibody-IGA (EMA-IgA)

Additional tests that may be helpful:
• Total Serum IGA (to test for IgA deficiency)
• HLA gene testing for DQ2 and DQ8 (blood)

Blood testing determines if a patient needs a biopsy; the biopsy diagnoses celiac disease. Genetic testing can “rule out” celiac disease, especially in people who are already on a gluten-free diet. This is a very important thing for people who want to find out if they may have celiac disease but they are already on the diet.

Strategies for taming temptation

Let’s talk about taming temptation. There are two aspects or strategies of taming temptation.
One is medical, and one is behavioral.

Medical: Regular follow-up care can provide objective evidence that you are successfully following the diet. One is how you can work with your doctor to receive good follow up care so that you have objective evidence about how well you are doing on your diet.

Behavioral: Understanding the choices that are available and how to consciously choose to avoid temptation. Behavioral is understanding the choices that are available to you and how to consciously choose to follow a 100% gluten-free diet.

Defining our terms

So let’s talk about what taming temptation really means.

Temptation affects all of us in some way; whether we choose to act on it is an issue that is “downstream.” It’s important to realize that temptation affects all of us regardless of whether or not you have celiac disease.  We are all tempted by something—me, it’s chocolate.

How we avoid temptation depends a lot on how we’ve addressed similar issues before; there’s no one size fits all solution. How we weigh temptation really depends on how we have addressed these issues in the past.

The issue of acting on temptation is one that must be addressed without judgment so that we may help others and receive help without guilt or shame. How we choose to act on temptation, or if we choose to act on temptation, is something that is different than being tempted. One is sort of thinking about something, you understand this is tempting for you. Acting on it is the next step.

You’re not going to hear me use the “c” word. You know what the “c” word is? We’re not going to talk about “cheating”, and there’s a reason for that. A lot of people have learned the diet on their own. As everybody here can attest, when you go to the Internet, you do the best you can to learn the diet on your own, your intentions are very, very good, but you may not have all the information you need to be successful. If someone who is in that situation has gluten in their diet, you can hardly accuse them of cheating. But I would also say that people who do make a conscious choice to eat something with gluten in it also deserve our compassion and our understanding and will only actually start to make choices differently if we’re not in the position of judging them or making them feel ashamed. In fact, one of the things that research clearly shows is that people who are receiving negative messages, threats, etc., messages that make them feel afraid, are less successful at making choices that are good for their health than people who receive positive messages and encouragement. So, for people who are here to support someone who has celiac disease, that is a really important thing to take away.

You’re not alone

Ninety million Americans have a chronic illness. This includes 10-15% of Americans under age 18 with one or more chronic conditions. Celiac disease is a chronic medical condition. Over 90 million Americans have a chronic medical condition. About 10-15% are children.

Only 50% of Americans are estimated to adhere to the treatment regimen for their chronic condition. Most say it is easier to take medication than to follow a diet/avoid foods. About half are successful in following the treatment that their doctor has prescribed for their condition. If you were to survey someone with a chronic medical condition, it doesn’t matter what it is, they would tell you that of medication, exercise, diet, or other medical treatments that they have to have, the hardest thing for them to do is to follow a diet.

Consider kidney dialysis for kidney failure. There is a very specific diet that you have to follow if you are receiving dialysis in order for dialysis to work and you to maintain your health until you can get a kidney. It’s a very complicated diet. It has seemingly no rhyme or reason to it, although you learn it just like anything else. Very few patients who have kidney failure actually follow the diet. The result of not following the diet is extreme physical pain and difficulty breathing to the point that they may need medical intervention. You can see that for someone who has very instant ramifications of the choices that they make, and they are still not able to follow the diet for one reason or another. We understand how complicated this is, it’s not easy, but you’re not the only person in the world who is facing that same situation, and it’s important to know that you are not alone.

Education isn’t enough

 I am quite partial to the Italians, you see, because I work for one. Dr. Stefano Guandalini is an internationally known expert on celiac disease. He was Dr. Fasano’s professor in medical school. Dr. Guandalini, with a group of colleagues, in 1990  actually established the guidelines for diagnosing and treating celiac disease that are now used around the world. They are about to be updated.

So, here we have our favorite country: Italy. Do you know what happens in Italy when you are diagnosed with celiac disease? How you get your food? You get a prescription from your physician, and you actually go to a pharmacy and have your prescription filled and you receive gluten-free food from the pharmacist. It’s part of your medical care. It makes a lot of sense, doesn’t it?

Doctors who diagnose celiac disease do so every week. It takes weeks to get diagnosed in Italy, not months or years. There is a support group environment that is actually a national celiac association and local chapters that meet throughout the country. Dietitians are very well informed about celiac disease so they are there to provide information to patients. This is a very supportive environment. We, I think, would call it almost an ideal environment for celiacs.

A 2002 study Italian study of 390 celiacs receiving follow-up biopsies after 7 years on a gluten-free diet: 44% had normal biopsies; 56% had mild or severe intestinal damage. And yet, in 2002, about 400 people with celiac disease were rebiopsied after 7 years on the gluten-free diet, and what did they find? Over half had damage to their intestine. What does this mean? They are not following the diet.

A 2001 Canadian study of 234 celiacs demonstrated that 35% had gastrointestinal discomfort 2 or more times a week and about the same number reported difficulty with the diet. In Canada, a similar study of about 230 celiacs found that 35% had gastrointestinal  discomfort 2 or more times a week. They reported difficulty with the diet.

So, what we are seeing is: you can have all the information and support around you, but it doesn’t appear to be enough.

Super Size Me

How many people have heard about the movie Super Size Me?

Award-winning film about a man who ate at McDonald’s, three meals a day for thirty days For those of you who haven’t, this was a very fascinating, troubling documentary film where a man went to his doctor and said “I want you to give me all sorts of tests. I want you to see and be able to tell me how healthy I am right now.” And then, after that, he set out to eat McDonald’s food for 3 times a day for 30 days. So that’s what he did. He had to eat different things on the menu. He couldn’t eat just the same thing. So he wasn’t always eating the worst meal on the menu.

What do you think happened? His liver actually started to fail. His liver tests were very dangerous. His physicians actually got to a point where they said “You know, we’re begging you not to continue.” But he said “No, I need to.” So they said “Okay, under these circumstances, we need to go to the emergency room. This is when you have to stop. There is no other way to go around it.” So he became seriously seriously ill.

Does this surprise you? Why? Do you believe this? If you haven’t seen the movie, do you believe it? Do we need to see it on the television news? Do we need to hear it from a doctor? Do we need to read it in a medical journal? No, we don’t. Why don’t we need that other information? Because we believe it. We absolutely believe it. There’s no question in our minds that that’s what would happen. You could hear that going to McDonald’s for one day for three meals and you would raise your cholesterol.

What do we believe about our health and the effect of our choices on our health? It’s not surprising. One of the things I want to talk about is actually that it’s what you believe about the choices that you make, what you believe about your health and the conditions you have, whether it be celiac disease or something else, affects how healthy you will be and affects the choices that you make. So that’s what we’re looking at, and it’s interesting because we hear from people all over the country, and they have beliefs about celiac disease that don’t support making good choices. The message is:

You are what you believe

Health beliefs affect health behaviors. Beliefs change over time as we learn through interactions with others and our environment.

There are three factors that are really really important:

Belief that one’s condition is severe or that one’s risk is serious Whether or not you believe that your condition is serious, or, if you are a family member or friend, that your risk is serious.

Belief that there are alternative behaviors that can manage condition A belief that there are alternative behaviors that will help you manage the condition. We had a family event in Chicago this past summer, and we opened it up for questions and answers. There was a mom in the audience who said “My daughter has celiac disease, and I have a question.” She held up this bottle and said “I have this bottle of pills. I went to my health food store, and they said they blocked gluten. And so I give them to my daughter, because if I don’t know everything that’s in her food, I feel this is going to help her be healthier. If she goes to a friend’s house or a birthday party, then she can eat the regular cake because I am giving her the pills.” This is an example of someone who believes truly that there is an alternative behavior that will successfully manage celiac disease. In fact, for this mom, who is from a very small town in Indiana, she actually had had little information, so that was part of it, but she truly truly needed to believe that this was the case.

Belief that one can overcome barriers/successfully manage condition And then, most importantly, I find, a belief that you can overcome barriers and successfully manage your condition. Certainly, when you are first starting out, it is really really difficult. It’s overwhelming. You’re trying to keep everything together and learn what you have to do. But if this is a belief that persists, then you need to have some additional assistance so that you can learn that you can be successful.

Health beliefs of adult celiacs

In Buffalo, New York, I sort of love this group; I go there all the time, and I asked them to help me with this project. I gave them a list of health beliefs, and I wanted to see what they thought and what they believed.

Predominant health beliefs:

• 51% agreed with statement: “If I eat less gluten I will have less intestinal damage.” A hundred people filled out the survey, and 51% thought if I eat less gluten then I will have less intestinal damage. What do you think? No? No. That’s right. It is the case that if you have a very small amount of gluten you can have a very profound level of damage in your intestine, and that’s scientifically established.

• 36% agreed that “My doctor should be the one to tell me when I need follow-up testing.” Please raise your hand if your doctor has ever told you that you need follow-up testing. One. Fabulous! Actually, in most cases, I ask that question and then nobody raises their hand. One of the points I want to make is that it’s your body, it’s your health, it’s your life, and it’s your happiness. It’s your job, if your doctor is not telling you to do something like have follow-up testing, you’ll now have the information you need to say “Doctor, I know this is what I need to do, so let’s get with the program.”

• 33% agreed that “I’ve lived this long eating gluten. How much will the diet help me now?” This is interesting, and I find this to be the case with some celiacs who are retired: “I’ve lived this long eating gluten. How much will the diet really help me now?”  We do know that regardless of the age you are diagnosed, you can have significant repair of your intestine and feel not only better in terms of symptoms but start to absorb more nutrients and be healthier over the long haul.

• 16% expressed the belief that scientists/doctors still haven’t proven that gluten really hurts them. This I found most chilling. Sixteen percent said that “Doctors and scientists really haven’t established that gluten really will hurt me.” I thought that was interesting; that’s what I was getting to before. So these are some common health beliefs.

Health beliefs about diabetes and weight loss

I want to point out also a study on health beliefs and diabetes.

• 154 participants in study were at risk for diabetes. This is a group of 154 people who were at high risk for diabetes. The question was looking at how somebody felt about losing weight, and whether or not they felt it was going to be helpful for them or not. They were first asked to tell the people who were doing the study “Do you think you are at high risk, medium risk, or low risk?”

• Those perceiving themselves at highest risk were right—and were most often women. And it was interesting, because the people who were at highest risk knew that, they absolutely knew that, and they were correct.

• High risk patients did not believe that weight loss would lower their risk. However, they didn’t believe that weight loss was going to help lower their risk for diabetes. In fact, they were living at a facility, this was a very intensive program, they were at a facility where people brought their meals to them, they organized exercise programs for them, dietitians came to them and met with them. There were a lot different things that they did at the time they participated in the study to help them lose weight.

• High risk patients were most successful at intensive weight loss program but were the most likely to relapse at one year. In fact, the people who were at highest risk were the most successful. And then they went home. What do you think happened? The people who were the most successful at losing weight actually gained it all back. So why do we think this is the case? These were folks who everybody was doing everything for them. Everything was being done; all the meals were being prepared. Well, heck, you know, I could follow any diet you want as long as you prepare my meals. Come on! The reality is that we all have to live in the real world. What’s going to get us through that process is, again, our internal motivation to be successful. What I’m going to come back to again and again is: It’s what you believe. It’s what’s internal, inside you, that you understand very very clearly what you need to do.

Blueprints for behavior change

It’s very interesting to look at Stop Smoking programs.

Research behind “Stop Smoking” programs is extensive and has shown that quitters with and without help are equally as successful. They’ve done a lot of research on changing behavior with relation to someone’s choice to smoke or not. It’s been shown that quitters with or without help are equally successful. So what does this mean? It means that you can do this any way you need to do it. There’s no magical rule or formulae. You can be equally successful. What does matter, though, is whether or not you’re ready to make a change and do something different.

Stage of readiness is most important:
• Pre-contemplation/contemplation: considering change
• Preparation/action: preparing for and implementing change
• Maintenance: anticipating and handling temptations and learning from slips to maintain change

If you’re not ready, it’s not going to be successful, which, of course, seems pretty straightforward.

Factors that can improve success

Some of them are not brain surgery.

• Knowledge of the diet and success with the diet
• Understanding risks of complications--the consequences of not following the diet
• Developing routines and methods to be successful in following the diet
• Trusting your physician and dietitian who are involved in your care. Everybody laughs when I get to this one. In fact, at Stanford University they’ve done a tremendous amount of research in measuring a patient’s trust of their physician. And then they look at “Well, if the doctor says we need to follow this or need to do that, what happens?” Patients who do not trust their physician don’t  follow their doctor’s advice, which makes a lot of sense.
• Looking at feelings that may make it more difficult for you to follow the diet and
• Possessing positive coping skills are also important.

So how do we operationalize these?

Checklist for success

• Regular follow-up tests and a diet checkup when necessary. We call it a “diet checkup” because it means that you think that there is something going on with your diet that’s not working right. Maybe you’ve gone over everything, and you just can’t find what it is. Maybe a dietitian who is knowledgeable or someone in your support group who has a lot of experience can help you identify what needs to be changed.
• Stay current with the latest information on celiac disease—incorporate new knowledge into your diet and join a support group.
• Find medical professionals you can work with even if you need to educate them. Everybody says “Well, it’s not my job to educate my doctor.” But unfortunately, we’re in a day and age where it is. Hopefully, once we have all sorts of ambassadors going out and educating doctors, we’ll get to a point where we don’t have to as much.
• Understand and learn to recognize the feelings that drive your urge to eat foods you shouldn’t. Develop alternate strategies. And, again, we all have feelings and situations that we’re in that just make us feel overwhelmed, and we eat things and do things that we shouldn’t. If I’m stressed out, I go right for the Hershey bar. So understanding what else I could do when I’m stressed out, other than reaching for a Hershey bar – which in this case would be fine except I’ve had one too many – is the way we need to think about looking at making different choices.
• Plan to be determined, not deprived.
• Assertive communication: what will you say when someone makes you feel bad? We’ve all, I think, in support groups, talked about assertive communications. There are lots of things, especially with the holidays coming up, that family members and friends can do that make you feel bad for not eating something that you shouldn’t.
• Replace food as a reward. I find that parents often do this, and when a child is diagnosed with celiac disease, it’s really hard to refocus to a different kind of reward. But women do it! I mean, come on. If you have a bad day, say “I am going shopping.” Instead of thinking “I’m going to eat chocolate”, think about “I am going shopping.” That’s an example of looking at a different reward.
• Know the urge will pass. There’s been research that shows that if you have an urge to eat, drink, or smoke something that you shouldn’t, that the urge passes within 20 minutes, biologically the urge passes within 20 minutes. And if you can distract yourself and get through that 20 minutes, that may be helpful.

A mistake

What happens when someone with celiac disease eats gluten? This is something that I think is really important, which I find that nobody talks about. What happens when somebody eats gluten, somebody with celiac disease eats gluten?

• Gluten reaches the small intestine and causes an autoimmune response. We all know that gluten has to reach the small intestine before it causes symptoms. It takes about 4 to 6 hours to do that. It gets to the small intestine, and it causes an autoimmune response because your autoimmune response in the gut is raring to go and it’s on overdrive. A little bit of gluten comes by, and it pounces on it with everything it has.

• Response damages intestine—damage can create symptoms. The response damages the intestine. Damage can create symptoms or not. Anybody been celiac more than five years?  For people who have been celiac five years or more, some still have symptoms, but a lot of times people don’t have symptoms any more after they have been on a gluten-free diet for that long. So you can’t always rely on symptoms to tell you that you have made a mistake. That’s very important.

• Response creates antibodies that are measured in the bloodstream. Antibodies usually remain high for 4 to 6 weeks. That response creates antibodies that are measured in the blood stream. You may not know that that increase in antibodies lasts 4 to 6 weeks. People don’t realize that; thinking that it lasts as long as you have symptoms, but in fact it lasts quite a bit longer.

• If this is a single event, the gluten-free diet will repair the intestine. What happens when this is a single event? You’re on a gluten-free diet that you’re going to keep going, but you’ve had something you shouldn’t. The gluten-free diet is going to repair the intestine, and the antibodies are going to decrease.

• If gluten is consistently eaten, antibodies remain high and damage is sustained. But if gluten is consistently eaten, the antibodies remain high, and the damage is sustained. In fact, if what you eat is a little bit of cross contamination, your antibodies may go up a little bit but remain pretty steady.  But if you’re eating a little bit of gluten here and there in different things, the number of antibodies gets higher and the number is sustained longer, because it is 4 to 6 weeks from the time that you ate something, so that 4 to 6 weeks keeps going out.

• Repeatedly damaging the intestine raises the likelihood of complications, like osteoporosis, anemia, infertility, and neurologic symptoms. Of course, repeated damage to the intestine increases complications. But there’s something that happens that most people have not heard about, or not heard a lot about. In celiac disease, the lining of the intestine responds very well to the gluten-free diet. That’s how we manage the condition. You have damage to a cell. You know that you’ve done something that you shouldn’t, and with the gluten-free diet that damage is repaired, right? So what happens when you have repeated damage? The cell changes. The cell keeps changing, but it doesn’t change back. In some cases it doesn’t respond to the gluten-free diet any more. So you can have that damage that will be there, and the gluten-free diet won’t repair it. You know what that is called? Refractory sprue.

People with refractory sprue often need intravenous feeding. Many hospitalizations, a lot of different supportive therapies for developing anemia and all sorts of other problems. And it can lead to death. And we’re not even talking about intestinal lymphoma. But it’s important that you can only damage the cells so much before they don’t bounce back.

Dealing with a mistake

Ask yourself why the mistake occurred: Feeling deprived? Stress? Pressure in social situation? Some of the questions to ask yourself if you know that you made a mistake. What happened? Were you busy and did you not check a product that you should have? Had it been a year or so since you checked the product?

How did you feel at the time? Angry? Depressed? Lonely? Sad? Afraid? Were you feeling like cheating? You know, “This is so unfair. I need something because there are so many things I can’t have.” Feeling deprived, stress, all sorts of reasons.

If you can address how you feel at the time, you are more likely to be able to avoid temptation. And, again, identifying feelings can help you understand the trigger that led to the mistake.

The importance of follow up testing

We’ve talked about some of the behavioral aspects of taming temptation, and now we’ll talk about the medical aspects. You cannot know how well you are doing on your diet unless you receive follow up testing! An absence of symptoms is not always an indication that your diet does not contain gluten. Follow up testing is as important for someone who is newly diagnosed as someone who has been on the gluten-free diet for a very long time.

There is a new set of guidelines that will be coming out very soon on all aspects of diagnosing and treating celiac disease. It’s produced by a medical society, the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition  (NASPGHN). These doctors, they can’t come up with short names!

New NASPGHN guidelines:

• tTG at 6 months, 1 year, and every year thereafter The bottom line is that the first test that you need is a tTG. Tissue transglutaminase. After you’re diagnosed you need a test in six months, in one year, and every year after. It’s never too late for follow up testing, it doesn’t matter if it’s been ten years, you just go and you get one.

University of Chicago recommends:
• tTG with Antigliadin IGA at 6 months, one year, and every year thereafter. We actually helped create the guidelines that are coming out, so we’re very proud of those. However, on this particular point, we feel that another test is also very helpful, and I’ll tell you why. The antigliadin antibody IGA is also very important.

• Type 1 diabetes, Hashimoto’s thyroiditis, autoimmnune conditions are affected by tTG. We find that in people with Type 1 diabetes, thyroiditis, and some autoimmune liver conditions, a tTG can be false positive. So you can have someone who is doing very well on their diet, but if they have only a tTG test, it will be positive, and the doctor will say “Mmm, you’re not following the diet. You have to take the gluten out of your diet, you’re doing something wrong.” And in fact, those people aren’t doing anything wrong. In this case, the physician should order an anti-gliadin IGA test to compare it with the results of the tTG. These tests are two different ways of looking at the same issue, that is, compliance with the diet. For a person with Type 1 diabetes or thyroid disease, if the tTG is high, and the anti-gliadin IGA is low, we would conclude that the high tTG is a false result, and the person is following their diet correctly.
• tTG can drop sooner—both tests provide a fuller picture of recovery. The other thing is that for people who are newly diagnosed, the tTG can sometimes, and it’s impossible to truly predict, drop sooner than the intestinal damage is healed. So it’s not as good a predictor of how well you’re healing as the other test.

Test results

So, if you have these two tests, and you have celiac disease, what should your results be?

• tTG (tissue transglutaminase) should be negative. Test value does not matter. Tissue transglutaminase: a negative is a negative. It doesn’t matter if the number is 19 or 2 or whatever. Actually, I should qualify that. For some laboratories the cutoff value for a negative is 20. So I’m saying anything under that value is fine. For Prometheus Laboratories anything under 4 is negative. So for them you would want your test result to be under 4. But it doesn’t matter what the number is.

• AGA-IGA (Anti-gliadin IGA) should be as close to zero as possible, definitely under 10. The test value does matter. For the anti-gliadin antibody, the number matters. It is a reflection of the magnitude of gluten or gluten protein in your diet, and it’s very very accurate in people with celiac disease once you’ve removed gluten to find very very small amounts of gluten in your diet. You want it to be as close to zero as possible. Hopefully, definitely under 10. The really important thing is, you want to make sure that you get the number, because your doctor’s office could call you and say “Congratulations! You have a negative test. You’re doing fine. Keep it up! Keep it up!”

A negative AGA-IGA can be any value under 20; for a celiac on the gluten-free diet, this is too high. Ask your doctor’s office for the value of the test. In fact, for every lab that we know of, the cutoff is 20. So if you have a 19, you’re not doing well on the diet. For someone with celiac disease, the number really really matters. When you have your blood drawn, you can check with your physician and say “When the lab issues the results back, are they going to give you a number?”

Keep track of your test results

It’s very important to keep track of your test results. It’s often very difficult for the parents of children, but also for adults, to determine “Am I sick because of celiac disease, or am I sick because of something else?”

• Ask for the lab reports!
• Keep a file and create a chart with your test values.
• If you are concerned about symptoms, you can refer to your chart to see how well you are doing on your diet.

If you ask for your lab reports and keep a file, you can look back and see how well you are doing on your diet. And if there is a question, you can always have a test done.

Follow-up tests

• Tissue Transglutaminase-IGA (tTG)
• Anti-Gliadin Antibody IGA (AGA-IgA)
• If you are IGA deficient: tTG-IgG

And that way you can figure out “Is this something that is related to celiac disease or is this just something else? Is it the flu or intestinal symptoms?” Sometimes you can’t tell. But it is really important to keep track of your test results. You’ll find that sometimes even your physician can’t tell you exactly how well you are doing, and you can remind them.

Q&A

Q. How do you know if you are IgA deficient?

A. There are a small group of celiacs who have what is called IgA deficiency. This means that you do not produce immunoglobulin A, IgA. If you were celiac and had an IgA test, and you didn’t know you were IgA deficient, you would automatically have a negative test result, because you need IgA in order to have an accurate reading. You would need a test called a total serum IgA. It’s a blood test that reads how much IgA you produce. It’s just a number. I think different physicians think differently about this, but if you were at the University of Chicago, and you were .1 you would be considered IgA deficient It’s so low, you think “This is not right.” So you have a .2 or a .7, where someone who produces IgA would be 10 or 20 or 50 or 100. It’s the magnitude of the number that tells you that you have a problem with IgA deficiency. So, let’s say you do. Then all of the tests that your doctor orders to diagnose you or to follow you need to have an IgG component to them (tTG IgG).

Q. Say you have a test one year, and you are IgA deficient. Does that mean that the next year, you are still going to be that? And when you go in for tests the next year, do you say to test again for IgA deficiency? Or if you go to a new doctor, can you take the papers with you?

A. You are always IgA deficient if you don’t produce  immunoglobulin A. Do you test again the next year? No. If it’s established once, that’s all you need to know. And If you have your test reports with your lab values from your doctor, you can bring those to a new physician and say “Here’s my last three blood tests” and you can establish for that person that you are IgA deficient.

Q. I went to see the doctor this week. I have been diagnosed with celiac disease for 3½ years. I asked for follow up tests. The doctor asked “Why? You already know you’re celiac?” I said I need to know if I am compliant with the diet. He said “You should know if you are being compliant with the diet. There’s no need to have a test.” So what kind of response do I need to make to convince him that I do need a test?

A. First of all, you may have heard of the National Institutes of Health Consensus Conference on Celiac Disease. It happened in June. You can actually go on the NIH Web site and print out a copy of the Consensus Statement. (Editor’s interjection: It’s in our October Alamo Celiac newsletter.) It talks about the standard of care for diagnosing and treating celiac disease. Now, I don’t know if I remember correctly, but it seems to be a little wishy washy on the value of follow up testing, but I think it has some information in there. (Editor: Under “What is the management of celiac disease?”, the statement identifies “Continuous long-term follow up by a multidisciplinary team” as one of the key elements in the management of celiac disease and further states: “Repeat serologic testing may be used to assess response to treatment but is unproven. These tests may take a prolonged time (up to 1 year) to normalize, especially in adults, and may not correlate with improved histology. Persistent elevated serological levels may suggest lack of adherence to a gluten-free diet or unintended gluten ingestion.” 

The other thing is that there are new guidelines that are coming out in the fall. The basis for the recommendation is a lot of research that shows the value. First of all, the doctor that I work for studied this and looked at children who had follow up biopsies and children who had blood tests and determined that blood tests were perfectly adequate for following someone on a gluten-free diet. You did not need to do any more biopsies after the initial biopsy that diagnosed the condition. That, and subsequent research, shows that follow up blood tests on a periodic basis are good management of celiac disease. One of the things I’ve heard people to do is, you can always say that you went to a lecture where someone from the University of Chicago spoke, and this is what they do, and that helps quite a bit.

If you have a physician who is resistant to giving you follow up testing, you can always work with another physician. I’m not saying to switch doctors, that’s something different, but if you’re talking about going to your gastro doctor, and your gastro doctor is not giving you the time of day, your primary care physician can order the tests. The tissue transglutaminase test, ideally you would want that to go to an expert laboratory like Prometheus Laboratories, but the antigliadin antibody can go to any laboratory, that doesn’t matter. So, if you find this resistance regardless of what you do, finding another physician who will work with you is perfectly appropriate.

If you want to contact me, anyone can call me with any questions or concerns that you have at our Celiac Disease Information Line, 773-702-7593. I have someone working with me, and we get calls from all over the country. I will be happy to follow up on references to articles recommending periodic blood tests for you

Q. Which test should you have for the follow up?

A. The anti-gliadin. A lot of people tend to use the IgA portion of the test to say “I had the IgA test.” It’s important to realize that every test has an IgA after it or an IgG or whatever, but there is an IgA version of just about every test for celiac disease. So it’s really important to have the full name of the test so that you are technically correct and very clear when someone is helping you.

Q. I was having a lot of gastrointestinal problems, and it turned out a lot of it was my rheumatoid arthritis medication. But, anyway, the doctor did an endoscopy and took biopsies. He told me I still had some villi damage in the intestine. He said “It’s not very much, but you still have some little places so try to watch your diet better.” But I feel I am watching it really well. I am 63, and I think I had celiac disease for many years before I was diagnosed. I think it was 1987 when I was diagnosed. For years I was seeing the gastroenterologist for intestinal problems, and they always blamed it on my rheumatoid arthritis medication.

A. This is a good example. You are doing the best you know how to do, and you have arthritis, so your doctor looked at some of the gastrointestinal issues that you are having, and apparently you still have a bit of damage. So what can you do in a situation where, your doctor says, for whatever reason, they’ve done another biopsy to check you out, and you still have some damage. Well, first of all, you should know, this is where a diet check up would come in. Even though you think you are doing everything you possibly could, having someone’s fresh pair of eyes, someone that you trust that you work with here or a dietitian that you work with here, somehow, some way, to get another perspective.

Dr. Peter Green, up at Columbia, had a really interesting study. People were diagnosed with celiac disease, and they agreed to be rebiopsied at certain intervals after their diagnosis. They found that this myth, that your intestine completely healed, is a myth. Many people, depending on the age they were when they were diagnosed, had different experiences. A child would have really complete healing. Someone who was in their twenties might experience mostly healing, but someone in their forties might have a certain percentage that’s not healed and won’t healed. You would only see that on a biopsy. So there’s a factor that comes into play that’s what can you realistically expect to be normal for you. And if you had somebody look at your diet, and they can’t find anything,  have you had an antibody test? Because even though your doctor sees this, having a quantification of what this means for you in terms of your autoimmune response would be helpful. More information might help you understand what further steps you could take. But it’s also reasonable to expect that someone who is diagnosed in the fourth or fifth decade of life is not necessarily going to have 100% repair.

Q. I had a sister who was diagnosed (biopsy confirmed) about three years ago at the age of 46, after she was ill for many years, and apparently she is following the diet very closely because her daughter, who also has celiac disease, seems to being improving healthwise tremendously and she doesn’t seem to have any symptoms. But my sister just continually has symptoms. She has gone back to her gastroenterologist a number of times, and they have checked her for other intolerances, other allergies. They can’t seem to find anything. I don’t know if she has had follow up antibody testing. What would you suggest?

A. Well, the first thing is, I’m not a doctor. But even doctors can be confused by some of this stuff, too. What is the saying? If all you have is a hammer, every problem is a nail. And we have to remind ourselves that not everything is due to celiac disease. Once you know what your antibody responses are, and you know that they are well within normal range, you can start to say “What else could this be?” and it’s not going to be because of celiac disease. But if you know that it’s high, then you say “Okay, what else can we do?” It’s often like the first step that can be taken, to say “Do we go this way, or do we go this way?” I’m not saying that it’s simple, because it’s not, and especially for a mom who wants to be healthy and happy for her kids.

Just so you know, the older you are when you are diagnosed, and the older you are when you are not following the diet completely, and I’m talking usually 60s, 70s, 80s, that’s when you tend to see more of the serious complications, so the likelihood is that this could be something that if you hit on the right thing, you could figure it out.

Q. I hear people say over and over that when they are at a restaurant, and they get some gluten, that they can tell right away. You said that the response takes 3 to 6 hours. I am wondering how can someone react in say, 30 minutes to an hour. It needs to get to the small intestine, right? There’s something else going on there. I asked, but they say it feels like a gluten reaction. Does this mean that all reactions feel like a gluten reaction?

A. Typically, a response to a food that you can clearly see the connection that happens much quicker, like 30 minutes, is a food allergy. Certainly people have different kinds of responses to allergens, but you can be allergic to gluten; you can be allergic to wheat. I know people who are very good at differentiating. “Well, this quality of pain is different. This quality of cramping is different.” And some people aren’t able to see that. Where the rubber meets the road is how long it takes. Many people here could probably raise both hands and both feet and say “Yeah. I have some other food allergy or intolerance that I have discovered since I was diagnosed with celiac disease.” That’s very common.

Q. I have been told it is almost impossible to be completely gluten free. Is this true?

A. Unfortunately, there is a grain of truth to that. The grain of truth is that no one individual can possibly keep up with every single food product that’s out there that could come in contact with whatever. It’s really very very difficult. What do we mean when we say we need you to aim for a completely gluten-free diet. We understand that we need you to aim for a 100% gluten-free diet because 2% may or may not be attainable.  That is why antibody testing is so important. The anti-gliadin antibodies that I told you about can register the magnitude of gluten in your diet. What do we say when we say under 10? Ideally, maybe 5. We’re saying that there is a little bit of gluten in your diet. And, there isn’t research yet that establishes this, but we’re very close to finding out the answer to whether or not there is a safe level of gluten in the diet of a celiac. Does this mean that you’ve got all the reason that you have to go out and have whatever favorite thing you have been missing? No.

Q. I was diagnosed a little over a year ago. I have two children. Is there an age that I should have them tested? One’s 5 and one’s 2.

A. You could test the 2 year old, but there’s a possibility that the test would not be completely accurate. People have been testing 2 year olds for a long time, but this new set of guidelines that I referred to is saying wait until 3. The rule of thumb is when you’re talking about screening, there’s a schedule that we like to see followed, but if you develop symptoms, then you need to be tested right away. So, they could be tested now. You start with the tTG, and, depending on the test results, you may need to confirm with the second test. If the doctor says “Well, we need to do a biopsy. I want to see what the tTG is, but I know we are going to do a biopsy.” We get the tTG back, and it’s positive. You don’t need to worry about any more blood tests. You just go straight to a biopsy because that was the intention all along.

The total serum IgA was the test for IgA deficiency that I mentioned. And HLA gene testing for celiac disease; it’s important. We talked about people who are on a gluten-free diet without having been diagnosed. Again, making absolutely no judgement about that whatsoever, because lots of times people have a hard time finding a doctor who will work with them. There is an option or an opportunity for people to determine whether or not they have the genes for celiac disease. If you don’t have the genes, it’s very very very very unlikely that you will ever develop celiac disease. Could we determine that there are other genes in the future? Yes. But right now, that’s considered being able to rule out someone from having celiac disease.

Q. I was diagnosed about three years ago with the blood tests; I remember the IgA was one of them. My doctor didn’t do the biopsy. Does that mean that I might not have celiac disease?
 
A. Truly, people who are not biopsy confirmed, we can’t say for sure have celiac disease. You could consider a gene test. You don’t have to change your diet, you don’t have to do anything different. And you could have that one blood test that will determine whether or not you have the genes. So what happens if you don’t have the genes? You can rule it out. What happens if you do? You’re in good company, because 35% of the population of this country have the genes for celiac disease. But only 1 to 4% of them actually develop the condition. So even if you test positive for the gene, you may not have celiac disease, but it’s the closest you can get, having been on the diet for quite a while.

Q. I was diagnosed a week ago, and I have 2½-year-old twin daughters. My one daughter is symptom free, but my other daughter has had chronic constipation since she was placed on cereal. She has also had terrible eczema since she was an infant. So I figure that she probably needs to have the testing done as she is at high risk and has symptoms. She is scheduled to have a blood test next week; she should have the IgA?

A. Yes, she needs the screening test: the anti-tissue transglutaminase test (tTG-IgA). But your other daughter needs that test as well. Just so you know, if you are a twin, and one twin has celiac disease, then the other twin has a 70% chance of developing celiac disease.  So that’s why it’s real good to keep track of both.

Q. My dad is anemic, and they can’t find the reason for it.

A. Anemia is the most common sign of celiac disease. Iron deficiency anemia that is not responding to iron therapy. So if someone has had iron therapy, and their anemia still exists, that’s the most common sign, the number one sign of celiac disease.

Q. I’m not getting support from my husband after my recent diagnosis. In some situations he’s been very good, helping me in the store, but then he rolls his eyes in the restaurant when I ask “Has the chicken been grilled on the same grill with other breaded meats?” And I’ll say, “We have to check for cross-contamination.” And he doesn’t understand why I would have to toast my bread in a different toaster. Or have a different butter. He’s just like “I don’t get it.”

A. I do know families who, when a spouse is diagnosed with celiac disease, the other spouse just doesn’t get it. Something that has helped, in some cases, is when the spouse is diagnosed, to say “You know, this is an awful lot of work, and I need your help. Can you help me figure out what’s safe by calling companies? ”  What can he do to help, so that he can start to see what you are going to do to make sure that you’re healthy. It’s hard, and I know that there are spouses out there that won’t budge, but perhaps if there is a way to show a little bit more about what you know that you need to do. You know, “I’ve got to separate the food in the kitchen, and make sure that I know what’s fine” and that kind of thing. The other wakeup call: the two tubs of butter; all the condiments that you have double of. No, it’s understandably very frustrating, but you’re doing everything that you should be doing. 

Q. They say that stress, like childbirth or surgery or emotional upset will trigger celiac disease. What exactly does that mean, “trigger celiac disease”?

A. When you are talking about childbirth or surgery or a car accident or something like that, it’s when a biological response occurs that causes your immune system to be on heightened alert, that something is going on to the body, and it’s on overdrive in a way it hasn’t been before. Childbirth is extraordinary, surgery is not an everyday kind of thing that your body is used to handling. What seems to happen, and I don’t think this is completely understood, but that it’s sort of like accelerating on the gas pedal and then letting up because you’re slowing down but yet in your body in one way the gas pedal is still to the floor, and that’s the intestinal response that you have with the immune system, and that’s what it means with the trigger. That something’s turned up; it’s heightened; and it just can’t go back to where it was  in that respect. It doesn’t mean that your entire immune system is activated on high response, and it certainly depends on the trigger that we’re talking about.

Q. What makes the DQ genes active or inactive?

A. Most of our genes are not in use, and we will never use them. The DQ2 and DQ8 genes predispose you to developing celiac disease, but like we said, far more people have those genes than will ever develop celiac disease. What we do know is that celiac disease develops in a complex interplay between genes and our environment. What we eat, what happens to us, such as childbirth, and other factors that we may or may not be able to control, including whether or not we were breastfed. That kind of thing. Timing cereals into the diet. Those kind of environmental factors often interplay.

Q. With initial blood testing for celiac disease, what numbers should they expect to see if they are normal?

A. Normal? Negative. If it’s a tTG test, you would want the test result to be the same as if you were a celiac on a gluten-free diet. You don’t want to show an immune response to gluten, so your test result is going to be negative. It doesn’t matter what the scale is. The same with the endomesial antibody, you want it to be negative. There are scales that they give you, some are in ratios, some are in numbers. You need a negative test. Sometimes you will see test results where there is a gray area. They call this a weak positive. I love weak positive! Weak positive. That means, we don’t know, and we don’t want to guess, and we don’t know what it means, and that kind of thing. It means that you could be positive or you could be negative. I’m totally serious. It’s like: “Great! How does this help me?” But when you have somebody who is weak positive, what does that mean? Do you go off to a biopsy? Well, it depends on whether or not you have symptoms, or the kind of symptoms you have. A weak positive, with a lot of symptoms, may indicate that yes, biopsy is fine. But if you have somebody with a weak positive who has no symptoms whatsoever, we’ll rescreen them in six months or a year. So that gray area, and what is means, is highly dependent on your particular situation.

Q. A friend started losing a lot of weight and doesn’t feel well. Celiac disease was suspected, but the blood tests came back negative. They can’t find anything else wrong with her, but they won’t do a biopsy since the blood tests were negative. Another celiac friend said “Why don’t you just try the diet anyway, and see if you feel better?”

A. First of all, people who have negative test results could have IgA deficiency. So if she hasn’t been tested for IgA deficiency, there could be a reason why she has negative test results. Her negative test results could be false.  That’s important. The other thing is that, of course, starting the diet before you are diagnosed, you really are closing a door to an accurate diagnosis. Certainly understanding that you can only do so much before you just want to throw up your hands and say “I can’t do anything more.”  However, with a simple blood test like that available, you know that there is something else to do. Also, she can have the gene test for celiac disease to determine whether or not she even has the genes. If she doesn’t have the genes, it isn’t celiac disease. Depending on what they have done, there could be other conditions that they are not ruling out. And, I find, as often as not, doctors have a hard time actually correctly interpreting the blood test results to begin with. So, having a second opinion with a good physician, and I know that there are good physicians associated with this support group, could also be helpful. But we would encourage that some of those steps be taken before someone starts the diet, because, again, once you change that environment, it’s really hard to know if you have a negative test because you’re truly not celiac, or if you are negative because you’re on the diet.

Q. I didn’t have the blood tests, I think because I had some severe, pronounced symptoms. I had a real serious bout, lost 35 pounds, diarrhea, throwing up. In three or four weeks my family doctor couldn’t figure out what was wrong with me, so I went to the gastroenterologist, and when I saw that doctor, I guess she thought that the symptoms warranted the endoscopy. The biopsy came out positive. From day one  after she diagnosed me, I started the gluten-free diet, but it took a long while. As the doctor explained it, the villi were very damaged. It took a long while to repair.

A. That’s a good point that you bring up, because some people say “Well, I had a biopsy, and I was diagnosed with celiac disease, but I never had the blood tests. Does that mean that I don’t have celiac disease?” And the answer is “No, it doesn’t lead to that conclusion, because the biopsy diagnoses celiac disease.” The blood tests determine whether or not you need a biopsy. In this case, your physician knew you needed a biopsy. You needed the endoscopy. Every time a physician orders a test or does a procedure, they have to ask themselves a question “What benefit am I giving this particular patient?” In this case it would be “If I know that the blood tests are to determine whether or not you need a biopsy, but yet I can look at you and determine you need a biopsy, these tests don’t have benefit in your case.” In most cases, the majority, they do. The other thing is, is that you may have encountered the fact that there are different levels of severity in celiac disease, and they are rated by a specific set of criteria, and you can have people with what is called Marsh III a or b, and we can understand why it would take longer for you to bounce back than someone who has a less severe case of villous atrophy or damage like Marsh II. It doesn’t mean that you have a less severe case of celiac disease, just a different level of damage.

Q. My doctor did the biopsy first and then the blood tests.

A. Occasionally you find that people do the biopsy and then they do the blood work afterwards. In fact, it’s the preference to do it the other way around. There are risks associated with having an endoscopy procedure. For children, its anesthesia; for adults, it’s sedation. It’s not a light level of risk. So we want to make sure that we’re doing the right thing, and that’s why the blood tests should go first; however, your doctor probably said “I know what I’m seeing on a biopsy slide, but I just want to make sure.” And, by the way, there are lots of indications on a biopsy slide that could be celiac disease or a physician may interpret them as something else. So it depends on who’s looking at the biopsy samples and ordering the tests afterwards. They may say “I think it’s celiac disease, but I want to make sure.”

Q. I’m concerned about the follow up tests, the tTG and the IgA. I would like to know how many people in this room who were diagnosed more than a year ago have been back and had the annual compliance tests. I hear people say “I don’t have any symptoms, so I must be doing fine.” Am I correct that you have stressed that they need to get these tests every year? If the doctor says, “Why do you need a test?”, then we need a piece of paper that comes from a journal that says “This is recommended that you have.” I tell my doctor. I call up, and I say “It’s time for me to have my test” and they do it. But I just thought everybody did that.

A. Actually, the vast majority of people don’t, and that’s the reason I asked the question, when I asked people what their beliefs were, whether or not you believe that your doctor should be telling you this information or you should be saying it to your doctor. The majority of people think, of course, that their doctor should be doing this, and it would be nice, the icing on the gluten-free cake. But the reality is, in some cases, that that could be an excuse to say “Oh, I’m not going to worry about it” or “I’m not going to mention it.”

Q. They sent the test to Quest Labs and when the results came back I found out that they did not do the test I requested. They said “We don’t have that test, so we did this test.”

A. First of all, for Quest Diagnostics, they don’t do the Endomesial Antibodies test; they do the tTG instead. But, for someone who wants follow up care—that’s the test you want, tissue transglutaminase. I believe that’s their national standard for what they will do. There was a big controversy that we heard about and were involved in a little bit, about the fact that they dropped the EMA, Endomesial Antibody test. So that is the test you want, the tTG. The other thing is, if it goes to Quest, we wouldn’t cry a river. It’s not that you don’t want it to go to an expert laboratory, but if it’s the difference between paying for it or having your insurance company do it, the test is done by a computer, so it doesn’t depend on somebody interpreting it; it’s all done by computer. So, if you can’t have it done by an expert laboratory, you’re not in a situation where you can’t have it done. If it can go to Quest, it can go to Quest. Try to do it through an experienced laboratory such as Prometheus Laboratories or Mayo Clinic first. If you can’t, it’s okay. It will work.

Q. If my 2½-year-old daughter has the blood test and it comes back positive, will they do a scope on her? And is that the only way to figure it out?

A. Yes. They should do an endoscopy. And yes, it is needed. It is anxiety provoking, imagining your child having to go through that procedure. Done in experienced hands, it lasts ten minutes. There’s constantly people in there monitoring and making sure the child’s okay. The value to her throughout her life from having that procedure is extremely important. Just make sure you have a good physician who has done this a lot. Then you have minimized all the risk as much as possible, you’ve put her in experienced hands, and the benefit is extremely important.

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Taming Temptation Tour
Michelle Melin-Rogovin
Questions and Answers from Austin 10/7/04

Q.  I have read that if you have a biopsy and you get a negative result it does not necessarily mean that you do not have celiac disease. They many not get enough samples or they may sample a spot that is not damaged. You can have a negative biopsy result and still have the disease. So, why is it good to get a biopsy?

A.  Let’s flip the question around, “Aren’t the blood tests good enough that we can avoid the biopsy all together?” The answer is they are not perfect. There is a thing called anesthesia and sedation. This is not something you want to put a patient through unless it is necessary. The blood tests tell you if you need to go through the full biopsy. The biopsy is what actually diagnoses celiac disease.

Let’s look at it this way. If I have a tTG (tissue Transglutaminase test) and I have a negative test result. To what degree can I rely on that negative test result? If it is negative, I can rely on that test result up to a 99% degree of certainty.

So, now the question is “If I have a positive tTG, how much can I rely on that test result?” Well we know that it is high enough to have a biopsy but not high enough to make a diagnosis. So, what do you think? It is 33%. It is good enough so that we can say this is a high enough probability that we need to check this out. But, we cannot make the diagnosis from this. So, we cannot rely on the blood tests to diagnose celiac disease.

Q.  Well I am confused. I just read that a negative tTg is frequently wrong. A recent study of people with negative tTg who went on to have the biopsy found some of them to be celiac. The article said that the test results depend on how severe the damage is in the intestine.

A.  There is an alternate explanation. There are a lot of people who have type 1 diabetes, thyroiditis, or other autoimmune conditions that can make the tTg test results unreliable. So, those people should not be given that test. The other thing is, if you have a negative test result and you have symptoms should you stop there? No, absolutely not. That is when you need to say I need this other test to confirm if I have a problem that can be related to celiac disease.

One study is fine. But, one study is one study. The preponderance of research has been that the tTg test is a very effective way to identify who needs to go on to the biopsy. To get back to the earlier question about biopsies, it is also important to have a physician who knows where to biopsy the intestine. Because, you cannot just take samples here and there and hope to find something out. Statistically we know that there are certain areas in the intestine where celiac disease is likely to start. Making sure you have a physician who has done this before can help make sure that that biopsy is ultimately successful.

The other thing if you have a negative biopsy and you feel that you have all the symptoms. You can have those biopsy samples reread by an experienced pathologist. That is the thing that most people do not think about. If you are at a community hospital where they look at just a few celiac slides a year that is not enough. If you send these to an experienced center, they are looking at hundreds of biopsies and they can find very subtle signs of celiac disease that another pathologist might miss.

Q. Are you familiar with the stool test that Dr. Fine does?

A. Yes, I know of it.

Q. What do you think of the stool test as opposed to the need to do all these other tests?

A.  The way that medical technologies are developed in this country, in order to help physicians know how to use tests and know what the test results mean, is pretty straightforward. A new test has to be compared to the best possible test that is out there. Is it better? Is it worse? Then you want to replicate your results. If a patient is tested in Ohio, will they have the same test results in California? At every stage of the process you are making sure internally and externally that this test is valid. All of this is published in medical journals and reviewed by physicians. After all of these steps are taken, when a patient comes in and says here are my test results, the physician understands that test and can make decisions based on these results. Unfortunately, there is no data on stool testing. So, I am not able to tell you if it is accurate or not.

Q. What about the gene for celiac?

A. 35% of people in the United States have the gene for celiac disease. Only 1 to 2% of them will actually develop the condition.

Q.  My kids have celiac disease. My husband and I have both tested negative. Do we ever have to be tested again?

A.  Yes, all close relatives who have been tested need to be retested. The antibody test is a snapshot of your intestine at that moment in time. That picture changes over time. Antibodies go up and down in our blood stream all the time. Based on what we eat and other things that are going on. So, when we do the test I can tell you with virtual certainty that nothing is going on right now. But, I cannot tell that that will be true for the rest of your life.

Does anyone know the most common age at which you are diagnosed with celiac in this country? It is between 40 and 60 years of age. Celiac disease can develop at any time. Therefore, it is important to be tested on an ongoing basis because you want to catch this as early as possible to mitigate any complications.

As long as you remain symptom free you should be tested about every other year.

Q.  If you have family members with celiac and are all eating gluten-free at home and you are having these follow-up tests, is the occasional gluten you get outside the house going to sufficient for testing?

A.  If you are in a gluten-free household and you need to be tested, it will be difficult. If you are eating something with gluten in it everyday, you should be fine, depending on the amount eaten. For people who eat mostly gluten-free, considering the gene test is going to be important.

There are no hard and fast rules for this question. We really do not have good studies that tell us what to do. What we do know from clinical experience is that if you have someone hasn’t had the biopsy or blood test for celiac disease and they have been gluten-free for a short time (2 weeks to 2 months), they still have the opportunity to be tested. But, if you are talking about someone who has been on a gluten-free diet for a longer time (2 years or more), his or her only option is the genetic test.
Whenever a doctor orders a test the question has to be “is this test going to be of benefit to the person receiving it?” And for a non-celiac family member living in a gluten-free house it is hard for us to say if your negative test result is truly negative. It is possible that it is negative because you have been eating virtually no gluten.

Q. Does the fact that you have the gene mean that you have celiac disease?

A.  You can test positive for the gene and not have celiac. In fact, it is most common that even if you have the gene you will not develop celiac disease because only a small percentage of people do.

Q. If you have the gene and then have a negative tTg is it still a 99% likelihood that you do not have celiac?

A. Yes, you are good for 2 years and then you get another tTg test. 

Q. Should you bother even doing the gene test, if you know that a child of yours or a grandchild of yours has celiac?

A.  This is a good point. There are candidates for the gene test and there are people who do not really need it. You have to ask the question “What is the benefit that is to be gained from someone receiving a test?” First of all, in a lot of families with young children where there is a child or a parent with celiac disease, they worry about the other kids. That is a perfectly appropriate use of the gene test. You would do the gene test on the children without celiac disease. There is no reason to do the gene test on someone with celiac disease. The other circumstance is someone who is living in a gluten-free household or someone who has gone gluten-free before being diagnosed. The gene test is most appropriate for that group of people as well.

If you have someone in your family with celiac disease, do you know what the percentage chance the other members of your family having celiac? There is a 10% that other family members also have it. So, if I have celiac disease and my child does not, my child has a 10% risk.

Q.  I am pregnant and I am celiac. When do I introduce cereals and when should my child be tested?

A.  Right now, it looks like the research is confirming what we have recommended to new parents all along. First of all you are born with genes. So, you can have your genes tested at any time. Your child could have the celiac gene test right in the nursery. Remember that even if the child has the gene, chances are that the child will not develop celiac disease. So, the recommendation is to start regular cereal when you would normally start it, between 4 and 6 months of age.

Most families are told that for a wheat allergy you would delay introducing cereal. And for a wheat allergy that is appropriate. But for celiac disease it is not. Introduce cereals on the timetable that you would for any new baby.

Q. If the child has the gene then when would you start to test him or her?

A. Research tells us that if you have a child that is gene positive you can begin testing at age 3. The antibody tests are not as accurate before age 3.

Q. What if my child was ill and diagnosed before age 3, are the tests not accurate?

A.  This is really a guideline for screening. If your child is perfectly healthy with no symptoms, you should wait until 3. But if the child is symptomatic and above the age of 2, you can try the testing. But keep in mind, if there is a negative test result but clear symptoms, that child should go right on to biopsy.

Q. Is the capsule biopsy (camera pill that you swallow) of value at all?

A.  The way this works is that you swallow the pill and it takes pictures of your intestines. Also, some of them take one biopsy sample. First, celiac disease is microscopic so this is not of great value in diagnosing celiac disease. Second, in the cases where there is one sample taken, you do not have control over where that sample is taken from. You need at least 4 to 6 biopsy samples from the exact right places to correctly diagnose celiac disease. So, generally you will need the endoscopy procedure.

Q. Are you working on a cure? Something along the lines of eating pizza without repercussions.

A.  This sounds like you are looking for a pill. But, immune therapy actually shows more promise. This would be selectively turning off the autoimmune system so it does not respond to gluten in the same way. This research is currently being done at the University of Chicago. Of course this takes time. But, we are within 5 – 10 years of being able to say how do we turn off the response.

Q.  The doctor did a series of tests on my child. We are not sure if there is celiac but I am confused by all the tests.

A.  Ask for a copy of the test results. You are always entitled to a copy. And, like you said it is very confusing. So, if you have the copy in a file you can remember it better. If you still have questions, the materials I handed out have our phone number on it. If you call us with the results we will walk you through it.

Q.  You stated early that if you have another autoimmune problem it can effect the test results. Is JRA one of them?

A. Not that we know of.

Q.  What about getting the gene test with the mouth swab? Is this a viable option?

A.  We have looked at this a little bit. The first problem with the mouth swab is that you need whole lot of cells. So, technique is an issue. It must be done right to get enough of a sample. Second and more important is what do you do all day? You eat and you drink. All sorts of stuff like bacteria that is in and out of your mouth have DNA of their own. And so the lab has to separate out your DNA to do the test. We do not have any experience with people having inaccurate tests. But, very reputable laboratories have told us that they personally cannot do it because it is too difficult.

Q.  Do you have recommendations of specific labs that we should use?

A.  The anti-gliadin antibody test can be done anywhere. But the tTg should go to Prometheus or Mayo Clinic. Both of those laboratories run enough tests that you will get a reliable result. Now, if you are in an insurance plan and you have no choice for lab work, this is a test that is run by computer. So, we may have less stock in the results than those done by a top-notch lab, but it may be fine. We just encourage people to try to use a top lab.