Dr. FAQ: Stefano Guandalini on the Future of Celiac Disease Treatment

Stefano Guandalini, MD, founder and medical director of the University of Chicago Celiac Disease Center

Stefano Guandalini, MD, founder and medical director of the University of Chicago Celiac Disease Center

Last week we posted the first part of our conversation with Stefano Guandalini, founder and medical director of the University of Chicago Celiac Disease Center, about the sudden rise in prevalence of celiac, and what he believes is behind it. This week we have the conclusion to that interview, with his thoughts on gluten free diets, the FDA’s recent announcement of strict regulations for labeling of gluten free foods, and what he sees in store for future treatment and a possible cure for celiac disease.

Is a gluten free diet the only treatment for celiac? Is it always effective?

Right now the only available treatment for celiac disease is a gluten free diet for life. The good news about this is that it is effective in the vast majority of patients, especially in children. I’m a pediatric GI specialist, so I deal mostly with children and teenagers, and the response to a well-conducted gluten free diet is extremely high in these patients. I want to say 90 percent of our children respond beautifully to the diet, and it’s so rewarding when you hear mom or dad telling you after weeks of beginning a diet that they have a different child. Their child has back their personality, talking and smiling. The change in mood is actually prominent, especially in young children. And you see these changes already occurring in their eyes, and they’re so ecstatic. That’s one of the reasons the parents become so adamant about never again allowing gluten in their child’s life. Most of them want the whole household to go gluten free.

It may not always be so good in adults, for reasons that are partly unknown. It seems that about 30 percent or so of the adults have that kind of complete remission, and the remaining 60-70 percent may have partial remission of their symptoms. In some cases they still have subtle, or not so subtle, intestinal inflammation. We don’t know completely why this is happening, but one of the reasons that is most common is their diet is not really completely gluten free. The other reason could be that they have been suffering from celiac for a number of years. In children, of course, if you get a 4 year old with celiac, he or she was suffering from celiac at the most a year or two. But in adults you diagnose somebody in her 50s, then the chances are this individual has been dealing with this condition for decades, even though it might not have been very active. So it might take a longer time for the disease to go in remission. In addition it is perhaps easier for a 4-year-old who lives under full control of the parents to maintain a strict diet as it is for a 50-year-old businessman who travels every day, it’s not so easy. So the reality is that the result in adults is suboptimal.

Even though there is less wheat consumed overall, people still run the risk of cross-contamination because gluten is in a lot of processed food products. How can they be sure something is really gluten free?

After many years of insistence by the scientific community, in 2013 the FDA finally issued a rule that makes clear that any product that claims to be gluten free has to contain at most 20 parts per million of gluten. This will go into effect in August 2014, so any product on the market claiming to be gluten free by then will have to be compliant. This is a huge step forward. Once this is in effect it will be much easier for the American public to go out and shop and really trust that whatever they get that says gluten free will be gluten free.

We have reviewed this and I can tell you for a fact that this threshold is absolutely safe for someone with celiac. You would need to eat large amounts, close to two and a half pounds per day of this product to reach an amount that would cause a reaction. So it is extremely safe for all celiac patients, even those who know they are very sensitive to cross contamination.

Will this same rule apply to restaurants offering a gluten free menu?

Unfortunately, no. There are many restaurants these days throughout the United States offering a gluten free menu. This is marvelous, it has been a great plus for celiac patients who can enjoy more normal quality of life with their families. So while I see this as a welcome change, I also would warn about the possibility that not every restaurant claiming to offer a gluten free menu is actually so accurate. We don’t have specific ways of checking each and every restaurant. There are several agencies that claim to be able to certify a restaurant as gluten free, but this is still left to the initiative of a single individual. There is no single governmental control on restaurants offering gluten free menus. So we still have to rely on good common sense of celiac individuals going to these restaurants being able to ask if what’s on the list is truly gluten free.

Gluten free diets have become a bit of a fad lately. Do you think this helps people with celiac, or does it diminish the severity of the disease?

In recent years we’ve seen a lot of people who think a gluten free diet is healthier than a normal diet, or that it may lead to lose weight. This assumption is actually not true. A gluten free diet is not necessarily healthier. It is a medical necessity for celiac individuals, but it is really not a healthier diet for individuals who do not have celiac. In fact, if you rely heavily on gluten free products, you end up having a diet that may be low in fiber or elements such as a calcium and vitamins. Studies have shown that there are some actual deficiencies that can be experienced by people who rely heavily on products that are made gluten free. There is nothing inherently wrong about a gluten free diet, but relying heavily on manufactured foods will expose you to risks, especially lower amount of fiber. This diet can tend to be also higher in carbohydrates and calories, so you may risk putting on some weight, contrary to popular belief.

I think that in general celiac patients have benefitted from the fad or fashion of the gluten free diet, just because the opportunities of having gluten free choices have increased a lot. Products are readily available that are gluten free, especially after the FDA rule has been implemented, and this has resulted in a much better opportunities for them. The only thing that I think I’m even a bit emotional about, even though I don’t have celiac disease myself, is that it’s almost a slap in the face when you hear someone say they went gluten free and lost weight, and then eat a plate of pasta on the weekend. If you have a condition that’s a serious, chronic autoimmune disease, you don’t want to hear this sort of thing.

What do you see in the future for celiac patients? Better diagnosis? More changes to the food industry? Reduced use of gluten in processed foods?

The future of celiac disease has many good things that will come to fruition. One of them that will be readily available in a short time is some form of pill similar to what people who are lactose intolerant can take any time they want eat something that contains lactose. We will have pills available to help digest and detoxify the gluten. Many investigations are in phase 3B of their trials and results will be available very soon. This will lead hopefully the FDA approving some of these treatment options. It won’t allow a celiac patient to go out and eat a complete normal dinner, but it will allow a patient to forget about being extra careful about cross-contamination. For instance, you could ask for a Caesar salad with croutons and then remove some of the croutons and eat the rest, which is a no-no today. Or you could order a hamburger and remove the bun, or eat a few crackers or half a slice of pizza. This would be a great benefit to normalize their quality of life, and this is coming to fruition relatively soon.

The other thing that will be available in the future—and this is the most ambitious goal which several centers, including our own, are working on—is a cure for celiac. We’re talking about reinstating tolerance to gluten in individuals who have had celiac disease for years. This will be the result of some desensitizing injections, similar to what is already happening for people who receive shots for allergies. The idea is that we will have a therapeutic vaccine that will be able to restore tolerance to gluten in the immune system for celiac disease. My expectation is that within the next few-to-several years, this will come to fruition. Again, I don’t have a crystal ball, but it would be a paradigm shift for celiac disease, because people would have the possibility to get cured.

Do you really think there will be a cure for celiac disease in your lifetime?

I am hopeful and confident that in my lifetime there will be a cure for celiac disease. This is not because I expect to live above 100, but because I expect a cure for celiac disease to become available within the next 4-10 years at the most. This will be really so important for the world of celiac patients, but it will also be important because celiac disease is an autoimmune condition. If we are able to unlock all the remaining mysteries to finding a cure for this condition, in the future we will be able to apply this knowledge in other sister autoimmune conditions like type 1 diabetes, Addison’s disease, etc. We can apply this knowledge in concert, and theoretically be able to cure other autoimmune conditions as well. So a lot is at stake.

This is the conclusion of a two-part interview with Dr. Guandalini on celiac disease. You can find the first half here at Science Life.

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About Matt Wood (320 Articles)
Matt Wood is the editor of the Science Life blog and the social media specialist for the University of Chicago Medicine.

2 Comments on Dr. FAQ: Stefano Guandalini on the Future of Celiac Disease Treatment

  1. A cure in 4 – 10 years? I can live happily for that time frame. I’m keeping my fingers crossed.

  2. Would love just to take a pill hate having this disease unfortunatly i am one of the people that has put on weight 4 stone to be exact and am finding it so hard to lose it my sister is also cealiac but has not put on weight so i am fighting 2 battles cealiac disease and trying to lose weight

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