Babies and Gluten: So Many Questions, Very Few Answers

I feel very lucky to share with all of you that I am a new mommy!

Hayes Miller Wells was born on
April 7th and was quite a little peanut (5 lbs. 13 oz. @ 39 weeks). It's been a typical experience so far...little sleep, pooping constantly, eating every couple of hours...but soon enough he'll stop breastfeeding and start eating real food. All parents with children who suffer from food allergies have the "great fear" that they will be safe at home and at risk out in the real world (aka a friends house).

I have both confusion and fear for my little one and his elevated risk for Celiac Disease, however reports vary so I'm not quite sure HOW likely it is. This article from Everyday Health uses data from the University of Chicago Celiac Disease Center says that his risk is 1 in 22 or 5-10%. However, this Celiac Disease Foundation page claims the risk is 1 in 10 for a close relative such as a child, parent or sibling. Since Celiac Disease is genetically linked, there is a 50% chance he'll carry the gene. While this article is from 2009, I haven't found statistics to the contrary.

As I read articles and peruse research on this topic, there are three main questions I'm looking to have answered:

1. Does introducing gluten vs. avoiding it completely help or hurt his chances of triggering Celiac Disease?
2. At what age should introduction take place to "test the waters" and depending on this answer, what difference can it make?
3. What tests should I have run on Hayes and when?

The short answers to all of these questions seem to be...there is no definitive answer and it depends. Advances in understanding occur all of the time, but that doesn't help a parent who wants a step by step guide to their baby!

There are a couple of points of contention:

• Breastfeeding - research consistently shows that breastfeeding is good for mom and baby. The debated question is whether it helps either prevent or delay the onset of Celiac Disease. 
• This Parents Magazine article tells us that breastfeeding doesn't effect the likelihood or onset of Celiac Disease.
• The Everyday Health article from above says, "breast milk also helps with gastrointestinal function and other areas of development. But research has shown that babies who are at risk for celiac disease may see a delay in symptoms if they’re breastfed. Recent research has found that babies who are breastfed have a lower risk of developing celiac disease later in life."
• Introducing Gluten - again there is debate on when to introduce gluten to babies in general and those with high risk of Celiac Disease. This KevinMD.com article outlines two studies with different findings. 
• The European PreventCD study found no difference in high-risk infants introduced to gluten between 4-6 months and those who were not. 
• This Swedish study claims that the amount of gluten consumed by 2 years of age did impact the prevalence of Celiac Disease in high-risk children.
• The general rule of thumb with allergens is to wait until 12 months to introduce.
• Other parents note that they would prefer to wait and introduce once the child can be tested for Celiac Disease via blood test and/or endoscopy.

Of course, a final consideration is testing. There are blood tests and endoscopy results, both of which require gluten-consumption over a period of time to have accurate results, plus genetic testing. The Celiac Disease Foundation says that blood tests for antibodies shouldn't be done before age 3 and that the genetic test can be done at any time. Additional information on Celiac Disease testing for infants and toddlers can be found here.

So now what? My plan is to continue to talk with new parents, plan on doing a genetic test as soon as my pediatrician recommends, breastfeed until it doesn't work for our family anymore, maintain a gluten-free household and to keep reading - I have 4 more months to learn more before deciding on when to introduce gluten to Hayes. I encourage all Celiac parents to share their "plan" to help us all and provide any information you can about your child and their experience.

Additional articles:

• Parents Magazine - When Should you Introduce Gluten to Your Baby? Well, It Depends.
• Celiac.com - Introducing Gluten to your Infant
• Gluten Free Therapeutics - When Should Gluten be Introduced to Babies?
• The Science of Mom - New Research on Gluten Introduction to Infants and Risk of Celiac Disease
• Kidsmisdiagnosed.org - The Importance of When to Introduce Gluten to a Baby
• University of Chicago Celiac Disease Center - At what age should child get tested for Celiac Disease?
• Beyond Celiac - Celiac Disease in Kids: Getting Tested

Why get diagnosed?

So, there are a number of people who don't think about Celiac disease as a cause of their symptoms. On top of that, many who know a family member who has it don't want to get diagnosed for fear of losing their current lifestyle. However, there are some major long-term effects of untreated Celiac disease and gluten intolerance, including infertility, thyroid problems, cancer, etc. I found a good summary article that is outline below from www.everydayhealth.com - http://www.everydayhealth.com/celiac-disease/celiac-disease-complications.aspx

Complications of Celiac Disease

If the symptoms of celiac disease go unrecognized and untreated, complications can develop.

By Chris Iliades, MD

Medically reviewed by Lindsey Marcellin, MD, MPH

Celiac disease is a common digestive disorder. At one time, it was thought that celiac disease was a disease of childhood and that the most common symptoms were bloating, diarrhea, constipation, and failure to thrive. Now that blood tests can identify celiac disease in adults, we are realizing that it is much more common than once thought.

Celiac Disease: Why It Happens

Celiac disease, also called the "great mimic" disease, can cause many different symptoms and vary from person to person. It is therefore easy for celiac disease to be overlooked or misdiagnosed as another condition, such as irritable bowel syndrome.

"If you have celiac disease, it means that your immune system can't tolerate the protein in wheat, rye, or barley," says John Birk, MD, chief of gastroenterology at the University of Connecticut Health Center in Farmington. "This causes inflammation of your small intestine that decreases your ability to absorb essential nutrients in food. Over time, these nutrient deficits can lead to complications."

Celiac Disease Complications

In adults, the digestive symptoms may be less common and the signs or symptoms of celiac disease may be related to the long-term effects of poor absorption. Some of the more common complications include:

• Malnutrition. Many people with celiac disease will have trouble maintaining a healthy weight and may complain of fatigue and weakness. Blood tests often show iron deficiency despite iron therapy. Vitamins may not be absorbed properly. This failure of the intestine to absorb nutrients is called "malabsorption."
• Bone loss. "Failure to absorb nutrients such as calcium and vitamin D can contribute to poor bone density," notes Dr. Birk. This can lead to osteoporosis, bone pain, and bone weakness that may cause bones to break easily.
• Lactose intolerance. "Lactose intolerance is more common if you have celiac disease but can also be a byproduct of inflammation caused by celiac disease," notes Birk. The inflammation in the lining of your intestine can keep you from producing the enzyme needed to break down lactose, which is the sugar in dairy products. Undigested lactose can cause gas and diarrhea.
• Irritability and depression. Children with celiac disease are extremely irritable. In adults, celiac disease can cause symptoms of depression, lack of energy, and problems with memory and concentration. Research shows that these symptoms may be due to malabsorption of vitamin B6 and tryptophan. These are important nutrients you need to produce chemicals called "neurotransmitters" that stimulate nerve cells in your brain.
• Lymphoma and bowel cancer. If celiac disease is left untreated, it can increase your risk for developing certain types of digestive system cancers. Lymphoma of the small intestine is a rare type of cancer but may be 30 times more common in people with celiac disease. Adenocarcinoma of the intestine and cancer of the esophagus are also more common. This increased risk of cancer is probably due to the irritation and inflammation in untreated celiac disease over a long period of time.
• Low birth-weight babies. This is a common occurrence in women with uncontrolled celiac disease.
• Dental defects. Permanent damage to the enamel of the teeth occurs due to malabsorption of calcium and other minerals.

"The good news is that in most cases the symptoms can be reversed and the complications prevented by a gluten-free diet," says Birk. In about 70 percent of cases, symptoms of celiac disease start to improve within a few weeks. It may take longer for some people, and it may take as long as two years for all the damage in the small intestine to be healed. The sooner you get a proper diagnosis and start a gluten-free diet, the better chance you have of avoiding complications.

Living Without Article: Q&A with Dr. Alessio Fasano

There are a number of articles that catch my attention, but I thought this one would be extra interesting to my readers because it talks about some of the differences they are discovering between wheat allergies, gluten intolerance and celiac disease. The research is moving forward and that is great news for all of us leading a gluten-free lifestyle. Take a minute and check it out below:

Q & A with Alessio Fasano, MD

The latest on gluten sensitivity and celiac disease

A groundbreaking study recently released by the University of Maryland School of Medicine’s Center for Celiac Research demonstrates that gluten sensitivity is a distinct medical condition that differs from celiac disease. Living Without’s editor Alicia Woodward spoke with Alessio Fasano, MD, the study’s lead investigator. A world-renown expert on celiac disease, Fasano is professor of pediatrics, medicine and physiology at the University of Maryland School of Medicine and director of the Center for Celiac Research.

LW Thanks to your team’s research, we now know that gluten sensitivity actually exists. What does this mean to the gluten-free community?

Dr. Fasano In my humble opinion, it’s a big deal. First, we’ve moved gluten sensitivity, also called gluten intolerance, from a nebulous condition to a distinct entity—and one that’s very distinct from celiac disease. Gluten sensitivity affects 6 to 7 times more people than celiac disease so the impact is tremendous. Second, we now understand that reactions to gluten are on a spectrum. The immune system responds to gluten in different ways depending on who you are and your genetic disposition. Third, there’s a lot of confusion in terms of gluten reactions. Gluten and autism, gluten and schizophrenia—is there a link or not? These debates are on their way to being settled. And fourth and most important, for the first time we can advise those people who test negative for celiac disease but insist they’re having a bad reaction to gluten that there may be something there, that they’re not making it up, that they’re not hypochondriacs. Once it’s established that a patient has a bad reaction to gluten, it’s important to determine which part of the spectrum he or she is on before engaging in treatment, which is the gluten-free diet.

Do you believe people can move along this spectrum? Could someone be gluten sensitive and then develop celiac disease?

No, I don’t think so. The three main conditions—celiac disease, gluten sensitivity, wheat allergy—are based on very different mechanisms in the immune system. Given that fact, it’s hard to imagine the possibility that you could jump from one to the other.

Yet many of the symptoms of gluten sensitivity and celiac disease are the same.

That’s right. While there’s a clear distinction on the immunological side, there’s tremendous overlap on the clinical side. If you came to my clinic complaining of tingling in your fingers or depression or headaches from eating gluten, these symptoms (and many others) are associated with celiac disease. If your celiac tests are negative, these same symptoms could point to gluten sensitivity. There’s no question about that.

Up to 20 million Americans may have gluten sensitivity. That’s in addition to 3 million who have celiac disease and 400,000 to 600,000 with wheat allergy. Humans have consumed wheat as a staple for generations. What’s going on?

Although we’ve been eating wheat for thousands of years, we are not engineered to digest gluten. We are able to completely digest every protein we put in our mouths with the exception of one—and that’s gluten. Gluten is a weird protein. We don’t have the enzymes to dismantle it completely, leaving undigested peptides that can be harmful. The immune system may perceive them as an enemy and mount an immune response.

It seems like we’re seeing an explosion of gluten-related health problems.

Two components are coming together to create this perfect storm. First, the grains we’re eating have changed dramatically. In our great-grandparents era, wheat contained very low amounts of gluten and it was harvested once a year. Now we’ve engineered our grains to substantially increase yields and contain characteristics, like more elasticity, that we like. We’re susceptible to the consequences of these extremely rich, gluten-containing grains. Second, and this applies to the prevalence of celiac disease that’s increased 4-fold in the last 40 years, is the upward trend we’re seeing in all autoimmune diseases. We’re changing our environment faster than our bodies can adapt to it.

You mentioned the link between gluten and conditions like autism and schizophrenia. Can you elaborate?

This is very controversial. Some people believe undisputedly that gluten plays a role in these kinds of conditions while others say that’s bogus. Most likely the truth is in the middle. I have a hard time believing that all kids with autism improve once they go on a gluten-free diet. At the same time, I have a hard time believing that gluten has absolutely nothing to do with these behaviors. We know in clinic that people can have behavioral issues due to gluten, such as short-term memory loss, mood swings, depression so you can imagine schizophrenic and autistic behaviors. If it’s true, as I believe, that complex diseases like autism are final destinations but that you can take different paths to get there, I have to believe that one of those paths for a subgroup of patients could, in fact, be gluten sensitivity.

Is there a test for gluten sensitivity?

No. So far, the only way to determine gluten sensitivity is an exclusion diagnosis. You have a problem with gluten. The problem goes away when you go on a gluten-free diet and comes back when you add gluten back into your diet.

What would you advise someone who believes they’re gluten sensitive, given there isn’t a conclusive test right now?

Do not try the gluten-free diet before you see your physician. You must exclude a celiac diagnosis before you start the diet. If celiac disease and wheat allergy and all other causes of your symptoms have been excluded, then and only then is it worthwhile to do a gluten-free trial.

Do you recommend that most people avoid gluten, provided they get tested for celiac disease first?

I wouldn’t go to this extreme because the gluten-free diet isn’t a walk in the park. The bottom line is quality of life. If you’re suffering with symptoms that make your life miserable and you’ve investigated all possible causes, including celiac disease, I don’t see anything wrong with going on the gluten-free diet. If you’re gluten sensitive, you’ll see quick improvement on the diet, a matter of days or weeks at the most. It’s not weeks, months or years like with celiac disease.

Having said that, at the clinic we take care of athletes who are healthy but say they feel much more energetic and have increased endurance on the gluten-free diet. Novak Djokovic, the tennis star who’s gluten sensitive, claims his endurance, capability to concentrate and energy have skyrocketed since going gluten free.

I’ve heard you say that gluten sensitivity is where celiac disease was 30 years ago.

It’s déjà vu. The patients, as usual, were visionary, telling us this stuff existed but healthcare professionals were skeptical. The confusion surrounding gluten sensitivity—testing, biomarkers—is exactly the same confusion we had around celiac disease 30 years ago. So we’re starting all over again now.

What’s surprised you most about the studies you’ve conducted?

I was shocked to learn that certain people have tricks that allow them to tolerate gluten for 60 or 70 years without getting sick—and then suddenly in their mid-70s, they develop celiac disease. This means it’s not destiny. You’re not born to develop celiac disease. That’s mind-blowing to me. So I’m dying to know what kind of tricks these people use to tolerate gluten for so long. If we learn the tricks, we can apply them to everybody at risk for the disease and put them in a stage of tolerance so they’d never get the disease. And here’s another thing—why do they suddenly lose this trick? If we knew, we could use that knowledge to avoid other problems. Celiac disease is a prototype of other conditions, like diabetes, multiple sclerosis, rheumatoid arthritis, cancer, heart attack, stroke. The mechanism is all the same. So if we can understand what the heck is going on with celiac disease, it could lead to huge, huge changes in preventive medicine.

For more about the Center for Celiac Disease Research, visit celiaccenter.org.

Gluten-Free Good for Athletes?

As some of you may have heard, a very (now) famous tennis player is praising the gluten-free diet and crediting it for his improvement on the court; in fact he's got gluten sensitivity. It's well known amongst gluten intolerant individuals that you feel SO much better once you go gluten-free and therefore you have more energy, feel better, etc. I had this same experience and my performance improved across all of my athletic activities (running, yoga, tennis) so I'm glad that he jumped on the bandwagon, however I'm not sure how this translates to other athletes without a diagnosis. Read on below...article from ESPN:

What's up with ... going gluten-free?

Jun 24 | By Julie Upton, M.S., R.D., C.S.S.D.

 Novak Djokovic's recent winning streak stunned tennis commentators, leaving them wondering, "What's this guy on?" The better question is: What is he not consuming? The answer: pasta, bread and other foods containing the wheat protein gluten. Djokovic credits his good-to-great transformation to his recent diet change, saying that he "feels sharper and [has] lost a few pounds." He made the switch last year after his nutritionist determined he was allergic to gluten.

And while the Serbian star was rising through the ranks at the French Open (losing to R-Fed in the semis), another player, Sabine Lisicki, blamed gluten for the cramping and exhaustion that caused her dramatic on-court collapse. "I am sad to say my body let me down," she wrote on her blog. "Doctors recently discovered that I am intolerant to gluten." Lisicki speculates that this condition caused the cramping and exhaustion that led to her being carried off on a stretcher.

The recent spotlight on gluten has many athletes wondering if they, too, should steer clear of the stuff.

The nitty-gritty
A protein in wheat, barley and rye, gluten is found in these grains and the foods made from them. Although oats don't contain it naturally, they're often processed in facilities that handle wheat. Because of its thickening and preservative powers, gluten is also used in a long list of supermarket staples, including ketchup, ice cream, salad dressing, sauces, soups, seasonings, cold cuts, hot dogs, chips and dietary supplements.

While gluten is safe for most, it's no picnic for the 3 million -- or one in 133 -- people with celiac disease, an autoimmune disorder. For people with this hereditary condition, gluten triggers inflammation and damage in the small intestine. That blocks absorption of nutrients, leading to anemia, osteoporosis and other problems.
Much more common, but less serious, is a gluten sensitivity: It's thought that up to one in seven people, like Djokovic, has trouble digesting the protein. Symptoms for this condition and celiac disease are similar; they include fatigue, gas, bloating, stiffness and diarrhea. Because there's no medication or treatment for these conditions, a gluten-free diet comes into play.

The real deal
If you suspect that you're intolerant, see your doc to test for celiac disease. While there are some screens for gluten sensitivity, it isn't an exact science. So you may want to try going gluten-free for a few months to see if you notice a difference. The eating plan requires eliminating all sources of gluten, including even the tiny amount in condiments like soy sauce and ketchup. Along with your usual servings of produce, dairy and proteins, you can substitute rice, corn, millet, potatoes and quinoa for wheat-based carbs.

Triathlete Terra Castro says going gluten-free was key for helping her go pro. "Before I was diagnosed with an intolerance, I felt tired all the time," she said. "It would take me forever to recover." Now she fuels up with quinoa and rice-based breads and pastas. Fellow pro triathlete and celiac sufferer Desiree Ficker said she knows she has to avoid wheat to stay competitive. "After trying several brands, I've found many gluten-free breads and cereals that I like. I also eat more rice and sweet potatoes and bake my own treats," Ficker said. "It's only hard when I'm traveling because airports don't have a lot of options."

But will going gluten-free give all athletes an extra edge? No, said Marie Spano, M.S., R.D., an Atlanta-based sports dietitian. "It will only help those who are truly sensitive to gluten, but it won't benefit those who aren't." She adds that many people also make the mistake of assuming wheat-free cookies and other packaged goods are healthier, but that's not the case. Bottom line: Scan labels and pick those with the best nutritional stats, whether or not they contain gluten.