GLUTEN SENSITIVITY: CELIAC DISEASE OR NOT?

Doctors have always talked about gluten in terms of the damage it does to the intestine in celiac disease. Always is actually a relative term, going back to just the 1940s when it was discovered that the damage could be linked to wheat. Children with celiac disease were dying of malnutrition. But then the mortality rate dropped when wheat famine hit northern Europe. And it returned when the famine was over. So wheat was taken out of these children's diets (and all the other diets that had been used, restricting children to fruits or mussels were stopped).   

Celiac disease is diagnosed by a combination of blood tests and an intestinal biopsy. In celiac disease, part of the intestine shows flattening or disruption of the surface when it has really taken hold; or in mild cases, certain cells invade the structures. And typically, antibodies show up in blood tests, reflecting those changes (more about that in another post).

The problem (or the good news, perhaps) is that not all those who are sensitive to gluten have celiac disease. We've learned that from patients who have started gluten restricted diets and feel better even when they haven't been diagnosed with celiac. So that's lead to an entirely new category: non-celiac gluten sensitivity.

Non-Celiac Gluten Sensitivity

First, there are those who have wheat allergy--and that's a separate category.  They have true wheat allergy showing up on skin or reliable blood tests (notice the adjective, since there are lots of tests out that are not reliable). And when that person has wheat, they react with a rash or discomfort for example). They may have other allergies showing up with testing, but they don't usually have a reaction to the other grains (rye, barley and spelt) that are involved with gluten sensitivity.

So that once celiac disease and wheat allergy are excluded, patients who have gluten sensitivity can be recognized with this newly coined condition. This includes some patients with irritable bowel syndrome (IBS or spastic colon, which is a different name for the same thing), some patients with autistic spectrum disorders, chronic fatigue or long-term intestinal complaints.

The important point is that celiac disease and what allergy should be ruled out first with proper testing (while the person is still taking gluten), otherwise it is more difficult to make the diagnosis--and the diagnosis makes a difference in how rigid and restrictive the diet needs to be. The patient with celiac disease needs to devoted to their diet to prevent life-long consequences, while the patient with wheat allergy only needs to focus on eliminating wheat. And someone who has the non-celiac variety can be cautious, but can discuss with their doctor how restrictive they should be..

How Do You Know Whether You Have Non-Celiac Gluten Sensitivity?

Once the other conditions have been looked for and dismissed the only way to tell, at present, is to go on a strict gluten-free diet for 3-4 weeks. Some will notice an improvement right away. In others, especially those in the autistic spectrum, it may take several weeks to see a change. However, if there isn't any difference in a month, it's unlikely there will be one -- and you can assume you are not gluten sensitive.   

CELIAC DISEASE: WHAT IS IT?

"Celiac disease" and particularly "gluten" are the buzz these days, with more people gluten-restricted  than on any other diet. But relatively few understand the disease (also called celiac sprue, or in Europe, coeliac disease). But it is extremely important to understand that this is a life-long condition that, at least for the present, requires dedicated devotion to the diet.

A fraction of certain grains (wheat, rye, spelt and barley) contains gluten, a normally harmless protein that allows dough to hold its shape when it rises. In susceptible infants, children and adults, gluten triggers an immune reaction that damages the upper intestine.

What Makes Someone Susceptible?  

Celiac disease runs in families, as a somewhat complicated genetic condition. The gene is actually present in as many as 1/3 of the population, going from at least one parent to a child, but the disease doesn't actually develop until something turns it on. We think it might be a virus that, in part, has a similar structure to gluten. The body develops an immune reaction to the virus and that carries over so that it also reacts to gluten. So instead, only 1  out of a hundred or so individuals actually has celiac disease.

Gluten Damage

That reaction damages the intestine to various degrees, flattening the surface and interfering with absorption. Because the enzymes to digest lactose (milk sugar) and sucrose (simple sugar) are also temporarily destroyed, the body does not absorb those sugars as well either. Together this can result in severe diarrhea and weight loss (though for some reason, to be discussed in another post, constipation can result as well).

But the effects extend far beyond the intestinal tract. For a child, their growth can be stunted. A bumpy rash (dermatitis herpetiformis) can develop. Fractures can occur more readily (as a result of decreased calcium) absorption; women can have fertility problems; and intestinal cancers can form.

In the past, children suffered horribly and died. In fact, it was only because the death rate went down during a Dutch wheat famine in the 1940s and rose again after the famine was over, that the cause of celiac disease was recognized.

Intestinal Healing

Fortunately, the intestine rapidly repairs itself once gluten is removed from the diet. The intestine heals, absorption is improved, and it seems, the other problems quickly go away. Within days of restricting the responsible grains, children and adults begin to feel better. Within a month, absorption is improved and the lactose enzymes return to their normal digestive processes. And over a number of months, the blood markers improve to the point that most look like they never had the disease. But restart them on a diet that contains gluten (as little as a slice a bread daily), and all the problems quickly return.  

Enormous Confusion

We used to think that celiac disease was a relatively rare condition, affecting only 1 out of 3-5000 children,  mostly those from northern Europe, and that everyone of them had bad diarrhea, bloated bellies and difficulty gaining weight. Because we've been able to diagnose the condition more easily (discussed in a different post), we now know that's not true. And we also know that it's more common in those who have certain other auto-immune conditions (like diabetes and thyroid problems) and in selected genetic defects (like Turner's and Down's syndromes), but the word hasn't gotten out to everyone yet.

The other problem is that celiac disease is only one of a number of similar conditions. Wheat allergy can seem similar (but those with that allergy don't have to restrict other grains). And a newly recognized disorder, currently called non-celiac gluten sensitivity, also exists (and is explored in another post) and another post that discusses safe grains for those with gluten sensitivity (celiac and otherwise).

The Good News

Because the medical community has learned more about the impact of gluten, we've found that the immune reaction disrupts the junctions between cells (often referred to as a leaky gut). This has allowed us to understand the entire illness better. More importantly, it is leading to some possible drugs to combat the problem, so that one day diet may not be the only way to correct the condition (stay tuned).

Bottom Line:

Following the gluten-free diet will stop the symptoms, allow the small intestine to heal, and prevent further damage.  A gluten-free diet can provide all of the nutrition an individual needs.  Fruits, vegetables, corn, potatoes, rice, beans, most dairy products, nuts, seeds, eggs, and plain meats can be eaten on a gluten-free diet.

Some individuals with severe symptoms may need to follow a lactose-free diet until the intestine is healed.  This is because there are decreased amounts of lactase, the enzyme that breaks down lactose, in the damaged intestine.  Lactose intolerance will usually go away within weeks to months of following a gluten-free diet.

WHAT TO WATCH FOR: MILK ALLERGY and LACTOSE INTOLERANCE

The difference as I've pointed out in other posts, is that milk allergy is a reaction to a milk protein (most likely the casein but it could be one of the whey proteins), while lactose intolerance is a usually milder reaction to the sugar in milk.

As a result, with milk allergy, you have to read labels and see whether they list anything that could contain milk protein. These include:

• milk, cow's milk
• milk solids
• casein
• whey
• ·whey protein

You can make a judgment if your or child's condition is relatively mild: milk that has been cooked into a cake or similar will rarely cause a reaction. That's because the cooked protein is now altered, denatured.  However, if milk is one of the primary ingredients (in a pudding for example), I wouldn't want to take the chance.  I am sure some allergists disagree with me and will tell you to avoid anything that could possibly have milk protein, while others might side with my view and be less strict.

Other milky drinks such as rice, almond or soy "milk" can be used instead, and products made from them should be fine too, though a small percentage of children who are milk-allergic will also be allergic to soy. The bigger problem for growing children is that cow's milk has 8 grams of protein in 8 oz, but rice and almond milk only have 1 gram in that same 8 oz. serving. So you will need other good sources of protein to keep your child healthy.

What about Lactose Intolerance?

Lactose intolerance provides a different, but similar, set of circumstances. The problem isn't with the protein, but with the sugar. That's why even if you are lactose intolerant, you or your child can drink real milk where an enzyme has been added to digest the lactose and make it easy to absorb. That digestion does increase the sweetness slightly, but changes nothing else.

You can also eat other dairy products, like butter, ice cream and soft cheeses (cream cheese, cottage cheese and mozzarella, for example) as long as you take the enzyme when you eat. The enzyme will break down the lactose, just as it does in milk. Of course, you have to consider the situation. If you have a slice of pizza, the enzyme will probably work to prevent the gas, pain and diarrhea you might otherwise get.  Eat the whole pizza or an entire milk shake and you will overwhelm your system and what the enzyme can accomplish.

Interestingly, aged cheeses have very little lactose so they can be eaten without taking the enzyme. At the same time, some hot dogs and medicines use lactose as a filler, so you may have to take enzymes along with them.

The enzyme I recommend is Lactaid, because it's effective if you take it when you eat dairy products in modest amounts. I simply don't understand how the once a day enzymes work, since they are needed i   

the intestine along with the food. Some probiotics may also help, since many of the "good" feed on the lactose, meaning that there is less for your intestine to process.

Bottom Line:

If you have lactose intolerance, you can eat modest amounts of dairy products so long as they are either predigested or you take an enzyme when you eat them. But if you have milk allergy, you shouldn't have milk or cow's milk products because the protein could cause another, possibly worse, reaction.

MILK ALLERGY OR LACTOSE INTOLERANCE OR SOMETHING ELSE ENTIRELY?

You may not know it, but most people in the world can't drink milk--not without suffering the consequences of diarrhea, discomfort or gas. They have lactose intolerance. It's hereditary. So at least one of their parents has the same problem. They may not recognize the problem, because over the years they've learned to shy away from milk products. They don't like ice cream or milk, because instead of feeling good when they lick their ice cream cones, they feel bloated and uncomfortable within a few hours.

The reason is that the enzyme, lactase, that breaks down milk sugar in infancy fades away in those with lactose intolerance. Almost everyone in the world is born with lactase enzyme on the tip of the intestinal surface so they can absorb the nutrients in breastmilk (and milk-based formula). But those whose families came from many parts of Africa, Asia, the Mediterranean, that enzyme isn't produced and active after 7 or 8 years of age. You can trace that back to cultures that were more hunters rather than farmers, but that isn't the point here.

That enzyme can also be temporarily damaged if someone gets an intestinal infection where the virus, or bacteria disrupts the intestinal surface. The same is true for those with celiac disease where gluten has injured the surface. But after the infection is over or the gluten is removed, the enzyme usually returns within 4 weeks or so and lactose can be digested again.

Milk Allergy is Different     

Yes, you can have diarrhea or discomfort with milk allergy, but you can also have vomiting or a rash--you won't have those with lactose intolerance. The reason is that instead of not tolerating the sugar, the lactose, an allergy is a reaction to a protein in the milk. There are actually several proteins in milk (casein and those in the whey fraction) and a number of them can cause an allergy.

In simple terms, an allergy is where the a certain fraction of gamma globulins recognizes a foreign protein and mounts a vigorous response against it, essentially trying to fight it off.  The result is the vomiting and discomfort or the rash that will typically return whenever the body comes in contact with even a small amount of that protein. And that speaks of another difference. You don't have to drink but a swallow or two of the milk, and your body will begin an allergic response (if you have the allergy), but if you're lactose intolerant, you can often put a small amount of milk in your coffee or eat a little yogurt without symptoms developing.

What's also different is the time when milk allergy is a problem. Instead of the slow start of lactose intolerance in late childhood, milk allergy mainly affects babies--and most outgrow it entirely by 3 years of age. A word of caution, however: an allergy-like condition called eosinophilic esophagitis which is common in older children and adults often, in part, responds to milk elimination.

But That's Not All Milk Can Do

Milk for some people also increases mucus production even if they don't have true allergies. And milk fat can trigger gallbladder symptoms (for those who should be on a low fat diet) and can slow stomach emptying, making some quite uncomfortable and nauseous. And of course that doesn't speak of raising cholesterol and adding to calories, which is why most adults are switching from whole milk (which has 4% fat) to skim or one of the lower fat milks.  And that's why health organizations suggest even children as low as 18 months begin drinking 2% milk.

Why Drink Milk At All?

No one needs milk. And the problems for people who are lactose intolerant and allergic has caused many to consume less. Enough less, that the American Dairy Association has continued a very effective campaign to help people understand that milk and milk products is an important source for protein, calcium and phosphorous. Additionally, cow's milk is supplemented with Vitamin D--an nutrient that most of us don't get in the quantity we need. Yes, you can get all of these nutrients elsewhere (thank goodness for those who are allergic and can't have any form of cow's milk).

 Yes, lactose-free and lactose-reduced foods are in most grocery stores and yes, there's even a pill those who are lactose intolerant can take when they eat pizza or ice cream that will help them digest and enjoy other dairy products. And there are substitutes that call themselves milks that are drinks with a milky consistency and that have some of the nutrients that cow's milk does (more about that in my other posts and in What to Feed Your Baby).    

Organic milk is available as a healthy choice, because the cows providing that milk are not given hormones, chemicals or medicines that might cause problems for those who drink  it. On the other hand, unpasteurized milk cannot be recommended  because tuberculosis or other infections will not be killed and can pass from infected cows to affect dairy lovers.   

Bottom Line:

People can have different problems with milk. Lactose intolerance can cause diarrhea, bloating, discomfort, and gas--but never vomiting. Milk allergy can cause that vomiting or a rash. And others have problems with milk for a variety of reasons. But for most everyone else (and even for those with lactose intolerance who use one of the predigested milk or an enzyme replacement), milk can provide an important source of protein, calcium, and vitamin D.  

YOUR FOOD DOESN'T AGREE WITH YOU: COULD IT BE AN ALLERGY?

No doubt, you've eaten something in your lifetime that has upset your GI system. You may have been uncomfortable afterwards, with a vague idea that you don't feel well, or you may have had horrible vomiting or diarrhea. It may have lasted for days with you rushing repeatedly to the bathroom, with your stomach and intestine trying to get rid of what ailed you or it might have passed a few short minutes after you took some over the counter medicine.

If it happened just one time, you might have thought the food was tainted with some bacteria, virus, or parasite that got you sick. If it was a severe reaction, your doctor may have been particular questioning you about what and where you ate before it started and whether others you were with were sick as well.  Or he may have  ordered stool studies looking for the bug that may have caused your problems (and those of others in the community).

But if you've had the same problem more than once, bloating and gassiness after a meal, you may have figured that a food (not an infection) was the cause. You may have even suspected a specific food. It could be anything for any of a dozen reasons: your mother has similar problems with that food, or the neighbor down the street's great aunt's second cousin remembers reading about a certain food and those symptoms. Or you may have realized that you just don't feel well the mornings you have milk on your cereal for breakfast.

Does That Mean it's an Allergy?

Lots of Food Reactions exist: Coffee (or the caffeine in it) makes many people jittery. Greasy foods make some people nauseous. Carbonated beverages cause belching. Not one of those is an allergy. They are merely reactions that happen with specific foods--and they occur for a very large number of people.

Milk gives some people gas, discomfort or diarrhea--but that's not an allergy either. Rather it's an intolerance to the sugar, the lactose, in milk and many milk products. That's lactose intolerance. It 's a graded response. Some people can tolerate the amount of lactose in yogurt and soft cheese, and they can eat moderate amounts, but they can't drink much milk or ice cream. Others can't handle the small amount in even a slice of cheese     

On the other hand, anyone with a true milk allergy-anyone who reacts to one of the milk proteins, can't take even the tiniest sip of milk without vomiting, spraying out a bright red rash or both. Again, that's a true allergy, one caused when a certain class of the body's gamma globulins (the IgE) cranks up an almost immediate reaction-one that tells the body not to consume any more.

One of the most impressive examples of that occurred in my office. A baby had severe vomiting and was there for evaluation. While in my waiting area, the baby crawled through an area where someone had spilled milk. the baby liked her hand and immediately began vomiting-severely enough that she almost required IV fluids so she wouldn't become dehydrated.

That's a big difference. The child with lactose intolerance can go to a birthday party and have a little ice cream to go along with the cake, but that would be devastating for the child with a true milk allergy       

How Can I Tell?

Specific IgE blood tests and skin tests will usually show a significant reaction if there's an allergy. But most allergists will also want to know that the person actually reacts to the food, so they will take a detailed history of past events or they might recommend a controlled exposure to that food in their office or in an emergency room, in case the person has a severe response.

And for certain allergies that can provoke life-threatening reactions, like peanuts or shellfish, the allergist may recommend that the allergic person carry an EpiPen, so they can give themselves an emergency shot, should they unknowingly eat a food that even has a trace amount of the food they're allergic to. A little scary, maybe even a lot scary, but obviously very important to know and recognize.