Sunday, October 12, 2014

Non-celiac gluten sensitivity

“Diets, like clothes, should be tailored to you.” — Joan Rivers

I'VE ALLUDED a few times to Paul's gluten intolerance and mentioned that I'd say more about it in the future. I've just come across an excellent explanatory article in The New York Times that has finally prompted me to fulfill my promise.

The morning of what was to be our first day back at work eight years ago after the Christmas and New Year's holiday break, Paul was giving little indication of willingness to get out of bed. When I made sympathetic noises about how hard it always is to go back to work after a nice break, he almost burst into tears and said, "That's not it. I'm just tired of being in pain every day."

I knew that the joints in Paul's feet hurt with increasing frequency, but we both believed it was his genetic legacy since both his mom and sister have had to have joint surgery on their big toes, and Paul had already been to a foot specialist who told him that yes, he'd have to have the same surgery at some point. But the fact that all of his joints hurt so much came as a shock. 

I adore my husband, and I like to at least imagine that I'm attentive to his well-being. How could I not know this? 

Because Paul is not a complainer, he tends to ignore aches and pains and soldier on, but that can be a very double-edged sword. For Paul to reach a point where he was almost in tears meant that he was in a great deal of pain. 

For a couple of years I'd been suggesting that he visit a particular clinic in Las Vegas that had been highly recommended by a trusted friend who'd had his health rescued there, but Paul demurred. On this morning, however, he volunteered, "I think I want to go to that clinic you've been telling me about."

And a couple of weeks later he was there. It was the start of a somewhat circuitous process of getting Paul on a path to recovery.

The clinic ran lots of tests and concluded that Paul was allergic to wheat among other things. Although now that we know more, we don't believe he has a wheat allergy, it was a clue that, although seemingly so unrelated, his diet might be the cause of his joint pain.

The next piece of the puzzle came by accident. I was chatting with a friend who mentioned celiac disease in passing. I'd never heard of it, but based on Paul's symptoms — in addition to severe joint pain, he'd also had ongoing diarrhea for about two years — it sounded like CD might be the explanation.

After reading up on the disease, I convinced Paul to go on a gluten-free diet, and his joint pain and diarrhea eased up, but we wanted to make sure we were doing the right thing, so Paul went in for the celiac disease blood test. 

It came back negative; now we were really confused. 

A more definitive test would have been a biopsy, but in order for it to be accurate, he would have had to start eating wheat and gluten again and continue for at least two weeks, and he didn't want to put his body through the process of eating what would be harmful to him. Instead he continued on his more or less gluten-free diet.

After awhile, though, Paul fell off the wagon for an extended period of time. After all, the blood test had come back negative, and maintaining an entirely gluten-free diet involves a lot of discipline, not to mention considerable inconvenience. 

His body had something to say about that, however. The joint pain and the diarrhea were back. 

Paul wisely decided to listen to his body instead of the blood test, and we adopted a rigid gluten-free diet which he continues to maintain.

The reward is that the surgery he thought he was doomed to have on his big toes, now seems unnecessary, the intestinal distress is gone and so are the nosebleeds he used to get on a regular basis, and after adhering to a strict diet for some years now, the restless legs problem that used to cause him so much misery has also disappeared.

Despite our success, because our methodology was trial and error, from time to time we've both wondered if we'd cobbled together the right answer. Recent research, however, has proven that there's much more to the whole gluten issue than a simple yes or no to celiac disease.

This article from The New York Times has clarified much to us and validated our decisions. It's the second of two articles. I'll share the first one in a few days and yet another article I've found a few days after that because I believe understanding celiac disease and non-celiac gluten sensitivity may help many people be healthier. Maybe you.

When Gluten Sensitivity Isn’t Celiac Disease
By Jane E. Brody  
OctoberR 6, 2014

My nephew, sister-in-law and several others I know are on gluten-free diets, helping to support a market for these foods that is expected to reach $15 billion in annual sales by 2016.

Supermarket shelves are now packed with foods labeled gluten-free (including some, like peanut and almond butter, that naturally lack gluten). Chefs, too, have joined the cause: Many high-end restaurants and even pizza parlors now offer gluten-free dishes.

Those who say they react to gluten, a protein in wheat and other grains, report symptoms like abdominal pain; bloating; gas; diarrhea; headache; fatigue; joint pain; foggy mind; numbness in the legs, arms or fingers; and balance problems after eating a gluten-rich food.

I suspected at first that the gluten-free craze was an attempt by some to find a physical explanation for emotional problems, similar to the “epidemic” of hypoglycemia in decades past. But a growing body of research indicates that many may be suffering a real condition called non-celiac gluten sensitivity, or NCGS.

It is not celiac disease, a far less common autoimmune condition that can destroy the small intestine. Indeed, no one has conclusively identified a physical explanation for gluten sensitivity and its array of symptoms.

Recent studies have strongly suggested that many, and possibly most, people who react badly to gluten may have a more challenging problem: sensitivity to a long list of foods containing certain carbohydrates.

In 2011, Dr. Peter Gibson, a gastroenterologist at Monash University in Victoria, Australia, and his colleagues studied 34 people with irritable bowel syndrome who did not have celiac disease but reacted badly to wheat, a gluten-rich grain. The researchers concluded that non-celiac gluten sensitivity “may exist.”

Many of their subjects still had symptoms on a gluten-free diet, however, which prompted a second study of 37 patients with irritable bowel syndrome and non-celiac gluten sensitivity who were randomly assigned to a two-week diet low in certain carbohydrates, collectively called Fodmaps.

All patients on the special diet improved, but got significantly worse when fed gluten or whey protein. Only 8 percent of the participants reacted specifically to gluten, prompting the researchers to conclude that Fodmaps, not gluten, accounted for most of the distress.

Fodmaps is an acronym for fermentable oligosaccharides, disaccharides, monosaccharides and polyols, sugars that draw water into the intestinal tract. They may be poorly digested or absorbed, and become fodder for colonic bacteria that produce gas and can cause abdominal distress. They are:

■ Fructose: A sugar prominent in apples, pears, watermelon, mangoes, grapes, blueberries, tomatoes and tomato concentrate, and all dried fruits; vegetables like sugar-snap peas, sweet peppers and pickles; honey; agave; and jams, dressings and drinks made with high-fructose corn syrup.

■ Lactose: The sugar in milk from cows, goats and sheep, present in ice cream, soft cheeses, sour cream and custard.

■ Fructans: Soluble fiber found in bananas, garlic, onions, leeks, artichokes, asparagus, beets, wheat and rye.

■ Galactans: Complex sugars prominent in dried peas and beans, soybeans, soy milk, broccoli, cabbage and brussels sprouts.

■ Polyols: The sugar alcohols (sweeteners) isomalt, mannitol, sorbitol and xylitol, present in stone fruits like avocado, cherries, peaches, plums and apricots.

People with irritable bowel syndrome often find that their symptoms lessen or disappear when avoiding foods rich in Fodmaps; however, it can take six to eight weeks on a low-Fodmap diet to see a significant improvement.

Experts advise those patients to eliminate all foods rich in Fodmaps at the start. (You can find a list of foods low in these carbohydrates at Once symptoms resolve, individual foods are returned to the diet one by one to identify those to which patients react.

So what about patients who think they are sensitive only to gluten?

Dr. Joseph A. Murray, gastroenterologist at the Mayo Clinic and an expert on celiac disease, urges that they first be tested for celiac disease, a condition that has become dramatically more prevalent in recent decades. The signs of gluten sensitivity often mimic those of celiac disease, as well as irritable bowel syndrome.

Tests for celiac disease are less accurate if the diet does not currently include gluten. “Test first, test right,” Dr. Murray said in an interview. “We’re seeing people with symptoms who go on a gluten-free diet, and then we can’t make a correct diagnosis.”

With non-celiac gluten sensitivity, there is no damage to the small intestine, meaning many people may consume small amounts of gluten without incident. A forthcoming book edited by Dr. Murray, “Mayo Clinic Going Gluten Free,” lists the essential requirements for diagnosis of non-celiac gluten sensitivity:

■ Negative blood tests for celiac disease and no sign of damage on an intestinal biopsy.

■ Symptom improvement when gluten is removed from the diet.

■ Recurrence of symptoms when gluten is reintroduced.

■ No other explanation for the symptoms.

It is not yet known if the condition results from an immunological reaction similar to that seen in celiac disease, or whether gluten exerts a chemical or other negative effect on digestion.

Gluten sensitivity is not the same as a wheat allergy, a far less common problem with symptoms like swelling, itching, skin rash, tingling or burning of the mouth, and nasal congestion.

The best way to test for non-celiac gluten sensitivity (after ruling out celiac disease) is to remove all sources of gluten from one’s diet for several weeks. If the symptoms disappear, reintroduce gluten to see if they recur. Another option is to keep a food diary for a few weeks, recording everything you eat and drink and any symptoms that follow.

In addition to the inconvenience and added expense, a gluten-free diet can result in a poor intake of fiber and certain essential nutrients. It may be wise to consult a registered dietitian if you plan to go gluten-free.

1 comment:

  1. This is great! It took a while to read due to my schedule but I'm so glad to have saved it until I could pay attention. I've been experimenting with it for several months and have found that I do better without it. Wheat - even spelt or ancient grains causes bloating and some other issues. I'll drop 2 to 3 pounds by giving it up for a week. Now you're sort of whetted my interest in being really strict with it for a couple of months to see if some aches and sleeping difficulties could be improved. Thanks so much!!!!!