Not so long ago, most doctors were taught that celiac disease is extremely rare. In the last few decades, it has become clear that celiac disease, an inability to digest gluten, is not nearly as unusual as they had thought. Vulnerability to this auto-immune condition is inherited, so when one person in a family is diagnosed, it makes sense to alert all the relatives so that they too can be tested.
Do You Have Celiac Disease?
Q. My brother has celiac disease and called to warn me last year. He asked if I was having lots of hard-to-treat health issues? I replied, yes!
I have headaches that won’t go away plus diarrhea, eye infections, rosacea and stomach problems. I have spent lots of time and dollars in the doctors’ offices and on medications trying to find the cause of all my symptoms. Not one suggested it could be gluten!
A. American physicians were taught that celiac disease (celiac sprue for old timers) was a very rare condition affecting only 1 person out of 5,000. Doctors call this a “zebra.” In medical school they are told that if they hear hoof beats, they should “think horses, not zebras.” In other words, always consider the most common cause for a symptom rather than something “rare.”
Does Celiac Disease Run in the Family?
It turns out that celiac disease is actually more like a horse than a zebra. A study (Riddle et. al. Am J Gastroenterol. 2012, Aug) in 2012 revealed that celiac disease may affect as many as 1 in 100 healthy Caucasians. Sensitivity to gluten runs in families. If a parent, sibling or child has diagnosed celiac disease, the chances that others in the family will also have it becomes 1 in 22.
Many of your symptoms could well be caused by celiac disease, especially the headaches, skin problems and digestive distress. Although some doctors think celiac is primarily a gastrointestinal condition, many other organ systems can be affected. Because the small intestines cannot adequately absorb nutrients, all sorts of damage can occur. A person suffering from celiac disease can become starved for vitamins and minerals. Even though they may eat a perfectly balanced diet, patients are often low in iron, calcium, B vitamins and other essential nutrients.
Celiac Disease and Joint Pain:
Here is one story that links celiac to joint pain:
“I suffered from abdominal pain, gas, bloating, constipation and diarrhea as well as joint pain for over ten years. Three different doctors told me that I suffered from irritable bowel syndrome, with symptoms mild enough to be controlled with over the counter drugs, meditation and other stress reduction techniques.
“My last physician told me that she suspected rheumatoid arthritis because of the joint pain. If it continued for a few more months she’d put me on steroids. At age 30!
“I specifically asked if these problems could be food related, and no one thought they were. Finally I was bedridden four days out of seven with severe abdominal pain and woke each morning with knees so stiff and sore that walking was a chore for the first ten minutes of the day. I consulted a naturopathic doctor who discovered I am sensitive to gluten. Within three days of cutting wheat from my diet, I was a new woman, with no joint or abdominal pain!”
Angular Cheilitis and Gluten Intolerance:
Another reader offered this account:
“Several decades ago I had a persistent problem with cracks at the corners of my mouth. My dentist prescribed a very expensive topical ointment that temporarily relieved the condition.
“When the angular cheilitis was brought to my primary doctor’s attention, he said it was caused by a vitamin B deficiency and prescribed prenatal vitamins for me. This resolved the problem. I was still puzzled, however. When I asked my doctor how I could have a vitamin deficiency even though I ate a well-rounded diet and loved fruits and vegetables, he said that some of us do not absorb nutrients as well as others.
“It turns out that he was right but did not go nearly far enough in trying to uncover the root cause. (I also had slight anemia and some other bothersome chronic problems that were related to nutritional deficits.)
“Twenty years later, I was living in France and being treated for a kidney stone. My French doctors, just by chance, found that I had celiac sprue. Changing my diet by eliminating gluten almost immediately cleared up the myriad problems I had been wrestling with for so many years. My American doctors had been treating me for celiac symptoms for about three decades without ever looking for the cause.
“When I returned to the U.S. in 2000, I asked my American doctor to verify the French diagnosis. His response was puzzlement at the name ‘celiac sprue’ as if I had mentioned some rare exotic disease. He also said he did not know how to test for it!
“One of many lessons here: If you have persistent vitamin or mineral deficiencies, check for malabsorption to try to establish why.”
Symptoms of Celiac Disease:
- Digestive distress: bloating, abdominal pain & cramps, diarrhea
- Fatty floating stools; tan or light gray in color; gas
- Anemia
- Fatigue
- Arthritis or joint pain
- Muscle cramps
- Skin rash (that can be intensely itchy at times)
- Osteoporosis
- Neuropathy (tingling or burning feeling in feet or legs)
- Depression and/or brain fog
- Irritability
- Mouth sores
- Lactose intolerance (reaction to milk sugar)
- Muscle weakness
- Infertility
- Easy bruising
Dr. Peter Green is one of the world’s leading celiac experts. He provided up-the-minute answers to some of the most important questions about celiac disease and gluten intolerance in our one-hour radio show interview. You will find out about:
- Other symptoms that might suggest celiac disease
- The best tests to diagnose celiac disease
- The most common problems with the diagnosis
- The reason so many doctors are still unaware of this condition and how to diagnose it properly
- The way to treat celiac
- Why treatment is so crucial (hint: to avoid the blood cancer lymphoma, and early mortality!)
- What tests to avoid that have not been validated
Non-Celiac Gluten Intolerance:
We also spoke with Dr. Green more recently about non-celiac gluten intolerance and who might benefit from avoiding gluten. That is Show 1049: Do You Need a Gluten-Free Diet?
There is also information about celiac disease in our Guide to Digestive Disorders.
We hope you can avoid some of the complications of celiac disease or gluten intolerance by becoming better informed about this surprisingly common hidden epidemic!
Share your own story by commenting below.
Revised 10/27/16
