The mystery of Celiac disease
Donna Richold suffered for almost five years with repeated bouts of severe abdominal and midback pain.
Multiple visits to doctors and an ultrasound performed on her kidneys still did not diagnose her pain.
As each test returned negative and her condition became more painful, both physically and mentally, she started to become paranoid that the pain was in her head.
Finally a doctor, under the suspicion that she had Celiac disease, ordered a blood test for the presence of wheat antibodies and a colonoscopy.
Her blood tests came back negative, but her colonoscopy showed some bluntness of the villi that line the small intestine, which finally lead to her diagnosis of Celiac disease.
One out of every 500 Bermudians has this illness, according to Jasen Moniz, a King Edward VII Memorial Hospital dietician.
Celiac Sprue, as it is sometimes referred to as, is a malabsorption problem in the small intestine resulting from a reaction to the gliadin fraction in gluten.
Gluten is the common name for the offending proteins in specific cereal grains that are harmful to persons with celiac disease.
These proteins are found in all forms of wheat (including durum, semolina, spelt, kamut, einkorn and faro) and related grains like rye, barley, triticale and oats and must be completely eliminated from a celiac's diet.
Reaction to these grains causes the flattening or shrinking of the villi and microvilli located on the surface of the small intestine, which provide the area for absorption of nutrients from your food.
It was this flattening that initially led to Mrs. Richold's diagnosis, however, the problem with Celiac Disease is that no two cases are alike in terms of both symptoms and reaction to the treatment. Recognition of symptoms by doctors has improved, however.
Ms Moniz said: "No two celiacs have the same symptoms because it is digestive in nature and while some are anaemic from lack of absorption of nutrients, some are lactose intolerant and others aren't.
"In the past when patients would go to doctors they would be told their symptoms were in their head, but now doctors are recognising the auto-immune disease and are ordering the blood tests and procedures needed to diagnosis it."
The experience of Mrs. Richold, owner of Teeter Tot Nursery school, is typical for Celiacs as they can spend months and years suffering with symptoms that range from chronic diarrhoea, to abdominal cramping and bloating and weight loss.
She added: "I don't think I was really following the diet because it's very hard to know what contains flour. But after I met with Jasen Moniz in November at the hospital she gave me a whole packet that really laid out the diet for me."
Liz Boden, one of the founders of the Bermuda Celiac Support Group, had a similar experience when she came down with symptoms.
Ms Boden said: "In 1990, I started losing weight, but I was ravenous. I went to doctors showing them what I was eating in one day, which was just a ridiculous amount and one actually asked me if I was bulimic!"
"A doctor in Boston thought I had a tumour, but I clearly was not bulimic nor did I have a tumour so I stated an elimination diet myself.
"I cut out everything for a month and in a week I felt amazingly better. I jumped out of bed and ran around the house, went for a drive because I had been in bed for six weeks."
Ms Moniz guesses the reason middle-aged women such as Ms Boden and Mrs. Richold are diagnosed more often in Bermuda is because they see their doctors often and they are more likely then men to discuss their symptoms.
While the reaction to gluten may be unpleasant — diarrhoea, throwing up — they are not as immediately life-threatening as say an allergy to shellfish, where the individual may need to receive treatment immediately.
There are, however, serious consequences to not giving up your pizza.
For children it may mean not growing, irritability and behaviour problems which often lead to a child being diagnosed with ADHD and given Ritalin rather than seeing the real issue.
In fact, Ms Boden remembers helping a boy of about nine years old who was on Ritalin and was not growing properly when his parents brought him to her.
She suggested that they start him on a gluten-free diet and within a couple of weeks his behaviour problems had resolved and, because they caught him before puberty, he was able to grow properly.
Recent studies of children showing autistic tendencies find that after eliminating gluten from their diets the parents are able to sleep through the night and are able to interact with their children may even begin speaking.
Continued malabsorption in adults is linked to osteoporosis, diabetes and lymphoma of the digestive track.
Twenty years ago seeing a dietician when finally diagnosed may not have even been an option for celiacs which is why Ms Boden and Monica Jones, both diagnosed in 1989, started the Bermuda Support Group.
Ms Jones' symptoms developed after she gave birth to her first child.
She soon had a feeling of "not being right".
Like Ms Boden, she diagnosed herself by eliminating wheat products from her diet and then when her little boy showed developmental problems and the doctors thought he might be autistic, she also put him on a gluten-free diet.
He showed immediate improvement that everyone from his teachers to the doctors noticed.
"We got together to raise awareness in the public and to take newly diagnosed celiacs around the shops and help them."
Ms Boden added: "The group grew to about 30 people and we managed to work with the supermarkets here and the restaurants to start bring in and serving gluten-free food.
"The group has fallen by the wayside as Monica and I just were not able to maintain it, but I still see about six people a year to help them go around the stores."
Awareness is now increasing as more stores in Bermuda are carrying gluten-free products and more doctors are schooled in recognising the symptoms.
However, that wasn't the case 18 years ago when Dr. Wilbur Warner, Internal Medicine and Chief of Medicine at KEMH, returned from his training in Canada.
He was one of the first doctors to start diagnosing celiac disease in Bermuda, by ordering blood tests for his patients who showed the symptoms, as well as endoscopies.
Dr. Warner said: "I have seen 30 to 35 patients over the years and most are from the UK or their parents are because it is more common in Caucasians with Irish background though I have has a few black patients.
"The first thing I do with a patient who comes in with abdominal pain, chronic diarrhoea and inability to gain weight is to understand their history so how long have they had it and how often.
"Sometimes, though, the tests come back negative, but if the problems continue I tell the patient to try the diet and see how you feel, which is really the only way to tell if you have it regardless of the tests."Symptoms of Celiac
[bul] Six months to three years: growth failure, irritability, may have diarrhoea, projectile vomiting and a bloated abdomen.
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[bul] Weight loss, chronic diarrhoea, abdominal cramping and bloating, intestinal gas, abdominal distention, muscle wasting.
[bul] Appetite is often increased to the point of craving food.
[bul] Weakness, lack of energy and fatigue are common.
[bul] A less common problem is the gluten-related skin disorder, dermatitis herpetiformis which appears as small itchy blisters on the skin surface in areas such as elbows, knees and feet.
