Celiac disease: Years of pain end with correct
By WENDY JEFFCOAT CRIDER, T&D Features Editor Tuesday, February 17, 20095 comment(s) | Default | Large
For years, Harriet Harter suffered with a constant stomachache. She would eat and immediately get sick. The cramping and bloating were intense.
"Eventually, I got to where I would eat yogurt, and that's about it," the Bowman woman said. "I would try to eat bread ... and I felt like I couldn't digest, like stuff was getting stuck."
She had her gallbladder removed in 2001 after being told that was at the root of her problems.
"I felt a little better for a while," Harter said. "But all the same symptoms came back. ... So I dealt with it and dealt with it."
But by this time, she was beginning to lose her hair and had lost "a bunch of weight" for no other reason than she couldn't eat.
"My skin looked really bad, I had these horrible bags under my eyes. I was tired all the time, depressed," Harter said. "I felt like I had created a disease ... because nobody could figure out what was wrong with me. They would just say, 'Oh, you have acid reflux.'"
But Harter didn't have acid reflux -- or irritable bowel syndrome or Crohn's disease, an inflammatory bowel disease. And while her gallbladder wasn't working as properly as it should, that wasn't the ultimate culprit, either.
Harter has celiac disease, a disorder that, according to the Celiac Disease Foundation, affects one in 133 people and can affect individuals of all ages and races.
Celiac disease is "a multi-symptom, multi-system disorder, activated by eating gluten -- proteins found in wheat, rye and barley" that can ultimately damage the small intestine, which has the job of absorbing food and nutrients, the foundation says.
Normal intestines have finger-like extensions called villi that absorb those nutrients. But in celiac patients, the intestinal lining is damaged or flat, and without villi absorbing nutrients, malabsorption can occur.
Although celiac disease can't be cured, the best way to control it and keep further damage from occurring is through a gluten-free diet.
Dr. Narayanachar S. Murali of Gastroenterology Associates of Orangeburg, citing information from uptodate.com, said while the disease is fairly common, occurring in between 0.5 and 1 percent of the general population in most countries, it is most common in whites, particularly those of northern European ancestry. He said celiac disease is a genetic disorder, and patients with Down's syndrome have a 20-fold higher risk than the general population of having it.
"For many years, celiac disease was defined by a set of classic clinical manifestations," Murali said. "However, refinements in diagnosis and higher suspicion of the disease by doctors is leading to more frequent diagnosis of the problem in people with atypical symptoms or no external manifestations of the disease."
Symptoms can include bloating, gas or abdominal pain; chronic diarrhea or constipation; unexplained weight loss or gain; pale, foul-smelling stool; anemia; bone or joint pain; behavior changes, depression or irritability; vitamin deficiencies; fatigue, weakness or lack of energy; delayed growth or onset of puberty; failure to thrive; missed menstrual periods; infertility; spontaneous miscarriages; canker sores inside the mouth; and tooth discoloration or loss of enamel.
Murali said the complications that can arise from celiac disease range from skin problems to developmental delays, learning problems and arthritis, among others.
"In fact, people with unusually severe dental caries (cavities) or bone loss in the jaw need to be checked for these problems," he said. "I recently diagnosed a 55-year-old lady who came to me with bad breath and progressive tooth decay with celiac disease.
"Patients with celiac disease also appear to have increased risks for a broad spectrum of liver diseases, including acute hepatitis, primary biliary cirrhosis and chronic hepatitis including autoimmune hepatitis. Several reports have suggested increased risk for some malignancies, particularly non-Hodgkin's lymphoma and gastrointestinal cancers in adults with celiac disease, compared to the general population."
Celiac disease is diagnosed through blood screening that tests for antibodies that react to gluten and an endoscopic biopsy of the small bowel, which looks for damage and inflammation. The CDF says when both are positive, a celiac disease diagnosis is made. Genetic tests that identify the markers that can put an individual at high risk of the disease are also available.
When Murali first diagnosed Harter with celiac disease two years ago, she said she felt lost.
"I had a meltdown because I pulled it up on the Internet and thought, 'This is the end of my world,'" the 28-year-old said. "Your life shouldn't revolve around food, but it kind of does, to some degree."
It's a disease that has gotten much more attention in recent years, Murali said, due to the tests that are available and support groups that raise awareness of the disease.
Harter said she attended such a group in Columbia when she was first diagnosed and was surprised that many of the people there were much older than her.
"Most people diagnosed are in their 70s, so they've gone forever with this problem and not known what it was, because nobody would ever diagnose it," she said. Harter has her own theory on why it's so prevalent now. "Our moms probably wouldn't talk about going to the bathroom, but I think people are just more inclined to talk about things like that. ... And I think more people in our era go to the doctor."
Harter has had to totally change her diet; all of the foods she thought were good for her body were the same ones that were hurting her.
"I try to be a healthy person ... and I love cereal," she said. "And I'd done Weight Watchers, like, two years ahead of that, and remember that my stomach hurt all the time. ... Reduced-fat stuff comes from wheat. So all the stuff I thought I should be eating was stuff that absolutely ruined my stomach.
"It's in everything. A can of soup -- vegetable soup, it's going to have wheat in it. I don't buy hardly anything in a can anymore. If it's a vegetable, just a plain vegetable straight out of a can, I can do that, but I just have to read."
Harter has taught herself to make her own flour, which she, in turn, can use for pizza crusts, bread and in preparing other gluten-free items.
Because Harter's husband J.R. does not have celiac disease, and neither of her two young children,
daughter Emily and son Trace, have shown the potential for it either, she said there are still many items in their home that are not gluten-free, although the whole family will eat larger gluten-free meals together.
"Now I won't let them have my waffles because they're very expensive -- and they're not that good," she said, adding that maintaining a gluten-free lifestyle does hurt her wallet.
While some celiac patients can eat gluten-laden items in moderation, Harter said any amount gives her stomach a fit. She even has to check medications because they, too, can contain gluten, and she has to be extra careful when dining at restaurants. But she's not tempted in the least to revert back to her old eating habits, although she does miss a good, crusty pizza.
"I know what it's going to feel like, and I would just rather not suffer," Harter said. "It only took me three days to be on the diet, and I noticed a difference. Just that quick."
Besides, she gets to eat all the ice cream she wants, as long as she reads the label.
T&D Features Editor Wendy Jeffcoat Crider can be reached by e-mail at wjeffcoat@timesanddemocrat.com or by telephone at 803-533-5546. Discuss this and other stories online at TheTandD.com.
On the Net
http://drmurali.com
http://www.celiac.org
http://www.csaceliacs.org
http://www.glutenfree.com
http://www.nlm.nih.gov/medlineplus/healthtopics.html
For gluten-free flour, tart shell and pastry crust recipes, see Wednesday's edition of The Times and Democrat.
To subscribe to the print edition of The Times and Democrat, click here.
ached nape wrote on Feb 25, 2009 6:36 PM:
And, to take the matter one step further than that suggested by 'irekin', occurrence of the disease is not merely high among first-degree relatives, it IS genetically passed from generation to generation - period. The tricky bit is that its manifestation - its appearance - can, and does, occasionally skip generations. This alone would suggest that the practice of allowing some family members to avoid the gluten-free diet is ill-advised at best, potentially disastrous at worst. No one in my immediate family ever exhibited any signs of this disease. But, lo and behold, at age sixty, after losing one-quarter of my weight and 3" off my waistline, I was (finally) diagnosed.
Contrary to the 'old folks' reference, coeliac (as it is sometimes spelled) disease was, for a long time, thought to be a childhood affliction; i.e., if you had it, that was when it would show up. This conclusion was made at the time when the symptoms were first noticed, studied, categorized and catalogued. I only know this because, at some point during the first visit with my GE, I mentioned that a good look at myself in the mirror, naked, put me in mind somewhat of photographs of the liberation of internees from Nazi concentration camps at the end of WWII. "That's an interesting observation", he said, "because that's when it was first discovered."
If you'll permit a short and anecdotally accurate history lesson, according to my GE, as the internees were screened for dietary and medical needs, they were put on diets designed to gradually elevate their nutritional intake. During this period, the doctors noted changes in some of the children that were the exact opposite of what they anticipated. The children that were most emaciated began to improve, as expected. Others, however, particularly those who appeared as though they hadn't been interned very long, got progressively worse. By trial-and-error adjustments to the diet, the doctors began to realize it was the breads and other grain products that were causing the problem.
Because this condition was only noticed in the children, it was believed that it likely only occurred in children. This belief persisted for at least the next 25+ years, witness the nature of its mention in one of my wife's nursing school textbooks from the early 70's. In that text, the presentation of any disorder was accompanied by a photograph of a patient afflicted with same. In the section about gastrointestinal disorders, the discussion of coeliac disease was accompanied by a photograph of a child of about 10 years, looking for all the world as though the picture had been taken in 1945 at an Allied medical facility in newly liberated Auschwitz, Buchenwald or Dachau. Here endeth the lesson.
In closing, despite however god-awful most gluten-free products taste, the coeliac has little choice. And please stay away from "snake-oil" remedies that allege improved metabolism of gluten. That's absolute rubbish. Metabolism is not the problem, it's a symptom. Bottom line: you can't hide the gliaden protein from your immune system. Once it's presence is known, all immunological hell breaks loose, with your small intestine the intended target. And it never misses.
Deal with it! "
pamelac wrote on Feb 25, 2009 2:57 PM:
"While some celiac patients can eat gluten-laden items in moderation, Harter said any amount gives her stomach a fit."
I must take issue with this statement. If you have Celiac Disease you can NEVER eat any gluten-laden items-not in moderation, not every other month not EVER. Anytime you ingest gluten you are doing damage to your body. I would like for you to clarify that statement so people that are new to living gluten free do not read into that statement that is is okay to cheat sometimes on this life long diet.
Thank you
Celiac patient diagnosed June 2008 "
irekin wrote on Feb 25, 2009 10:09 AM:
No amount of gluten is recommended for anyone diagnosed with celiac disease - regardless of how well they can tolerate it. Unseen damage is still being done whenever you injust even the smallest amounts. Why would you even take a chance on injesting something that you know significantly increases intestinal cancer rates in patients with this disease. Yes, it is hard to stick to the diet, especially if you are mostly asymptomatic - but it is a life-long necessity for people with the disease.
Additionally, the comments about the age of dianosis are also incorrect, as previously noted by briansb. Patients seeking diagnosis for their problems do typically find themselves sitting in waiting rooms with older people who are having chronic problems, but infants and people of all ages are affected. 1 in 133 Americans are thought to have it - yet 97% are undiagnosed - that is a huge percentage of celiac patients walking around thinking that they have other ailments! Because of the variety of symptoms - the average diagnosis for a celiac patient can be as long as 11 years - no one wants to be sick for that long - especially when you find that simply changing your diet is what will make you feel well again, and is the only thing that will - there is no cure for celiac, and it is only managed by maintaining a STRICT GLUTEN FREE diet for life.
If you are diagnosed - educate your family - they all need to be tested. The occurance among first degree relatives of celiac patients is very high.
Local Support Groups can help you find doctors and gluten free food sources. Look one up in your area, and feel free to visit ours at:
www.birminghamceliac.spaces.live.com "
briansb wrote on Feb 25, 2009 8:40 AM:
Most important, absolutely no amount of gluten is acceptable. Some people may eat it and "tolerate" it, but there is damage going on, it is an autoimmune disease. The other mistake is that most people are diagnosed in their 70's, that simply is not true. I was
taken by the number of elderly in the support group meetings, but people of all age groups are being diagnosed with Celiac Disease.
The rest of the article was well done. "
idealady wrote on Feb 25, 2009 7:14 AM: