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[prissmom]

 http://www.thetandd.com/articles/2009/02/17/features/13426386.txt

Celiac disease: Years of pain end with correct

By WENDY JEFFCOAT CRIDER, T&D Features EditorTuesday, February 17, 2009

3 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 [e-mail] or by telephone at 803-533-5546. Discuss this and other stories online at TheTandD.com.

[thehealthieryou]

I just posted this article on my website today, unfortunatly she has not found good GF foods and is not happy with a lot of selections out there so anyone reading the article is going to think the diet is horrible.  She also states that most canned foods are not GF which is not the case, I have found numerous soups, chilli, that are GF. I posted it anyway for the diagnostic part of it.

[prissmom]

 It reminded me of how long it took to diagnose me.  Hind sight is now so clear.  I had symptoms for years that were missed by everyone and suffered 1 1/2 years of all kinds of tests, medications and misery.  then there was 4 months of not being able to keep anything in my body. 

  They had to give me IV fluids so many times to keep me hydrated.  At one point had me in the hospital on mega IV antibiotics, in isolation because having ruled out cancer and so many other things it was to the point where I was in such bad shape that my entire Immunesystem was out of whack that they feared I had some deadly disease.  I was beginning to think I was going to die from what ever it was.

  I still get immediately sick from the smallest amount of gluten.  I got sick at a restaurant from their Gluten Free menu and barely made it to the ladies room.  On the plus side they comped both of our meals  (John had mine for lunch the next day)  and they gave us $50 of gift cards for next time.  (I'm thinking great gifts) :)

   Its the problem getting diagnosed, the time and money it takes with all of the wrong moves, the absolute agony of going through the whole ordeal and coming out 100 lb lighter from the 100 that the undiagnosed Thyroid problem added.  It all goes hand in hand.

   My Mom was a Nutritionist and I can't help but wonder if her Alzheimer's hadn't set in if she would have known long before the Dr's.  Irony in truth.

   Everyone miss the most obvious signs and hit me with all of the diagnosis at the same time.  We should not have to go through this nightmare and still people do not know what Celiac or Gluten are.  Even our own local paper has put this story on the back burner for over a year.  Thank you for reminding me to rattle their cages and push for the article if I must write it myself.

  Terry

 

 

 

[thehealthieryou]

My story is very similar to yours, it took about 4 years for me to get diagnosed but I had a Dr who did noting about it, not one blood draw. I had to go out on my own and eventually end up in the University of Washington ER with an IV. That was 12 years ago and I had hoped it was getting better but I have a friend who is going through the process and it seems to be taking so long. Dr's are not testing for this first but putting patients through so many other tests, hopefully articles like this will help them open their eyes.