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Anne's Story

 
11/17/2008

Anne's Story


Anne Luther, 60, a registered nurse at UAMS, learned that she has celiac disease about three months ago. Her main symptoms, fatigue and idiopathic peripheral neuropathy - or IPN, which in her case was mainly pain and tingling in the hands and feet - fell into the rare category, and it was her own research that led her to be tested and diagnosed. Luther isn't sure how long she has had IPN," as my feet have hurt for at least 10 years. In 2000 I noticed that not only was I having foot pain, but my feet were also becoming numb, "she says." Numbness that comes with IPN is very painful - sounds strange, but it's true. I was diagnosed formally with IPN in November 2001 and have been searching since then for a way to stop the progression."

Her search turned to the Internet.

"I found out about my gluten intolerance by trying to figure out why I might have idiopathic peripheral neuropathy. I read on the Net that about 15 percent of people with IPN also have celiac disease, "Luther says.

"Then I read that people who have celiac disease often have thyroid problems and fatigue. I had all those problems and decided that I needed testing. After a lot of research I decided to be tested by www. enterolab. com. (Dr. Kenneth Fine, a gastroenterologist, is the man behind EnteroLab. For more information on Fine, visit www. finerhealth. com and the EnteroLab Web site. EnteroLab testing is out of the mainstream medical community and is not covered by insurance.) "I received my [positive] results on Aug. 8, and started on my gluten-free diet that same day. I will admit that I ate a wonderful sesame-seed bagel the day before wondering if it was to be my last bite of bread - it was."

The change in diet brought speedy results. "By two weeks of eating glutenfree, I started noticing amazing changes in my body and health," Luther says. "My fatigue, which had been so severe that I did nothing but lie around evenings and weekends, was gone.

"Now I have energy to spare even after a nine-hour workday. My mood has brightened - people say that I smile a lot now. My joints don't hurt. My legs feel stronger. I don't have to take antacids and sleep with the head of my bed elevated anymore. My eyes don't feel dry and scratchy or look red and puffy - I even stopped using artificial tears. My skin looks younger" - positive results for someone who wasn't given much hope. "One doctor told me, 'What do you expect - you are old. '... Three times I was offered antidepressants for my fatigue," Luther says.

Now Luther is forming a central Arkansas gluten-intolerant support group. Her unnamed support group has a first meeting scheduled from 6-8 p.m. Nov. 11 at Wild Oats, 10700 N. Rodney Parham Road, Little Rock. UAMS' Nelsen is not only the speaker, Luther says, "but he will be bringing refreshments - home-baked gluten-free goodies."

Luther encourages others to take charge of their own health. "If someone asked me what to do because they suspect they have a problem with gluten, I would encourage them to ask their doctor to have them screened. Celiac disease is under-diagnosed in this country, and many doctors will tell patients that they do not have the disease without testing." I have read that the time between the first symptoms and diagnosis averages about 10-13 years in the [United States]. That is unacceptable. Too many people - me included - have to endure too many years of feeling poorly. Some people get pretty close to dying before being diagnosed, and some do die. "Part of the problem, as Nelsen says and as Luther experienced, is that doctors often don't know what they're looking for - or at." I am not typical of celiac disease when one thinks about celiac disease, "Luther says." Usually a celiac patient is thought to be someone who has terrible gastrointestinal problems and is very thin. Doctors undertest those who have typical symptoms and really miss the ones who don't fit the stereotype of celiac disease. "

Does this story sound similar to your or a family members? You might have celiac disease. Find out now, take our celiac disease symptoms checklist.

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