celiac disease

[larryJ]

This was in my paper this morning.  The weekly column by Joe and Teresa Graedon addressed gluten intolerance and Celiac disease.  As this is one of my many problems, I wanted to post it.  Joe Graedon is a pharmacologist and Teresa Graedon holds a doctorate in medical anthropology and is a nutrition expert.

Entitled:  DO NOT BE A GLUTTON FOR GLUTEN

For years, medical students were taught that celiac disease was extremely rare.   In this condition, the protein in wheat, barley and rye (gluten) triggers an autoimmune response that destroys the intestinal lining.

People with celiac disease develop a range of symptoms when they eat foods made with flour such as bread, pancakes, pretzels, pizza or pasta.  Drinking beer can also trigger problems.

Some individuals experience digestive upset.  Gas, bloating, heartburn, cramping and diarrhea are not uncommon.  Fatigue and anemia also are complications of this disorder.  Migraine headache phenomenon, fibromyalgia, osteoporosis, neuropathy, cognitive impairment and even cancer can be long-term consequences of celiac disease.

Now physicians are recognizing that celiac disease should not be considered rare.  Blood tests reveal that as many as one American in 130 or so may have it, although many are undiagnosed! (American Journal of Gastroenterology, online, March 1, 2011).

Some patients have become frustrated in trying to find the source of their symptoms, however.  Despite difficulties that would suggest celiac disease, blood tests may come up negative.  Here is how one reader describes her experience.

"I am 23 years old, and for many years I have suffered  from irritable bowel syndrome, with diarrhea, chronic fatigue, hair loss, Raynaud's phenomenon, fibromyalgia, peripheral neuropathy, iron deficiency anemia, polycystic ovaries and arthritic pain in my back.  I was diagnosed with all these things separately."

"Doctors  were puzzled about these ailments because I was so young.  They looked for lupus, rheumatoid arthritis, multiple sclerosis and other diseases,, but all the tests were negative."

"Recently, I learned about celiac disease and gluten-free (GF) diet.  I had the blood test for celiac and it was negative, but I went ahead and started following the GF diet."

"In the two weeks since I began GF, my IBS symptoms have disappeared!  My fatigue has lessened.  My hair loss  is decreasing.  I am taking fewer anti-inflammatory medications."

"I have told my sister about it, since celiac disease is hereditary.  She is 37 and was diagnosed with thyroid disease and early-onset osteoporosis as well as severe migraines.  All of these could be symptoms of celiac.  Our mother has terminal adenocarcinoma, and most of her life she struggled with fibromyalgia and IBS."

"I return to my doctor in a few weeks and plan to tell her that the GF diet is working for me despite the blood tests being negative, because I understand that the instance of false negatives is high.  I am so surprised that doctors have missed this possibility with my family for so many years.  All the damage that could have been prevented if we had only known!"

Even people who test negative for celiac disease may react badly to gluten, as two recent studies confirm.  These individuals also benefit from a gluten free diet.

Foods containing gluten are very widespread in the American diet.  Choosing a gluten-free approach requires vigilance, but for those with serious sensitivities, it is worth the effort.

______________________________________________________

My note:  Twelve years ago, I had a seizure.  The doctors told me there was nothing wrong with my neurology or my heart.  They settled on a diagnosis of "sleep seizure."  I doubled my walking exercise and starting loosing weight fast.  I was not heavy.  I weighed 165 which was average for my height.  I quit walking so much.  My weight dropped to 130.  Two and a half years ago, I had a colonoscopy, because of diarrhea, and they found a carcinoma in my large intestine.  I had colon surgery to remove it and 11 lymph nodes also.  In January 2009, I had another seizure do to a deficient dose of dilantin which I had been taking since the first seizure.  Again, they could not find out what caused it other than a low dilantin.  So I underwent all the tests they could give me.  One was an endoscopy where they insert a camera into your small intestine.  The villi that pull the nutrients from food were almost nonexistent.  Hence, I had celiac disease.  I began a GF diet and have not have any of the above mentioned symptoms since.  At first, my wife and I were totally lost as to what I could eat.  But, as time went by and by joining a celiac support group, we learned that it wasn't as hard as it seemed.  There are stores here that sell GF foods, such as breads, pastas, doughnuts, muffins, frozen dinners, all of which are GF.  Fresh fruits and vegetables are welcome and necessary.   Even some of the regular grocery stores are getting into buying more GF products.  I just have to read labels closely and keep my hands off some of the things that are on the table when I go out  for dinner at my kid's houses or restaurants.

I just wanted to share since I saw this article in the paper.

Larryj

[Diane Amberg]

Thanks Larry.

[Ms Bear]

Larry, that was very interesting.  I have a daughter that I will give this too.  I have noticed that the Wal-Mart I shop at has started carrying a lot of glutin-free products, even in the frozen section.

Thank you
Pat

[larryJ]

Sometimes people I talk to tell me they have stomach discomfort all the time, or heartburn almost every time they eat, spicy or not.  Or, some say they have been diagnosed with Irritable Bowel Syndrome (IBS), but no mention by the doctor of celiac disease.  When I found out I had it, I immediately started reading everything I could get my hands on to find out what it was.  One of the first articles I read was by a woman doctor who wrote a book on nutrition and its relation to celiac disease.  There was the part about getting tested, but more importantly, at the end of the article, she said, "Go on a gluten free diet whether you think you have celiac disease or not.  It won't kill you, you won't starve, you will eat healthier and it may solve whatever digestive problems you have.  If it doesn't solve your digestive problems, it is still a good way to consume food.  Just avoid grains like wheat, barley and rye and a few lesser known grains.  We go to Mexican restaurants often and I just love having Huevos Rancheros with rice and beans and CORN tortillas, not flour ones. All you can eat salad bars are a big favorite also, plenty of fresh vegetables and fruits.  I have in my house, wheat-free soy sauce, cream of mushroom soups made by Progresso, not Campbells.  At the health foods store, I stock up on gluten-free bread, blueberry muffins, gluten-free doughnuts, frozen dinners, crackers and chips both gluten free and cookies of all kinds, pancake mix, all made without wheat.  There are websites devoted to GF diets and foods.  Brand names like Hormel beans and chili, etc., are all GF.  There are things to be cautionary of, though.  I can go to McDonald's and get a lettuce wrapped (no bun) cheeseburger, but I usually ask if they fry french fires in the same oil as anything they might bread like chicken nuggets, etc.  I have mentioned on another thread about our In-n-Out hamburgers.  This is a favorite as I can get a "protein cheeseburger" (lettuce wrapped) and their fries are fresh and no worries about the oil as they don't sell anything breaded.  I also found out in my research that even some prescription medicines have gluten in them.  None of mine do, but there are some that do.  I have a list of local restaurants that I can go to that have gluten free meals.  Again, caution is the word here because there is a risk of cross-contamination if the cook uses the same counter to fix a meal with gluten as well as a meal without.

Sorry to rant, but this is a subject close to my heart and my health.

Larryj

[Ross]

This was in my paper this morning.  
Larryj

Good job Larry. I can understand because my wife has what they call a rare hereditary disease. And I had to study up on it because the doctors at a prominent hospital appeared to be experimenting on her. I finally fired three doctors and the whole hospital. All with the approval of my insurance company, I was shocked when the insurance agreed with me. I moved her to another prominent hospital, where they gave her bacterial meningitis and then said I didn't have insurance and they threw her out. I had to administer strong anti-biotics every 4 hours at home.

I just wish I had studied earlier on in her disease, but I do the best I can for her now, because I have studied and today I question everything a doctor says. Thanks to the internet I can keep up with changes. But I don't just settle for one source of information. I try to verify any information through a minimum of three web sites.

My wife has lost her rectum, her colon, 90% of her illeum. She also lost half of her stomach, one third of her pancreas, her dueodeum and my sanity. The hardest thing to deal with is her depression but I kick her around to keep her going.

Keep studying every angle and be as well as you can.

Sincerely Ross

[Diane Amberg]

Bless your heart Ross, and good for you for still having your quirky sense of humor. I know you said your wife's problem is hereditary but what is it? My husbands family has a bad problem with heredity Crohn's Disease and one cousin had major problems too, but not involving the stomach or pancreas. She was an RN and learned to live with her colostomy and taught classes for new ostomy patients. You are very wise to keep up with everything you can learn about the disease! Of course you try to concentrate on what she can do and less on what she can't. Give her a big hug from me and tell her hang in there and enjoy the good days. 

[Ross]

Bless your heart Ross, and good for you for still having your quirky sense of humor. I know you said your wife's problem is hereditary but what is it? 

it's called Familial Adenomateous Polyposis (FAP for short).  It has several syndromes and therefore confuses many doctors.
One time she was in the hospital and had surgery and she was at 70 lbs. I had to fight with the doctor to get her put on TPN. He was concerned about my insurance and I told him that was my concern and his was to do what was best for my wife. She was litterally a walking skeleton with skin. I've almost lost her three times. But I abuse doctors when I have to and her too when I have to. I don't want to lose her.

I would like to be more involved in this beautiful little county but my wife comes first above all else. If I am not at home and my cell phone rings everything is gets dropped. If I have to get home in a hurry the highway is mine. So you can see how this might  interfer with any civic duty.

Quirky sense of humor --- you are so kind. I'm crazy, ten years in the military helped and I'm not saying that is a bad thing. I love life and I get high on life. I dang sure odn't need drugs, unless sugar and chocolate counts. I do have a major problem I believe in the truth.

[Diane Amberg]

Thanks Ross,I don't mean to be nosy but my long EMT back ground makes me want to know as much as I can.

[Ross]

Thanks Ross,I don't mean to be nosy but my long EMT back ground makes me want to know as much as I can.

You are quite welcome Diane. there is just so much more to it than the disease itself I could durn near write a book.
There are things that take place because of the disease and the treatmsnts that are not directly associated with the disease it amazing.
And I am sure that is true with celiac disease. Nothing is as simple as it sounds. That's why I spend a lot of prayers asking for guidance for my wife's well being. To be perfectly honest I don't believe in church or religion but I do believe in God. And boy does he know what a si am.

[larryJ]

So true, Ross.  In researching celiac disease after my diagnosis, I found that celiac disease can be attributed to many other conditions.  Because of the lack of good nutrition (no villi in the small intestine), it can be the cause of anemia, osteoporosis, a contributing factor to COPD, muscle loss, many digestive problems such as chronic diarrhea,, irritable bowel syndrome, colon cancer or carcinomas in the colon and chronic heartburn.  It can be related to seizures.  I have had most of these ailments and some are still ongoing, but, at the same time, following a GF diet has cleared up some of them.  The COPD will never go away, I am on a lifetime commitment of seizure medicine, but the bone loss is better, no digestive problems, the carcinoma removed in surgery and I am still borderline with the anemia.  But it is a heck of lot better than it was before.  So, a gluten free diet and exercise from walking and light weight lifting does the job.  I say all this to spread awareness, not for sympathy.  I am a happy kind of guy and I thank God and the forum for my daily life.  As you know, I love humor and my family, especially my granddaughters.  There will be a day when all that is over, but until that happens, I am not going to dwell on it.   

Larryj