The more you learn about celiac disease the more you realize that the information changes

[Yvonne (Vonnie) Mostat, RN]

The more you learn about celiac disease the more you realize that the information changes. And, the Mayo Clinic indicates that we have barely begun to know all there is about celiac disease, Did you know that according to the World Gastroenterology Organization, celiac disease may be divided into two types:  Classical and non-classical. Classical celiac disease patients have signs and symptoms of malabsorption, including diarrhea, steatorrhea (pale, foul-smelling, fatty stools), and weight loss or growth failure in children. In non-classical celiac disease patients may have mild gastrointestinal symptoms without clear signs of malabsorption or may have seemingly unrelated symptoms. They may suffer from abdominal distension and pain, and/or other symptoms such as iron-deficiency anemia, chronic fatigue, Chronic migraine, peripheral neuropathy, (tingling, numbness or pain or feet), unexplained chronic hypertransaminasemia, (elevated liver enzymes) reduced bone mass/early menopause and unexplained infertility, dental enamel defects, depression and anxiety, dermatitis herpetiformis, (itchy skin rash) etc.

SILENT CELIAC DISEASE is also known as asymptomatic celiac disease. Patients do not complain of any symptoms, but still experience villous atrophy damage to their small intestine. Studies by the Mayo Clinic indicate that patients do not complain of any symptoms, but still experience villous atrophy damage to their small intestine, Studies show that 3even though patients thought they had no thought they had no symptoms, after going on a strict gluten-free diet they report better health and a reduction in acid reflux, abdominal bloating and distention and flatulence. First degree relatives (parents,siblings, children), whether or not experiencing symptoms, should always be screened, since three is a 1 in 10 risk of developing celiac disease.

The number of ways celiac disease can affect patients, combined with a lack of training in medical schools and primary care residency programs, contributes to the poor diagnosis rate in the United States. Currently it is estimated that 80% of the celiac disease population remains undiagnosed ... even today.

CDF offers a Symptoms Checklist to help you and your physician determine if you should be tested for celiac disease.. First degree relatives (parent, child, sibling) should also be screened since they have a 1 in 10 risk of developing celiac disease compared to the general population risk of 1 in 10 risk of developing celiac disease compared to the general population risk of 1 in 100. {If you THINK I am typing that wrong you are Welcome to check

for yourself. It is a large difference I know. I was guilty of not "suggesting" that our grand-daughter be checked for celiac disease.  She always had abdominal pain, not always after eating.  She was checked for celiac disease through the blood tests, no luck!  The physician they see thought she had a milk allergy.... in university already?  So they went to Soy milk and avoided most dairy. She was no better. We figured maybe it was at exam time that set her tummy to aching.  But interfering grandmother here kept telling them that my brother and his adult son and myself all had celiac disease and the blood test for celiac disease is not always correct.  Naturally she did not want to do the gastroscopy or examination of the jejeunum, it is not pleasant. But she lost weight and was pretty miserable.  They decided maybe I did know something and she underwent further testing.  She went off all gluten and you know what, she is a celiac!  If at first you don't succeed consider a further avenue.  Remember, 25 years ago examining the jejeunum was the only way we had of checking for celiac disease.  When my scalp was covered in DH sores and I was considering shaving off all my hair the dermatologist got involved with my care.  Three separate biopsies of the sores yielded nothing. I was quite discouraged.  I called him one day and told him I had a garden patch of these sores behind my right eat that were driving me crazy.  He spoke to his university professor who suggested Dapsone.  Sure enough, the spots cleared up within four days, the scalp ones about a week.  Apparently, his instructor at University told him that Dapsone was the gold standard for checking for dermatitis herpetiformis. The fourth biopsy proved positive.  He indicated that dermatitis herpetiformis is one of the hardest part of celiac disease, dermatitis herpetiformis, and I was quite thrilled to receive a positive.

I have been quite ill over the winter months this past year with lung problems. My hemoglobin was so low I had to have transfusions. I thought maybe something was sneaking into my diet unbeknown to me.  Again the dermatologist instructor told the dermatologist that this was one of the hardest parts of the disease to diagnoses and you can get many false negatives with it.  That Dapsone is the Gold Seal for checking for Dermatitis Herpetiformis. .  I was so thrilled and thankful that my legs cleared in three to four days. In those days I used white nursing panti-hose and seeing the blood through the holes was so embarrassing. I had to take a change of panti-hose to work every day and change them at noon hour.

Being quite sill this past Winter dear friends decided to bring us food for suppers.  They know I am a celiac, but do not know exactly what it means.  Ray enjoyed the pineapple upside down cake, and the buns, and the glazed carrots, thickened with flour.  Now at our church they actually have gluten free crackers put in a cupcake paper for those of us who cannot accept the communion bread and it is wonderful.  There are ways of getting around things, and I think that is the beauty of of the BLOG, sharing and caring.

NON-CELIAC WHEAT SENSITIVITY:   some PEOPLE EXPERIENCE SYMPTOMS FOUND IN CELIAC DISEASE, SUCH AS "FOGGY MIND" DEPRESSION, ADHD, LIKE BEHAVIOR, ABDMINAL PAIN, BLOATING, DIARRHEA, CONSTIPATION, HEADACHES, BONE OR JOINT PAIN AND CHRONIC FATIGUE WHEN THEY HAVE GLUTEN IN THEIR DIET. YET THEY DO NOT TEST POSITIVE FOR CELIAC DISEASE.  The terms non-celiac gluten sensitivity  (NCGS) and non-celiac wheat sensitivity (NCWS) are generally used to refer to this condition, when removing gluten from the diet resolves symptoms .

*Note to SELF:   Learn more abut Non-Celiac Wheat Sensitivity

The Celiac Disease Foundation can help you find the right doctor to discuss symptoms, diagnose, and treat celiac disease. They have a nationwide HEALTHCARE PRACTITIONER DIRECTORY list with primary care physicians and specialists and dieticians and mental health professionals, experienced in celiac disease and non-celiac wheat sensitivity.

It concerns me when I read that more than half of adults with celiac disease have signs and symptoms that are not related to the digestive system, including:-

Anemia, usually resulting from iron deficiency

Loss of bone densitiy, itchy, blistery skin rash (dermatitis herpetiformis)

You see, with celiac disease (gluten sensitive enteropathy), sometimes called sprue or coeliac, is an immune reaction to eating gluten, a protein found in wheat, barley and rye, If you have celiac disease, eating gluten triggers an immune response in your small intestine. Over time, this reaction damages your small intestine's lining and prevents absorption of some nutrients (malabsorption). The intestinal damage often causes diarrhea, fatigue, weight loss, bloating and anemia, and can lead to serious complications.

in CHILDREN, malabsorption can affect growth and development, in addition to the symptoms seen in adults. For most people following a strict gluten-free diet can help manage symptoms . There is no cure for celiac disease - but most people, following a strict gluten-free diet can help manage symptoms and promote intestinal healing.

During the time I was volunteering for the Dietician at our local hospital. There was a very heavy boy who attended, likely at the age of 10 or 11.  The parents had him see a pediatrician who diagnosed ADHA. Attention Deficit Disorder. She advised taking him off all soda pop drinks and all processed meats. This is always a help, but when the parent is at work they do not know what their school age child is eating. The child complains of abdominal pain and nausea and vomiting, Getting a diagnosis of ADHD is not going to cure celiac disease. There is no cure for celiac disease except  a strict gluten free diet.. The parents were not aware that their early or pre-teen was going to the 7-11 Store on the way home from school and purchasing a fast good product as well as their biggest diet soda.  Their son's weight soared up to 123 pounds by the time he was 10 and the mother was going crazy wondering what was wrong with her child, and the child's manner and hyperactivity were through the roof. Blaming herself was not the answer.  She saw a pediatrician who dealt with celiac disease and over the next six months the child was seen and weighed weekly. It had to be a parent/child act and certainly the boy was reluctant to tell his mother what he was buying on the way home from school.. She did remove all soda pop from their fridge at home,and did not buy processed meats. She encouraged her child to stay away from the corner store, eat gluten free crackers instead of bread and offered a reward system, not only for weight loss butquestioning him on how he was feeling. His behaviour to his siblings was coming to the forefront.  She talked to the two siblings and asked for their help; this did not go well because they were not going to sneak or squeal on their brother.

There is a great folder put out my the University of Chicago Medicine Department and you can get one simply by asking. There are articles by Dr. Guandalini a well-known celiac disease physician who deals a lot with children's issues.  Unfortunately her lectures are in Sorrento, Italy, but you can get. Dr. Alession Fasano spent 1/2 hours debating between Drs. Freedman and Szajewska on the role of Lacto bacillus GG in gastroenteritis. Even if you cannot fly ti Italy these lectures and publications can be made available by simply asking the Chicago Medicine (cureceliac) Children's Hospital Section is under the Session Chief - Ritu Verma, MBChB Section Chief, the University of Chicago Children's Hospital Pediatric Gastroenterology and Hepatology and Nutrition Centre.

You will be surprised at how readily they will respond to your enquiries.

's Hospital