SimpleComplex_CS.qxp

John and Cleo Libonati, the publishers of Glutenfreeworks.com and the highly recommended celiac disease reference, Recognizing Celiac Disease, are proud to bring you "Understanding Celiac Disease," the continuing education article in the June edition of Today's Dietitian Magazine.

Understanding Celiac Disease provides an overview of celiac disease with a concentration on the pathophysiology, symptoms, nutritional deficiencies responsible for gastrointestinal problems, steps for optimal treatment, and dietary sources of nutrients. This important information will help dietitians learn about celiac disease and how to help people get well.

“Recognizing Celiac Disease” is the acclaimed guide to recognizing, diagnosing and managing celiac disease. Recommended by medical experts and national celiac disease support organizations, it is used by healthcare providers and patients in 15 countries. www.recognizingceliacdisease.com

Today’s Dietitian is the only magazine written specifically for dietitians and nutrition professionals. With a readership of 110,000 Today’s Dietitian magazine is the leading news source for dietitians and nutritionists, covering topics such as diabetes management, long-term care, new products and technologies, career strategies, nutrition research updates, supplements, culinary arts, food allergies, fitness, sports medicine, and much more. www.todaysdietitian.com


“An estimated 40 million adult Americans suffer from anxiety disorder.” (1) These 40 million people total 18.1 percent of the United States that are at least 18 or over. (2)

According to "Recognizing Celiac Disease" anxiety is common in people with celiac disease and may be the only manifestation. Celiac disease patients showed high levels of state anxiety in a significantly higher percentage compared to controls - 71.4% vs. 23.7%.(3)

Chronic maladaptive anxiety is characterized by vague uneasiness or unpleasant feeling of apprehension and dysfunction. It is marked by anticipation of danger and interference with normal functioning, ranging from mild qualms and easy startling to occasional panic, often with headaches and fatigue. Deficiency of amino acids and vitamins implicate reduction of synthesis of neurotransmitters in the central nervous system and could be linked to immunological disregulation in celiac disease patients. Anxiety itself causes depletion of vitamins and minerals. Deficient nutrients could be B vitamins, calcium, iron, magnesium, potassium, tryptophan.(3)

A medical study evaluating bloodflow in the brain showed evidence of significant blood flow alteration in the brains of people with celiac disease who had only anxiety or depression neurological symptoms and were not on a gluten-free diet. Single photon computed tomography (SPECT) scan showed at least one hypoperfused brain region in 73% of untreated celiac disease patients compared to 7% of patients on a gluten-free diet and none in controls.(3)

Therefore, bloodflow in the brain and nutritional deficiencies play a large part in anxiety. If nutritional deficiencies are the source of the problem, then medications will be less effective requiring increasingly strong doses because the body and brain do not have what they need to utilize them.

The good news is that studies showed state anxiety improves and can usually disappear in people with celiac disease after withdrawal of gluten from the diet and improvement of nutrient status.

Consider celiac disease if you or someone you know has anxiety.

Related medical studies are referenced in "Recognizing Celiac Disease."

Celiac disease is a multi-system, hereditary, chronic, auto-immune disease estimated to affect 1% of the human population (3 million in the US) that is caused by the ingestion of wheat, barley, rye and oats. It is treated by removing these items from the diet. Signs, symptoms, associated disorders and complications can affect any part of the body and removal of the offending foods can result in complete recovery.

"Recognizing Celiac Disease” is a reader-friendly reference manual written for both medical professionals and the general public that specifically answers the call from the National Institutes of Health for “better education of physicians, dietitians, nurses and other healthcare providers.” It has been endorsed by top medical professionals and professors at Harvard, Columbia, Jefferson and Temple Medical Schools as well as the National Foundation for Celiac Awareness and the Celiac Sprue Association – USA. “Recognizing Celiac Disease” is being hailed as the complete guide to recognizing, diagnosing and managing celiac disease and a must-have for physicians, dietitians, nutritionists, nurses, patients and anyone with an interest in this complex disorder.

Click here for more information.

Sources:

(1) ADAA Brief Overview. ww.adaa.org/GettingHelp/Briefoverview.asp (2) Wikipedia. http://en.wikipedia.org/wiki/Anxiety (3) Libonati, Cleo. Recognizing Celiac Disease, Gluten Free Works Publishing, 2007. http://www.recognizingceliacdisease.com

------------------------ Author Information: John Libonati, Philadelphia, PA Publisher, Glutenfreeworks.com. Editor & Publisher, Recognizing Celiac Disease. John can be reached by e-mail here.

John Libonati

Dental Enamel Defects and Celiac Disease

May 19th, 2009 by John Libonati

dental_defects_celiacdisease

Dentists can be the first identifiers of celiac disease. Up to 89% of people with celiac disease exhibit dental enamel defects. Dental enamel defects are characterized by alteration in the hard, white, dense, inorganic substance covering the crowns of the teeth. These defects may include demarcated opacities (white spots), undersized teeth, yellowing, grooves and/or pitting on one or more permanent teeth.(1)

A study of 128 patients on a gluten-free diet revealed that changes in the permanent teeth may be the only sign of an otherwise symptomless celiac disease.(1) It should also be noted that calcium and vitamin D deficiencies are common in celiac disease. Deficiencies of these nutrients lead to cavities.

“Dentists mostly say it’s from fluoride, that the mother took tetracycline, or that there was an illness early on,” said Peter H.R. Green, M.D., director of the Celiac Disease Center at Columbia University. “Celiac disease isn’t on the radar screen of dentists in this country. Dentists should be made aware of these manifestations to help them identify

If you or someone you know has a child with a mental illness, behavioral problem or unexplained neurological issue, you must watch these videos. They vividly illustrate how gluten and celiac disease can cause neurological illnesses and how removing gluten and casein from the diet can improve or cure the child.

Eamon Murphy started exhibiting mental aberrations and problems eating at three months of age. By the time he was three, his parents were frantically trying to understand what had caused his developmental delay in walking and talking, and now his trances, seizure-like episodes and regression. After a determined effort by his mother and a series of extraordinarily lucky events, he was finally diagnosed with celiac disease…and FULLY RECOVERED.

Watch these videos NOW and then forward this message to everyone you know with a child with a similar mental illness and their healthcare providers…because it is unacceptable that any child should be unnecessarily consigned to a life of suffering and diminished potential when a simple change in diet may cure them.

Eamon is totally normal now. If he had not been diagnosed, it is easy to see how he could have become incapacitated within a few years as his body and mind became sicker and sicker. Eventually, he may have been labeled autistic or schizophrenic. He may just have been called odd and slow.

Was it a miracle that Eamon recovered? No. It was a miracle that Eamon was diagnosed...

Here are some facts:

Autism affects 1 in 150 children. Medical experts recommend behavioral management and specialized speech, physical and occupational therapies (costing an estimated $70,000 per year per child), medications, community support and parental training.

Medical experts recommend AGAINST dietary intervention, yet the gluten-free/casein-free diet that helped Eamon has been demonstrated in thousands of cases to improve or resolve symptoms.

Celiac disease is still considered a rare gastrointestinal disorder that affects children by the majority of health professionals. In reality, celiac disease affects 1 in 100 people of any age, classifying it an epidemic by NIH standards. More people have celiac disease than Type 1 diabetes, breast cancer or autism. Diagnosis of celiac disease is estimated to take up to 11 years from first presentation of symptoms. Only 5% of people with celiac disease are estimated to be diagnosed.

Gastrointestinal problems occur in about 20% of people with celiac disease whereas neurological problems have been seen in as high as 51% at time of diagnosis.

The treatment for celiac disease is removing gluten from the diet and correcting nutrient deficiencies and any complications that have developed.

Unless you have symptoms that doctors expect to see - chronic diarrhea, failure to thrive, abdominal bloating and pain, and anemia - your likelihood of being diagnosed is extremely low.

For a complete list of symptoms related to celiac disease including dozens of neurological issues and problems in childhood, visit Gluten Free Works.

An excellent resource that outlines over 300 signs and symptoms and explains the relationship between celiac disease and the nutrient deficiencies that cause them is the book Recognizing Celiac Disease, by Cleo Libonati, RN, BSN. Recognizing Celiac Disease was endorsed by Dr. Peter Green, the director of the Celiac Disease Center at Columbia University who diagnosed Eamon Murphy.

pcom-420091

April 22, 2009, Philadelphia College of Osteopathic Medicine. Cleo Libonati, RN, BSN presented "Celiac Disease Today" to a group of medical students at Philadelphia College of Osteopathic Medicine in Philadelphia, PA.

Libonati's presentation was attended by first, second and third year students who had many questions about celiac disease symptoms and how to identify at-risk patients.

"It was very encouraging to see such an intense level of interest in celiac disease," Libonati said afterward. "Specifically, these students wanted to know how they as doctors will see it, how they test for it and educational materials they could give to people with it."

Student antendees received a complimentary copy of Recognizing Celiac Disease. Special thanks to Daniel Van Riper, president of the Nutrition Group for the invitation to speak and coordinating the event.

“Recognizing Celiac Disease” is the acclaimed guide to recognizing, diagnosing and managing celiac disease. Recommended by medical experts and national celiac disease support organizations, it is used by healthcare providers and patients in 15 countries.

For more information on Recognizing Celiac Disease, visit www.recognizingceliacdisease.com

crayola_crayons_gluten_free

The question was raised regarding gluten-free crayons and what type are gluten-free. We contacted Crayola to determine the gluten-free status of their crayons and other products. See below. Please note that Crayola licenses their name to other manufacturers, bath products, cooking products, etc. Crayola only knows the gluten-free status of products they make. If the product is not made by them, the manufacturer should be contacted directly.

Question:

Hi Glutenfreeworks.

I am looking for a gluten-free crayons. I wonder whether you have one or if not could you give me some idea where can I get it from? Thank you and await your reply. -I.

Answer:

Crayola crayons are gluten-free. We just spoke with a safety representative at the company. Their crayons do not contain wheat, barley, rye or oats. They are also not made on a manufacturing line that uses any of these grains.

The only products Crayola manufactures that contain, or may contain, gluten are their Crayola Dough and modeling compounds. The Crayola Dough contains wheat. The modeling compounds are made on the same line after a thorough wash using a gluten-free cleaner.

The following information can be found on the Crayola website. Crayola -------------------------------------------- The exact ingredients of our products are proprietary, however, we are happy to provide you with the 7 most common ingredient requests NOT FOUND in products currently manufactured by Crayola--This does not include products manufactured under license. Please check packaging carefully to determine manufacturing company.

Peanuts Shellfish Fish Tree Nuts Eggs Milk Latex

(Latex gloves are one of the personal protection options requested by and available to our employees for the occasional handling of raw materials and finished goods during the product manufacturing process.)

***We are often asked if any of our products contain gluten (wheat flour). Gluten is contained only in Crayola Dough. Other Crayola modeling materials, including Model Magic modeling compound, Modeling Clay, Air-Dry Clay, and Model Magic Fusion are gluten free. All of these products, however, are produced on the same machinery. Although the machines are cleaned prior to the start of each production run, there is a slight possibility that trace amounts of gluten from Crayola Dough may be present in the other modeling compound products.***

For information regarding specific ingredients not listed, please call us at 1-800-272-9652 weekdays between 9 AM and 4 PM Eastern Time. -----------------

garret-children-tested-for-celiac-disease

This post answers the common question - When is the best time to introduce gluten to a child's diet when celiac disease runs in the family?

Question:

Hi John,

I was wondering if you have any information about when to introduce a baby to gluten if there is a gluten intolerance in the family. I work with babies with special needs and I am seeing a growing need for some accurate information on this. I am sure you are not surprised.

I know that some research seems to be indicating a good time to try a small amount of gluten is between 4-6 months. It seems that older research said older than 6 months. Do you have any knowledge on this subject? I am very curious but hate to share inaccurate information.

I have found some information on the internet, but wanted another opinion.

Thanks for any help you may be able to offer...... Alisa W. Celi-ACT Support Group

Alisa Weeks Early Interventionist Tennessee Early Intervention System

Answer:

Hi Alisa,

Regarding when to introduce children to gluten is a difficult question. There was a study that "showed" introduction at between 4 and 6 months had some benefit, but this study was poorly performed and subsequently shown to be in error.

Really, there is no proper time to introduce gluten to prevent the development of active celiac disease. Every person is different and even siblings can exhibit different symptoms. 1st degree relatives have about an 11% chance of having celiac disease, so there is an increased chance that the child will have it. (As an aside, my sister with celiac disease has two boys, 2 1/2 and 1. She won't let either touch it because she doesn't want to risk it.)

If the parents of an infant or young child with familial risk to celiac disease decide to risk exposure to gluten, Cleo Libonati advises not introducing gluten before the age of three.

Why three?

Children do not reliably produce antibodies before the age of three which means antibody testing could be inconclusive and misleading if symptoms arise. Suppose the child does not develop the classic presentation of diarrhea but instead atypical symptoms that mimic other disorders. The symptoms could be dismissed altogether and not considered as presentations of celiac disease.

Harm could then occur unnoticed such as development of defective tooth enamel in unerupted permanent teeth (in the gums) or neurological disorders such as epilepsy that would show up later, with or without poor growth and development. Brain development is rapid in the first year particularly so that mental, social and behavioral skills could be adversely affected.

If celiac disease testing is performed in a young child, the following should be carefully considered before determining whether a negative result is truly negative.

• Children under the age of 2 years do not produce tissue transglutaminase (tTG) antibodies, therefore the best time to begin measuring antibodies is after children reach age 2 to 3 years.

• In clinical practice tTG lacks the reported sensitivity. Specificity is reported between 95% and 99% in adults, falling to 73% in children at the recommended cut-off value of 20 IU.3 tTG is reported to be less reliable in early stage celiac disease without villous atrophy, the elderly, children under 3 years of age, smokers and advanced celiac disease.

• In screening relatives of patients with celiac disease, evidence showing discordance in testing suggests that both tTG and EMA should be used to avoid false negative results.

• EMA is reported less reliable in early stage celiac disease without villous atrophy, the elderly, children under 3 years of age, smokers and advanced celiac disease.

• EMA positivity with normal biopsy was found to be a very early predictor for later overt celiac disease, and necessitates further follow-up, especially if the child is AGA-positive and there is a family history of celiac disease.

• A substantial proportion of patients with true celiac disease are EMA negative.

• AGA testing had 100% sensitivity for diagnosis in children less than 18 years of age with iron deficiency anemia compared to EMA sensitivity of 81.8% in the same study.

In any case, the mother must watch the child for symptoms of nutrient deficiencies after the introduction of dietary gluten - whenever (if) she starts him or her. Children under the age of two seem to present with classic signs of failure to thrive, diarrhea, however, after that age atypical symptoms become predominant. Use Recognizing Celiac Disease to identify changes in behavior, growth, skin, hair, eyes, intelligence - anything at all - because that age period is a critical time in growth and development of the body and the mind.

Here are two videos about a child who presented with atypical symptoms at age 3 months, whose mother knew she had celiac disease but was told her children could not have it because it was so rare…and even if they did, she would recognize it because the kids would have the same symptoms she did: diarrhea, weight loss, and fatigue. Her son had neurological symptoms only, disturbing schizophrenic-like episodes and you will see it was a miracle that he was diagnosed at all. You may recognize his symptoms in other children you know who you never suspected of having celiac disease. These videos are a real eye-opener and exactly why people need Recognizing Celiac Disease – so they can determine whether symptoms are related to celiac disease and the causes when they are. It is very likely that many children are being affected just as this little boy was...it is far less likely that the events that led to his diagnosis will happen for them.

Part 1 - Celiac Disease Manifesting as a Mental Aberration in a Baby

Part 2 - Celiac Disease Manifesting as a Mental Aberration in a Baby

References:

Cleo J. Libonati. Recognizing Celiac Disease, Fort Washington, PA, USA: GFW Publishing, 2007. www.recognizingceliacdisease.com

Abrams JA, Diamond B, Rotterdam H, Green PH. Seronegative celiac disease: increased prevalence with lesser degrees of villous atrophy. Dig Dis Sci. Apr 2004;49(4):546-50.

Lurz E, Scheidegger U, Spalinger J, Schöni M, Schibli S. Clinical presentation of celiac disease and the diagnosic accuracy of serologic markers in children. Eur J Pediatr. Oct 2008. Epub.

Donaldson MR, Book LS, Leiferman KM, Zone JJ, Neuhausen SL. Strongly positive tissue transglutaminase antibodies are assodciated with Marsh 3 histopathology in adult and pediatric celiac disease. J Clin Gastroenterol. Mar 2008:42(3):256-60.

Donaldson MR, Firth SD, Wimpee H, et al. Correlation of duodenal histology with tissue transglutaminase and endomysial antibody levels in pediatric celiac diasese. Clin Gastroenterol Hepatol. May 2007;5(5):567-73.

Esteve M, Rosinach M, Fernández-Bañares F, et al. Spectrum of gluten-sensitive enteropathy in first degree relatives of patients with celiac disease: clinical relevance of lymphocytic enteritis. Gut. Dec 2006;55(12):1739-45.

Sanders DS, Hurlstone DP, McAlindon ME, et al. Antibody negative celiac disease presenting in elderly people – an easily missed diagnosis. BMJ. Apr 2005; 330(7494):775-776.

Utiyama SR, Nass FR, Kotze LM, Nisihara RM, Ambrosio AR, Messias-Reason IT. Serological screening of relatives of celiac disease patients: antiendomysium antibodies, anti-tissue transglutaminase antibodies or both? Arq Gastroenterol. Apr-Jun 2007;44(2):156-61.

Boger CP, Thomas PW, Nicholas DS, Surgenor SL, Snook JA. Determinants of endomysial antibody status in untreated celiac disease. Eur J Gastroenterol Hepatol. Oct 2007; 19(10):890-5.

Grodzinsky E, Fälth-Magnusson K, Högberg L, Jansson G, Laurin P, Stenhammar L. IgA endomysium antibodies – an early predictor for celiac disease in children without villous atrophy. Acta paediatr. Jul 2008;97(7):972-6.

Shah VH, Rotterdam H, Kotler DP, Fasano A, Green PH. All that scallops is not celiac disease. Gastrointest Endosc. Jun 2000;51(6):717-20.

trumppic

By Nancy Lapid, About.com Guide to Celiac Disease

Celiac disease has been a topic on not one but two TV shows in the past few days. I hardly watch television, so I'm fortunate to have learned about these episodes from a fellow blogger, the Gluten-Free Optimist. First, the cable network BBC America’s reality show Last Restaurant Standing had an episode (#13) in which competing restauranteurs were required to come up with food for celiac guests (and other “tricky customers”) without advance warning. This episode will be replayed; the schedule is posted on the BBC America site.

starbucks-gluten-free-cake

(UPDATE: Starbucks no longer carries the Valencia Orange Cake.)

Starbucks Corp. will begin selling its first gluten-free pastry in its U.S. stores next month in response to requests from its customers.

The pastry, called Valencia Orange Cake, will be made with seven ingredients which are all 100 percent gluten-free, the company said. The cake will be sold in individually wrapped packages for $2.25 each and will be available beginning May 5.

Starbucks said it wanted to offer its gluten-free customers more choices.

"I think one of the things we learned right from the get-go from our gluten-free customers is they can't eat away from home very easily," said Adrienne Knapp, a product manager in the food category at Starbucks. "A cake is actually really hard to find for someone that's a gluten-free consumer."

Gluten is a protein common in rye, wheat, barley and other grains. More than 3 million Americans are thought to suffer from a condition called celiac disease, which is associated with intolerance to gluten. Even more people claim they are sensitive to wheat and other gluten-filled grains.

Starbucks said it has received numerous requests from its customers for gluten-free foods on its mystarbucksidea.com Web site. The site allows customers to submit ideas for how to improve the company, its drinks and its food.

Source: http://www.forbes.com/feeds/ap/2009/04/17/ap6305750.html

cow

The following questions concern whether villous atrophy can be caused by milk and whether anemia can result from milk ingestion. The answer is yes: bovine beta casein enteropathy can cause both. See full explanation below.

Question:Does anyone know can a deficiency in lactase enzyme cause the villi to be blunted? My 3 year old son just had an endoscopy and it showed the villi are blunted.

My son has a lactase deficiency and has been gluten free for 18 months. We took him off lactose for the first 6 months after being diagnosed but then added it back and he seemed fine for 6 months.

So I am hoping maybe the fact that he was drinking a lot of milk caused the villi to be blunted and not ingesting any gluten?

Also, can that cause anemia?

My son is also slightly anemic. But we are very strict with his diet and I am pretty sure he is not getting any gluten ( i know its possible but I don't think so... his diet hasn't changed..)

Celiac antibody blood tests indicate he is not getting gluten?

So i am wondering if the lactose could be causing the villi to be blunted and the anemia???

Thanks, S

Answer: Dear S,

The most common cause of villous atrophy in people with celiac disease is unintentional gluten ingestion. This answer assumes no gluten is being ingested.

Cow dairy can cause an enteropathy similar to celiac disease. It is called Bovine Beta Casein Enteropathy. It acts like celiac disease, causing inflammation leading to villous blunting. The milk protein elicits the antibody reaction just like gluten does in celiac disease.

The resulting villous blunting would explain lactose intolerance, as the lactase enzymes needed to digest lactose are produced and release near the tips of the villi. If the villi are blunted, no lactase is being produced and milke digestion does not occur.

Bovine beta casein enteropathy is marked by diarrhea, failure to thrive, vomiting, atopic eczema and recurrent respiratory infections. It causes malabsorption of nutrients, just like celiac disease, so it can lead to nutrient deficiencies including anemia. 12% of those with bovine beta casein enteropathy are found to have celiac disease.

-John Libonati

Source: Recognizing Celiac Disease. p. 147 www.recognizingceliacdisease.com

recognizing_celiac_disease_website_cover_132x162