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

 

cataract1 ------------------

The post below is a response to a young woman with cataracts and celiac disease. Cataracts are directly related to nutrient deficiencies of Vitamin A, calcium and possibly vitamin B2 in celiac disease. (Editor's note.)

Hello,

I am 20 years old, have celiac disease and cataracts. The optometrist told me it is because I have fair skin and light eyes and have had too much sun exposure. I grew up in Mobile, AL and spent everyday I could at the beach so this could be true. It is very interesting that you brought up this topic though. It never crossed my mind that these two could have anything to do with each other.

-L

Hi L,

Many eye problems are found in celiac disease. Cataracts are directly related to nutrient deficiencies. "Cataract formation, a feature of vitamin A deficiency and long standing hypocalcemia, is characterized by clouding of the lens of the eye. In celiac disease, it results from malabsorption of vitamin A and calcium. Vitamin B2 may be involved. GFD (gluten-free diet) is preventive and limits further changes." (Recognizing Celiac Disease, p. 213) That said, we know that malnutrition can persist on a GFD due to unintentional gluten ingestion, poor diet, etc. Ask your physician to take levels of vitamin A, B2 and calcium to make sure you are absorbing adequate amounts.

-John

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

rice_chex

General Mills Announcement 3/31/09

"Thank you for contacting General Mills regarding gluten in Corn Chex cereal. General Mills is reformulating the following Big G Cereals to gluten free status:

· Corn Chex · Honey Nut Chex · Strawberry Chex · Chocolate Chex · Cinnamon Chex

As was the case with Gluten Free Rice Chex, the barley malt ingredient was removed and replaced with another ingredient. Production has begun, so you may start seeing the gluten free formulas on store shelves now. All 5 products should be widely available across the U.S. by June 1, 2009. As with all reformulated products, both products may be on store shelves at the same time so please read labels/packaging carefully, examining the product packaging to ensure that the cereal inside the box is in fact the new, gluten free product. Look for "NOW GLUTEN FREE" or "GLUTEN FREE" on the front/side/back panels.

In addition, the following Betty Crocker Gluten Free mixes will be available at approximately the same time:

Betty Crocker Gluten Free Brownie Mix Betty Crocker Gluten Free Chocolate Chip Cookie Mix Betty Crocker Gluten Free Devils Food Cake Mix Betty Crocker Gluten Free Yellow Cake Mix

It is our goal to help our consumers determine whether or not they can include our products in their diet when they are not labeled Gluten Free. To accurately accomplish this, we believe it is best to refer to the specific ingredients listed on each product package; and for this reason, we do not offer a gluten-free product list.

However, we do understand that ingredients can be confusing. We want you to be assured that if the ingredient label does not list wheat, barley, rye, oats or gluten containing ingredients sourced from these grains, then the product would be gluten-free. Sources of gluten are listed on the label even if the source of gluten is part of another ingredient (such as flavoring or spice). Because ingredients may vary from one package to another due to product reformulation, you should use the products ingredient label to provide you with current and accurate information."

Amy Peters, Consumer Services

John Libonati

Del Monte gluten free 10-minute garden potato salad

April 6th, 2009 by John Libonati

  

del_monte_logo 

This potato salad recipe is a breeze to make, does not require cooking and tastes fantastic. You can find the recipe on the back of the 29 oz Del Monte Whole New Potatoes can or Del Monte's website. Enjoy!

John Libonati

Sams Club Raw Whole Chickens Are Gluten Free

April 6th, 2009 by John Libonati

sams_club_logo Sams Club raw whole chickens are gluten free. (Post below can be found at the gluten free weight watchers blog.)

I double checked the status of the raw whole chickens I buy. When I read the label yesterday it said the ingredients contain "chicken broth". I know a lot of broths have gluten so I shot an e-mail to Pilgrim's pride. Their website did have a listing of items that are gluten free but I did not see whole chickens.

It looks like they are GF (see below).

Kim

_____

From: Dreika Linwood [mailto:Dreika.Linwood@ pilgrimspride. com] Sent: Friday, April 03, 2009 1:17 PM Subject: RE: Other - Response Requested

Thank you for your email. Yes, our whole chickens are gluten free.

Dreika Linwood

Pilgrim's Pride Corporation

Consumer Relations Rep ll

903-434-7532 Direct

800-321-1470

PA Legislature proclaims April ‘Celiac Disease Awareness Month.’

Ambler, PA, April 03, 2009 --(PR.com)-- Legislation passed by the Pennsylvania House of Representatives General Assembly recognizes April 2009 as the state’s official ‘Celiac Disease Awareness Month’. With the passing of House Resolution 153 (HR 153), Pennsylvania takes the lead in raising awareness for celiac disease as the most common and most undiagnosed autoimmune disorder in the United States.

HR 153 was ratified unanimously, 196-0, on March 31st, 2009 with the assistance of its prime sponsor, state representative Craig A. Dally (R).

Geoffrey M. Roche, advocacy chairman for the National Foundation for Celiac Awareness (NFCA) and resident of Bethlehem, PA, collaborated extensively with representative Dally on the creation and development of HR153, and lobbied for its passage in the State House of Representatives.

"I would like to thank my State Representative, Craig Dally, and the entire State House for recognizing the impact this disease has on many Pennsylvanians and for assisting the National Foundation for Celiac Awareness in creating awareness that will ensure individuals with celiac get diagnosed, and correctly manage the disease." says Roche. “I understand first hand the impact this disease has on one's life and the need for education and awareness across our entire nation.”

The entire resolution in its entirety can be read on the National Foundation for Celiac Awareness website, www.celiaccentral.org.

Roche’s role in the successful sanctioning of HR153 and his passionate efforts on behalf of NFCA, stem from his personal experience with celiac disease, having been diagnosed with the autoimmune disorder just 11 months ago.

NFCA founder and president Alice Bast describes HR153 as, "‘The first step in reforming the US health care system in relation to autoimmune diseases, preventive care and chronic disease management.”

NFCA and Roche aim to pass similar resolutions in every state nationwide, providing assistance and resources for citizens working on legislative efforts for the purpose of spreading awareness of celiac disease, a disease which current estimates suggest affect 1 in every 133 Americans. Only 120,000 of individuals with the autoimmune digestive disorder, roughly 1 in every 4700, have been diagnosed.

“Early assessment of celiac is crucial in preventing the onset of complications such as other autoimmune disorders, serious illnesses, and some cancers for individuals with this disease.” says Bast.

Those interested in enacting legislation in their states should contact the NFCA at info@celiaccentral.org, by phone (215) 325-1306 ext.101, or visit the ‘Get Involved’ section on the NFCA website, www.celiaccentral.org for information.

Celiac disease is an autoimmune digestive disease that damages the small intestine and interferes with absorption of nutrients from food. It is triggered by consumption of the protein called gluten, which is found in wheat, barley and rye. Left untreated, people with celiac disease can develop further complications such as other autoimmune diseases, osteoporosis, thyroid disease, and some cancers. An estimated three million Americans have celiac disease, but only about 1 in every 4700 with the disease receives an accurate diagnosis. Currently, the only treatment is a lifelong gluten-free diet.

###

NFCA is a 501(c)(3) non-profit organization dedicated to raising awareness and funding for celiac disease that will advance research, education and screening amongst medical professionals, children and adults. Visit www.celiaccentral.org or call 215-325-1306 for further information.

Contact Information National Foundation for Celiac Awareness Whitney Ehret 215-325-1306 whitney@celiaccentral.org www.celiaccentral.org

recognizing_celiac_disease_cover_lg1 The University of Chicago Celiac Disease Center has chosen Recognizing Celiac Disease as the supplemental reading material for medical professionals who complete its Preceptorship Program.

Dr. Stefano Guandalini, medical director of the center, recommends the book for both patients and healthcare providers. “The book is useful for prospective patients to determine whether their complaints are consistent with celiac disease. It is also an excellent patient resource for self management, especially in identifying ongoing and future health problems related to celiac disease and bringing them to the attention of their physician for proper treatment. “Recognizing Celiac Disease” is a useful reference that will serve as a helpful tool for health care providers and anyone diagnosed with the disease.”

The University of Chicago Celiac Disease Center's Preceptorship Program is an on-site intensive 2-day training course for medical professionals. Candidates study under the direction of the Center's celiac disease experts. The course includes formal instruction, as well as hands-on training. This is the nation's only such program. More information about the University of Chicago Celiac Disease Center and the Preceptorship Program can be found at www.celiacdisease.net.

“Recognizing Celiac Disease” is the definitive guide to understanding, diagnosing and managing celiac disease. It is a reader-friendly, celiac disease reference manual written for both medical professionals and the general public.

For more information visit, www.recognizingceliacdisease.com.