Archive for April 29th, 2009

 


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.