CELIAC DISEASE AND BABIES AND YOUNG CHILDREN

[Yvonne (Vonnie) Mostat, RN]

NEW INFANT GUIDELINES

{FEEDING INFANTS AT RISK FOR CELIAC DISEASE)

 

According IMPACT Magazine, which I subscribe to, there is a new “Feeding Infants at risk for Celiac Disease”.  We know that one in ten infants, of parents who have celiac disease show signs of having the disease before they are even one year old. That statistic is listed with siblings, close relatives, such as aunts and uncles and grandparents. Impact Magazine states, “Knowledge does change and evolve. In this case through a number of prospective studies, we discovered that our old assumptions about infant feeding were largely inaccurate and in that new feeding recommendations are needed.

 

“The new recommendations based on data that has emerged over the past four years are simple and straightforward. They pertain strictly to families who ae at risk for celiac disease, however one of the following two conditions exist:-

…One first degree family member (a person or sibling) has celiac disease

…The newborn baby has been tested for genetic predisposition to celiac and is positive for  DQ 2.5 or DQ 8”.  {Self: I wonder if this can be done at the same time as they take other samples in the heel of the baby post delivery?}

WHAT WE KNOW FROM THE RECENT STUDIES IS THE FOLLOWING:”‘QUESTION:  Can an unborn baby get “celiac disease from its mother?

ANSWER: Celiac disease occurs in patients who are genetically susceptible. This means that if you have celiac disease I it is possible that you could pass your genes along to your children.  However, the risk of celiac disease in a first degree relative (parents, offspring, and siblings)  of patients with celiac disease is not 100%. The risk is actually estimated to be between 5 and 10%.

“It is important to understand that even if you pass the genes responsible for celiac disease along to your children, the disease may not occur, To develop the disease along to your children, the disease

… Gluten in large amounts in the first two years of life favors the onset of celiac disease, (again only in the patient population described above.)  Thus “gluten-containing foods should be given beginning at the usual age of 4 – 6 months but during the first two years should be less than 5 grams per day on the average. (i.e. less than about one ounce of pasta or 1 slice of bread).”

Remember how they advised us to start with rice Pablum when introducing cereals?

“The best preventative strategy reduces the incidence of celiac disease in this vulnerable population is healthy eating in accordance to the Mediterranean| Diet, again during the first two years of life, such a diet in particular should be based on high consumption of vegetables and grains and low consumption of Refined cereals and sweet beverages.”

(SELF:  There goes the old ‘Billie’s crusts”, or ‘FARLEYS  RUSKS, used in Great Britain and produced in Italy, and now a production outlet in California. WIDELY GIVENTO BABIES DURING THE FIRST THREE MONTHS OF LIFE In Great Britain. You are urged to either use as a chew rusk or mix with baby formula to make a cereal. They contain both wheat and wheat starch and early grain foods given to bottle fed babies, where mothers used to add oats and other cereals to the bottle fed baby to ‘fill them up so that they sleep through the night’, and what about Farley’s Rusks a centuries old prescription for young babies, which were widely given to any baby that could sit in a high chair – as in Great Britain. I know babies cry, especially during the night, but COULD babies be crying from an immature digestive system, or because of a stomach ache from gluten ingestion.  Good to think about when you are ‘at your wits end’ with a crying baby that is doubling up its stomach, kicking, and having foul smelling stools.  

 

“Although breast feeding does not provide protective benefit to those at risk of celiac disease, it is still small:- 1/8 of daughters and 1/13 of sons of celiac parents will develop celiac disease in the course of their lives.  However, the steps outlined here can make it smaller. ”THE MEDITERRANEAN DIET according

to the National Institutes of Health” consists of fish, monounsaturated fats from olive oil, fruits, vegetables, whole grains, legumes/nuts and moderate alcohol consumption. Generally, the emphasis is on unprocessed foods and less animal protein. *In other words, it does not include goldfish crackers or chicken nuggets. This diet can certainly be challenging for a family that is pressed for time and resources, but a little research and effort, it can be implemented and will soon become second nature. Whole grains can be easily substituted for processed grains (think whole grain bread instead of white bread, brown rice and whole grain pasta in place of white rice and semolina pasta.  ME ASIDE:  DO not even consider Minute Rice!) Beans and rice are easy to prepare for a 2 year old baby, and they can eat

more fruit and vegetables.  For information on how to entice your kids to eat the Mediterranean way you can search on the Web for ‘National Institute of Health, The Mediterranean Diet’. As with any foods introduced to a baby of six months, pureed green beans, and even  pureed beets are, at first, going to be spit out. Persevere.  I wish now that I had stuck with the early rice Pablum longer instead of venturing into the other Pablums too soon.  If you hear from your family physician the notes indicating: “Failure to thrive”, “Small for age”, “Looks anemic, “Chronic Diarrhea,  and that scary Growth Chart where your family physician indicates a table showing that your baby is small for its age, in height and weight”. I now know that these are key indicators of a child who is either not ingesting enough food or is possibly another celiac in the making. When I first nursed, I was the nurse in a clinic that measured, weighed, immunized and charted the babies. I saw the faces of the parents who heard this and they were devastated.  Nothing was said about the parents only being slight themselves, (5’2” – mothers and 5”8” fathers”.  After additional training I entered the Obstetrics and Gynecology nursing field.  I noted that the Pediatrician always measured the size of the woman’s feet in order to determine if he felt she was able to deliver normally and not by cesarean section. To say that a baby is only at the 60% growth percentile causes concern for the new parent.

Beyond Celiac  believes that “a person must be exposed to gluten for at least six months to one year before the disease occurs. We recommend that first degree relatives or patients with celiac disease be

tested for celiac disease  with a blood test after age 3 , once there has been adequate exposure to gluten. BEYOND CELIAC :  https://www.beyond celiac .org./celiac-disease/facts and figures.

CENTER FOR CELIAC DISEASE AT THE CHILDREN’S HOSPITAL OF PHILADELPHIA “The risk of celiac disease

In a first degree relative (parents of offspring, and siblings is not 100% . The risk is actually estimated to be between 5 and 10%. With regards to the global prevalence of celiac disease was 0.4% in South America, 0.5% in Africa, North America,0.6 %, in Asia, and 0.8% in Europe and Oceania.

The Celiac Organization states: “About celiac disease/celiac disease In children: “First degree relatives (parent, sibling, child) have a 1 in 10 chance of developing celiac disease themselves. There is a wide variation in the severity of symptoms – many children will experience symptoms as early as 6 months of age. The rate is higher in women than men.  The Celiac Organization advises you to “Check with your healthcare provider if you think your baby may have celiac disease. The symptoms, as listed above, distended stomach, diarrhea/ and or constipation at times, pulling up of the legs, abdominal bloating, gas.”

Answers from a Pediatric Gastroenterologist: “To develop the disease a person must be exposed to gluten for at least 6 months to 1 year before the disease occurs. A person must have both the genetic susceptibility plus an abnormal immune system response to gluten. The development of celiac disease requires direct exposure to gluten, it does not begin before the baby is born or in early infancy.”

Some statements may be confusing to you, as they are to me, because a retrospective study by the “MAYO CLINIC found that 44% of screened first degree relatives had celiac disease.”

 

MYTH BUSTERS: -GLUTEN FREE ADDITION: by Alice Bast :

“If it says manufactured in a facility that also processes wheat, It is not safe for people with celiac disease”.  The above is an advisory statement of what the FDA calls a voluntary allergen advisory statement. It is different from a “contains wheat” statement, which is required by law and means that the food definitely includes wheat. A voluntary warning, on the other hand means that the product is not made with those allergens, but there may be a risk of cross contamination in the manufacturing process. The statement can seem alarming, but in some cases, It may mean that the company is going above and beyond to let customers know about their processes. IF you find a company that is labeled gluten free but bears a warning like this one you can rest assured that the product must comply with the gluten free labeling law.

If you are considered a ”brittle celiac” in the absence of an advisory statement it does not automatically mean a product is produced in a dedicated gluten free facility. A gluten free food still can have 20ppm of gluten. You can through the saliva test and stool test in babies but beware, they have not been validated.  Check out the dedicated web section from BEYOND CELIAC on gluten sensitivity to learn more including interviews with leading celiac experts.

 

A question I have is:   What about the food items we import from China, Japan,  Mexico, Brazil and other Countries? Are we requiring them to follow our “gluten free” guidelines on their boxes or packages? Something for you to BLOG about, I have found differently.

 

Respectfully submitted,

 

Yvonne (Vonnie) Mostat, R.N.

Celiac. com

 

 

{Further ASIDE:  Don’t be over-concerned if you see the physician’s notes indicating   FLK because a lot of physicians use that indicator to express that the baby is a Funny Looking Kid.  I hope since I retired that is totally removed from their vocabulary!

 

“Six Studies that discuss research on infant feeding for babies at risk for celiac disease:

1.        Dietary Patterns After the weaning and Lactation period are associated with celiac disease Autoimmunity in Children, in Gasteroenterology – June 15, 2018- 2019, e 7. Doc Epub2018 Mar 2

2.       Does infant feeding modulate the manifestation of celiac disease and type 1 diabetes    

               In Curr Opin Clin Nutr Metab Care 2017 May,20(3):222-226.dol:10.1097/MC.000000000387

3.        Randomized feeding intervention in infants at high risk for celiac disease:

 In N Engl J Med, 2014 Oct2.3771(C14):1304-15:dol: 10.10.1056/NEJMoa1404172

OTHER STUDIES  INCLUDE…SYSTEMIC REVIEW WITH META-ANALYSIS: EARLY NFANT FEDING AND CELIAC DISEASE

…INTRODUCTION OF GLUTEN, HLA STATUS, AND THE RISK OF CELIAC DISEASE IN CHILDREN          

…infant feeding and risk of developing celiac disease a systematic review.   

The American Journal of Gastroenterology, {As noted in Celiac.com} was population based, and they stated “some 113,000 children  were initially enrolled, 67,608 were included in the study, 748 (1.1% of who were diagnosed with celiac disease. The researchers found that the risk of celiac disease increased by 3% with each gram of extra gluten Intake per day with gluten introduced  to gluten at 6 months of age or older having a significantly higher risk of celiac disease than thoseiintroduced at 4 – 6 months.

While the results of these three studies that one extra slice of bread, about 2 grams of gluten per day SEEMS TO BE LINKED TO A 20 – 50%.”

The Celiac Disease foundation – https://celiac-disease /celiac disease in children indicates “Celiac disease may develop any time after wheat or other gluten containing foods are introduced into the diet, typically after 6 – 9 months of age. It is unknown why some children become ill early.

                                                                                                                    

 

[Scott Adams]

Wow, thank you for the info. A recent Mayo clinic study showed that up to 44% of 1st degree relatives may also have celiac disease, so your 5-10% may need to be updated: