Go and make a gene screening to your baby – Gluten-free mama

Making the decision to have a child – it’s momentous.

It is to decide forever to have your heart go walking outside your body.”

Elizabeth Stone

Being a parent is the most precious gift one can get in a lifetime. All the beauty of the world woven in a human being you created. This is a new beginning and at the same moment an end of everything you knew, all your dreams and patience and all your thoughts from the moment when it started inside of you.

Considering I’m a celiac I had to take additional checkups during my pregnancy as well as after the childbirth. Today, medicine itself is at a much higher level than it was when my mum was in the same position with me and my sister. With her, everything was new. It took much longer and was much more traumatic. Back then they didn’t know so much about Celiac Disease, they didn’t have available information nor gluten-free products in stores. There was also no legalization nor help from the government… everything that we have now. Of course, we could have more but everything depends on all of us and our persistence to give more to our children than our parents gave to us.

After finding I’m pregnant and initial euphoria I had to plan the upcoming 9 months. Regular monthly visits with a doctor, regular blood tests, a carefully picked menu which will keep my results well during the whole pregnancy (with Celiac patients, low hemoglobin can be a problem), physical activities and constant thinking about whether my baby will inherit Celiac gene.

»Early diagnosis of Celiac Disease is necessary to ensure a long and healthy life«

Screening is the beginning and the end of Celiac diagnostic process. My husband and I decided to start with it when our baby was 8 months old. Considering that blood sample for this test is taken from the vein it is not very pleasant for babies young as this. Even though I strongly suggest to do it sooner than later because you will instantly know for sure where you stand. Blood extraction is fast and your baby will forget it happened in no time. Your baby will be hungry afterward so I suggest you equip yourself with a rich porridge and freshly squeezed juice (a bit of fresh beet, apple, and carrot or any other fruit your baby loves).

If my mum would know this 30 years ago she could avoid long wanderings in diagnosing and with it endangering a general health of her children. Namely, my sister and I, as well as our father have DQ2 gene. Our genetics was made on our own initiative in 2013 (when I was 25 years old) because no doctor here said we had to do it. My diagnosis was made on the basis of biopsy. Self-initiated, we started our research and found that Celiac Disease in our family is inherited. Everything that I mentioned and much more was a long self-thought lecture which today when I’m a mother, will use to do necessary tests on time (before introducing gluten food to my baby) and in this way, I sort things as they should be sorted from the beginning (as much as possible).

»Children have a 1 in 10 chance of developing the coeliac disease if a first-degree relative is diagnosed. Unfortunately, an estimated 80% of children remain undiagnosed.«

ESPGHAN

(The European Society for Paediatric Gastroenterology Hepatology and Nutrition)

This is an alarming data which says enough about how important first-degree relative screening really is. Unfortunately, in many Europe countries, it still hasn’t been added to obligatory health test and because of this many who are sick stay seriously endangered. Looking from a positive aspect, the prevalence in pediatrics is on the rise which will lower the number of children with serious health problems caused by untreated Celiac Disease. Despite easy diagnostic and treatment, the general population is late with setting the diagnosis up to 8 years! All this information come from ESPGHAN research.

If you are a young mother with Celiac Disease it is absolutely necessary to do the screening to your baby. Every country has a different step-by-step process of how to do it. In our country, you first need to seek a referral from the baby’s pediatrician which you need to verify with Social Security company and it lasts for 6 months. Then, you need to book blood extraction with Institute for Transfusion. In the past, this analysis was not paid by social security and they were extremely expensive. I’m not completely sure from when but in 2013 when I did my screening the cost was covered. There is also a possibility to do the analysis in a private clinic but you will have to pay for it (the cost in Serbia is around 60 Euros). You need to ask for HLA typification known also as tissue typification. This is genetic testing where certain HLA proteins are searched for (human leukocyte antigens). This is about specific marks, inherited from our parents, which help our body to identify and fight from foreign bodies.

After the consultation with a doctor, my baby diet was gluten free made from cereals which don’t contain gluten (rice, corn, gluten-free oats, buckwheat, millet), fruits, vegetables, and meat.

The genetic results will guide you further. If your baby doesn’t have mentioned gene than she certainly doesn’t have Celiac Disease. If your baby does have the gene it still doesn’t mean she inherited the disease. In this case, your baby is only the gene carrier. All this information can be found in a blood test. If your baby has the gene, you will slowly introduce gluten food to her and after a certain period, set by baby’s pediatrician, you will check her antibodies IgA and IgG tzv tissue transglutaminase. Antibodies on tissue transglutaminase are an important factor in estimating autoimmune aspect of Celiac Disease.

My son inherited Celiac gene from me. Specifically, he has DQ2.5 gene where I have DQ2. I will keep you posted how our further research goes. Until then, follow my gluten free blog for babies and enjoy time with them!

 

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