Your baby is almost here! Or you already have a child and you are on the hunt for a pediatrician. Easy right?
If you are a celiac you need to do some homework (don’t worry I have done it for you!)and then use the latest facts as a sounding board to discuss your needs with a potential pediatrician.
The last thing you need as a celiac mother is a pediatrician who has false beliefs about celiac disease. You also don’t need one who is not up to date on the latest and greatest research about breast feeding and the preventative timing of the introduction of gluten.
Your goal? Select a doctor that can guide you through the maze of data and approaches to celiac disease identification, treatment and prevention. Yes, I did say prevention. There are some ways that researchers now believe celiac disease can be prevented. Read on!
When interviewing a new pediatrician, what should you be looking for? Here is how I broke it down.
1. General Knowledge of Celiac Disease.
Do not assume a pediatrician knows much, if anything, about celiac disease. Many doctors hold outdated and further false beliefs that will effect your ability to care for your child using the latest information available.
Many physicians were taught in school that celiac disease is a childhood disease that disappears in adulthood. Is this who you want to care for your at risk child? Yes, your child is at risk. You need specific genes to develop celiac disease. If someone in your family has it YOU have a 10% chance of also having it.
The average time to diagnosis of celiac disease is NINE years. This is likely not a surprise to you if you are a celiac, I am sure you have your own decade long struggle to share. But, you should be aiming for “better” when it comes to your child. Hell, I am shooting for WAY BETTER for my child.
Many physicians hold the belief that the only thing to look for in celiac children is failure to thrive. This is their black and white approach to whether or not they should test a patient. Why not proactively do a blood test when the child is old enough (studies show that children need to be at least 2 years of age before most tests available now are accurate)?
Let me say this another way: A delay in diagnosis in childhood results in more autoimmune diseases in adults including osteoporosis, anemia, malignancies, peripheral neurophathies, dental enamel defects, hyposplenism, and infertility. It doesn’t stop there. Patients with autoimmune diseases often have other autoimmune diseases including Sjögren’s disease, type 1 diabetes, autoimmune thyroid disease, dermatitis herpetiformis, and alopecia areata.
2. Specific Knowledge of Celiac Disease Prevention in Children.
Ask your pediatrician what they know about the link between breast feeding and the timing of the introduction of wheat. If they stare at you blankly you may be in trouble. Its known that celiac disease runs in families. Its not known what makes the gene “turn on.” We know that some children never have a problem but suffer as adults after a trama of some kind (emotional or physical). The only path we have now is following prevention measures that we have scientific evidence on.
Studies have shown that breast-feeding influences the development and presentation of celiac disease. It has a protective effect (as far as is known thus far) and is believed to play a part in the onset of celiac disease. Fewer breast fed children develop celiac disease and when they do it is at a later age.
Delaying the introduction of gluten until 4 months of age, while still breast feeding, may be beneficial or protective to genetically predisposed children. By doing this one thing — introducing gluten at the right time — your child may end up living a gluten filled life without problems. Studies have shown that children who were not introduced to wheat until 1 year of age ended up with higher incidences of celiac disease. From what is known right now there seems to be a window between 4 months to 6 months that is the “right time.” Not to early, not to late.
3. Ability to Combat Old Wives’ Tales
Pediatricians and mothers may fear that breast milk transmits the disease to children. This is logical, but false. The logic is that a celiac mother will have antibodies to gluten that are not needed (non-celiacs will not have anti-gluten anti-bodies). Anti-bodies are transfered in breast milk, but this has not been shown to have any effect on celiac diagnosis. The opposite has been found to be the case. A pediatrician who supports breast feeding and can encourage a mother to keep going through the introduction of gluten will be extremely helpful and may even eliminate the threat of a celiac diagnosis.
Fattening up children who have trouble sleeping through the night with cereals containing gluten(added to bottles) is a no-no. This old wives’ practice should be avoided at all costs!! Introducing gluten too early has been shown to increase the incidence of the disease.
What did I do?
I selected my pediatrician, but it was a process. I interviewed several people. In the end, the one I selected knew quite a bit about celiac disease – but I don’t expect her to know as much as I do about the latest and greatest research. If she does – fantastic! But I will continue to follow what is unfolding to make the right choices for my child. What I was seeking was a balance between what she knew and what she was open to hearing. I told her everything I knew and asked for her support in balance with her own experience. I looked for a younger doctor who did not hold false beliefs (or a ton of bravado about what their past experience had shown). And I also looked for a small practice where I could have a more intimate experience with the nurses. The practice I chose has one doctor and one nurse – a rarity in New York City.
I want to be the best mom I can to my child. Its my responsibility to make sure I do everything I can to prevent her from having celiac disease.
The FACTS in this article are from the Columbia University Celiac Center published in their book the Celiac Disease: A Hidden Epidemic.