I read so many studies about Celiac Disease, the right approach, what I could actually do to possibly affect my daughter’s genetic plight when I was planning her arrival.

It was daunting.

And in some ways depressing. It felt like this is the best thing we know right now. Period. And that thing they know — essentially breast feed and introduce wheat at 4 months – feels very wobbly. Like your eggs are in one basket of today’s thinking about this problem.

The author of this piece dives in deep and fills in the gaps that felt so important when I was on the road to becoming a celiac mother – its a must read.

The most important tidbits:

“American Academy of Pediatrics now recommends that infants start consuming gluten while still breast-feeding.

“Not all breast milk is the same. It varies according to diet and other factors. One study found that milk from overweight mothers had fewer of those bifidobacteria than milk from thinner mothers. Another observed that breast milk from farming mothers, who inhabit a microbially enriched environment, carried more anti-inflammatory proteins compared with urban mothers’ milk.”

Use Facebook to Comment on this Post

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 Many doctors hold outdated and further false beliefs that will effect your ability to care for your child using the latest information available.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.

 Photo Credit: QQ Li via Compfight

Use Facebook to Comment on this Post

Prenatal vitamins are a pregnancy reality – even before you get pregnant you should begin taking pre-natal vitamins because the baby’s brain begins its most critical formations in the first few weeks of pregnancy. BUT, if you are a celiac this is even more important. Most folic acid in the American diet comes from fortified foods such as gluten filled cereals and pastas. Its a mistake to think that you can get enough of the more critical things a baby needs without supplements. Read more about this here.

I have been using two supplements that I adore and highly recommend! Both are made by NutraMetrix. One is their Calcium Complete and the other is their Prenatal Activated Multivitamin.

The plus about these? They are crystalized requiring you to make a small drink with them each day. This increases absorption something every celiac needs!! They are isotonic which is a fancy way of saying that if you drink them on an empty stomach they are designed to be absorbed / flow into your body more quickly. Celiacs have enough issues with absorption with our weak guts making this approach a win/win.

I made the decision to split my dose of these vitamins into 2x a day which eliminated the stomach irritation I had initially to the iron in the Pre-natal vitamin. Most women complain about the iron in pre-natal supplements, but I recommend trying to take one with iron. Without it you will be wiped out as your body stands up the baby’s blood supply which happens at the start of pregnancy but continues as your baby grows.

The critical vitamins that you need are well provided for in the suggested dose (using stats from both bottles):

Calcium: 750 mg / 75%

Folic Acid: 800mg / 100%

Iron: 20mg / 111%

Vitamin D: 1,000 IU / 250%

I will continue taking these after the pregnancy as well to keep me stable as I produce breast milk and my body gets adjusted to not having a placenta to help out. Its a good idea to keep providing your body with suplemental support as it adjusts to life after the baby and changing hormones!

I am not a reseller or affiliate for these – this is a personal recommendation! I buy mine from my acupuncturist.

Use Facebook to Comment on this Post

Celiac Central recently issued a fact sheet on how Celiac Disease can effect infertility AND it also includes areas that pregnant celiacs should take into account when working with their doctor!! You can download the form here.

The four vitamins mentioned on this sheet- Iron, Folic acid, Calcium and Vitamin D - are important for every pregnant woman, but Celiacs have a tougher time getting what they need because many of us have challenges with absorption through our damaged gut. In addition, there is a lack sophistication in gluten free foods in that many are not fortified with vitamins. Most Americans get a good portion of their vitamins in their foods such as bread, crackers, pasta etc.

IRON: As I have written about before, its very difficult for a Celiac to get enough Iron without supplementing their diet with a fortified cereal and / or pills. If you don’t take care of getting enough while you are pregnant, this will be one of the reasons you are exhausted during your pregnancy, especially in the first trimester as your body starts making a lot of extra blood for the baby and your own system to support it.

Most pregnant women (and frankly most people!!) distain taking iron pills because they make you constipated. Eating fortified cereal is a great alternative. Check out my post on Rice Chex and the trick to iron absorption – hint you have to eat something with vitamin C while eating something with iron or its moot.

FOLIC ACID: This is critical for every pregnancy! And to be more specific its most important at the very, very start. The baby uses folic acid as its brain forms in the first few weeks. It prevents spinal bifida. This means women who are trying to conceive should already be taking folic acid. Folic Acid is also important for developing the baby’s DNA and extra blood your body makes to support the additional load on your circulatory system.

Celiacs again are at a disadvantage here because many foods that are fortified with Folic Acid have gluten in them. In 1998 the FDA approved and further encouraged Folic Acid fortification in an effort to reduce the number of spinal bifida births by 25%. This means you likely need more than the advertised 600mg / daily marker. My doctor and my nutritionist asked that I pump that up to 800mg/day.

Good news? Rice Chex does have a decent amount of Folic Acid. If you incorporate Rice Chex into your diet for Iron you will also get some Folic Acid.

CALCIUM: At least 1200 mg/day is recommended for pregnant women. BUT, a lot of Celiacs are also lactose intolerant. For those of you with this problem (or if you are like me and hate milk) you need to find calcium alternatives and supplements. I talk here about seaweed as a calcium alternative, but there are many other options including flax seeds, almonds, papaya, oysters, clams and other shellfish.

VITAMIN D: There is a ton of new research being done on Vitamin D making it really important to not rely exclusively on your doctor or a pregnancy book to understand the latest on Vitamin D. Do your own research. There is a laundry list article on wikipedia on Vitamin D to give you a sense of all of the links that have recently been discovered including a link to Multiple Sclerosis.

On challenge with Vitamin D is that everyone – EVERYONE – has a different level of absorption so you must get tested frequently to see your own scores and monitor them. My score was a measly 18 the first time I got tested. YIKES! Its supposed to be 150. I went to Argentina for 2 weeks and started taking Vitamin D at the same time. Next test showed up at 180 – too high. I was just tested again and my score went back down to 15. ARGH! I live in New York City and spend most of my life with sun screen on which limits my exposure to the sun. I continue to work with supplements.

Vitamin D is one of the those vitamins that your body does not get rid of if it has too much so its dangerous to start supplementing, especially if you are pregnant, without actively testing. I ask my doctor to throw in a test here and there during my prenatal visits which has made it very easy for me to track my progress, or lack there of.

Let me know if you have found any of your own tricks when trying to achieve the right balance of vitamins during a gluten free pregnancy!

 Photo Credit: bies via Compfight

Use Facebook to Comment on this Post

I am entering my 29th week of pregnancy and am stil a bit aggravated about my week 28 check-in! What I have discovered on my path is that the only thing most doctors are concerned with, if they give celiac disease any credence at all(I found one that does), is whether or not the baby is growing.

This translates into a sonogram every 4 weeks where the baby is measured for growth. My doctor seems to be measuring the baby’s femur and her weight each time.

While the baby did grow quite a bit – 1pd 2oz in the past 4 weeks – my weight increased by 1 pd. And the doctor was not pleased about this. She said she is concerned. When I asked her to articulate what she was concerned about, she didn’t really have an answer beyond “you are a celiac so we have to pay attention to your weight gain.”

I got home and was upset and worried. I felt like a bad mom.

Then I looked at the data. I decided to geek out during my pregnancy about my weight and I AM REALLY glad I did. After learning that this would be the the one thing they were tracking and having a strange scale experience during my first pregnant visit, I decided to take matters into my own hands.

During the first appointment I noted that the scale at the office weighed me in at 9 pounds more than I weighed at home. I got a little nervous trusting their measurements. When I asked the nurse about it she reported that “all the scales in the office are different.” This was not a side comment! She shared that one day she weighed herself on all the scales, one right after the other, and there was a variance of 10 pounds between some of them.

Um, ok. Isn’t that a big DEAL when your practice is full of woman whose weight you are tracking? I told my doctor about it and she rolled her eyes.

So I took things into my own hands. My husband found a scale that reports weight over wi-fi to a web page. Its called a WithThings. This link will take you to my amazon store to check it out. Its extremely accurate scale that also records your BMI and fat percentages. I have lost about 2 pounds of muscle during this process which has been good for me to monitor and keep working on.

Maybe this sounds a little daunting, blasting your weight over your local network. BUT if you are a Celiac I recommend it. This will be a primary point of focus during your pregnancy. Withings also has an iphone app. I wish I knew about this before this last visit!! but I have it loaded and ready for my next one.

Back to last week. I was upset when I got home and worried about the baby. But after the initial worry / shock passed I was able to pull up my Withings chart and see the trend of my weight gain and see ok, I am doing fine. According to the March of Dimes, I am on track. My numbers: total weight gain so far is 18 pounds at 28 weeks. 

And further, in checking around, the baby is actually doing great!! She is a little bigger (not surprising since I am 5 ft 10 1/2 inches tall) than average according to this chart on babycenter.com.

I feel better now. And I am a little aggravated that the doctor I saw couldn’t think outside of the 4 week window of weight gain. But I also see I need to advocate for myself – and I can during my next visit.

Use Facebook to Comment on this Post