Baby Without Gluten

When I look back at the last year, it’s almost as if I dropped off the face of the earth for the last year (mostly). Where have I been? I had a baby. Long story short (which will be explained in further detail later in another post)... I went through multiple tests to figure out why we were having trouble conceiving after two years of trying in the spring of 2015... which led to fertility treatments for unexplained infertility  in July of 2015... which resulted in me finding out I was pregnant on August 1, 2015... which led to a “normal” pregnancy including morning sickness until the day after Thanksgiving when I went to the ER with horrendous side and back pain... which led to a diagnosis of either kidney stones or hydronephrosis... which caused me to be on modified bed rest to keep the pain under control by laying only on my left side for over three months until I went into labor over four weeks early... and now I have a bouncing baby boy who is six months old. Whew! It’s been a year.

The American Academy of Pediatrics (AAP) now recommends solids are not introduced until six months of age (as opposed to the previous four month recommendation). Our pediatrician agrees with this recommendation, so we just got the go-ahead to start solid food at his check-up this week after six months of exclusively breastfeeding and pumping.

Normally, the first foods you would give a baby in the United States would be a type of grain cereal such as rice or oatmeal. I haven’t paid a lot of attention to the controversy concerning arsenic in rice, but I am aware of it enough that I knew what the pediatrician was referring to when she said she didn’t recommend rice cereal for this reason. My husband and I had discussed how we wanted to go about introducing gluten enough for me to realize oatmeal could be a problem. I didn’t want to sound like a complete fruitcake, so I held off on voicing my concerns regarding finding a gluten free baby oatmeal. There were a lot of things to consider, and I simply hadn’t done my research:

1. Is there a gluten free baby oatmeal on the market?
2. If so, do they use mechanically sorted oats or purity protocol oats?
3. Could I make my own baby oatmeal if I couldn’t find a sufficient one already on the market?
4. Are the baby oatmeals fortified or is it basically regular oats ground up?

After a lot of discussion, my husband and I had agreed that we would like to hold off on introducing gluten until the following criteria were met:

1. He would be consuming enough on a daily basis that he would test positive for celiac disease if he has it.
2. He was old enough to give us some indication something was wrong besides only fussiness and/or a concerning change in his diapers.
3. He could consume this gluten outside of our home so it was less likely he would contaminate me.

We originally decided we wouldn’t be careful about cross contamination because we didn’t want him to grow up fearful of it if he never wound up with celiac disease. We may or may not change our minds on that, but for now, we have changed our mind and we’re going to be careful. We had some family friends staying with us and they have a daughter about the same age. She was introduced to solids while staying here, and our poor little guy wound up with a horrible eczema flare immediately after she began eating regular baby oatmeal. What started as a few minor eczema spots on his legs prior to the oatmeal exposure spread to cover his legs, back, and arms after the exposure. His chest and stomach were also starting to show signs of it. Rational thought tells me that it’s unlikely he could have been contaminated through oatmeal that someone else ate, but the timing seemed to be far too coincidental. They also tend to chew on the same toys, lay on the same blankets, etc, so it’s definitely not out of the realm of possibilities. After taking him to the doctor to confirm it was all just eczema (I'm not one to run to the doctor about everything, but rashes can be scary), she confirmed it was eczema, that it had flared, and we needed to change back any recent changes that could have triggered it. We asked our friends to stop feeding the oatmeal (at least in the house) because that was the only recent change in the home.

So for now, we’re going to be extra careful until we can do a controlled experiment to see what happens. I personally go back and forth between tolerating and not tolerating gluten free oats, so it’s possible he just can’t have oats as well.

We absolutely adore our pediatrician, and she was quite understanding of my fears. I’m actually allergic to wheat in addition to having celiac disease, so there is the potential that he’s allergic to wheat as well, and that reaction caused the eczema to flare, however she thought it was unlikely.

I know part of the reason for doing a cereal as a first food is because a baby’s iron stores start depleting around six months of age. In my research, I went to healthybabies.org to see if I could find an alternative. I was actually quite relieved to see they also recommend various meats such as turkey, chicken, or beef because they are full of iron and nutrients. It actually listed the meat as a first food ahead of the grains. After grains, it said to try fruits like applesauce, pears, peaches, bananas, or other mashed/strained fruit or vegetables like cooked carrots, peas, and sweet potatoes.

At his check-up, we mentioned introducing a meat rather than a grain as the first food. We figured if he did well with that, then we’re going to move on to fruits and vegetables and skip over the grain entirely. We were prepared with a backup plan of starting with something like sweet potatoes to get him used to the idea of food in his mouth and then having a meat be the second or third item we try. She actually recommended starting with a few different fruits and veggies because babies rarely actually eat/swallow much of the food the first week. The original food is to get them used to the texture and having something else in their mouth. She said the texture of pureed meat can be kind of weird to a baby, and breastfed babies are still getting all of their nutrition from breastmilk anyway, so it wasn’t necessary to get the iron from food. She said once he was doing well with baby food, we could move on to trying meat.

We had discovered there are no gluten free baby oatmeals (at least that I could find), so that was not an option to give him an actual baby cereal. Our pediatrician confirmed that baby cereals are fortified, so it would not be the same thing to get gluten free oats and grind them into cereal for him.

Now we have a plan. We were gifted a couple different jars of baby food at my baby shower including sweet potatoes, prunes, pears, and carrots. We decided to start with the sweet potatoes. There was no particular reason for this besides it sounded good, and we definitely weren't going to start with prunes. Ha ha!

Baby's first food

I don’t know if our plan is the best way to do things or not, but we feel it is best for our family. We feel comfortable that we’ve done our due diligence with research and received the go ahead from the pediatrician. It also makes me feel better to know that initial food for babies is more about exploration than it is about nutrition.

Reasons to get a Definitive Diagnosis

It’s no secret there is growing mainstream interest/curiosity in the gluten-free diet/trend. I’ve been noticing a lot of people starting the gluten-free diet without knowing the potential pitfalls of doing so without having proper testing done first. Many later want some definitive answers about their failing health.

In order to get the best possible answers, it’s best to follow a certain diagnostic protocol, and these are my reasons to do so:

1. The gluten challenge sucks
1. I’m being frank with this one. I’m not sure there is a better way to put it, but ultimately, the gluten challenge sucks. Most people I know who have tried it didn’t last more than a day or two.
2. Repeat after me “The blood test and biopsy for celiac disease require you to be consuming gluten for accurate results.” If you remove gluten from your diet prior to having any testing done, you will have to reintroduce it in order to have the tests done. It sounds like no big deal until you deal with the symptoms of consuming gluten again. If you don’t have celiac disease, it’s unlikely you’ll react to it, but if you do have celiac disease (or any other gluten-related disorder), you’ll likely be miserable.
3. Different research centers have different recommendations, but the gluten challenge requires you to consume anywhere from a bite of gluten to four pieces of bread per day from anywhere from a week to twelve weeks (all depending on who you ask). My opinion is that I would be eating the highest amount recommended for the longest period recommended to ensure my results were going to be positive if there were any doubt. Who wants to go through a week of torture only to get negative results and then question if the results were accurate because you might not have consumed enough for a long enough period of time?
2. Insurance
1. Future medications: Imagine the day when a medication is developed to either prevent damage from cross contamination or allow you to eat gluten. Now imagine the cost of new medications before a generic is available (these are often thousands of dollars). Now imagine your insurance company will only cover the medication if you have a definitive diagnosis. Now imagine how badly you want a time machine so you can go back in time to get a definitive diagnosis.
2. Additional diagnoses: It is common for those with one autoimmune disease (ex. celiac disease) to have additional autoimmune diseases. Many insurance companies require pre-authorization for testing because the tests are expensive. If you have celiac disease, it is likely they will approve the testing, but you could be in for a fight if you can’t prove you have celiac disease.
3. Adherence to the diet
1. According to the University of Chicago Celiac Disease Center, studies have shown individuals are more likely to adhere to the gluten-free diet correctly with an accurate diagnosis via blood work and biopsy.   
2. Those without positive results on both tests tend to cheat more often and be less careful.
4. Questioning the diagnosis
1. What if your symptoms don’t resolve completely? Say you still feel sick… is it refractory sprue where you won’t respond to the gluten free diet… or are you still mistakenly consuming gluten… or do you have other food intolerances… or did you actually have a different condition altogether that happens to respond positively but is not treated by a gluten-free diet?
2. Without a definitive diagnosis, the only way to find out if it’s for sure celiac disease is to start consuming gluten again and get tested. If you have any sort of gluten intolerance (and a condition that responds well to a gluten free diet), this process is going to be torture or impossible. Wouldn’t it be easier to get the accurate tests done in the first place and then look into other possibilities if the test for celiac disease is negative?
3. There is nothing saying you can’t adopt a gluten free diet if your test results are negative, but you’ll at least know it’s probably not actually celiac disease. This is invaluable if your symptoms don’t resolve so you know to be looking for something else.
5. Diagnosing additional conditions
1. The endoscopy can also reveal other issues going on. There are a lot of other conditions that commonly occur to those with celiac disease. Some of these can be diagnosed via endoscopy, so you have the potential of killing two (or three or four) birds with one stone.
6. Obtaining a baseline
1. The endoscopy is rated on what is called a Marsh Scale. Marsh I is the lowest amount of damage, whereas Marsh IV is completely flattened villi.
2. Knowing your Marsh score is helpful in cases where symptoms aren’t resolving. Your GI doctor may recommend a follow up endoscopy to check for healing to see if you are healing slowly or not at all.
7. Inaccurate results (false positives)
1. Although rare, it is possible to receive a positive test result on either the blood test or biopsy and not actually have celiac disease.

   

   Courtesy of the University of Chicago Celiac Disease Center

2. According the University of Chicago Celiac Disease Center, “tTG is falsely positive in about 2-3% of people in general, but in about 20% of those with Type 1 Diabetes or other autoimmune conditions.” What if your results were positive due to other autoimmune conditions other than celiac disease?
3. According to the Center for Celiac Research, the University of Chicago Celiac Disease Center, and many other top celiac research centers, there are multiple other potential causes for small intestinal villi damage which results in a positive test result during biopsy. This includes, but is not limited to:
1. Other food intolerances
2. Parasitic infections
3. Intestinal lymphoma
4. Tropical sprue
5. Crohn’s Disease
6. Radiation from cancer

   

   Other conditions that cause villus atrophy
   courtesy of the University of Chicago Celiac Disease Center

   

   Courtesy The Tender Foodie interview with Dr. Alessio Fasano

8. The genetic test is a screening tool only
1. Unfortunately, the genetic test for celiac disease only shows the predisposition to developing celiac disease. Testing positive for one or both genes only means that you could develop celiac disease--it does not have any way of telling you if you have it.
2. It is estimated that 30-40% of the population has the genes for celiac disease, but only approximately 1% of the population ever actually develop celiac disease.
3. The genetic test is generally only meant to “rule out” celiac disease.

There is a new diagnostic tool that is gaining wider and wider acceptance. This specifically mentions the biopsy via endoscopy may not be necessary because it requires you to be diagnosed through 4 out of 5 markers rather than through blood test, biopsy, and positive response to the gluten free diet. Dr. Alessio Fasano, from the director of the Center for Celiac Research, is a strong advocate of this new tool. The five markers are:

1. Symptoms
2. Positive blood test
3. Genetic compatibility
4. Intestinal biopsy
5. Resolution of symptoms on a gluten free diet

My issue with this method is that it requires 4 out of the 5 things to happen. If you skip the blood test or biopsy and start a gluten free diet, you are automatically down to a maximum of four that can be confirmed. One of the criteria is a response to the gluten-free diet. If your symptoms improve, but don’t resolve, then you’re stuck. Do you go back on gluten so you can get the fourth marker and have the biopsy or blood test done? What if you’re gluten intolerant and something else is actually going on. You’ll never know if it is celiac disease because you’re stuck at a maximum of three markers unless you choose to do a gluten challenge. It can also be hard to get insurance to cover the genetic test because genetic tests are expensive, and it doesn’t seem insurance companies have caught up with the research on testing.

With all of this being said, I highly encourage you to find a doctor who knows what they are doing with the tests. The last thing you want to do is prolong your suffering because the wrong tests were run or they were run incorrectly resulting in inaccurate results. I’ve seen so many accounts of individuals being misinformed regarding the diagnostic process which leads them to skip testing, get inaccurate tests, etc.