Emery’s Health Story [currently Dairy Free, Gluten Free/Celiac, and Grain sensitive]:

When Emery was born, in May 2011, she refused to nurse. She wanted nothing to do with me and when I’d attempt to get her to latch, she would arch her back and keep her head as far away from me as possible. After hours of pumping, very little sleep, many tears, 7 lactation consultants, major weight loss, a trip to the NICU for severe jaundice, and 9 weeks of effort, I gave up. She consumed very little breast milk in that time because my supply plummeted quickly and pumping wasn’t very effective. I had no exposure to natural anything at this point, so formula was the only choice I knew to make. [I’ll be doing a post soon on what I now believe were the causes of this whole ordeal and what I wish I had done differently]. She spit up like crazy on formula. We went through 2 burp cloths for every single feeding and they were always soaked. The doctors said it was fine, as long as she was gaining. She dealt with colick-y behavior and intense gas for a 2 week period around 2 months old but that was it.
Real Food Testimony: Lactose Intolerant, Grain Free, Gluten Free/Celiac
She was born in the 25th percentile and at her lowest point was – 8% off the charts. When we introduced solids at 4 months, she was never interested. I would watch other moms feed their kids 1-2 tubs of baby food per feeding and was baffled. I made my own baby food for awhile and if you compare quantities to those plastic tubs of baby food, I could offer her the same tub 2x a day for 3 days [when the tubs are supposed to be thrown away] and she would maybe eat half the container. I would watch parents dump huge plate fulls of solids on their baby’s high chairs for each meal – Emery would spend an hour slowly picking at a few pieces of food. She loved all types of food but would never eat more than a few bites of anything, unless I worked VERY hard with her.
 
The one thing she was never interested in was baked goods. I would make her pancakes, muffins, breads, etc. and she would only take one bite and then set it down. Even cookies, cakes, and cupcakes. For as much as she was never really hungry for food, there was an obvious difference in the way she acted toward baked goods vs other food. One thing I am grateful for in all of this was that by the time she was eating food at 4 months, I had done enough research that I knew Fatty Liver Disease, which Andrew had been diagnosed with right after her birth, can be hereditary. It made me extremely passionate about only putting the best foods in her body. I was putting in a lot of hard work to break Andrew’s bad habits – I didn’t want to mess with having to fight that battle with her too. I wanted her to only know what real food tasted like, so I fed her extremely healthy. We never fed her processed, chemical filled food like frozen chicken nuggets, fast food, candy, popsicles, frozen pizzas, spaghetti-o’s, etc. Whenever we were with other people, I was the bad guy, telling people she couldn’t eat X,Y, and Z because Fatty Liver Disease can be hereditary and I wanted to expose her to as few chemicals and toxins as possible. Even though people thought I was crazy, controlling, and over-reacting, I don’t regret this for a second.

Real Food Testimony: Lactose Intolerant, Grain Free, Gluten Free/Celiac

first taste of grains at 4 months

She also progressively struggled more and more with constipation and would go several days to a week before having a bowel movement. We took her to the doctor out of concern, when she was about 4 months, but they blew it off as normal and told me to feed her more pears. I gave her pears, powdered probiotics, suppositories, prune juice, molasses, homemade herbal teas specific for constipation, etc, but eventually stopped because nothing was really helping. It got severely worse when we switched her to whole milk in May 2012. She would go almost everyday, but her stool was like rocks. I knew the day it happened what was causing it but I was in complete denial. My family has never dealt with any food allergies so I kept thinking there’s no way she could be dealing with it either. And, in all honesty, I was freaked out by the thought of learning to live life with a child that couldn’t eat dairy. It didn’t sound like the easy, care free life I’d always imagined with my kids. She also loved dairy – while she was an extremely picky eater, the one thing she couldn’t get enough of was her milk. I wasn’t ok feeding her a processed milk alternative so I was worried about how she would have handled loosing the only food she really loved.
 
In Feb 2013, while 28 weeks pregnant with Cooper, I was admitted to the hospital with contractions. I was on bed rest for 4 weeks until my water broke at 32 weeks. I was in the hospital until he was born naturally at 34 weeks, then Cooper was in the NICU for 5 weeks. It rocked Emery’s world. She went from being at home with me every day to going back and forth between two different houses every few days and being cared for by many different people. Not everyone could accommodate her nap schedule because of their kid’s schedules, which pushed her even more. When we got home, she was a completely different kid. Up to the day my water broke, she had always fallen asleep quickly and slept like a rock, 12 hours at night and 2 long naps during the day (at 20 months). She was calm, gentle, sweet spirited, and we got along like a dream. It was immediately apparent, the day we came home from the NICU, that something was going on with Emery.
 
 

After a week or two, the worst of the tantrums were over, as she realized life was back to normal. She understandably went through many emotions through it all and we expected things to be rough at first. But some things never went back to the way they were before. Her attitude was more pleasant, but there was frequent friction between us that wasn’t there before. She would have plenty of sweet moments, but something was still off with her mood. And she acted like she had insomnia and extreme fatigue simultaneously. She would wake up by 6:30, bouncing off the walls. Her eyes would be glazed over and hollow all day. She would zone out during meals, but when I put her to bed she would take 1-2 hours to fall asleep. She would move all over her bed, talk loudly, sing songs, get out of bed to play with toys, nothing like she was before the NICU.

When she did fall asleep, she was easily woken. When she did wake, it was like she never slept. She would come flying out of her room like she’d just chugged an energy drink, with her eyes big and wide. I think that’s what nagged at me the most; her eyes didn’t look the same anymore. I didn’t know how to ask a professional for help – there was no way what I was seeing in her wouldn’t be understood as normal toddler behavior. You can’t give a doctor your maternal instincts for your child.

I tried everything. I put her to bed earlier thinking she was over tired, I put her to bed later to see if she just wasn’t tired enough. I hung a dark sheet over her window to block the light and one day even tried skipping nap entirely, on the off chance she’d just grown out of it. Nothing worked.

 
Then in August 2013, she started having blood in her stool. It happened several times in a two week period. One night, after a trip to the park, she started complaining of stomach pain for the first time. Within a few minutes, she threw up several times. She got sweaty and was trembling. The only position she was comfortable in was curled in a ball in Andrew’s lap. Anytime he moved, she would scream in pain and shake so hard Andrew and I were in tears watching her. I flew around the house packing our bags to go to the hospital and cleaning our house. I was more convinced I’d have to call an ambulance because I didn’t know how I was going to get her strapped into a car seat if she couldn’t straighten her body at all.
 
By the time I was done packing, she was asleep. Andrew held her all night in a rocking chair and by the morning she said her stomach only hurt a little. She acted fine the rest of the day, but a few days later complained of stomach pain again. And again the next day, and the next day, and the next. It was never anything like that first time, but I did all sorts of research. Based on the way the blood was in her stool, it appeared to be a problem in her small intestine.  I made a doctors appointment, saved a sample of bloody stool, and took her in. He said it was impossible to tell the cause of the blood because she was so constipated – he wasn’t sure if it was because of constipation or something else, so he told me to put her on Miralax, but I didn’t. I was convinced there was a reason for her constipation and I didn’t want to mask it with medicine.
 
It sounds bad, but thank the Lord, she fell and her hurt leg a few days later. We thought she broke a bone, but Xrays didn’t show anything. She wasn’t walking normally though, so we took her to a chiropractor. They asked all sorts of questions about her health, and after hearing everything she’d been going through that past month, they said it sounded like lactose intolerance or a dairy allergy. They said not to eliminate it just yet, because adjustments can clear up constipation, so we were to wait to eliminate anything until she was done with her appointments, just to be sure we knew the real cause.
Real Food Testimony: Lactose Intolerant, Grain Free, Gluten Free/Celiac

snuggling before bed with her raw milk

At the time, Emery was drinking a glass of raw milk in the morning and before bed, but typically only ate dairy for snacks. That night however, I happened to give her cheese for a pre-dinner snack and made a baked pasta dish containing cream cheese, cottage cheese, cheese, and sour cream [oh, Pioneer Woman!]. After dinner she had her glass of milk, brushed her teeth and went to bed. A few minutes later I hear her calling for me. I go in to find her obviously in distress. She’s holding her stomach and asking me to snuggle her. I scooped her up, sat in the rocking chair with her, and she let out the loudest burp I’ve ever heard in my life.
 
Andrew and I immediately start laughing and I start explaining to her that that’s why her tummy didn’t feel good, and don’t you feel so much better now? She responded by throwing up all.over.me. Then she threw up all over the rocking chair. Then she threw up all over the bowl Andrew rushed in for her. She was crying uncontrollably, completely freaked out. I tried to calm her down while internally freaking out as well. I look around the room to see dairy, dairy, dairy, everywhere. Every bit of denial I’d been holding on to was gone in an instant. I felt an insane amount of relief and guilt at the same time – if I hadn’t given her so much that night, it might not have been so obvious to me that dairy was clearly the problem, but what did I just do to her??? 

Real Food Testimony: Lactose Intolerant, Grain Free, Gluten Free/Celiac

our first attempt at paleo cookies

We immediately cut all dairy out of her diet and I began to research like crazy again. Within 3 days of being dairy free her constipation cleared up; she had crazy amounts of gas, causing her stomach [which had always been extremely bloated – she looked malnourished with tiny arms and legs and a huge swollen belly] to shrink to half the size; the blood stopped, the vomiting stopped, and for the first time in her life she was ravenous. I couldn’t [and still can’t] keep up with her! All day long she’d follow me around the house, “Mommy, I’m hungry!” “Mommy, can I have a snack?” “Mommy, I’m still hungry!” To realize that all this time she wasn’t eating because her stomach didn’t feel good was such a sad moment. Many moments over the past 2 years ran through my head and things finally started to make since.
Real Food Testimony: Lactose Intolerant, Grain Free, Gluten Free/Celiac

Thanksgiving – her first big get together having to avoid certain foods. She had a great attitude!

I was elated, thinking everything was better now, but then a few days later all her symptoms were back again. I was baffled – she hadn’t had any dairy, why was this happening? After some back-tracking in my mind of what else she had and hadn’t eaten over the past week, I realized that by total fluke, she also hadn’t consumed any grains either in those first few days of being dairy free. Knowing that dairy and gluten often go hand in hand, I assumed that meant she must have a gluten allergy, so I immediately read up on what food items contained gluten and cut them out.
 
What happened next totally surprised me. Within a few days, her old sleeping patterns returned. She started sleeping in until 7:30. She would fall asleep within 20 minutes of me putting her to bed. She would sleep long and hard. She would groggily stumble out of bed, rubbing her sleepy eyes, and asking to snuggle. Cutting out gluten increased her sleep per day by about 3 hours, on average. Her mood improved. Our relationship improved. Our home was more peaceful.
 

Like always, I did some more research. Sure enough, high-stress situations can actually trigger symptoms of gluten intolerance. It appears as though the stress my pregnancy put on her caused her body to outwardly show more signs of her gluten intolerance. [Her never wanting to eat baked goods, even before the NICU, was my first clue] I also learned gluten causes problems specifically in the small intestine, which could explain the blood [although blood in the stool is also common for dairy intolerance as well.] I made an appointment in December 2013 to get blood work done for allergies and celiac, but everything came back negative. Our doctor said that “intolerances wont show up in the blood work, so obviously, if you notice something bothering her, just don’t give it to her.” I had done a lot of reading before hand and was surprised her celiac test came back negative, but I assumed blood work was a fail-proof method of testing, so I didn’t think twice about it. Once again, I thought everything was figured out! I cut out all grain items containing gluten, researched hidden culprits like soy sauce and caramel coloring, and removed everything from her diet. Woohoo, time to move on with our lives!

Nope.

A few weeks later the stomach pain started again and her constipation returned. I think I cried.

WHAT IN THE WORLD??? What else could it be? I started a food journal and did some experimenting. Turns out she can’t eat any type of grain without stomach pain anymore. No matter what we tried, if she ate it for dinner, she woke up in the morning holding her stomach right below her belly button, screaming and crying in pain. The intensity varied, but it never failed to happen. Whole flax seeds and chia seeds also cause problems. I have yet to meet with a naturopath, because of finances, but at her 3 year check up in May 2014, her Dr. said her system is moving slow enough that the grains are starting the fermentation process in her gut, which is causing her pain.

Fermentation? This struck a note for me. I knew he wasn’t talking about the fermenting I was thinking about, but it reminded me of a few things I’d read recently in the book Nourishing Traditions. While I’ve dabbled in a lot of traditional foods, I’ve rarely remembered to traditionally prepare grains. Why hadn’t I considered this? That night I cooked white rice in homemade chicken broth as Sally Fallon recommends in Nourishing Traditions, which makes the grains more digestible. Emery ate a small amount and vaguely mentioned a few hours later that her stomach felt funny, but that was it. Definite improvement! I’m going slowly, but hope to experiment with more properly prepared grains in her diet and see how it goes.

Real Food Testimony: Lactose Intolerant, Grain Free, Gluten Free/Celiac

making cauliflower pizza crust

Even with limiting and improving grains & cutting out gluten and dairy, Emery was still complaining multiple times a day of mild to moderate stomach pain and discomfort. I was constantly hearing,  “I don’t feel good, mommy. My tummy hurts.” After all this work, something is still off. In June 2014, I did deeper research and discovered that blood work for celiac is often inaccurate, especially in children under the age of 3. It felt like a punch in the gut. I was a frustrated that I didn’t go to a specialist for all her testing, instead of her family doctor. I feel like he wasn’t educated enough on this particular subject for many reasons. Because we still couldn’t afford a specialist, I started reading about celiac again. I hadn’t thought much about it since her testing, but in rereading in the information I was floored at the similarities:

WebMD states:

“Often, symptoms of celiac disease are confused with other disorders, such as irritable bowl syndrome and lactose intolerance. 

Symptoms for Children:

Infants and children with celiac disease tend to have digestive problems. Common symptoms for infants and children include:

  • Growth problems 

  • Decreased appetite and failure to gain weight 
  • Chronic diarrhea, which can be bloody
  • Chronic constipation
  • Vomiting
  • Abdominal bloating and pain
  • Fatigue 
  • Irritability

Children may also show signs of malnourishment. That’s because the disease prevents the body from absorbing essential nutrients. The stomach may expand, while the thighs become thin and the buttocks flat. [This explains her appearance to a T. Her stomach as always been extremely bloated and the rest of her looks tiny. Also as a side note, Nourishing Traditions states that a sign of malnourishment in your baby/toddler is a lack of fat in the wrists/hands and feet/ankles. Emery has always had incredibly slender hands and feet, completely void of chub compared to other children her age, which people comment on often.]

Factors Influencing Symptoms

Several factors may influence the symptoms that an individual patient has, including:

  • How long the patient was breastfed 
  • Age of patient when gluten was introduced to the diet [too early, as per her pediatrician’s recommendations – 4/5 months, although surely formula could be cross contaminated with gluten too? I haven’t looked into this.]
  • How much damage the disease has done to the intestine before it was diagnosed 

Some patients will not have any symptoms of the disease because their intestine is still able to absorb a sufficient amount of nutrients to prevent them.

Nevertheless, the disease will still take its toll. It should be treated as early as possible to avoid possible long-term effects of the disease, such as:

  • Malnutrition
  • Liver diseases [side note – I’ve suspected gluten intolerance for awhile, but after researching Celiac, realizing it’s often hereditary, and discovering that it can lead to liver disease, I’m very suspicious Andrew could have celiac as well. You can read his story here.]
  • Cancers of the intestine (in rare cases)

The importance of recognizing symptoms early — and beginning a gluten-free diet — is hard to overstate.

In children and teens, the disease can stunt growth and delay or shorten puberty. Hair loss and dental problems [just found out Emery has cavities!] may also occur among young people who continue to eat gluten.”

 
In addition to all this, autoimmune diseases run in Andrew’s family. His uncle has one and his aunt has three. Once this all sunk in, I started messaging a friend who’s 4 kids are celiac and finally understood how much work I needed to do in our kitchen to purge cross-contaminated items from our home. While nothing she was consuming directly contained gluten, our nuts, seeds, grains, etc were run on the same equipment as gluten containing products and therefore contained small traces of gluten.
 
I gave away our spices and bulk items that were processed in facility that also processes wheat, we pitched our play dough, I found certified gluten free soaps, shampoos, cleaners, make up, etc. It’s been 4 days since she’s eaten anything produced in non-gluten free facility and it’s been 3 days since i’ve heard her complain of stomach pain. GLORY HALLELUJAH! I’m not holding my breath, but I take every little victory I can get! 
 

We’ve decided not to do further testing to determine if she’s celiac. It would involve her going back on gluten for up to 3 months and I’m not willing to do that to her body. [Gluten damages the villi in the intestines of a person with celiac and has many long term consequences] We’ve decided to treat her like a celiac by avoiding gluten at all costs and to continue to research ways I can make her food as digestible as possible, like reducing phytates, avoiding processed food that kills nutrients she so desperately needs, etc.

We’re currently dabbling between Paleo and the Weston A Price lifestyle, as Emery’s tolerances allow. We’re prepping for the GAPS diet to heal and seal her gut, but our start date is pending [long story]. There have been so many times I’ve been overwhelmed and discouraged, but there’s nothing like watching your child suffer to make your inner mama bear come out. I’m exhausted, I’m mentally drained, I’m skill-challenged but I love her so much I keep fighting for her. And I’m so thankful for the day I realized she should be a part of what was happening in the kitchen – I brought her in before I recognized her health problems, but it’s been so fruitful for her to learn to prepare foods that help her body.

 
 
We’ve had many discussions, while cooking, about why real food is good for your body, why fake food is bad, what celiac is, how God created a way for her tummy to heal. It’s so much more beneficial for her to be a part of this process vs just having food set in front of her at each meal. Maybe I’m wrong, but I also think it’s helped her to have a better attitude when I have to tell her no about eating something someone else is eating. Because I’m educating her on what food is for, she’s starting to understand that I’m not saying “no” to be the bad guy, I truly care for her and her well being. She’s learning we’re a team – this isn’t a power struggle or a battle of wills. She doesn’t fight with me about food, she’s learning to trust my decisions and follow my lead. I’m for her, not against her and I truly think making her a part of this learning process has helped foster her trust in me.
UPDATE 6/5/16:
It’s been about 2 years since I wrote this post, I’m long overdue for an update!
 
At Emery’s first well child check up, after removing gluten and dairy, Emery was FINALLY ON THE WEIGHT CHARTS AGAIN! She was just a mere 3%, but it was a big jump up from her previous -8%. She complained a little less often about stomach pain after removing all cross contaminated gluten products from our home, but her constipation remained. We even removed traditionally prepared grains again.
 
The game changer for us was kombucha. In 2014, shortly after posting her health story here, I was reading up on the importance of trusting your child’s healthy food cravings and started noticing how often Emery was begging for kombucha. At the time, I was only making about a half gallon every month, which Andrew and Emery would drink in just a few days. I increased my batch to about 3 gallons a month with the intention to give Emery a glass every time she asked for it. After two weeks of asking for at least three glasses a day, Emery’s constipation and all stomach pain disappeared! She went from type 1 on the Bristol Chart, to type 4 every time.
 
She continued to drink this much for about a year and then finally slowed down to about one glass a day. After a year or so I slowly started to reintroduce traditionally prepared basmati rice and she did great. I read that butter and fermented dairy are often tolerated by people with dairy intolerance so we decided to test them out slowly in 2015. We were all able to consume both without problems, which was an exciting day in our house! We immediately stared putting butter on everything generously – we were in major need of more healthy fat in our diet! She even eats spoonfuls of it while I’m cooking! We introduced homemade milk kefir as well, which was such a nice treat for creamy smoothies!
 
We’d been eating this way for almost a year and the only thing lingering was her bloated stomach. It varied day by day. Sometimes it looked like it couldn’t stretch any further or feel any harder, and some days it was just protruding a little. In Feburary 2016 we started Intro Stage 1 of the GAPS diet. Within 4 days of being on the diet, Emery’s stomach was completely flat. All her shirts where hanging on her funny because they were all stretched out from her previously bloated stomach. We unexpectedly had to end the diet after 8 days and as soon as we returned to our normal diet, her stomach bloated up within a few hours.
 
 
Even though I knew a week on GAPS wouldn’t cure her dairy intolerance, I allowed her to have about 1/4 cup plain yogurt [the family we were living with was eating some and she wanted to try it], a few days after we stopped the diet, to see how she handled it. Within 24 hours she ended up with uncontrollable diarrhea. She was very emotional and embarrassed by the ordeal and was much more understanding of why she can’t eat dairy. After that, if she ever struggled with someone eating something she couldn’t, I quietly reminded her of what happened last time and she quickly agreed she should not partake. While I was sad for her embarrasement to her reaction, this was helpful for us because all her previous food issues had happened so long ago, when she was too young to remember. This was a fresh reminder for both of us that her diet restrictions are necessary.
 
 I am hoping to start the GAPS diet over eventually, as it was the best I’ve ever felt [after the initial detox] and I saw such drastic improvement in Emery’s stomach. I’d particularly like to pinpoint the culprit to her bloating. I’ll try to update as we find answers, hopefully before another 2 years goes by ;-)