My Family’s Ongoing Journey towards an Organic Gluten-Free Lifestyle

By Rivka Seeman

Life hadn’t been easy for a while.  I struggled to maintain my composure while my small child had raged on the subway in front of numerous strangers and sometimes acquaintances.  Night terrors, “growing pains” that woke him up at night in tears, behavior that would change without warning- I knew something was wrong.  Possibly something he was eating.  His main food groups were dairy and wheat.  His cousin’s juvenile arthritis, an auto-immune condition, was being helped with a gluten-free diet.  I decided when he needed a blood test anyway, I’d ask the doctor to test him for food sensitivities. 

Unbeknownst to me, the nurse had written his weight down in his chart wrong and it looked like he hadn’t gained weight in a whole year, a classic sign of Celiac, so although Celiac hadn’t even occurred to me, it did occur to his pediatrician.  I would later find out how lucky we were to have a pediatrician who knew enough to be willing to check for Celiac, and who knew what she didn’t know.  She referred us to a knowledgeable gastroenterologist to confirm the diagnosis and receive ongoing medical care.  Not every medical professional has the knowledge to check for Celiac and some do provide very little guidance on where to go from there.

I received the call with the diagnosis for Celiac from the pediatrician one day when my recently turned seven-year-old son was at school.  I had seen the actress, Jennifer Esposito, on Larry King a few years earlier, talking about the book she wrote, Jennifer’s Way: My Journey with Celiac Disease, ”What Doctors Don’t Tell You and How You Can Learn to Live Again,” about her long ordeal that led to a Celiac diagnosis.  I knew enough to know this was going to alter his life forever.   I called my Mom to tell her and when I heard her voice I just started to cry and couldn’t get the words out.  “Celiac”, I finally said, through my sobs, “Joey has Celiac.”  My Mom, knowing less than I did about the condition, reassured me that he probably wouldn’t have to be so strict, which of course was far from true, but was a reflection of the limited knowledge that most people have about this disease.

Over the next several weeks, as we confirmed the results with a blood test and endoscopy (and intestinal biopsy) which came back off-the-charts positive, I vacillated between telling myself that in the scheme of things a Celiac diagnosis is not a bad diagnosis to get, if you have to get one, and feeling very sorry for the way my son’s life was about to change.  Being the Mama Bear I am, I read several books, joined several Facebook groups, and began to learn as much as I possibly could.  I wondered about each and every item that my son ate.  Would he be allowed to eat the roasted seaweed that was his only green vegetable, if it didn’t say gluten-free? I had a lot to learn all of a sudden, and I wanted to include my son in the process.  

I sat my son down and explained it all to him how dangerous it would be for him to continue to eat gluten and that he would in time get used to a new way of eating. 

I knew there would be a grieving process and I was committed to allowing him to feel what he needed to feel and not try to sugarcoat the truth.  I also decided to go gluten-free along with him as I couldn’t imagine eating his favorite foods when my baby would never be allowed to eat them again. 

He cried. He raged. We cried together.  He talked about his favorite foods.  He talked about the fantasies he had of going out for pizza with his friends after school when he was in middle school.  I didn’t even know he thought that far ahead.  He was grieving the loss of something he had been looking forward to that he hadn’t had the chance to experience yet.  He insisted that when he was 90 he would eat real pizza again and I told him that when he was 90 that would be totally up to him.

It was a significant lifestyle change- no more stopping for pizza on the way home from school or going to the zoo for the day knowing we could grab something to eat there.  Every outing required more planning than ever, carrying more stuff, figuring out how to hide safe food so we wouldn’t be stopped entering places that didn’t allow people to bring their own-(Don’t get me started on that one)!  We felt excited when we would find a restaurant where my son could safely eat.  Eventually, the boy who had cried when he found out that he’d never again eaten a KitKat (he’d probably only had them on Halloween) told me that his life really was just as good as before.  That was wonderful to hear.  He has handled his condition and lifestyle change surprisingly well but he still has moments when it gets him down.

My son was no stranger to less than healthy foods like french toast, pancakes, pizza, french fries, and cake.  Still, I made a real effort to buy organic foods when doing my grocery shopping or at least non-GMO which I had learned about a few years earlier.  I tried hard to make the bulk of his diet healthy even given his picky eating (not unusual for kids with Celiac).  Sure he ate boxed macaroni and cheese, but I only bought organic and dye-free and that’s what he was used to.  Items that I hadn’t started out buying Organic, like whole-wheat bread, were difficult to switch out for Organic. My son could detect slight differences in taste and texture and refuse to eat.

Of course, after diagnosis, there was no choice but to transition to a completely gluten-free diet.  Changing over was a difficult, time-consuming, and expensive process.  Those first few weeks, food shopping was like a full-time job- reading labels, visiting websites, and calling companies. I had to research every item and find a whole host of new staples.    

I ensured my son’s physical health by switching him to a strictly gluten-free diet, including making sure that he didn’t accidentally ingest a single crumb of gluten that might be found on the grill in a diner or in the toaster oven that I replaced with a brand new one that had never contained gluten.  I was also concerned about his emotional health.  I went through a period where I started buying all kinds of sugary things that I wouldn’t normally have in the house because I never wanted my son to feel excluded from the fun.  In second grade his teacher emailed the day before to tell me they were gonna have marshmallows for some class party and to make sure there would be something safe for him.  I opened up my cabinet and emailed back, “what size?”  I had standard, mini, and jumbo.  Saying No to junk food was harder than ever as I tried to compensate for my son’s restrictions. I even created a budget category called, “safe foods for events,” for those times when I had to stop at a gluten-free bakery (Thank God those exist) for a gluten-free version of some holiday or birthday treat.

At the same time, I wanted my son to heal and to get well and I continued reading and learning in addition to regular consults with a Pediatric Gastroenterologist and a dietician specializing in Celiac.

My son’s small intestine was damaged by his auto-immune condition, making it difficult for his body to absorb nutrition- especially iron and vitamin D, in his case.  Other possible deficiencies include vitamin B6, B12, folate, calcium, and vitamin K. (Samsel and Seneff) Simply put, the lining of a healthy small intestine looks a bit like a brush with microscopic fingerlike projections called villi, which are responsible for the absorption of different nutrients and their transport into the bloodstream.  The small intestine has a huge surface area so if a small part is damaged other parts can often compensate. (Green and Jones, 12-15) However certain nutrients are only absorbed by particular parts of the small intestine, which may be the very parts that are inflamed or destroyed by the auto-immune response to gluten particles in people with Celiac disease. (Green and Jones, 35)  Celiac disease is usually diagnosed by an intestinal biopsy which shows the damage done to the villi in the small intestine.  Left untreated, my son could be at higher risk for osteoporosis later in life from the lack of vitamin D and a whole host of other illnesses.  The hope is that by switching to a strict life long gluten-free diet, the small intestine will heal and remain healthy, enabling my son and others with Celiac to absorb all of their nutrition again as well as decreasing the likelihood of various cancers whose risk is greatly increased in cases of untreated Celiac.  

Being that I now had a child whose body was injured from an auto-immune disease, I realized that feeding him foods that wouldn’t hurt him was more important than ever.  A few years back I had read a book about GMO's, Genetically Modified Organisms, and understood that some foods had actually been engineered to withstand large amounts of an herbicide called glyphosate (the most widely used herbicide in the world)- which meant that those particular genetically modified crops would be heavily doused with this dangerous chemical, and should surely be avoided. Glyphosate is an herbicide with serious health implications including a significantly increased risk of cancer.  I took comfort in knowing that one of my son’s favorite foods since he was less than a year old, Cheerios, was non-GMO.  Cheerios is heavily marketed as a wonderful choice for one of Baby’s first foods.  Pediatricians recommend it to Moms as a way for young toddlers to practice fine motor skills, feeding themselves Cheerios by picking them up with their thumb and forefinger one at a time and bringing them to their mouths all by themselves.  In our household, they also functioned as a tool to get truly healthy food, avocado, into my picky eater’s repertoire.   Since toddlerhood, he had only accepted avocado in one form- blended with banana and milk and served in a smoothie bowl with cheerios sprinkled on top. 

Imagine my dismay when I learned that even grain-based foods that were labeled non-GMO likely contained glyphosate residues. In fact, Cheerios tested high for the poison, which makes me particularly angry because it is eaten by so many babies and toddlers. I fed it to my own son starting at 9 months old. In addition to being used as a weed killer in GMO crops, glyphosate is also used to dry out grains like wheat, oats, and rice, and even peas and beans before harvest.  So even if these products are labeled non-GMO, it doesn’t mean that they’re not contaminated with glyphosate.  

I was happy to find that some of the things he ate regularly were already safe for him but some needed substitutes.  And sometimes that meant conceding and buying conventionally grown items or even GMO ones. This is a terrible decision to have to make.  I started buying gluten-free pizza crust and making the pizza at home, but the crust was conventionally grown.  On the plus side, he evolved to the point of allowing me to put small but visible pieces of zucchini on his pizza as well as fresh basil.  

Since my son won’t eat fish or olives, and will rarely eat a nut, the one really good fat I can get into him is avocado- in the form of an avocado smoothie bowl.  I was never able to find an organic version of Cheerios that he would accept.  When he had to give them up post-diagnosis (they are now labeled gluten-free but their process of mechanically separating the oats from any wheat that may have gotten mixed in, does not guarantee the absence of cross-contamination), he stopped eating avocados entirely until eventually, he was willing to eat his smoothie bowl with Chex cereal on top.  When Chex began labeling due to some new labeling law that was passed in Vermont, I learned that they used “genetically engineered” ingredients.  So for a while, my son stopped eating avocados again as I tried and failed to find a healthier substitute, and then eventually I made another concession for my son’s nutrition.  Was it the right decision? I really don’t know. I’d feel better if they made an organic version that I could be sure wasn’t hurting my son. Foods are not allowed to be labeled organic if they use genetically modified ingredients and they also will not be doused with glyphosate before harvest.

It is surprisingly challenging to find food that is both gluten-free and organic on the shelves. Some of the brands that we were already eating made gluten-free versions of his favorites and organic versions, but not gluten-free organic versions.

It is frustrating to have to put the organic product back on the shelf because his health requires gluten-free food and that is the one absolute non-negotiable.  We have a hierarchy of needs that I search for when I do my grocery shopping: 

• 1. Gluten Free (absolutely non-negotiable) 
• 2. Organic (preferably grass-fed)
• 3. Kosher

I often joke that I try hard to make sure that I am always buying the absolute most expensive version of every item we eat.  I’m sure that my grocery bill is higher than most families twice our size, even those who live in New York as we do.  

Glyphosate can affect gut health as well as increase cancer rates-one of the very reasons why treating Celiac disease with a gluten-free diet is so important.  In fact, unlike the case with other cancers, non-Hodgkins lymphoma is a greater risk for people with Celiac even with maintaining a gluten-free diet (Green and Jones, 39).  I recently found out that glyphosate increases that risk as well.  (Samsel and Seneff) The idea that keeping my Celiac child healthy means increasing glyphosate in his diet by choosing gluten-free over organic, is maddening.   

Moms Across America has done tremendous work trying to ban glyphosate across the nation.  What we need to realize is that this work is especially important for those of us who have, or love someone with Celiac.  We have the right to feed our children food that is safe for them.  We can no longer pretend that just being gluten-free is enough.  Food with glyphosate is not safe-especially for kids with Celiac who are at an already increased risk of cancers and other diseases that are affected by damage to the microbiome, which we are increasingly learning are a whole host of them.

That’s one of the reasons why I’m so excited to partner with Zen and Moms Across America to finally work on addressing this situation. Gluten-free adults and parents of gluten-free kids need to band together to make positive changes to the health of people with Celiac and non-Celiac Gluten Sensitivity.  There are a few areas where I see the greatest need:

• Pass the Gluten in Medication Labeling Act- it’s crazy that when our children get sick, even most doctors and pharmacists don’t know if the medication they need is safe for them. 
• Increase awareness of the Americans with Disability Act and the ethical and legal obligation that companies have, to allow people to bring their own food so they can eat safely.  
• Increase the organic and gluten-free options so that parents no longer have to put the organic product back on the shelf because it’s not safe for their gluten-free child.
• Urge Congress to ban glyphosate once and for all.

I believe if we work together we can make some serious changes to protect the health of our precious kiddos.

Join me!

Rivka Seeman

Moms Across America Supporter

Click here for actions you can take to increase Organic and Gluten-Free options!