Food Intolerances: Our Journey

I talk to people often who have questions about our food intolerances and allergies.  How did we know we were allergic or intolerant?  How did we figure out what foods we could and couldn’t eat?  How did we go about cutting foods out to figure it out?  So, I find myself telling the story again and again.  And I know that for all of the people who ask me, there are others out there wishing there was someone to ask!

Before our second child came along, I would have told you that we had no food issues in our immediate family.  My husband’s mother had Celiac Sprue, diagnosed later in life, but my husband, myself and our daughter had no issues whatsoever.

And then came Walter.  And Walter was the most unhappy baby in all the land.  Walter started out with a posterior tongue tie, which took us 7 weeks to diagnose.  We were doing our best to breastfeed, but it wasn’t working because he couldn’t maintain suction.  So, I was pumping round the clock, while caring for an inconsolable newborn and a 2 year old whose world had just turned upside down.  After about 2 weeks, it became evident that I could not pump enough milk to give him breastmilk exclusively, and we began to supplement with a hypoallergenic formula.  Two weeks later, Walter was projectile vomiting formula (no breastmilk, just formula), had a red ring around his bottom, had stomach cramps, could barely sleep, and was all around miserable.  I was told that he was forming an allergy to the formula, and since he was already on the most hypoallergenic formula there was, that if I couldn’t get enough breastmilk to feed him, I was to have him admitted to the hospital so they could feed him there.  Luckily, I had friends with pumps and the milk was supplied for the next 3.5 weeks until we diagnosed the tongue tie, had it snipped, and were able to nurse full time.

And then we had a little respite.  Sort of.  Walter still had crazy reflux.  Crazy, crazy reflux.  If he wasn’t on 2 types of reflux meds simultaneously, he didn’t sleep.  And those who know me will know that I don’t medicate my kids unless it is absolutely necessary.  So having a newborn on 2 different reflux medications is not on my list of things I happily do.  But this baby was just miserable.  He didn’t want to be worn in any of my carriers.  He wasn’t sure he wanted to be held, even.  But putting him down meant eruptions of breastmilk from his poor little body.  His stomach cramped constantly.  I would be holding this little tiny baby, and he would start wailing, while his little body scrunched against me and his stomach would become as hard as a rock.  He would scream and flail.  Nothing could make it better, and nothing would calm him down.  Then, a few minutes later, his stomach would soften, and he would calm down again.  This went on day and night.  He would wake from a sound sleep, screaming in pain at the stomach cramps.  And the gas!  Oh my word!  All babies have gas.  This is just a fact.  And when I would try to warn people about Walter’s gas, they would laugh like I was some prude who didn’t know that babies get gas.  But Walter didn’t have those cute little bubbles of gas that smell a little like milk at worst.  Walter had old man gas that smelled of rotten eggs so much that he once cleared about a 12 foot circle at a play group.  I think he was about 3 weeks old at the time.  And then there was the diarrhea/constipation cycle.  He would go days and days (and days) without having a bowel movement.  We would all wait and wait for it.  And then, when it would come, it would be dripping from all over him.  Many people claim that breastfed babies don’t get diarrhea.  Those people are wrong.  Diarrhea in breastfed babies is runny, high in volume, lacks the “seeds”, and is brown or green in appearance.  Until Walter was about 4 months old, pretty much every bowel movement required a bath.

Two year old Sofi would gather supplies for me while I held a baby, dripping in poo, over the kitchen sink.  She would bring the diaper pail, and I would strip his clothes off.  She would bring a dish towel, and I would lay it in the bottom of the sink and start the water.  She would get the baby’s towel, a clean set of clothes, and his body wash if it had been left in the bathtub.  Then she would push her high chair over to the sink and stand next to me while I washed off all of the mess and rinsed him clean.  Then she would hand me things as I got him dressed.  I’m not sure what I would have done without her!  I still feel that way most days.

So, after three months of a baby who rarely slept, who vomited constantly (even with medication), who had stomach cramps and constipation and diarrhea and was just generally miserable, I finally gave in to a friend who said, “Kellie, you have got to take this baby off of dairy!”  We made a plan and went cold turkey off of dairy for 10 days.  Within just a few days, we had a different baby.  He was actually happy sometimes!  He slept some.  He stopped throwing up all of the time.  And, let me just take this moment to point out that there is a big difference between a baby who spits up, and a baby who vomits.  He stopped having nasty diarrhea and actually had some nearly normal bowel movements!  We knew we must be on to something.

But, you don’t just give a food up and assume it worked.  No, you have to test it.  Scientific process and all.  So, after about 10 days, I sat down with a big, cold glass of milk.  Wow!  That glass of milk changed my outlook on life in ways I didn’t even realize at the time.  First of all, my system revolted at this addition.  I lay in bed that night, feeling my stomach and intestines swelling and throbbing as that milk slowly made its way through my system.  You see, the normal response to drinking a glass of something is to move it through your system in a matter of minutes.  But, that milk had slowed my system to a crawl.  For weeks, I could feel with my fingers where that milk was in my system because of my swollen intestines.  I realized that first night that I would NEVER drink another glass of milk so long as I lived.

And let me be completely transparent here.  There are people who never drink milk, and people who drink too much milk, and all manner of people in between.  I drank a half a gallon of milk or more a day, and ate cheese, sour cream, blue cheese dressing, and any other kind of dairy you can think of on pretty much a daily basis.  So realizing all at once that I would NEVER drink another glass of milk again as long as I lived was PRETTY HUGE for me!

Within hours, my baby had become fussy again.  By 18 hours later, he was a mess!  Cramping, vomiting, constipated, screaming, not sleeping – the whole nine yards.  That glass of milk was definitely the culprit!

So, we knew the dairy had to go for me and Walter.  At that point, we were still naive enough to think that we could keep it in the house for Sofi and Micah, but not use it for me and Walter.  That lasted about 6 months.

And what do you do when you can’t have dairy?  Well, you go out and buy dairy replacement products!  So we bough soy based margarine.  We tried several different types of milk substitutes – which were all terrible to me at first, by the way.  We bought soy based snacks since I had lost the milk protein.  I basically went from consuming dairy every day to consuming quite a bit of soy every day.  And while my stomach and intestines eventually recovered from the glass of milk experiment, Walter never did.  He never seemed to get past his old symptoms this time.  We were perplexed.

And then another friend said, “I hate to tell you this, but most people who can’t tolerate dairy, also can’t tolerate soy.”  I did my research, and this is a fact!  So, the soy replacements went.  And Walter began to get better again!  The diarrhea was mostly gone.  We were able to discontinue one reflux medication.  He began sleeping sometimes!  The stomach cramps were mostly gone.

But still, there was something.  It happened after the weekend, a lot of the time.  It was obvious that there was something else that we were eating that was bothering him, but not something we ate every day.  This took a lot more trial and error.  We eliminated several of the top allergens, one at a time, with no improvement.  Finally, we eliminated corn – including my soda habit.  And I had a totally different baby!  Not only did he sleep, and poop, and keep food down – he actually giggled!  He played!  He was HAPPY!  It was such an amazing transformation!  He began gaining weight, as well. I forgot to mention this before, but while he was born my heaviest baby to date, he quickly dwindled on the growth charts.  When we would weigh him around exposures to dairy or soy, his growth would cease, even while he ate a normal amount.

So, we lived without dairy, soy or corn.  It was an adjustment for us, and there was quite a learning curve.  For instance, we had been off soy for probably four months before we realized that the tuna in water we regularly ate was actually in soy broth, not water.  To get tuna that is not in soy, we actually have to spend two to three times the amount of money that we would for regular tuna.  We had to learn that while a food at a restaurant might seem safe, it was never safe to assume that it was.  For example, would you have guessed that the meat at Subway almost all has dairy and soy in it as fillers and flavor enhancers?  And we learned that if we aren’t reading it in writing, that we cannot assume that people working at a restaurant actually know what is in the food; like the manager at an Arby’s who assured me that their wheat bread didn’t have any dairy or soy – it was only “wheat and bread.”

And no matter how diligent you are, there are always contaminations.  We once bought a giant jar of peanut butter marked “processed in a facility with (other allergens)” and were sick for a month before we figured out what the culprit was.  We learned pretty quickly that having our contaminants in the house at all just didn’t work.  If Sofi had butter on her toast, it would somehow end up in mine or Walter’s mouth – probably just from a little spot of it on the counter or table where it had been prepared.  So everyone in our house learned to live without these things.  And our lives improved in unimaginable ways.  While many people we knew were astonished to learn that we didn’t eat so many foods, and couldn’t imagine living without them, we couldn’t imagine going back to the constant illness, the screaming baby who didn’t sleep, and the tension in the house that went with all of that.

Another note in this time frame; we spent plenty of time at doctor’s offices during these months.  The allergy clinic did a blood test on Walter for the foods that I said he couldn’t eat, and it came up negative for food allergies.  The GI doctor tested his stool and it tested positive for blood, which the doctor informed us indicated that he had food allergies.  No one could tell us what he was allergic to, and there are no test for sensitivities or intolerances that are reliable (and yes, I’ve spent hundreds of desperate dollars testing them out).  So, we were on our own, working through the process of elimination and monitoring symptoms.  But we KNEW that there was a problem directly related to food and through researching and maintaining the diet ourselves, we were able to achieve the results the doctors wanted to achieve (remove symptoms and allow Walter to gain weight) although they were not so willing to entertain the idea that the symptoms were related to food.

So, this is how our life went on for 2 years.  We ate our diet.  Walter grew, was a mostly happy little man.  And we were a happy little family again.  Except…  except that we just felt like we were missing something…  And we watched, and noted, and tried to figure it out.  Finally, I decided that we were going to try going off gluten.  This seemed to big and difficult, considering how little we could eat already.  I was afraid.  I was intimidated.  But I was also determined.  I hadn’t come this far in the journey to getting my little man healthy only to ignore symptoms that I saw because I was intimidated.  I knew we could do it – there was just a large part of me that didn’t want to do it.

These two pictures were taken about two months apart, with us going gluten free about six weeks before the second picture.  You can see that he is already gaining weight, and his hair is getting thicker.
This picture was taken about 6 months after the second picture above. Look at how much more hair he has, and how thick and curly it is!

In the end, it turned out that going gluten free was the easiest transition we had made yet, for all it seemed so intimidating!  We had already learned so much about food sensitivities, and how to be safe, and how to look out for hidden ingredients, and all of the other pitfalls, that gluten didn’t seem nearly as hard as the original eliminations had.  And we saw such an incredible difference in Walter!  After being off gluten for only a matter of weeks, his bowel movements changed.  I realized after seeing them change that up until that time, there had been blood in his stool every day.  I just thought that was what his stool looked like!  It was truly a miracle to have him off all of those foods and watch him become a totally different person who felt and looked healthy, revitalized, and full of energy!

Over time, him symptoms have changed.  I’ve become so used to watching for the differences from foods over the years, that I see things that other people would write off as different things in a four year old boy.  For instance, starting when he potty trained, Walter would have accidents ONLY when he had an exposure to one of his allergens.  He still will wet the bed ONLY when he has been exposed.  He has a tendency to lose impulse control when he has gotten an allergen.  I laugh that he is the poster child for ADD when he gets something, but he has gotten better at coping over the years. His behavior is still off, his emotions run high, and he has a harder time coping with day to day things when he has had an exposure.  Over the past year, he has begun developing a rash on his body when he comes into contact with gluten.  And in general, he can just seem rash, defiant, and uncooperative when he has a contamination.  He also gets dark circles under his eyes when he’s had a contamination.  He still gets stomach cramps.  I no longer accompany him to the bathroom, but sometimes when he gets something, he will yell and cry as he has a bowel movement.  He has learned that when he gets a contaminant, he doesn’t feel good and he doesn’t like it.  So he is very responsible for his own well being in this area, and willingly avoids foods that have these things in them.

Elliott, also has several food sensitivities.  He can’t have all of the same things as Walter – except that we learned recently that Walter can’t tolerate hemp and hemp milk is the only milk substitute that Elliott does tolerate.  Elliott also can’t tolerate rice milk, almond milk, coconut milk, or eggs.  He is also iffy on peanut butter.  His reactions are similar to Walter’s, but not as intense.  He has always slept quite a bit more than Walter did.  He doesn’t get the insane mood swings that Walter does with contaminations.  He gets cramps, but not as badly.  He has always gotten rashes from various foods, which Walter didn’t as a baby.  And Elliott’s reflux wasn’t as bad as Walter’s, although he did still require medication as a baby.

And in the middle of all of this, we discovered that I am allergic to milk.  This explained SO much of my life!  And, I finally allowed myself to be convinced by the helpful people in my life that if both boys were reacting to the same foods in my breastmilk, that I also have a problem with those foods, or they wouldn’t have passed through my milk in pieces big enough to be recognized as dairy, soy, corn or gluten.  Had I been processing them properly, they would have been recognizable only as breastmilk.  Eliminating these allergens from our diet, our toiletries, and everything else we come in contact with has cleared up my acne (although I immediately break out again if I have dairy).  It has helped tremendously with my skin health over all, and with my dandruff (although it is always bad, it just isn’t as bad).  It has helped my mood to become more stable.  It has helped the lives of our entire family to be more calm and happy.

At this point, all of us eat the same diet when we are together.  Sometimes Papa or Sofi will eat something on our no list when they are out somewhere without the rest of us, but for the most part, we’ve learned that we all feel better without these foods in our diets.

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