Tuesday, June 23, 2009

How it all began - acid reflux, protein intolerance and possible celiac

My beautiful baby boy, "Little Z," was born. He was perfect -- 10 tiny fingers, 10 adorable toes. But something was amiss. While still at the hospital, he was spitting up a lot, was very fussy (he cried – and even SCREAMED – in his sleep!). He hiccuped constantly, and often choked on his spit up. He also had what I call "acidic puke breath." The nurses and doctors assured me that this was normal. What did I know? I was a first-time mom.

After we took our sweet, little bundle home, his problems worsened. He ate constantly, fussed continuously, and could only be comforted while on our shoulders or if he was held on his stomach. He would eventually crash, exhausted, but would wake a short time later and the cycle would begin again. I was bone-weary.

At one of his early check ups, the doctor said that it appeared he had reflux and was prescribed Zantac. It took around six days for the medicine to finally kick in, but it only seemed to give him a bit of comfort, and the constant night waking continued. I was a Zombie, and it was a rarity for me to get more than four hours of unbroken sleep a night (Little Z usually woke up every 45 minutes -- all night long). I was so sleep deprived that I became an insomniac and battled depression.

I was mad at God -- why had he given me this "broken baby" (yes, I yelled that at God one night). And I felt utterly evil that I resented my baby. I started to hate being a mother. I thought, "what have I gotten myself into?!" I couldn't find good advice from anyone (a lot of it, although good intentioned, was not helpful. i.e "perhaps you should try co-sleeping with him." BELIEVE me, if co-sleeping were the answer, I would have found that on my own).

We discovered that he would sleep the best in his swing or bouncy seat, and I kept it by my side of the bed. I would jiggle him furiously side-to-side throughout the night (to get the bobble-head affect discussed in the book, "Happiest Baby on the Block."); however, he still woke 8-15 times a night and would scream and arch his back. He would also jam his little fingers into his mouth and claw at the back of his throat. He was in so much pain. After 5 months of watching him struggle, I was at my wits end. It hurt to watch my baby suffer through so much pain, and I was utterly exhausted from only getting 3 hours of unbroken sleep a night (if I was lucky). Also, my marriage was suffering because my husband and I didn't see each other anymore -- we spent our evenings taking turns jiggling, bouncing or patting Little Z to sleep.

No one had answers and and no one understood. After increasing and changing his reflux medication several times, the doctor said the only thing left to do next was surgically tighten his esophagus. This terrified us. I had asked in the past if his problems could be food related, but the doctors assured me that reflux is due to a "mechanical issue" and is not a food issue. However, when they started talking about surgery, I knew had to see if it was a food issue. I was breastfeeding, so I went on the Total Elimination Diet (you can read about it on the Dr. Sears Web site).

I saw almost immediate results. He was happier, his acidic puke breath disappeared, and his hiccups vanished. These symptoms returned only if I accidentally ingested an offending food. His medications were able to control his reflux. He quit having diarrhea 6-15 times a day, and his adorable pot belly disappeared. He was a different baby. He wasn't totally fussy free (because I to this day still cannot put my finger on all the foods that bother him!).

I now know he has trouble with gluten, soy, all dairy, eggs, nitrates and possibly corn, peanuts, tree nuts, MSG, food colorings, preservatives, any kind of brine (i.e. a pork in brine) and bananas. (I have never even tried introducing any kind of fish, so he may have trouble with that as well).

He was tested for allergies and Celiac disease, and they all came back negative. This is why I say he is protein intolerant. In September of 2009, we are finally going to see a Pediatric gastroenterologist to see if we can get some answers, and figure out if he truly has Celiac disease (which runs in my husband's family).

To this day, Z is not symptom free, but life is so much better for all of us, especially Z. He continues to have diarrhea frequently (usually 3-4 times a day, but not like he was before!) and often gets yeast rashes. He seems to get sick more frequently than other children. I still can't pin down all the foods that bother him, even though he has a very limited diet.

It has been a tough and frustrating road, but I have found strength in the Lord and have discovered a wonderful network of parents and organizations who offer great advice, tips and recipes. I hope this blog will give you much needed answers and advice if you are struggling with a baby or child with special dietary needs.


  1. Ok, so I randomly came across your blog. Wow! This is my son! He's not quite so extreme, and we havne't tried much of this, but I am going to now. He started out exactly the same, except he wouldn't eat and lost a lot of weight when he came home. We had to supplement with similac b/c he wouldn't nurse enough, would cry/ pull off etc. Then when I at pizza (3 weeks old) he turned into a raspberry, his skin was rough, raised and red. It was awful. He was diagnosed with reflux, and a milk protein allergy. He's tons better on the medicine, but we still see a lot of symptoms. The acid breath, hiccups, diahrea, crying in sleep, crying when eating, not sleeping for longer than 20-30 min. You can see he wants to be a happy boy... Wow! I am so thankful I found your site. My little guy is 3 1/2 months old. I am going to try the elimination diet and see what happens. So thankful to have found your site.

  2. I came across your blog via your comment on another site. I decided I'd start reading from the very beginning. My daughter is 6 months old and exclusively breastfed. We discovered pretty early on that she is milk protein intolerant. Her symptoms were quite similar to your son's, and the only way I could get her to sleep was co-sleeping or in my arms for every nap. She would wake frequently and easily, and she would nurse almost all night long. I cut out all sources, and she seemed to get better. Occasionally, her symptoms would return, and I knew I hadn't consumed any dairy. Thanks to my corn chip phase, I figured out that corn was probably the culprit. The corn chips I had been eating non stop were organic, free from additives, etc. When I quit eating them, she got better. Long story short, I did the TED and discovered issues with tomatoes (and probably all citrus), pork (or possibly whatever is on the pork), tree nuts, and now probably eggs. I haven't trialed wheat/gluten yet but will when her latest symptoms disappear. I look forward to reading the rest of your adventures with food protein intolerance, and I hope to find some recipes that will work for my family.