I am writing about my 5 y/o daughter. If you are willing to bear with me here is the long history:
She bad reflux as a baby and into toddlerhood. She didn't tolerate formula at all (gas on regular and projectile vomiting on soy). We exclusively breastfed for 6 months and nursed until 15 months. and she would still spit up like a fountain - it was guaranteed to happen all day and night. The only thing that made any measurable difference was for me to never eat any dairy and of course we never gave her any. She took Zantac for those first few months and I drank gallons of camomile tea to help calm her tummy. She was extremely colicy/fussy until she was about 3 months old and then it was kind of off and on. During all this her Pedi would call her a "happy spitter" because she was never failure to thrive. In fact, she was the opposite - quite a chunker and growing really well. I figured she ate because her tummy hurt and wound up with so much milk that she just spit a lot up. She always got to that great hind milk that is so rich. My thinking is that she had Milk Protein Intolerance, at a minimum, as a baby. When she weaned we went to Goats milk on the advice our pediatrician. She had a bunch of sinus infections and antibiotics when she was younger than 18 months.
By age 2 or so we started letting her have small amounts of lactose free milk and we thought she was doing fine. She was hitting all of her milestones except in speech. She didn't speak more than a handful of words until she was close to 2 1/2. By age three we thought she must have ADHD because she was a ping pong ball. She couldn't sit still to save her life. We were referred to an Occupational Therapist at age 3 and it was determined that she has mild/moderate Sensory Integration Disorder. So, that started 2 years of OT therapy that was actually quite helpful with lots of her behavior and speech issues. She does not have Autism.
By her well child check up at age 4 she was having a lot of nasal allergy type symptoms and she had dropped from being in the 75th or so percentile of height in her first 2 years to now at the 25th percentile. There had been a slow drift down in her percentiles starting at around age 2 1/2 to 3. We noticed she always had a round belly, she had always had foul smelling, frequent loose stools, she had gas all the time, and still had wet burps. I can't remember a day in her life when she was actually constipated or even had a firm stool.
This started a round of visits to the allergist to rule out an allergy (my mother has multiple allergies including wheat and other common foods, as well as severe environmental allergies). Nothing was conclusive but we started her on an allergy med to cover her frequent sinus infections and runny nose. He also suggested we remove lactose completely from her diet again based on her history as an infant. Her skin testing showed negative for wheat, soy and milk a year ago.
At about age 4 3/4 she started to complain of her belly hurting, she began to have even more frequent bowel movements and her pediatrician was finally concerned enough about her height to send us on a GI consult. The GI doc immediately thought Celiac and sent her for lab. It all was normal except that she has low IGA, her IGG Anti Gliadin antibodies were slight elevated and she has the DQ8 gene ( which I also have - all other Celiac lab for me was negative as well). He still recommended a small bowel biopsy and biopsies for sugar metabolism. Nothing came back with any significance. By this time we have become completely frustrated and are beginning to question our decisions to continue to pursue this. The GI doc says he thinks her gut stuff and her height are unrelated and recommends an Endocrinology consult. She is still 25th percentile on height and about 60th percentile on weight. Her bone age scan showed her growth is about 1.5 - 2 years behind her actual age.
We had the endocrine consult and she's holding steady at the 25th percentile for the last year . She says the bone age scan is good news because it means she still has more room to grow and it could just take her longer to get all of her growth in. All other endocrinology labs are normal. We have a height recheck in 3 months and will then see if there is anything worth continue to pursue. We don't care if she is going to be short. We just want to make sure that isis what her body is supposed to do and not that it is an underlying medical issue going on. (There are no truly short people in our family. Everyone is either average or tall. I'm 5'8" and dad is 6'.) The allergist wants nothing to do with the whole issue anymore. The GI doc all but said he thinks there is nothing he can see to treat. He dismisses Enterolab, bacterial overgrowth, or leaky gut issues and says he can't recommend a gluten free diet based on her negative biopsy.
We have now had her casein free for the last six weeks. I've not seen any major changes in her bowels. She still has pale stools (light tan/yellowish) that range from soft formed to completely loose, a moderate to large amount each time. Her belly still hurts right before and during a BM but she doesn't complain at other times. She still "toots" frequently. It is actually rare for her to complain about any kind of pain. She'll go a few days and be fine and then have a few days where she's in the bathroom more often. The only real obvious thing I've seen is that when she gets whole wheat things she seems to have more trouble.
In my mind I've got these choices:
1. Leave things as they are. She is not in so much discomfort that she is unable to do the things she likes to do. Certainly a tempting option and one I would do except that I have a feeling there really is something going on here.
2. Try probiotics to see if it is a bacterial imbalance. A reasonable less invasive option, I think.
3. Go through enterolab to maybe find out if she is gluten intolerant/casein intolerant. This option sounds nice on the surface because it is a more concrete answer, but it seems that Enterolab diagnosis a lot of people as gluten/casein intolerant and they seem to think everybody is.
4. Just do a gluten challenge, but for how long and to what extent and what happens when she asks when she is older why she has to follow this restrictive diet. Not to mention the challenges that are bound to come from every other corner of our lives!
5. Continue to pursue a traditional medicine reason - I'm losing more and more optimism from this option. We've had ZERO help from regular MD's. If it isn't in their medical textbook they dismiss us out of hand. I am feeling like a crazy mother chasing a shadow.
So, after this hugely long post, does anyone have any insight? Thanks for reading this far, if you have.