If you have read my blog before, then you know the story of my Gluten Free Teen, who was diagnosed with Celiac Disease six years ago. Her story is here.
Entering from stage left, meet my twelve-year-old Middle Child. I am still in the middle of her story, in the “still trying to figure things out” phase, but chances are you have been (or maybe you currently are) in this phase as well.
I say Deja vu because that was the feeling I had last Friday night as I sat at the kitchen counter, the doctor on the other end of the phone saying “we found some results.” Trying to get over that familiar sinking feeling, that life is taking you down a different path than you planned, while scratching down notes on the notepad I snatched from the hotel room we stayed at on our last vacation. It was that too familiar whole-body sadness that swept over me as I realized my second child has autoimmune issues.
The short version of the story – we found out Friday night that our sweet Middle Child has not only an amoeba (which is thankfully treatable with antibiotics) but also IgA deficiency, an immunodeficiency. I am still doing research on this but it seems that IgA deficiency basically results in a weaker immune system thus explaining her reoccurring illnesses. Almost more discouraging is that according to the doctor last night, the IgA deficiency makes it more difficult to test for celiac disease.
I am not a doctor, a nurse, nutritionist or a psychologist – I just a Mom trying to keep my family healthy. As such, this is merely our anecdotal story and should not be taken as medical advice. I also repeat some of the medical advise that I have been given over the years, but this is merely an anecdotal story of that advise and what we have done with it. In no way should you consider any of this to be medical advise!
The long version of the story – like a lot stories, the Middle Child’s story starts years ago – signs that something was not right started as early as preschool. The Middle Child was a very sweet, robust, happy, easy going toddler, but she seemed to be sick all of the time with colds, strep throat, and bronchitis. The doctor at that point in time shrugged it off and said “well, she will have a stronger immune system when she grows up.”
Fast forward to around third grade when I really started to think there was something not quite right – it was hard to pin down, but she just seemed "spacy." (There is a great medical term for you!)
We would joke about how she “lives up in the stratosphere of the clouds,” and is always daydreaming. In some ways, we loved it because her creativity seemed to flow from the clouds and down to the earth in the form of her wonderful drawings and stories, and creative playtime. But schoolwork (even at that young age) was starting to prove challenging. She would reverse letters in her spelling words, had sloppy handwriting and seemed to take longer to learn some basic things. She was also still suffering from a lot of minor colds, sore throats etc.
I remember thinking then about getting her tested…but for what? Things did not seem right, but they were not extreme enough to justify some kind of intervention. By this point in time, my Gluten Free Teen was diagnosed with Celiac Disease. Of course we were all immediately tested for it and the Middle Child's test came back normal.
Fast forward to 5th grade (2 years ago) and we have just spent the night at the Emergency Room (it was Valentine’s Day) because the Middle Child had so much pain in her stomach that they thought it was her appendix. Four hours later and following an MRI, the diagnosis is extreme constipation.
The prescribed treatment was two months on Miralax. Once again the test for Celiac Disease was negative.
Not satisfied with the answer of Western Medicine to take Miralax and “eat an apple a day,” I took the Middle Child to a naturopath to see if we could find some more conclusive answers. The naturopath (at an out-of-pocket expense of $500) ran the ELISA screen which came back that the Middle Child is allergic to dairy, had a small reaction to gluten, and we ran a gene test which showed she has one of the Celiac genes.
The validity of the ELISA test is controversial, but I am also allergic to dairy, and dairy might contribute to constipation, so we took the Middle Child off dairy. Four years later, dairy seems to have been the answer to that problem, as she does not suffer from constipation anymore and she does well on limited amounts of dairy.
Fast forward again to January of 6th grade – stomach issues seem under control but we still have the reoccurring minor illnesses. She missed around 17 days of school in both 5th and 6th grades.
But more pressing at this point is the living-in-the-clouds issue – lots of day dreaming, doodling, terribly messy and disorganized.
At this point, I was still spending one to two hours a night “helping” her with her homework and organization. It was not that she was not smart – she actually is very bright. But it is more the disorganization and the minor mistakes. For instance, in math she understood the concepts but would make small addition errors that would result in the entire problem being wrong.
In my own heart, I knew I could not keep carrying her like I was. Me being her private tutor every night for one – two hours was starting to stress the entire family. I felt it was time to find a new school that was not as academically challenging. Dad on the other hand, felt that I was underestimating our Middle Child.
I guess to prove to everyone else that there really seemed to be something wrong her, I decided to back away and let the Middle Child stand on her own feet with her school work.
The result was abysmal – she literally brought home a string of grades in the 30th to 50th percentile. She also took the standardized test at school where she scored in the 99% on vocabulary and in the bottom 10% on math.
At that point the school recommended that we have her tested for learning disorders. I scheduled the testing and we looked around at some alternative schools, at the same time that little voice in the back of my head (aka God) is whispering “gluten.” “ Yes, gluten, take her off the gluten.”
When someone asks me what it is like when I eat gluten, I say it is like I am drunk. Literally I can’t focus, have a terrible time driving and the next day, looking back on my glutenized experience, it was like I was stoned out of my mind. In fact, I believe medical research is starting to back up my own anecdotal experience.
So I thought “why not” I can’t focus when I have gluten, so maybe that is the Middle Child's story as well.
So I take her off gluten – not really to the extent that my Gluten Free Teen is gluten free, but close. Everything we eat at home is already GF. I sent the Middle Child to school with a gluten free lunch but I let things go when it came to birthday parties etc. Remember she has consistently tested negative for celiac disease.
The results – a miraculous turn around in her “with-it-ness.” The Middle Child landed back on earth – still occasionally day dreams and still doodles a ton, but she is an A-B student, all of the spelling errors are gone, her handwriting has improved, she has an A in math (last year she had a C-).
There are definitely still some small issues – she loses a lot of things, her room is still a mess, but I can see a new child emerging out of the clouds.
Fast forward to two weeks ago - the Middle Child is in 7th grade, still at the academically challenging school and she is largely gluten free. I say largely because she still eats gluten when she goes out with her friends and she still eats some things that have a risk of cross-contamination that the Gluten Free Teen doesn’t eat.
There are definitely some organizational issues and the first two weeks of school she managed to lose a cooler, her volleyball shoes, her literature notebook twice, her history book three times, and her daily planner (which is supposed to keep her organized)! I started out the school year as her personal tutor, but she is growing her own wings and has finally become pretty independent in her schoolwork.
About a month ago, she misses a few days of school due to a bad cold, which ultimately lands her on antibiotics, and then the stomachaches began. Her stomach hurt so bad she was almost doubled over in pain which has resulted in frequent visits to the nurses office, and several days again of missed school. At the same time, she seems to not be growing. This is a girl who was born at 10.4 pounds, a whopping 24 inches long and now she is among the shortest girls in her class.
Even though she is largely gluten free, she still eats enough gluten that when the stomach aches started I thought, “well this is it – it is celiac.”
Back in the doctor’s office again (the same office where my Gluten Free Teen’s initial blood test were done), the same panel of blood tests is run, the same stool sample. But because of the day dreaming issue, the doctor is also recommending that we consider testing for inattentive ADHD.
Then the call last Friday night with the initial test results – turns out the Middle Child has an amoeba in her large intestine that is causing the stomach pain. She most likely picked it up in Mexico last spring. (Didn't expect that result!)
In addition to that, they determined she has an IgA Deficiency. I am still researching this, but from the internet it seems that IgA Deficiency is an immunodeficiency that basically results in a weaker immune system thus explaining her reoccurring illnesses. Almost more discouraging is that according to the doctor last night, the IgA deficiency makes it more difficult to test for celiac disease.
So this is where I sit now, the second child with autoimmune issues and wondering what to do next. In some ways, the Gluten Free Teen was easier. It took a couple of years to finally get her diagnosis but the diagnosis was definitive -– celiac confirmed with a biopsy of small intestine.
With the Middle Child, I have the fact that gluten seems to make her spacey and now the IgA deficiency. At the same time, the Celiac blood test was once again negative but according to the doctor the IgA deficiency makes the Celiac test inconclusive. I also believe there is a higher occurrence of people with IgA deficiency in the celiac community than in the population at large.
So I have spent the weekend pondering what do I do? I am sure her doctor will refer me to Children's Hospital and they will run more test but will she have to eat more gluten for these test to be conclusive?
Or do I just keep her off gluten? She has one autoimmune issue – so it’s not too hard of a stretch to expect another, but anyone on the GF diet knows it is not that easy. Sure at home it is no problem, but as she gets older she will be going out with friends, treats in the classroom, dates, college, her wedding? Do I really make her stay completely off gluten just because it seems to make her feel bad and spacey? Or is it ADHD after all?
Or if she does have Celiac and continues to eat a little gluten, are we risking refractory sprue, infertility at some point, anemia??? Or is it merely a gluten intolerance?
The deja vu – that complete body sadness. It is not the “oh this is a sad movie I am going to cry.” It is a whole body feeling that starts in the middle of my heart and weighs down my entire body, all the way to the bottom of my feet. I am not mourning the loss of normalness as I did for my Gluten Free Teen – I have experience to show myself that you can live gluten free and live a normal life. More challenging yes, but I will say even a better than normal life as my Gluten Free Teen is an A student, captain of her volleyball team, just made the band at Church as singer and guitar player, and a strong leader. But most importantly she has a better perspective on life and what it is all about that she gained from having this autoimmune disorder.
I just honestly prayed that my Middle Child would be spared and apparently she has not been. My parents will tell you that all kids have issues and I guess these are mine for now. All I can do is pray that God will lead us in the right direction with the Middle Child as he did with her older sister. I don’t believe that God causes illness (it is a fallen world that we live in) but I do believe he can bring us out of the darkness.
So this is where I stand right now – in a state of unknowing – not knowing exactly what my Middle Child has or what to do about it.