Eating Gluten Was Making a Mess of My Daughter

My firstborn daughter was a perfect, quiet baby for fourteen days. 

On day 15, she started to cry - often uncontrollably. It lasted for months. The pediatrician called it reflux, and sent us out the door with  Mylanta. Eventually, a specialist put her on a medication - one that is no longer FDA approved - and the screaming stopped. Temporarily. 

Medical mania began for my daughter. 

For a little while, she was a happy baby. Many of her milestones were typical - she crawled and walked on cue. Some were even exceptional - she was talking in full sentences at 18 months. 

But when she turned 2, the "Linus-routine" (thumb-sucking with a blanket over the shoulder) grew excessive, exacerbated by clingy behavior and a tendency to lie around at pre-school when others were actively engaged. This time the diagnosis was allergies. Antihistamines entered the picture. 

While the allergy meds helped with the episodic lethargy, and the chronically stuffy nose, it did not change a general sense that this child was clingier than others, hesitant, shy in a way that I can only describe as atypical. As only a parent can really understand, there was always something "off."  Overly sensitive, temperamental, she was unable to regulate her moods and had extremely poor follow-through - despite a strong family environment, actively engaged grandparents, and a wonderfully playful father. 

At the age of 3, her pre-school teacher raised concerns about manual dexterity — not using scissors as well as she might. Age 4, she made her first of many switches to a new school that might be better suited to her disposition. She shied away from positive feedback, resisted celebrating her successes, and had virtually no threshold for frustration. Her meltdowns were legendary. 

Age 5, we start meeting with educational consultants, trying to decide whether to give her an extra year to mature. That's the year she started punishing herself so severely we never had a chance:  "I don't deserve to be in this family," she would cry at the slightest mistake. When she began to respond at age 5, "I don't deserve to live," I reached a breaking point. Enter psycho-educational testing.

The testing results brought information and more befuddlement. At age 6 she changed schools yet again, and began "Vision Therapy."  Homework started. The school struggle began. This brilliant child who had the vocabulary of a typical 5th grader by age 5, could take two hours of screaming and fighting to get 5 minutes of homework completed. Simple ADHD, even with Anxiety, could not account for the intensity of the drama at home.

At this point, the teacher's approach was critical. Second grade, the teacher 'got her,' and all was well. On the one hand, she thought everyone was her friend. Unfortunately, this is when the playground bullying began. A defeated helplessness set in, low-self-esteem locked itself into her psyche. Enter social skills programs.

Third grade, it was too much. Both social and academic realms were severely impacted. She broke her wrist - twice. Someone suggested a nutritionist, but things were going down hill too fast. To be honest, I was skeptical -  we had had no success with the "Feingold Diet," and the effort had been a nightmare. 

More educational testing. It was time to try medication. We tried. And tried. And tried. It felt like our precious child was a pharmacological experiment.  There were unraveled socks, and facial tics. There were false implications of bipolar and Asperger's syndrome, a type of autism. I began to wonder if she would ever become an independent adult.

Nothing made a difference for more than a few days. Enter Occupational Therapy.

So after months of trials, and more assessments, and no improvement in sight, the psychologist presented to me a long list of 'diagnoses.' With tears in my eyes I asked, "Where do I start?"  

She said, "You start with the metabolic."

Off we are sent to Kelly Dorfman, a nutritionist who specializes in working with kids with learning disabilities and special needs. She had a reputation for working with complex children. With all the years of doctors and therapists, this was, by far, the best $150 we ever spent!

I made an appointment, wrote her history, sent it to Kelly. Ten minutes into our telephone appointment she said, "Sounds like gluten."  

"What's gluten?" I asked. She told me. I cried. 

My daughter was about to turn 10 and this nutritionist was suggesting I remove all the food from her diet which (we thought) brought her comfort: pasta, bread, pizza, etc. I looked up gluten-free food. In those days, about the only guarantee of a 'processed' food she could eat was Frito's. I cried some more.

Kelly explained that gluten sensitivity is not uncommon in Jews of Eastern European descent. She explained the difference between Celiac and gluten intolerance and talked to me about the "gold standard" of testing - a biopsy (which is still not 100% accurate). There was a blood screen, but it was inconclusive. She suggested I just try to take her off of gluten for a few weeks to see what happened. 

Meanwhile, our daughter had an episode at camp that suggested she might have irritable bowel syndrome. It was the first gastro-intestinal "symptom" she had exhibited since the reflux of her infancy. Back to her pediatric gastroenterologist. I told him Kelly suggested we take her off of gluten, and he waved it off, saying, "We're not going to try that."

But we did. And it was incredible. 

About this time we had been having our daughter's testing re-done - again - this time by a neuro-psychologist. I had started filling out the parents' forms over the summer, but never finished them. I went to complete them just before the appointment, when our daughter had been off of gluten for about 2 weeks. My answers were different. I called the doctor to ask what to do. He told me to finish the forms, and he would score them separately.

So I did.

In two weeks, she had gone from "off the charts" emotionally to "within the range of normal."  It was unbelievable. And it was true.

Within four weeks, we were negotiating with the psychiatrist, and within six weeks she was off all medications (except those for allergies.) 

For the next several years we started an intense nutritional supplement routine. We 'chelated' with vitamin C, restored the natural flora of her gut with probiotics, and lubricated her brain with fish oil. She got bi-weekly methylated B-12 injections, which helped enormously with mood. We even used massive doses of fish oil to treat her anxiety. 

Our daughter was a new person. 

In the process, my husband had also stopped eating gluten, and everything started shifting for him, as well. For him, it was as if a fog - one he had lived under all his life - just lifted.

I wanted to shout it from the rooftops, scream it to anyone who would listen - she feels better. She is better. Even now, six years later, I cannot retell this tale without tears in my eyes. 

Five weeks after going gluten free, she experienced what we have coined "The Matzah Ball Incident."  It was the Jewish New Year, and she was feeling so deprived. How much harm could it be, I reasoned, to let the poor kid have a couple of matzah balls in her chicken soup?

She was sick - I mean sick - for six days. Diarrhea, stomach cramps adding to emotional distress, mood imbalance -basically, she could barely cope with life. At the end of that time, she sat next to me on our red sofa, and sobbed, "I hate to admit it, but I feel better when I don't eat it."

And that was it. Ten years old. The strongest willpower of any person I've ever known. She may not be able to keep a neat desk, or plan a birthday party for a friend, but this kid can advocate for herself like nobody's business. She has discovered gluten in things even we, her hyper-vigilant parents, had not thought to ask (like hamburgers).

There is so much more to the story, of course. The next several years featured a whole new host of more 'natural' medical professionals - most with MDs, and a more progressive approach to treatment. Initially, I needed someone to actually prescribe the B-12 injections. And, to be honest, I felt like someone local, with a medical degree, needed to understand what was going on with her and monitor her condition. I'm still searching for that someone.

The truth is, despite dozens of specialists over the years, the only people who truly understand the big picture of this complicated person is her parents. This kid's got some kind of an auto-immune situation going on, and whether its Celiac, or not, she is chemically sensitive, and that's the challenge she'll have to deal with the rest of her life. There isn't a doctor out there who really gets her completely - though her psychiatrist has been unbelievably supportive throughout the journey. I figure it will make her an unusually empathetic adult.

So the appointments continue, and we try hard to fit them in amidst the school and sports of her busy teen-age life. But here's the thing that I never lose sight of: She has a busy teen-age life. Before gluten, it never looked like that was a possibility. 

Now, I take no milestones for granted. I appreciate every transition, and embrace every new development with gratitude.

"What I Know Now":

1. Attentive parents know their kids better than anyone. Yes, even better than doctors. 
2. Parents need to trust their instincts: be willing to say no to the medical experts and the naysayers. Do not give up!
3. Everyone has a limit to the toxic load they can bear, and these days people are hitting that limit much more quickly than in the past.
4. Stress and anxiety will exacerbate any condition, and should not be underestimated. Sometimes, getting Anxiety under control enables other improvements to take hold. 
5. Anecdotal evidence is NOT irrelevant.
6. Before you start putting chemicals into the body, pay attention to what is already going in (like, food!)
7. Treating symptoms is not as effective as getting to the source of a problem. As we grow, the symptoms to an underlying problem [may] change, but that does not mean the problem has gone away.
8. Kids are the most resilient beings on the planet, and they can be highly motivated when they are included in their health care decisions.
9. Family support can make all the difference - but you have to be willing to talk about what is going on without shame or embarrassment. 

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This blog also appears as part of my regular column on ShareWiK.com.

Comments

[Cody]

The people who around the situation the most are the ones that more times than are the ones that are correct. Yes doctors are experts, but they don't see everyone and their symptoms before they come in. The parents or the children do and they are the ones that should be allowed to have input in the situation as well.