The Power of Going Gluten-Free
Submitted by Elaine Taylor-Klaus
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. Nursing, eating, sleeping, playing…doing her job as laid out for her in the baby handbook. 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 (and this was no cameo performance).
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. 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. Plus, the pediatric orthopedic specialist (lest DFACS come to check on two broken wrists), said her bones were fine.
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 questions raised about bipolar and Asperger’s syndrome. 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 (thankfully, over the phone) with kids with learning disabilities and special needs. She had a reputation for working with complex children. I had actually had an appointment with her about 1 ½ years prior, but had canceled it when we started the medication approach.
With all the years of doctors and therapists, this was, by far, the best $150 we ever spent!
I made an appointment, wrote my daughter’s 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 (that didn’t taste like cardboard) 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. 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 psycho-educational 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. And he did. And wow! what a difference.
In two weeks, she had gone from “off the charts” emotionally to “within the range of normal.” It was unbelievable. It felt like a miracle.
Within four weeks, we were negotiating with the psychiatrist, and within six weeks she was off all medications (except those for allergies.)
We initiated an intense nutritional supplement routine, much of which we continue to this day. 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. He had a new lease on life.
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.
We returned to the pediatric gastro who didn’t exactly embrace our ‘anecdotal’ evidence. He suggested we put her back on gluten for five weeks so we could do a biopsy to confirm Celiac Disease. All I could think was, “are you kidding?” We respectfully declined.
Five weeks after going gluten free, she had already 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 more to the story, of course. I wish I could tell you that discovering the gluten issue was a ‘happy ending’ to our family tale. The truth is, it was more like a Happy Middle.
Removing gluten was not a panacea for all of her challenges. By reducing her “toxic load,” it enabled us to begin to address some of her other health challenges with less interference. It was like removing a gigantic irritant, a piece of sand under a contact lens.
Some of the changes were downright shocking. After years of rapidly deteriorating eyesight, my daughter’s glasses’ prescription suddenly stopped changing. Similarly, 30 years of severe gum disease virtually healed itself over a six month period for my husband –the periodontist he had been seeing since he was a teenage was amazed.
The impact of starting life over at 10 – and 40 for her father – was miraculous, and incredibly challenging. Relationships had to be re-negotiated, patterns of behavior were re-established, depression over years lost was cautiously managed.
The last six years have featured a whole new host of medical professionals – some ‘natural,’ others with MDs, and all, whenever possible, with a more progressive approach to treatment.
Initially, we needed someone to actually prescribe the B-12 injections: enter Developmental Pediatrician & natural MDs. We’ve needed immunotherapy and sinus surgery: enter Allergists & ENTs.
A big part of my job has been navigating the slippery relationship between the traditional and the alternative, trying to make the best decisions possible, with often very little ‘solid’ information.
As parents, we’re called upon to make complicated medical decisions without any training or expertise. It’s maddening. It’s frightening. And we shouldn’t have to do it alone. To be honest, I have searched for someone local, with a medical degree, to monitor and help me understand what is going on with my daughter – but to no avail.
Once we discovered the power of gluten, I became a health advocate and parent educator, establishing a speaker series to provide parents with excellent, current information on a wide range of issues relevant to special needs kids. When things felt stable enough at home, I went back to school and became a personal coach.
I believe passionately that parents of special needs kids deserve a lot of support. As a coach, I guide parents to identify their values, use them as a lens for decision-making, and trust their instincts. Those are the only things in this parenting-game about which they can become certain.
The truth is, despite dozens of specialists over the years, the only people who truly understand the big picture of my complicated daughter is – we, her parents.
Our kid’s got some kind of an auto-immune situation, 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 and psychologist have 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.
As a parent, when you hear multiple diagnoses, and you have a library of books about every psychiatric condition and learning disability – as well as spirited and sensitive children – you wonder whether your child will ever become an independent adult.
Now, I take no milestones for granted. I appreciate every transition, and embrace every new development with gratitude.
What I Know ™:
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.
10. No one should have to go it alone – there are now many resources and people to help. If possible, try to find one person – a coach, or friend – who will not give you advice, but will help you figure out what YOU think is best.
If you do believe that there is something going on with your child which is not readily explained by traditional medical examinations, here are some tips and guidelines for exploring whether foods (gluten or otherwise) or nutrition might be an underlying concern.
The information below is What I Know ™, gleaned from years as a parent advocate and coach. The following is not medical advice:
• Check in with your doctor and let her know that you’d like to look at whether unidentified food sensitivities might be aggravating your system (note: avoid using the word allergy)
• Ask to be tested for Celiac Disease BEFORE you remove gluten from the diet
• Ask your doctor if they are able to order an IGG blood allergy test. This does not measure the histamine reaction that traditional allergists are looking for, but how the blood reacts to a substance over time. Allergists still tend to discredit this test, though ENTs are using it more frequently.
• Remember that you have to be an advocate in this matter. Many physicians will make you feel like you are crazy, and you are not. YOU are looking at the big picture, while most medical folks tend to come from a more narrow perspective.
• Do some reading about your symptoms to determine what major food allergen you think might be the culprit.
• A great resource, besides the internet, is Doris Rapp, M.D.’s
“Is This Your Child? Discovering and Treating Unrecognized Allergies in Children and Adults.” It is a thorough reference guide, Best Seller, 1991.
• If you plan to remove a food from your diet, try to do it for a solid 4-5 weeks. Two weeks may not be long enough.
• Keep a food journal!
• The top 8 food allergens are: milk, wheat, soy, egg, tree nut, peanut, fish and shellfish. As of this year these are required by law to be listed on food labels in the U.S.
• Gluten is not listed directly on many labels because it is not a specific food. Gluten is the protein in wheat, barley, rye (and some think Oats). It is actually hidden in MANY foods. Soy sauce, for example, is generally made from wheat. Watch out for words like “food starch” and “flavorings,” because that tells you nothing about what is in the food. Read about gluten if you plan to try to eliminate it – there are fabulous resources on line these days.
• Removing foods from your diet is much easier these days than you might think.
• Google “Gluten Free Restaurants” in your City (or Dairy Free, Peanut Free, etc), and you’ll find restaurants that cater to your needs.
• A few Gluten Free specific tips: Tortilla chips are almost always GF, and Amy’s GF Pizza and Mac ‘n Cheese are good and easy. At your local Health Food store you can usually get crackers, pretzels, frozen breads, etc. The mainstream groceries now carry a lot, too, but be cautious because the staff is not generally knowledgeable and will often put glutenous foods on the GF shelf. Chex Cereal is now GF, and Betty Crocker now has a GF line, as well.
• I could go on for days with all of our favorites, but I’ll just mention two brands of mixes that I find great. You can’t go wrong with ANYTHING by Breads from Anna or 1-2-3 Gluten Free (the best brownies EVER).
• For anyone in the Atlanta area, Return to Eden – a healthy grocery – has the best GF program I’ve ever seen, with a dedicated staff member for GF issues. Atlantis in Dunwoody does a good job, too.
This article first appeared on ShareWIK.com, where the author, Elaine Taylor-Klaus, is a regular columnist. Other writings by and information about Elaine can be found at http://tinyurl.com/ElaineOnShareWIK and at http://www.touchstonecoaching.com/manage-health/