Autism, Allergies and Gastrointestinal Disorders: A Return from the Brink


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April 1st ushers in Autism Awareness Month and there is an excellent conference that kicks off in Dartmouth, Massachusetts to start the month. “When the Belly is the Beast: How Intestinal Health Impacts Brain and Behavior,” is a symposium dedicated to exploring nutritional and biomedical approaches to treating autism. In addition to speakers on gastrointestinal health, experts will address legal resources for parents of children with autism and how to access services in the community. The event is sponsored by the Gottschall Autism Center, named after Elaine Gottschall, famed research and cell biologist who wrote "Breaking the Vicious Cycle: Intestinal Health through Diet."

Gottschall pioneered the Specific Carbohydrate Diet (SCD), a grain, lactose and sugar-free diet designed to eliminate hard-to-digest complex carbohydrates and prevent harmful microbes in the intestinal tract from causing damage. Many children on the autism spectrum have underlying gastrointestinal issues that manifest as bloating, pain and diarrhea, as well as poor sleep, tantrums, repetitive behavior and crying at night. Because of their communication issues, children often express their physical pain in behaviors.

My son with autism suffered terribly for years because of his undiagnosed gastrointestinal problems. He was twice hospitalized for anxiety so severe, it manifested as intrusive thoughts that were long speculated to be psychosis. Ominous warnings of major mental illness were forecast and he was placed on adult levels of anti-depressants and anti-anxiety medications. 

At the age of thirteen, his problems culminated in a diagnosis of Crohn’s Disease, an auto-immune disorder in which the gut is utterly diseased and nutrients cannot be absorbed by the body. Chronic in nature and life threatening, the shock of his new diagnosis left me beside myself with fear.

Hospitalized for six weeks during which his weight fell to sixty four pounds, he finally went home with a stomach tube surgically implanted in his belly through which formula was pumped, his only source of nutrition. I had been terribly wary of it, because a naturopath had speculated he was allergic to milk, but the doctors dismissed my concern and refused to consider diet as any component of the problem or solution. 

Instead, they proffered Remicade, a chemotherapy agent that shuts down the immune system and was to be administered in two-hour infusions at the hospital twice a month for the rest of his life. 

I felt physically ill at this prospect and quickly researched the drug, which turns out to carry a black box warning for causing lymphoma in adolescents, my son’s age group. A bevy of other harrowing side-effects including onset of rheumatoid arthritis convinced me that I would not consent to this treatment plan. Not coincidentally, it is also one of the top four profit grossing drugs in the entire world. It would cost two thousand dollars per infusion with the add-on of it having to be rendered in a clinical setting.

Defying the doctors was a dangerous course, as they wanted me to be declared an unfit mother. Through a series of miraculous events that I liken to finding Harriet Tubman’s underground railroad to freedom, I was led to a doctor in a neighboring state who specialized in autism, environmental medicine and immunology. 

The first thing he did was give my son a food allergy test. It turns out that my child was allergic to almost everything that constituted his diet, including the milk being pumped into his system eighteen hours a day. And those killer doses of psychiatric drugs were further upsetting his stomach. 

The doctor told me to slowly wean my son off the psychiatric drugs, supplanting them with oxytocin and nutritional doses of Lithium. We began the SCD diet and my son detoxed for a solid month, creating quite an ordeal. But after that, he became calmer and clearer and started to actually enjoy eating, as opposed to dreading it. With two ongoing prescriptions for his gut, low dose naltrexone to regulate his immune system, vitamins, supplements and diet, my son has gained thirty five pounds and is the healthiest he has ever been in his entire life. The Crohn’s disease has been in remission for over a year. 

Sometimes, diet is disparaged as an expensive fad, but for us, it’s been a Godsend. My son’s SCD diet was very daunting initially and represented a paradigm shift in the way we approached food. But now, it’s hard to believe we ever lived any other way. 

Fortunately, there is a great deal of online support and information available about the SCD diet and if anyone wants help, I would be happy to share what I have discovered in the way of websites, recipes and food sources. 

I wish my son had that food allergy test years ago as it would have spared him so much pain and grief. 

Consider having your child with autism tested for food allergies. You may discover no allergies to support introducing a casein-free, gluten-free diet or other food restrictions. Then you have the relief of a rule-out. But if your child is found to have allergies, adjusting his or her diet can vastly improve the quality of life — and may even save it.

12 Responses to Autism, Allergies and Gastrointestinal Disorders: A Return from the Brink

  1. I am so glad this terrifying story has a happy ending. It shows that we have to stand up for ourselves–and our children–when dealing with the medical profession. It seems that doctors, just like Susan Moffitt’s sons doctors, will more often recommend more toxic pharmaceuticals than less toxic, more effective alternatives.

    While writing my recently published book, “Honest Medicine: Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases,” I heard lots of similar stories by patients–and parents of patients. Over and over, they told of their experiences trying to get the non-toxic treatments I write about in my book, one of which is Low Dose Naltrexone (LDN).

    You may read about my book–an Amazon.com best seller–on Amazon.com at http://www.amazon.com/dp/product/0982969007/

    Here is a study of LDN for Crohn’s disease: http://api.ning.com/files/8gos8*N7Z7vvpKWIW*mQnFAbzT7tktUr-Rz0p40C-SrjURj0O4WkkOW2TqwCyx3gj4v-BdMqQHUEVohnIgYoW8B0LF4P7yJS/Crohns2011.pdf Hope you find it interesting.

    Thanks for this posting, Ms. Moffitt. I found it very informative and inspiring.

    Julia Schopick
    http://www.HonestMedicine.com

  2. Susan says:

    Thank you for your comments. LDN is remarkable. And the thing is, you also have to factor in the difference between rubbing in a cream each night as opposed to on- going trips to the hospital and painful infusions. The path of least anxiety enhances wellness.

    I’ll look up your book…Susan Moffitt

  3. Thanks for your article. Food allergies (whether IgE or other isotype) may well be important to some cases of autism but a recent paper from Tim Buie and colleagues from Harvard might also suggest that lactose intolerance might also be coincidental with some cases of autism:
    Intestinal disaccharidase activity in patients with autism: Effect of age, gender, and intestinal inflammation (Autism, 2011)
    http://aut.sagepub.com/content/early/2011/03/07/1362361310369142.abstract

  4. Susan says:

    Thanks for writing. I wasn’t suggesting that milk allergies are endemic to autism, only that my son is allergic to milk.

  5. Susan:

    In my earlier comment, I neglected to mention that Jaquelyn McCandless, MD pioneered the use of LDN for autism. Here is a fascinating video of Dr. McCandless on the topic: http://www.youtube.com/watch?v=30EGZzgKID4.

    She also wrote a book,”Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder”: http://www.amazon.com/Children-Starving-Brains-Treatment-Spectrum/dp/1883647134/ref=sr_1_1?ie=UTF8&qid=1301422818&sr=8-1.

    Thanks so much for your posting. And thanks, too, for looking up my book,”HONEST MEDICINE.” I can’t wait to hear what you think of it.

    Julia Schopick
    http://www.HonestMedicine.com

  6. Susan says:

    Julie, It’s funny that you should invoke her, because she was part of the chain of events in the story I told. I looked her up online and emailed her, hoping that she might answer eventually, and she responded with an hour, recommending the doctor that saved the day. I am profoundly indebted to her and moved by her rapid response to a total stranger. She’s one of my heroes.

  7. SGM says:

    Oh my goodness…that is an amazing story. I hope your son is continuing to do well now :) It is so hard as parents to know what to do when one doctor tells you one thing and test tells you another and research tells even another! Our son had severe eczema and seemed to be allergic to every kind of food. We just knew it could not be possible and after several tests led us to become even more confused, we kept him away from severe allergens that we knew of and started him on a children’s probiotic that he loves! It’s a chewable and as this began to clear him up so much we also added in more foods that he was intolerant to. He can now eat lots of foods and his skin looks great! It was a scary time for us when he was only two and steroid dependent – but thankfully once we took a look at his gut, we have had a miracle! It’s amazing…thank you for sharing your story!! Glad he is better :) wow.

  8. Susan says:

    Glad your son is better too. Speaking of guts, I believe we as parents have to trust our gut instincts about our kids, even in the face of overwhelming opposition. In this culture of MDieties backed by the power of the courts and the media, it’s no easy path.

    Best Wishes,
    Susan Moffitt

  9. Noreen says:

    Parents have been giving us the best advice. Doctors are truly clueless. I believe the stomach (and liver/enzymes) problems are coming from the things growing in improperly stored vaccines, shot up directly into the little ones system. Allergies and asthma are out of control. DPT has been known to cause neurological problems and these shots are “trigger” overexcitability of the immune system (which is also in the brain). Brain overgrowth, is it natural OR are the vaccines causing something to be turned on in the brain and causing the brain to overgrow!!? Researchers need to get their real studies together but most importantly SHARE the outcome (not keep it a secret). We felt the Brain Inflammation and Over growth was directly a result of the Vaccine Schedule BUT no one cares or seems to want to ADMIT the TRUTH or at Minimum TAKE some immediate action to prevent this from happening to our future offspring. Those parents who are doing things (not shoting up the brain with mercury and chemicals while developing) are finding out the TRUTH. It DOES make a difference and that yes, most of these problems where “man made” thanks to vaccine reactions in the brain, central nervous system and immune system. NOW, what do about the BILLIONS of dollars being spent CREATING MORE SHOTS to inject into your little baby! for bottom line purposes! WHAT TO DO, What to do! Thank you Barbara Loe Fisher, I can always count on a Woman for being honest. We have to protect our babies. Males feel that population control is important. Guess what, Males have the majority of Autism. Do you stand by while Autism is the Number 1 disability amount (GET THE AGE) birth to three (what happens during that time?) hmmm

  10. Susan says:

    It feels like the Armeggedon of medicine to me. The vaccine debate is so polarized and the money interests so entrenched, getting to the truth is lost as a goal. Demonizing and even prosecuting those who don’t submit to the ever growing vaccine schedule is coin of the realm.

    I abstained from vaccines but unknowingly got a thermiserol laden shot for Rh- blood while pregnant. Then petosin and epidurals and all the other L & D toxins…ugh

  11. HD says:

    Susan,
    My story is almost exactly the same. My daughter is on the spectrum, and developed severe ulcerative colitis at age 13. Lost 30 lbs. Bled so much, had to have multiple transfusions. Awful, awful, awful. Can you email me and let me know which dr you found?

  12. Ed Hogenson says:

    Digestive problems often cause poor absorption of the nutrients our bodies need to maintain good health. The resulting nutritional deficiencies contribute to an increased risk of chronic disease (for more information, read our article on health and vitamins.) Resolving GI problems does not just improve your immediate quality of life by eliminating unpleasant symptoms — it also promotes long-term health.;….”

    See the most interesting piece of writing at our blog site
    http://www.healthmedicine101.comzd

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