Complex Gastrointestinal Issues in Autism

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Complex gastrointestinal issues in autism require more complex action. When your child is still suffering despite dietary intervention, supplementation, and remedies mentioned on the Poop Page, it is time to find a qualified gastroenterologist.

Behavior is communication.  If your child with autism is having frequent meltdowns, they may be due to chronic gastrointestinal pain that your child cannot express any other way.

Parents of children who have any of the following ongoing issues should consider seeing a qualified, informed pediatric gastroenterologist:

  • Chronic diarrhea and/or constipation
  • Distended, bloated tummies, especially after the age of two
  • Stool that has an odd texture, color, and/or odor
  • Undigested food that is visible in the stool
  • Self-injurious behaviors or aggression towards others
  • Unexplained tantrums
  • Posturing behavior — applying pressure to the abdomen by leaning over an object such as the arm of sofa, therapy ball, mom’s knee, etc.
    • Some children posture in order to sleep at night
    • Some children posture when trying to have a bowel movement
  • Pain during the bowel movement process
  • Sleep issues — difficulty falling asleep, waking during the night
  • Seizures
  • Not making progress in therapeutic interventions (ABA, Floortime, speech, OT, etc.)
  • Weight loss or failure to grow/gain weight for more than six months
  • Recurring gut imbalance (yeast, bacteria, or parasites) that does not respond to treatment
  • Failure to toilet train past a reasonable age

"Behavior is communication. Frequent meltdowns may be due to chronic gastrointestinal pain that your child cannot express any other way."

Living with prolonged, untreated gastrointestinal issues is painful and impacts overall health. A consultation and complete evaluation with a qualified, informed pediatric gastroenterologist is recommended for children with ongoing GI-related issues.

Below are some tips for finding and working with a specialist:

  • Ask parents of local friends if they have a favorite gastrointestinal doctor that thinks outside of the box and is a good listener.
  • Talk to your local GI doctor about the recent studies linking autism and GI disorders.
    • Locate the articles listed at the bottom of this page by Dr. Buie and Dr. Krigsman (two doctors who are very familiar with treating complex gastrointestinal issues in autism).
    • Furthermore, know what you want from your gastroenterologist.  If you print and bring the articles to your appointment and know what to ask for, it can make the process easier.
  • It is important to note that treating ASD kids and their GI disease is a new area for most gastroenterologists. If you cannot get help for your child locally, you may need to seek help well outside of your local area in order to get an appropriate evaluation and treatment plan.

With appropriate evaluation, one or some combination of the following complex gastrointestinal issues, ranging from mild to severe, may be found in children with autism spectrum disorders.

  • Lymphoid nodular hyperplasia throughout the GI tract (swelling of lymph nodules)
  • Various types of inflammation in the esophagus (usually eosinophilic; sometimes Barrett’s Esophagus)
  • Gastroesophageal reflux disease (GERD)
  • Various types of inflammation in the stomach (sometimes ulcers)
  • Various types of inflammation in the small intestine (sometimes ulcers)
  • Inflammation in the large intestine ranging from mild colitis to ulcerative colitis
  • Sometimes inflammatory polyps are found in the GI tract

Typically, a complete assessment for a child with complex gastrointestinal issues should include the things listed below.  If not, you can ask about them.

  • General patient intake information
  • Physical examination
  • Parent’s written narrative of child’s gastrointestinal and developmental history
  • Review of all current medical issues — signs and symptoms you see in your child
  • Review of any previous testing done and results
  • Gastroenterologist may request further testing (KUB, blood, urine or stool) based on child’s issues and history
  • Discussion of colonoscopy, EGD (upper endoscopy), and pill cam study (tiny camera in a capsule that takes photos of the small intestine).  These may be recommended in order to biopsy and diagnose child’s particular issues
  • Appropriate procedures will be scheduled
  • Phone consultation afterwards to review biopsy results and map out detailed plan of treatment

Treatments for complex gastrointestinal issues in autism greatly depend on observations during the endoscopic procedures and the biopsy results. Common treatments for the conditions found in our children include:

  • Dietary intervention (gluten-free, dairy-free, and soy-free; Specific Carbohydrate Diet; elemental diet, etc.)
  • Digestive enzymes like Creon or Zenpep may be prescribed; or over-the-counter (Kirkman, Houston, Enzymedica, etc.) may be recommended
  • Probiotics
  • Anti-inflammatory medications (Pentasa, Sulfasalazine, etc.)
  • Immune suppressing or modulating medications (to address inflammation which is often autoimmune; Prednisolone, Entocort, Rhinocort, Nasonex, etc.)
  • An acid suppressing medication, such as Prevacid, to address gastroesophageal reflux disease (heartburn)

If your child is suffering from complex gastrointestinal issues, their gastroenterologist may need to perform an endoscopy to examine their digestive tract and obtain biopsies for lab testing. Below are answers to some frequently asked questions about endoscopic procedures.

How will my child handle these procedures?
Prepare your child using social stories about what will take place and discuss everyone’s expectations. Plan a special reward to be given after the procedures are over. 

How soon can my child eat after the procedures?
If no pill cam study is being done, a child may begin to eat and drink in recovery before leaving the out-patient facility. If a pill study is being done, the child may drink clear liquids sparingly during the first three hours after pill cam is activated. The child may then drink clear liquids liberally for the next five hours after that. (Pill cam recording device battery lasts eight hours.) Eating solid food may resume eight hours after pill cam is activated.

How soon after the procedures can I leave?
Once your child has woken up sufficiently from anesthesia and can hold down liquid, you can leave the out-patient facility. You can most likely travel home the next day, after doctor’s approval.

How long do the procedures last?
Usually procedures last one to two hours, depending on how many and which ones are being done.

What is involved in doing a pill cam study?
The pill cam is a tiny camera with a light inside of a capsule about the size of a 1,000 mg cod liver oil capsule. A child can swallow the pill cam or it can be placed in the first part of the small intestine (duodenum) during upper endoscopy. The pill cam takes two photos per second for eight hours and gives visual information about the entire small intestine. It does not have the ability to take biopsies. A recording device that records the photos for eight hours is belted at the child’s waist. The pill cam battery lasts eight hours, and then the study is complete. The pill cam will pass through the colon and leave the body in a bowel movement. You do not have to worry about retrieving it. It can go down the toilet or end up in a diaper.

How can I afford these procedures?
Check the TACA website for financial ideas/sources. 

My child can swallow a pill. Can we just do the pill cam procedure and skip the anesthesia and endoscopic procedures?
The pill cam only gives you a visual picture of the small intestine. It provides no information about the esophagus, stomach, or large intestine. By only doing the pill cam, you could miss many other medical issues. Also, the pill cam only gives us visual information. It cannot take biopsies. With the endoscope the gastroenterologist will be able to get into the first and last part of the small intestine to do biopsies (the duodenum during EGD and the ileum during colonoscopy). Usually, all three procedures are recommended.

Can we skip the procedures and just try some medication and see if it helps?
It is never appropriate to treat without confirming a diagnosis. It’s not done in any other area of medicine, unless the signs and symptoms guarantee the diagnosis. The same group of signs and symptoms can be the result of a variety of different conditions that will require very different treatment. For example, if a child is vomiting frequently, it could mean many things. The vomiting could be caused by a severe food sensitivity, severe reflux, stomach inflammation, small bowel inflammation, or some combination of these things. The endoscopic procedures with biopsies and the pill cam study are needed to arrive at the correct diagnosis. Good diagnosis leads to appropriate treatment. That’s the road to healthy, comfortable kids.

Should I be concerned about my child undergoing general anesthesia?
Your child will need to have general anesthesia in order to perform colonoscopy and upper endoscopy. Children with autism often have trouble processing medication. Anesthesia drugs are no different. Here is TACA’s article on anesthesia.  Talk to your doctor about any special issues your child may have when it comes to anesthesia. A pre-procedure consultation with the anesthesiologist is customary. This is the time to bring up your concerns and map out an appropriate plan for your child.

Who are the best doctors?
The best pediatric gastroenterologists that understand and treat the GI issues of children with autism are Dr. Arthur Krigsman and Dr. Timothy Buie.

  • Dr. Arthur Krigsman
    • Pediatric Gastroenterology of New York and Texas.
    • He has two practices: one in Austin, Texas and one in Far Rockaway, New York on Long Island. Pediatric Gastroenterology of New York and Texas.
    • Does not take insurance.
    • You may contact both practices by calling 718-327-2200.
  • Dr. Timothy Buie
    • He practices at Boston Children’s Hospital and can be reached at 617-355-6058.
    • Takes insurance, but he is not currently taking new patients.

There are long wait lists for Dr. Krigsman and Dr. Buie. The sooner you schedule, the sooner you will get the help your child needs!

Since most families will need to travel a significant distance to see Dr. Krigsman or Dr. Buie, most of the preliminary work can be done by phone, fax, e-mailing photos, etc. A physical exam can take place when family travels to do the endoscopic procedures.

Typically, a family flies into New York, Austin or Boston on a weekend. The child will stop eating food and take in only clear liquids starting Sunday night. A bowel prep to clean out the GI tract will be done on Monday night.  The initial consult takes places on Monday with the procedures and biopsies on Tuesday. Families can usually leave the Wednesday morning, after receiving doctor’s approval.

A Parent’s Story About Their Son
Part One and Part Two

Note: If a symptom carries fever, long periods of irregular bowel movements, which can lead to dehydration or other issues, extreme change in behavior, or loss of sleep or appetite for an extended period of time, please contact your doctor immediately.

*All content of this article was created for informational purposes only and is not intended to be a substitute for professional advice, diagnosis, or treatment. Always seek the advice of your physician, therapist, or other qualified health provider with any questions or concerns you may have.

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