Thank you so much for taking the time to share your experiences. Your story will definitely help other readers to understand that their or their loved one’s symptoms may be related to gluten (and/or casein) consumption. Celiac Disease can present with such a variation in symptoms. I often feel that anyone who is ill should be tested. Ideally, everyone should be screened, even those who don’t have symptoms since many have silent celiac disease with no or very vague symptoms.

Of interest, there is a series of 2 videos that I saw on youtube that outline another family’s experiences as well. The child began experiencing neurological symptoms as a baby and was not diagnosed until he was a preschooler. It was quite sad because his mom had celiac disease and her physician discouraged her from having the children screened and he didn’t link the neurological symptoms to celiac disease. A younger Dr. Peter Green became involved and helped with the diagnosis. You have likely already viewed these videos.

Part 1: Video (case study) about the neurological presentation of Celiac Disease in a baby. http://www.youtube.com/watch?v=Am6AUFVpKUk&NR=1

Part 2: Video (case study) about the neurological presentation of Celiac Disease in the same child as he became a toddler and preschooler. http://www.youtube.com/watch?v=TL_O-uInv3U&feature=related

Thank you so much for your kind words, there is so much work to be done. 97% of those with Celiac Disease (and gluten intolerance) remain undiagnosed and are still suffering unnecessarily.

Best Regards,
Shelly Stuart

Cara

I have a few suggestions you may want to consider:

1. Gluten sensitivity/Celiac Disease can increase the permeability of the bowel possibly leading to other food allergies or sensitivities. Consider talking to your doctor about a consult with an allergist to check for other food allergies that may affect behavior or cause neurological symptoms. Naturalpathic doctors have blood tests for allergies/sensitivities as well. Some try an elimination diet to identify allergies, but I would recommend guidance from a Registered Dietitian to ensure all daily nutrient requirements are fulfilled. Also keep your MD and specialists informed about any dietary changes.

Ask your doctor about removing dairy from her diet since some (limited) research has associated it with possible cognitive effects in some individuals (please discuss with your MD first and consult a Registered Dietitian about alternative foods). See links in my neurology post and psychological post for more information on this.

2. Malabsorption of nutrients may lead to nutrient deficiencies. This can occur while on a gluten-free diet since many gluten-free foods are not fortified with nutrients, children can have limited eating preferences at times, and the intestinal villi may not be completely healed. Consider asking your MD and specialists about testing for nutrient deficiencies and about a good multivitamin since some deficiencies might affect behavior and neurological health. A consult with a Registered Dietitian (RT) can provide guidance about foods that are rich in your child’s deficiencies and advise appropriate dosages of vitamins. Also, review all foods to ensure that she isn’t accidentally ingesting gluten since this could delay intestinal healing.

3. Consider testing for autism since this may open the door to other resources available in your community. As well, psychiatric or other counseling may help your child to re-direct her thought patterns in a positive adaptive direction. The gluten intolerance may have increased her risk to develop these thought patterns, but a gluten-free diet and counseling may together help to correct it.

4. Consider a consult with a neurologist to address your daughter’s residual symptoms. Ask about a MRI of her brain.

5. Consider testing all of your children, yourself, and close relatives for Celiac Disease and gluten sensitivity since this can run in families. My mother, my daughter and I have CD. Many can be asymptomatic or can have very mild symptoms.

Please discuss all of this with your medical doctor before making any changes. Most of all, pat yourself on the back for all the great progress you have made. You are amazing!

Her symptoms were as follows–

-intro to wheat at 6 months
- extreme tantrums began at 12-15 months(included self injury)
- I noted an unusually high pain threshold in her limbs (would get hurt and bleed but not feel it)
-18 months of age she was starting to stop making eye contact during some communication attempts (seeming autistic like)
- by 24 months she stopped making eye contact during most communication attempts, tantrums would exceed 2-3 hours long, declination in fine motor skills, potty trained with night time bed wetting, stomach complaints
- Between 3 and 4 years of age I started noticing more and more that she was exceedingly clumsy. She often dropped things, knocked things over or would just seemingly “trip over her own feet”

-Age 5 she got ill with epstein bar virus which exacerbated her symptoms and new ones began

they included:
- 90-95% of the time she made no eye contact.
- She would not let us touch or hold her for comfort and was inconsolable much of the time.
- She was thriving in school, but at home was depressed and lethargic.
- She was unable to follow simple 1-2 step directions claiming she “forgot”
- She had very poor balance, seeming drunk a lot of the time. IE: She would fall off of a chair when she was just sitting on it, or just fall into a wall while walking; appearing ’silly’
- She had a great decline in her motor development; she could no longer pour a glass of milk she would pour beside the cup without getting anything in.
- I had to resume the use of sippy cups because she could not get her cup to her mouth without spilling or missing her mouth
- She was having suicidal thoughts (expressed to her toys at quiet time)
- She complained about her hands and feet feeling funny
- Nightly stomach complaints but the pain seemed to be increasing in severity
- Lost the ability to effectively communicate during overwhelming experiences. If she was upset she would cry and scream and struggle to use appropriate words
- Had increasing difficulty with word finding
- Increase in bedwetting
- Would stomp with her feet and bang on the walls on a regular basis
- She would zone out in dangerous situations; such as wandering unresponsive or dropping to the ground in a tantrum as we crossed a busy road.
- Had no physical awareness

12 months after initiating GF diet:
-She is still struggling greatly with her memory. She is able to follow 2-3 step directions with about 90% success.
-She will at times repeat a story 4-5 times with no memory and denial of previous identical conversations.
-It can be difficult to rouse her from “daydreaming”, this has also been noted by her teacher and has resulted in dangerous situations.
-She has constant tremor in her hands, occasional twitching at her mouth and a complaint about feeling “shaky in her body” She also comes to me saying she feels like “something bad is going to happen” She did have anxiety issues, but together we can not attribute these “bad feelings” to anxiety provoking events.

We are 12 months gluten free and many of her neuro symptoms resolve but some linger and new ones have started. I am desperately looking for a consult, but because she’s so atypical I’ve had to fight tooth and nail.

My 2 year old’s gluten sensitivity symptoms included: Violent aggression, oppositional behaviour and severe tantrums. All of which have resolved in the 2 months that he has been gluten free.

If anything at all I hope that this list of symptoms can lead to even 1 single diagnosis. It was an article like this that resulted in my insistence on a Celiac screen. Thank you for writing it.