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

Thank you so much for your comment. Yes, the celiac home test is a very convenient option. Thank you for mentioning it. With blood tests, it is important to be aware that no blood test is 100% accurate. Therefore, false negatives could occur, not only with gluten sensitive enteropathy (Celiac Disease), but also with other forms of gluten sensitivity, such as gluten ataxia. Even intestinal biopsy results can be interpreted as a false negative. As well, if someone has an IgA deficiency or no bowel involvement (like some dermatitis herpetiformis patients), then a false negative may occur since the result of this test tends to parallel the amount of intestinal damage present. Due to the elusive nature of Celiac Disease and gluten sensitivity, I recommend that individuals visit with their Medical Doctor (hopefully one that is knowledgeable about gluten sensitivity) for an overall assessment and follow-up. The doctor can test for IgA deficiency and do other tests (IgG anti-tissue transglutaminase antibody, endomysial antibody, antibodies against deamidated gluten, IgA and IgG antigliadin antibody and an upper endoscopy test) that will give a good overall picture. As well, all medical issues can be addressed and referrals can be made to other professionals, such as a Registered Dietitian, a Gastroenterologist or a Neurologist (with neurological involvement).

I do worry that individuals using the home test option may assume that they don’t have a gluten sensitivity (if the test is negative) or may not seek medical advise (if the test is positive) and proceed with putting themselves on a gluten-free diet with no follow-up (or a scope with biopsies). I hope that everyone using the home test does seek medical attention as well.

Thank you very much for mentioning the test. It is important for everyone to be aware of their options. I have talked to many who have had difficulty getting tested due their MD’s lack of awareness. This can be frustrating and can lead to unnecessary suffering in individuals who remain undiagnosed. The celiac home test provides a nice option.

Shelly

Note: Review tests mentioned in some of my posts in the 12 part series, such as the neurology post. http://celiacnurse.com/neurological-symptoms-ataxia-neuropathies-seizures-strokes-migraines-myopathies-dementia-associated-with-undiagnosed-celiac-disease-gluten-intolerance-or-sensitivities/

Check it out at http://celiachometest.com/

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!