Part 8 Of 12 Part Series: Neurological Symptoms (Ataxia, Neuropathies, Seizures, Strokes, Migraines, Myopathies, Dementia) With Undiagnosed Celiac Disease, Gluten Intolerance or Sensitivities

November 13, 2009 · Filed Under 12 Part Series: CD Symptoms 

This is the eighth in a series of posts discussing the variety of symptoms that can be caused by undiagnosed Celiac Disease (CD). In this post, neurological symptoms will be discussed. There are studies, articles, and books identifying an association between gluten intolerance/CD, gluten sensitivities, and neurological symptoms (1-3,5-13,16-110,115,117,119,120,136-144,148,151-153). The pathogenesis is thought to be due to autoimmune reactions (to ingested gluten) causing inflammation and damage in the central and peripheral nervous systems in genetically predisposed individuals (1,17,18,21,23,24,29,30,71,83,110,117,118,123,152,153,155).

Some abnormal findings can include abnormal brain waves on electroencephalography (EEG), unusual cerebellar physiology, hypoperfused brain regions, brain atrophy, inflammation, patchy Purkinje cell (out-put neurons) loss in the cerebellum, and and progressive multifocal leukoencephalopathy leading to destruction of myelin sheaths that support neuronal impulses. Other findings include lymphocytic infiltration of the cerebellum and peripheral nerves, damage to the posterior columns of the spinal cord, and widespread IgA deposition around vessels in the brain. As well, brain white-matter lesions or calcifications, likely resulting from autoimmune reactions, calcium deposits, ischemia, vasculitis, or inflammatory demyelination, can occur (1,10,16,19,26,38,56,58,67,73-76,99,100,105,107,111-116,118,151).

Many with neurological symptoms, associated with CD/gluten intolerances/gluten sensitivities, do not have bowel symptoms. In others, the intestinal villi responsible for absorbing nutrients becomes damaged, creating a flattened mucosal surface (villous flattening). Autoimmune reactions to ingested gluten and related prolamines cross-react with intestinal villi and create this damage. Various nutrient deficiencies can occur and this can cause or add to the severity of the neurological symptoms (1-4,7,11,14,15,59).  Nutrient deficiencies contributing to neurological symptoms can include vitamins E, B complex, K, amino and fatty acids, calcium, magnesium, phosphorus, copper, electrolytes, l-carnitine, and inositrol (7,11-14,15,59,93,99).

Symptoms

Collectively, immunological reactions, various neurological  abnormalities, and nutrient deficiencies can lead to a wide variety of neurological symptoms.

Gluten Ataxia

Gluten Ataxia may result from immunological damage to the cerebellum, posterior columns of the spinal cord, and peripheral nerves. Ataxia symptoms can include staggering gait, lack of balance, poor coordination, unsteadiness with standing or walking, increased falls, and dysarthric speech (may be slurred, slow, and difficult to produce and also the pitch, rhythm, loudness, and other voice qualities may change). Other symptoms include dysphagia (difficulty swallowing), clumsy exaggerated imprecise limb (arms and legs) movements, difficulty with fine-motor skills (ex. writing, buttoning a shirt, or eating),  oculomotor (abnormal eye movements) problems, sensorimotor axonal neuropathy and other peripheral neuropathies. As well, dysmetria (inability to judge distance or scale), decreased processing of sensory information, sometimes declining cognitive function, and decreased cerebellar processing of afferent information (information from muscles, joints, movement, visual, auditory, somatosensory, cerebral cortex and midbrain) can occur. The progression of symptoms is generally slow. However, in some cases the progression is quick with cerebellar atrophy that can occur within 1 year of the initial symptom. A gluten-free diet may take a year or more to eliminate antibodies and this along with correction of nutrient deficiencies will hopefully decrease or stop further progression of symptoms. If permanent damage has already occurred, symptoms may not resolve. Children and infants can have ataxia symptoms as well (17,21,22,23,29,31,49,71,126,150,154).

Neuropathies (Neuritis)

Autoimmune damage to the nerves, inflammation, and nutrient deficiencies may lead to a variety of neuropathies. Symptoms can include burning, tingling, numbness, vibrations, pinching, stabbing, buzzing, pressure, muscle twitches, or a loss of feeling. These sensations can spread from an initial localized area to other parts of the body. Pain may also occur and may feel like an electric shock, legs may feel heavy, an increased sensitivity to touch may occur and paresthesias resulting in sensory loss and muscle weakness can occur. Other symptoms can include carpal tunnel syndrome, vestibular dysfunction (dizziness, lack of balance), myelitis, reduced reflexes, deep sensory loss, proprioceptive (sense of position in space) loss, dysesthesias (abnormal sensations), feeling like you are wearing gloves or stockings, difficulty moving limbs, frequently dropping items, walking with a wide stance (to compensate), and increased falls. As well, a change in bowel habits, sexual dysfunction, skin problems, organ dysfunction, internuclear opthalmoplegia, myelopathies, paralysis, and acute paraplegia might occur. Autonomic nerve damage can also cause low blood pressure and dizziness. Onset can be sudden or gradual and neuropathies can affect any age (70,80,81,120,127)

I had intermittent tingling, numbness, vibrations, cold and burning feelings, and pain in my head, face, arms, and legs. I also had carpel tunnel for awhile and had to wear a brace. My daughter had tingling and numbness in her feet. Occasionally, I also experienced pressure on top of my head or on an extremity, and transient head and mouth numbness would occur. There were occasions where I actually felt like I was slurring my speech.

Epilepsy (Seizures)

There is mystery regarding the pathogenesis of gluten-sensitive epilepsy, however, a connection between CD, bilateral occipital cerebral calcification (may or may not be present), and seizures has been noted. It is reasonable to suspect that immunological autoimmune reactions, possibly associated vasculitis, inflammation, and nutrient deficiencies may be responsible. The prognosis is influenced by how soon in the disease a gluten free diet is started. Seizure symptoms can include auras (perceptual disturbance prior to seizure), prodromes (ex. early symptom such as disorientation, photosensitivity, euphoria, or aphagia), loss of consciousness,  automatisms (involuntary movements), versive (forced and involuntary head movements) or nonversive (mild, seemingly voluntary head movements). Other symptoms include confusion, vomiting, convulsions, difficulty talking, drooling, incontinence, temporary paralysis, sweating, and tachycardia (increased pulse). Involuntary movements during the seizure may include chewing movements, lip smacking, eyelid fluttering, eyes rolling up, falling, hand waving, stomping feet, may bit tongue, vocal sounds, shaking, stiffening, staring, swallowing, grinding and clenching teeth, tremors, and tensing muscles, altered breathing pattern, and twitching movements. Seizures may be grand mal, petit mal or focal. Immediate assessment by an MD can help rule out a stroke. (13,14,19,31,32,37-45,66,94,99,102,103,128,155).

Migraines/Headaches

Episodic, mild to severe headaches, often with some form of transient neurological deficit, is associated with gluten sensitivities. Immunological reactions, inflammation, associated vasculitis, brain white matter, hypoperfused brain regions, altered brain waves, and nutrient deficiencies may contribute to this symptom. A pre-migraine/headache aura can occur and symptoms may include seeing spots, wavy lines, flashing lights, visual distortion of objects, weakness, numbness, confusion, difficulty with words, and/or a feeling of pins and needles. The migraine/headache symptoms may include pain in part or all of the head that is throbbing, pulsating, or stabbing, possibly with temporary visual loss or change (ocular migraine), nausea or vomiting, and sensitivity to light noise and smell. A complicated headache may involve extra symptoms, such as difficulty understanding speech, difficulty speaking, numbness, tingling, paralysis of a limb, or include another nervous system deficit (25,29,93,32-34,36,84,86,87,101,129,151). Be careful about assuming these symptoms are related to a headache since a stroke may cause similar symptoms.

I experienced ocular migraines. I would have partial vision loss, usually unilaterally, that would last 1-2 hours, then resolve. Occasionally, I would see flashes of light out of the corner of my eye, the room would seem cloudy, and I would see dots blocking my view, or dots of grey falling from the sky, like snow. I had a full-check up with an optometrist and an ophthalmologist, but all tests were negative. Food allergies or sensitivities can cause neurological symptoms as well. Ten to twenty minutes after eating a banana, the roof of my mouth becomes very itchy, and my vision becomes blurred (usually without head discomfort) for 2-3 hours. 

Cerebral Infarction (Strokes) and Thrombosis (Clots) Formation

Antiphospholipid Syndrome is associated with CD and this can increase the risk for arterial and venous thrombus formation (61,134,135). In a case study, three patients with CD had antiphospholipid syndrome. One experienced fetal death, the second case presented with thrombosis in her limb and had renal infarction. The third case had two spontaneous abortions and a transient ischemic cerebral attack (61). You can see how the presence of antiphospholipid syndrome in CD could possibly lead to strokes, renal problems, fetal complications, pulmonary emboli, heart attacks, or ischemic attacks in other areas of the body. Thrombosis, leading to ischemia could be the first symptom/diagnosis present in CD. Other factors that may contribute to stroke or thrombus formation include associated systemic vasculitis (leading to stenosis, occlusions, or aneurism of the blood vessels) or the activity of autoantibodies inhibiting angiogenesis (affecting the health of blood vessels). As well, vitamin K deficiency (due to malabsorption in CD) may increase the risk for an intracerebral bleed or cause a protein S and protein C deficiency possibly leading to thrombosis (21,29,60,96,125,155-158).  Collectively or in isolation, these factors could lead to a variety of ischemic symptoms.

In case studies, strokes in children and adults were linked to CD (77-80). With a stroke, brain function is lost, as a result of ischemia, due to a thrombosis, embolism, or a hemorrhage. Stroke symptoms are dependent on the area of the brain that is compromised. Collectively, the symptoms may include convulsions, apneic attacks, difficulty swallowing, reduced vibratory and sensory sensation, decreased ability to move extremities (arms and legs) on one side of the body (hemiplegia) or paralysis, weakness, difficulty understanding or formulating speech (aphasia), visual field changes or defects, facial weakness, numbness, and decreased reflexes (swallow, gag, pupil reactions to light are altered ). Other symptoms include tongue weakness (may be unable to protrude or move side to side), sptosis (drooping of eyelid), ocular (eye) muscle weakness, sensory changes (hearing, taste, smell, vision touch), difficulty walking, difficulty with coordination, dizziness, incontinence, difficulty with balance, and nystagmus (involuntary eye movement). As well, abnormal breathing and heart rate, sternocleidomastoid muscle weakness (difficulty turning head to one side), apraxia (voluntary movements are altered), loss of memory, hemineglect, confusion, disorganized thinking, anosognosia (denial of a deficit), loss of consciousness, vomiting, and headache can occur (33,77-80,130,131). Permanent damage can occur. Thrombosis symptoms could also include organ failure, deep vein thrombosis, heart attack, or pulmonary emboli.

Myopathies

Muscle symptoms may result from immunological reactions affecting the nerves or muscle tissue, a compromised blood supply to the muscles, intramuscular bleeding, and/or nutrient deficiencies. Muscular symptoms can include cramps, stiffness, spasms, weakness, aching, pain, fatigue, swallowing difficulties (dysphagia), droopy eyelids, difficulty moving eyes, eye paralysis, limb weakness, weakness after exertion, tetany, decreased mobility, difficulty climbing stairs, difficulty breathing, myocarditis, hypotonia, decreased muscle mass, difficulty lifting objects or doing activities of daily living (3,12,13,38-46,48,49,56,59-63,65-70,93). If CD tests are negative, keep in mind that muscular symptoms can occur with gluten sensitivities, food allergies or sensitivities in the absence of CD. Gluten and dairy were specifically mentioned as possible antigens to try eliminating from one’s diet (48,49,58,76). An allergist or naturopathic doctor may be helpful to identify offending foods.

Myopathy involves a disease process that leads to dysfunctional muscle fibres. Various myopathies have been associated with CD and gluten sensitivity including dermatomyositis, polymyositis, inclusion body myositis, rhabdomyolysis, ocular myopathy, muscular dystrophy, neutrophillic myositis, muscular hypotonia of the infant or child, proximal myopathy and generalized myopathy (12,13,38-46,48,49,59-63,65-70,93). Intramuscular hemorrhage was also identified in one case study and this symptom was due to a vitamin K deficiency (75).

Nutrient deficiencies (common in CD) that may contribute to muscular symptoms include vitamins A, D, E, K, niacin, thiamine, pantothenic acid, pyridoxine, cobalamin, protein, fat, carbohydrates, calcium, magnesium, phosporus, potassium, iodine, iron, and copper (14,15).

I experienced muscle cramps, stiffness, weakness, aching, and fatigue. There were times I felt so weak that I had to sit or lie down for awhile. My daughter and mother both had muscle cramps.

Dementia

Immunological reactions leading to brain atrophy, nerve damage, nutrient deficiencies, hypoperfused brain regions, vasculitis, and white matter lesions may contribute to dementia symptoms. Dementia can be very subtle or obvious. Dementia symptoms may include loss of short term memory, difficulty with finding words, memory loss or forgetfulness (ex. forgetting names or appointments), difficulty doing familiar tasks, personality or mood changes, change in behavior, and poor judgement. Other symptoms include paranoia, hallucinations, suspiciousness, confusion, disorientation in new or usual surroundings, difficulty with activities of daily living, altered sleep habits, difficulty learning, increased falls, aggressiveness, and inappropriate sexual behavior. As well, poor concentration, confabulation, anxiety, impaired swallowing, withdrawal from others, malnutrition (forget to eat), dehydration, seizures, injuries, difficulty with communication, poor organization, decreased motor and coordination function, personality changes, and difficulty reasoning can occur (58,60,91,132).

Prior to diagnosis, I would experience foggy thinking and memory lapses.

Note: Psychological and other cognitive symptoms will be discussed in the next post. If you have any of the above symptoms, seek medical attention immediately for an assessment.

Other Contributing Factors

Other factors that may contribute to neurological symptoms include smoking, hypertension, diabetes, hyperlipidemia, ischemic heart disease, atrial fibrillation (potential for clots), hyperhomocysteinemia (associated with CD), renal failure, thyroid disease, calcium metabolism, inborn error of metabolism, trauma, infections, genetics, toxic-metabolic agents, certain medications, poor diet, vitamin deficiency or toxicity, alcoholism, heavy metals, solvents, street drugs, and gastric surgery (leading to deficiencies) (46,96,107).

Associated Conditions

In studies, CD and gluten-sensitivity is associated with other neurological diseases, such as Huntington’s Disease/Chorea (29,46,47,133), Ramsay Hunt Syndrome (28,69), Plummer Vinson Syndrome/Patterson Brown Kelly (8,9,81,82), Stiff Person Syndrome (29,104), and Multiple Sclerosis (MS) (85,136-143).

Gluten intolerance/sensitivities can produce a variety of neurological symptoms so it is reasonable to suspect that associated autoimmune damage, inflammation, and possible nutrient deficiencies may play a role in other autoimmune diseases such as Parkinson’s Disease, Amyotrophic Lateral Sclerosis (ALS)/Lou Gehrig’s Disease, Guillain–Barré Syndrome (GBS), or numerous other neurological conditions. If gluten sensitivity isn’t the culprit, then perhaps other various food antigens or processing agents are prompting an autoimmune response.

In individuals that are genetically predisposed to gluten sensitivities, gluten consumption can lead to increased expression of zonulin (a human protein that is a haptoglobin 2 precursor) in the intestinal tissues. This increases intestinal permeability allowing macromolecules (ex. food antigens, bacterial, and viral particles) exposure to the immune system. The immune systems exposure to gluten and the subsequent autoimmune reaction is thought to be responsible for the intestinal and other systemic damage seen in Celiac Disease. Unfortunately, the increased bowel permeability can also increase the risk of developing food allergies/intolerances/sensitivities. Dr. Alessio Fasano and his research team feel this is part of the underlying pathogenesis involved in CD and possibly many other autoimmune diseases. Could increased intestinal permeability, leading to immune exposure to many possible food antigens, be responsible for other neurological diseases such as Parkinson’s Disease, ALS and Guillain–Barré Syndrome? (109).

Wendy Cohen (Registered Nurse), wrote an interesting article “Is There A Link Between Parkinson’s Disease And Gluten Intolerance” (http://tinyurl.com/y8tamew Ref-92). Wendy makes some interesting observations which highlight the possibility of gluten possibly playing a role in Parkinson’s Disease. As with Parkinson’s Disease, I am curious about a possible link between ALS, gluten intolerances and other food allergens. My grandfather had ALS. My mother (his daughter), myself, and my daughter have CD. Could my grandfather have been misdiagnosed? Did he really have neurological and muscular symptoms as a result of undiagnosed CD?  One article, identified a 44 year old male who was misdiagnosed with ALS. Further investigation 6 months later revealed that he really had CD. He was put on a gluten-free diet and 9 months later his symptoms had improved (148). The abstract can be viewed at http://www.ncbi.nlm.nih.gov/pubmed/17914346 and the case summary http://www.medscape.com/viewarticle/563701.

Another area of interest, is the use of Palaeolithic diets to lesson immune responses and control symptoms. Theoretically, this may help many with symptoms related to food intolerances since all grains, dairy, legumes, and processed sugar (eliminates corn sweeteners too) are removed from the diet. With this diet, individuals eat very primal foods, with the belief that our bodies may have difficulty immunologically with foods that have been introduced fairly recently in our evolutionary history. A researcher, Dr. Loren Cordain, PhD, (from Colorado State University, USA) discusses the use of a Palaeolithic diet for Multiple Sclerosis in a 2007 video, “Potential Therapeutic Characteristics of Pre-agricultural Diets In The Prevention And Treatment Of Multiple Sclerosis” http://wildhorse.insinc.com/directms03oct2007/. Dr. Cordain discusses how 4 individuals with MS benefited from this diet and believes this diet may benefit others with various autoimmune diseases as well. I have a friend with MS. Upon diagnosis, her neurologist recommended a gluten-free and casein free diet. She feels that this diet has helped to control her symptoms. I wonder if a Paleolithic diet would completely halt the disease. The video is located on Ashton Embry’s website at Direct-MS.

More research is needed to investigate possible links between food antigens and other neurological diseases. A therapeutic diet would be an attractive alternative to the use of medications (with possible side effects) and other possibly invasive procedures. Further research, better diagnostic tests, and increased awareness can help medical professionals and patients put the pieces of the gluten/food sensitivity puzzle together. If you feel you may benefit from a gluten-free, grain–free, or Paleolithic diet, talk to your doctor and a Registered Dietitian for advise.

Diagnosis

There are a number of tests to consider when diagnosing gluten sensitivities. Anti-transglutaminase 6 IgA and IgG is prevalent in gluten ataxia and is useful to screen for gluten sensitivity in neurological disease (152). IgA endomysial antibodies and IgA anti-transglutaminase 2 tend to correspond with the severity of intestinal damage and is valuable along with an upper endoscopy with multiple biopsies to investigate intestinal involvement (1,5,6,152). A 2009 study recommends adding IgG Celiac G+ antibody test along with IgA anti-transglutaminase antibody for screening (147). If the patient has IgA deficiency then IgG tissue transglutaminase antibody test may be helpful. As well, IgG and IgA antigliadin antibodies may be helpful to identify if increased intestinal permeability has allowed gluten (gliadin) to leak in through the tight junctions between the intestinal epithelial cells. This leakage could potentially lead to a gluten sensitivity and with continued exposure potentially CD. Positive IgG and IgA antigliadin antibodies can indicate that a gluten sensitivity exists (1,5,6,51-54,57,58,106,119). In a 2008 study, Dr. Hadjivassiliou (neurologist) and colleagues recommend anti-transglutaminase 6 IgG and IgA, HLA genetic testing, IgG and IgA anti-gliadin antibodies, and anti-transglutaminase 2 antibodies to help identify gluten sensitivities in individuals with neurological disease (145).

Additional tests are available as well such as fecal tests, rectal mucosal patch technique (new in Sweden), and saliva tests. An MRI along with other neurological tests and biopsies may be ordered to investigate the pathological damage (1,5,6,115,146). Tests may reveal other autoantibodies are involved such as anti-ganglioside antibodies, anti-Purkinje cell antibodies, anti-glutamic acid decarboxylase (GAD), anti-synapsin antibodies and other anti-neuronal antibodies. As well, oligoclonal bands may be present in the cerebral spinal fluid (118,122,123,153). It is important to explore the presence of nutrient deficiencies as well.

Do You Have Any Of The Above Symptoms?

CD can be present in children that are growing normally so normal growth rate should not be a factor that excludes the possibility of CD (159). Many individuals with undiagnosed CD/gluten sensitivities will have no bowel symptoms. Weight loss may or may not occur, and is dependent on the amount of the intestine that is damaged (1,15,29,30,71,106). Therefore, the symptoms in this post could occur in the absence of stunted growth, weight loss, or bowel symptoms.

The presence of neurological symptoms as discussed in this post, indicates that you should talk to your MD about tests for gluten sensitivities/CD and tests to rule out other possible causes of your symptoms. Testing for CD/gluten sensitivities is important because undiagnosed CD increases the risk of developing other autoimmune diseases, lymphomas (skin, brain, lymph nodes, intestine), cancers (thyroid, esophageal, mouth, tongue, pharynx, tonsil, and small intestine), allergies, complications from malabsorption issues, possible decreased immune response to other illnesses (1,2,5,6,109), and many other health complications that will be discussed in the posts about CD/gluten sensitivity symptoms. It is my hope that if you have neuromuscular symptoms you can print out this post complete with medical references to take with you to the MD when you request testing. Highlight or underline the sections that apply to your symptoms. I’ll be posting a simplified summary and checklist in the 12th post.

It is possible to have a gluten sensitivity even if you test negative for CD. It is also possible that some of your symptoms could be due to a food allergy/sensitivity or other disease process. For example, Dr. Stephen Wangen (http://tinyurl.com/yjsrqle) describes how a boy with TIC disorder benefited  a gluten-free, dairy-free diet (95). Allergy testing, and/or an elimination diet may help you to identify offending foods. Other tests can help rule out other diseases. I encourage everyone to have their symptoms thoroughly investigated by their MD and specialists before implementing a therapeutic diet. A consultation with a Registered Dietician can provide guidance to ensure all nutritional needs are met. Keep your MD informed about any dietary changes you are making and also the results. Of course, I would love to hear your story as well.

I recommend waiting until CD/gluten sensitivity testing is complete before initiating a gluten-free diet because it may create a false negative. Discuss this with your MD or specialist. USE CAUTION WITH SUPPLEMENTS. Toxicities can occur with over supplementation and this can lead to permanent damage. Consult your MD, Registered Dietitian, or other medical specialists involved in your care to determine which nutrients should be supplemented and to identify appropriate dosages for you. Review your symptoms and everything in this post with a Medical Doctor and your specialists before you make any changes. Your MD knows your medical history and the treatments that are appropriate for you.

Diagnosed Celiacs and people with food allergies/sensitivities, please comment about your symptoms  and experiences at the end of each post. This will help other readers to see how the sometimes illusive symptoms of CD or food sensitivities can affect each of us.  We are all unique!

References

1. Excellent Book: Green PHR, Jones, R. Celiac Disease A Hidden Epidemic. Collins, Harper Collins Publishers, 2006 http://tinyurl.com/ljeqjc

2. Pruessner Harold T, MD. Detecting Celiac Disease In Your Patients. American Family Physician. March 1st, 1998.

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5. Excellent Book: Lieberman Shari PhD,CNC, FACN, with Linda Segall. The Gluten Connection. How Gluten Sensitivity May Be Sabotaging Your Health. Rodale Inc., 2007. http://tinyurl.com/nwsc79

6. Excellent Book: James Braly, MD., Ron Hoggan, MA. Dangerous Grains. Penguin Group, Inc., 2002. http://tinyurl.com/knswhn

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6 Responses to “Part 8 Of 12 Part Series: Neurological Symptoms (Ataxia, Neuropathies, Seizures, Strokes, Migraines, Myopathies, Dementia) With Undiagnosed Celiac Disease, Gluten Intolerance or Sensitivities”

  1. Sanna on November 26th, 2009 7:13 am

    Hi! I am not sure if it is gluten ataxia i have, but i get symptoms just one hour after eating wheat, oats, rye, yeast, vinager and msglutamate(both are made from yeast), mushrooms, tomato paste(lots of natural glutamate) and milk. When i eat everything except for milk and lay down to rest, my jaws start moving from side to side even if i am awake, i also have a strange sensation of my brain being zapped with electricity. When i have eaten milk, my jaws start moving in another direction, forward and backwards, and the day after it feels like my brain is floating around in coca cola. I have read that yeast and gluten antibodies can cross react and cause the same symoptoms here http://www.denvernaturopathic.com/news/celiac.html so i think this might be what is happening. I will try to get my doctor to do these test on me. Thanks alot for the gret info!

  2. Sanna on November 26th, 2009 7:15 am

    Oh btw.. i also get cracking joints one hour after eating these things. I think it is because of an excess of interleukin-6, breaking down the hyaluoran, but i am not sure.

  3. Valerie on December 9th, 2009 9:12 am

    I have 4 children. 1 with biopsy confirmed Celiac and one with strong positive tTG reactions to gluten. Gluten affects my family neurologically. Due to this, it took over 5 years to finally get my 7 year old diagnosed.

    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.

  4. Shelly on December 22nd, 2009 12:47 pm

    Valerie,
    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 consumption. You are a great mom and a strong advocate for your children. I’m sure that your journey has been painful and emotionally exhausting. As you know, the symptoms associated with CD and gluten sensitivity can be quite elusive. This, combined with the unfortunate lack of awareness amongst medical professionals (in many countries) can lead to prolonged suffering and delayed diagnosis.

    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!

  5. Cara on February 1st, 2010 3:58 pm

    Excellent information you have presented here! Gluten and casein sensitivity, and nutritional deficiency have caused multiple health problems for my family. I’ve been particularly interested in the neurological manifestations of gluten sensitivity for many years. My story is here:
    http://jccglutenfree.googlepages.com/thestory

    Cara

  6. Shelly on February 4th, 2010 12:15 pm

    Cara,

    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

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