Dr. Nicole Sundene
WHAT IS GLUTEN NEUROPATHY?
Gluten Neuropathy is an extremely painful condition caused by nerves being attacked and destroyed. This can result in symptoms that require visits to multiple specialists such as a Neurologist, Psychiatrist, Endocrinologist, Gastroenterologist, Dermatologist, Allergist, Immunologist, Pulmonologist, and Rheumatologist. If you are already ping ponging back and forth between a few of these different specialists then this article is for you!
Today we will go over a topic that impacts several of my favorite Naturopathic specialties working in Natural Endocrinology, Holistic Dermatology, Psychiatry and Dermatology. In Gluten Neuropathy, every time the patient eats gluten, even a tiny bread crumb, the immune system is primed to attack the nervous system resulting in symptoms very similar to Multiple Sclerosis, Chronic Fatigue, ADHD, Anxiety, Depression, Chronic Pain, Insomnia, and Restless Leg Syndrome.
You do not need to have Heartburn, Diarrhea, Constipation or Bloating to have a SERIOUS ISSUE with gluten. This is a fallacy that many of my patients fall victim to, refuse to listen to me, and continue to live in pain bouncing from specialist to specialist eventually to the Psychiatrist because they are so miserable and in pain they don't want to be alive and need an antidepressant.
Many patients with Gluten Neuropathy are misled that they must have stomach problems in order to have a "gluten problem" and/or are misdiagnosed with Fibromyalgia or "Idiopathic Neuropathy" and sadly end up in wheelchairs and become bedridden from this extremely painful condition that rapidly destroys nerve cells and can cause permanent damage. The real problem with Gluten Neuropathy is we need to catch it quickly and treat it aggressively with Natuopathic herbs, supplements and nutrition to help recover function of the nervous system, otherwise the damage from Gluten can be permanent. Even once we have diagnosed and eliminated Gluten as the cause of the chronic pain, some patients do not fully recover function, which is why it is important I share this information today on Gluten Neuropathy today so patients can get better as soon as possible.
WHAT ARE THE SYMPTOMS OF GLUTEN NEUROPATHY?
Pain, generally severe neurological pain, headaches, dysthymia (depression or lack of interest in doing anything) fibromyalgia like symptoms, arthritis, brain fog, ADHD, trouble concentrating, stomach ache, heartburn, diarrhea, and anxiety. [1-4]
Hearing Loss, Cognitive Decline, Psychiatric Issues, Epilepsy, and Dermatology issues like Paresthesias (burning, tingling, “bugs crawling on my skin,” or pins and needles.”) Also commonly seen with severe or advanced Gluten Neuropathy are Diminished Reflexes, and Ataxia or loss of control of muscles, clumsy movements, speech changes, and lack of balance also can occur with Gluten Neuropathy. If you are constantly bumping in to things, dropping things, cannot remember things, forget what you are doing while you are doing it, cannot recall words or say the wrong words, always feel tired, depressed, and blah, AND have poor balance then this is most likely what is wrong with you if your Neurologist has found nothing else wrong.
Basically Gluten Neuropathy looks exactly like MS with a very similar symptom set, severe fatigue that causes the inability to stay awake during the day coupled with insomnia at night, chronic pain, headaches, and weird buzzing and skin crawling sensations. Without labs and MRI's to differentiate the diagnosis the symptoms appear almost identical to both doctors and patients. I have had many women in my practice terrified they have MS, when the true diagnosis ends up being Gluten Neuropathy, a much better diagnosis, although sad when you cannot consume bread. I do recommend my Multiple Sclerosis and Autoimmune patients avoid gluten as it does tend to prime the immune system to further attack healthy tissues such as nerves which we will discuss further today. [5-18]
CAN GLUTEN NEUROPATHY MAKE IT DIFFICULT TO WALK?
Patients with Gluten Neuropathy have massive damage to the cells in their nervous system and brain and in an advanced state have difficulty walking, difficulty with balance, and difficulty controlling their hands, feet, and eyes. This is because researchers found the following nervous system cells were destroyed by Gluten:
“In gluten ataxia, loss of Purkinje cells, atrophy, gliosis and astrocytosis were apparent, as well as diffuse lymphocytic infiltration and perivascular cuffing with lymphocytes. In patients with large-fiber neuropathy, nerve biopsies revealed axonopathy, loss of myelinated fibers and focal and perivascular infiltration by inflammatory cells. Inflammatory infiltrate was also observed in muscle in myopathy and in cerebrum of patients with encephalopathy and patients with epilepsy.” [5]
Gluten Neuropathy is therefore as serious and severe as Multiple Sclerosis, the only thing missing is the lesions on the brain, however the symptoms, pain, and loss of control of the nervous system are identical.
DO I HAVE TO HAVE STOMACH PROBLEMS TO HAVE GLUTEN NEUROPATHY?
No. The studies show that at least 20% of patients with gluten neuropathy do not have any digestive symptoms at all, which is why I am writing this article because many of my gluten neuropathy patients refuse to take their gluten intolerance seriously without labs or stomach aches to demonstrate the “Why” behind the challenging diet they must follow. So to combat this noncompliance, I am writing this article and listing all the research studies that state this is a false rationale that many patients create because they are truly traumatized at the thought of giving up bread and tell me “I cannot live without bread.” Well at some point with Gluten Neuropathy we have to choose functions like walking and talking over eating bread, if you cannot go anywhere or talk to anyone there is little point in eating bread in my mind.
For those that cannot adhere to a Gluten Free diet, I recommend counseling as this is an eating disorder issue coupled with a self love problem when patients do not love their bodies enough to give the proper nutrition it needs and are eating foods that are intentionally causing self harm. Working with a skilled counselor (not a dietician but a therapist or psychiatrist) to help understand obstacles and triggers is imperative for proper success.
Researchers concluded in another study that gluten causes psychiatric and neurological disorders in the presence or absence of gastroenterology issues such as diarrhea, constipation, heartburn, and bloating, with children being the most at risk for experiencing neurological issues in the absence of stomach issues. [14-20]
This is why a Gluten Free diet is such a tough sell to many of my parents that bring their ADHD and behavioral issue children to me, because they refuse to believe that a food can destroy the nervous system without impacting the gut, and we will just have to agree to disagree on this subject as I have seen dramatic improvements in my autism, epilepsy, and ADHD patients by simply avoiding gluten. I would not bother to advise such a stressful diet to comply to if it was not necessary.
Many times patients have refused to follow their Gluten Free diet and this causes the amount of herbs and supplements they need to pile up to hundreds if not thousands of dollars a month to treat all the individual symptoms caused by Gluten Neuropathy and Celiac Disease. So from a cost benefit analysis, I see the diet change as the least expensive option, especially when we are looking at long term damage, long term destruction to the nervous system, and potential long term damage to the brain, hands, feet, balance and coordination centers.
Eating a food that is making you at risk for falls that can cause concussions is not healthy. The gluten we eat today has been genetically modified to a point that it has become so inflammatory that most people can no longer tolerate it at all. Everyone is just in denial about it.
Of further challenge is the need to do the Gluten Free diet for at least six months without cross contamination to fully confirm the diagnosis. Many of my patients with chronic fatigue and “Idiopathic Neuropathy” should do the six month trial of the gluten free diet to allow enough time for the body to purge all gluten, and the immune system time to stop making antibodies to gluten that attacks the nerves. Patients that are not improving should have their antibodies tracked so the doctor can determine if the diet is being conducted properly and the antibodies to gluten are going down, this is important when ruling out cross contamination with restaurant food. Researchers concluded:
“Celiac Disease is commonly associated with sensory neuropathy and should be considered even in the absence of gastrointestinal symptoms.” [8]
HOW IS GLUTEN NEUROPATHY DIFFERENT THAN REGULAR NEUROPATHY?
While most cases of Neuropathy in America are caused by Diabetes mellitus and Insulin Resistance, Gluten Neuropathy is less widely known, and may cause a more rapidly degnerating type of Neuropathy than Diabetes. I see patients in their twenties and thirties with debilitating Gluten Neuropathy, whereas most of my seniors do not have diabetic neuropathy until their seventies or eighties and it is not completely debilitating in the early stages.
Diabetic Neuropathy tends to target the feet and legs first while Gluten Neuropathy tends to start in the hands and feet and then cause headaches and full body pain although patients with Gluten Neuropathy can present differently.
In both instances of Neuropathy the nerves are under attack either from sugar or gluten and are being destroyed by the nervous system. While the nerves of the peripheral nervous system can repair, once the damage has gone on for too long, full recovery can become challenging and may not completely occur, although I do see patients seeing improvement and reduction in their pain even when it does not completely resolve. [19]
HOW COMMON IS GLUTEN NEUROPATHY?
Gluten Neuropathy and Neurological manifestations occur in 10% of all Celiac Disease patients:
“The most common clinical manifestations are cerebellar ataxia, gluten encephalopathy, multiple sclerosis, peripheral neuropathies, sensorineural hearing loss, epilepsy, headache, depression, and cognitive deficiencies.” [15]
Researchers have concluded that 1% of the population has Gluten Neuropathy, however I would argue that number is higher due to lack of awareness, compliance, and diagnosis. [16]
Most Neurologists do not even bother to consider telling my patients with Idiopathic Neuropathy to consider a Gluten Free Trial for six months and instead let them continue to suffer in debilitating pain by just stating “It’s idiopathic there is nothing we can do.” When a doctor calls something “Idiopathic” that means they do not know what causes it. What I hear as a doctor when another doctor uses this term with me is “Idiotic” meaning the doctor is too lazy, or lacks intelligence to find the cause. Never accept the label “Idiopathic” as a patient, as it IS idiotic and lazy and utterly fails to help the patient understand what type of treatments would be the best for them.
WHO IS MOST LIKELY TO HAVE GLUTEN NEUROPATHY?
Patients with an existing diagnosis of Celiac Disease are at the highest risk of Gluten Neuropathy. However, having any autoimmune disease increases risk of Gluten Neuropathy diagnosis, with the most common autoimmune disease second to Celiac Disease causing Gluten Neuropathy being Hashimoto’s Thyroiditis. The majority of my Hashimoto’s patients report less joint pain and fatigue with eating Gluten Free.
Other thyroid diseases such as Grave’s disease are also common. Hormone imbalance may play a role as menopausal women are at higher risk, other conditions common with Gluten Neuropathy including:
“Idiopathic pancreatitis, unexplained liver enzyme abnormalities, autoimmune hepatitis, primary biliary cholangitis, hyposplenism or functional asplenia with severe bacterial infection, type 1 diabetes mellitus, Hashimoto's thyroiditis and Graves' disease, Sjögren's syndrome, dermatitis herpetiformis, recurrent aphthous syndrome and enamel defects, unexplained ataxia, peripheral neuropathy, delayed menarche or premature menopause, Down syndrome, Turner syndrome, Williams syndrome, chronic fatigue syndrome, IgA nephropathy, and IgA deficiency.” [8-9]
Researchers have found a link between gluten and a lot of rare and random diseases, therefore attempting to avoid Gluten is highly worth the effort when you are dealing with something "Idiopathic" or with no known cure. In Naturopathy we call Gluten Elimination “Removing the Obstacle to Cure.” By removing Gluten we are helping the body heal and repair itself at the "Root Cause."
WHAT OTHER SYMPTOMS ARE COMMON WITH GLUTEN NEUROPATHY?
Celiac Disease and Gluten Intolerance can present with a wide range of symptoms, both gastrointestinal such as indigestion, diarrhea, abdominal pain, bloating, distension or constipation. Non-gastrointestinal symptoms include fatigue, dermatitis herpetiformis (Gluten Rash), anemia, osteoporosis, hormone imbalance, fertility challenges, premature menopause, short stature, neuropathy, tremor, ataxia or delayed puberty. Although some people present with typical symptoms, others have few or no symptoms. [17]
WHAT IS THE TREATMENT FOR GLUTEN NEUROPATHY?
Lifelong gluten avoidance with immediate Naturopathic treatment with any “Gluten Poisoning” to temper the response. Anytime someone with gluten neuropathy eats gluten it can restart the clock for six months, and it may take another six months to reduce the pain and inflammation to the nervous system from accidentally ingesting gluten which commonly happens at restaurants where most meals are advertised as “Gluten Free” when they actually are “Gluten Free Friendly” meaning they are prepared in the same area that other Gluten containing products are, cooked on the same grills, chopped with the same knives, and therefore have something called “Cross Contamination.” My patients that are addicted to eating out generally never fully resolve their Celiac Disease symptoms nor their Gluten Neuropathy because they are never fully getting a break from Gluten.
Furthermore, when I worked in restaurants in college, I was one of the most educated people there, most of the people I worked with did not have beyond a High School Diploma and some did not even have that, or were teenagers. So we cannot rely on uneducated people that do not care if you are suffering and in pain to properly prepare your Gluten Free meal. I have also had patients had their meals switched and their spouse given the Gluten Free bun while they ate the Gluten containing one, so always double check when they deliver your meal, and ask "This is the Gluten free meal right????"
Or do what I do with my Autoimmune Disease and just stay AWAY from restaurants and eat healthy food at home is my best advice to achieve results! I eat at home before every activity, party, baseball game, football game and social activity to avoid getting in a situation where I am starving and I have no options. The fuller you are before you show up the most likely you will be to perfectly comply.
Many patients state their issue with compliance is other people forcing their baked goods on them. Just stop and politely say "No thank you, I have Celiac Disease and can only eat the food I prepare myself, I ate before I came here." Anyone that pushes beyond that is a total psycho in my experience as living gluten free, probably needs to be gluten free themselves and is in denial about it, and will therefore not support you or respond with understanding to any further explanations you provide. The more you explain yourself the less powerful you feel, the less powerful you feel, the more likely you are to slip up and eat Gluten. You do not need to destroy your health to "be polite" and eat that cookie they made that nobody in America needs to eat anyways. This is not about them, this is about your health, your pain, your stomach, your skin, and with Gluten Neuropathy.... saving yourself from being bedridden and using a wheelchair.
My experience is that I don't want to be friends with or around people that are not supportive of what my chronic disease requires. Most people will be supportive but you cannot expect everyone to care because a lot of people are lost in their own Narcissistic worlds and not eating the cookie they made now has mentally ruined them. You don't want to be friends with someone like that anyways. If it is a family member that does this I recommend eating before hand, asking what they will be preparing, and then bringing all of your own food and drinks. You cannot expect other people to cater to your Gluten Intolerance. The best of friends will, and the worst of friends won't....and nobody's mom cares if you cannot have gluten. Your mom will not care that you need to be gluten free, don't expect anyone in your family or even your spouse to care about your Gluten issue. This is something you must take 100% responsibility for yourself. Just give up on the concept that other people will cater to your health problems and fix your problems yourself by making it very clear you are there to socialize and that does not include food.
Even worse is when someone tries to cater to your Gluten free needs but then does something really stupid like baking Spelt bread which is not gluten free. I have heard this story multiple times and my response as a doctor is always the same, "Just stop expecting other people to cater to your Gluten Intolerance."
Expectations always lead to disappointments.
That may sound harsh, but one meal made wrong by a well meaning friend or cross contaminated restaurant food may set you backwards months with your pain levels and is generally just not worth it if you suffer from a severely painful condition such as I do with my Lupus. For me, a "moment on the lips" means months of pain on my hips, so I am highly motivated to avoid Gluten but it took a long time before I could take it seriously. I tried and failed repeatedly and the biggest issue was that I did not give my body a long enough break from Gluten to fully understand what it was doing to me! Friends and family trying to constantly poison me was of course the second biggest issue, because baking is many people's "Love Language" and way of showing you that they love you even though what they really mean with their well meaning Gluten containing product is "I hate you and want you to be in a wheelchair."
Again don't waste your time on others and expecting them to care about your Gluten Free needs. Simply politely defer several times. Always use the words "Celiac Disease" so they take you seriously and if you eventually lose your temper because they are not listening then just give up and tell them you will get together with them for activities and not meals.
After years of dabbling in Gluten Free land and flunking out, I now see Gluten as the Neurological poison it is and will shamelessly smack any gluten containing product people are trying to hand me right out of their hand. I am not polite about being offered Gluten by the same person repeatedly. Nice twice third times a B1*$H 😉
Being Gluten free is super complicated, requires an educational process, and is beyond just avoiding bread as gluten is in a variety of soups, drinks, and condiments such as soy sauce. When you are brand new to Gluten Neuropathy or autoimmune disease pain, I would ONLY go to restaurants that specialize in this for the first six months. Tell your friends and family you are not allowed to eat out for medical reasons. If you are going for social reasons eat before you leave and only order bottled water. If it does not come in a bottle or a package it could be cross contaminated with gluten. After the six months is up your immune system should be less reactive to Gluten and these minor slip ups will be something you can identify. But in the beginning of treatment for this disease, it is impossible for my patients to improve while eating restaurant food. I don't like to fail, I like to hit a home run every time with each and every patient so I am just stating the facts of my experience with Gluten Neuropathy and Gluten slip ups.
For the first six months of treatment for Gluten Neuropathy I recommend eating no restaurant food at all as this may interfere with seeing proper results for this debilitating condition and is the number one reason my patients fail with their Gluten Elimination trial and tell me it does not work. Now we are risking wheelchairs because we cannot stop restaurant food? This is utter nonsense and nothing frustrates me more as a doctor than someone that is throwing away a perfectly good diagnosis and treatment plan because they cannot stop unhealthy indulgent restaurant food that nobody in America needs to be eating anyways! I see this all the time with my Weight Loss patients that tell me they cannot stop eating out because their husband wants to eat out for every single meal. Losing weight while eating inflammatory restaurant oils, high sodium, and rich indulgent meals is not going to result in a successful outcome, nor will eating restaurant food work with Gluten Neuropathy.
Working with your Naturopathic Doctor to develop a menu that works for your particular lifestyle to treat your Gluten Intolerance, monitor your compliance via labs, and get properly educated about all of the hidden sources of Gluten, are the most important first steps of recovering from Gluten Neuropathy.
Cross contamination, and people at health food stores telling my patients that “Ezekiel Bread” and “Bob’s Killer Bread” are Gluten Free when they are not are a huge obstacle to getting my patients to properly comply to avoiding Gluten. These are “Gluten Free Fairytales” my patients have sadly fallen for.
This is why working with a skilled Naturopathic Doctor on this is extremely important as many nutritionists and health coaches have misled my patients over the years and told them very stupid things like “you can eat sourdough bread” which is a fallacy that I wish were true, I of course had to test myself only to get a full body rash, joint pain, heartburn and migraine…. so we need to remain in reality to receive results and stop listening to the TicTokDocs.
Proper treatment is very important because researchers concluded that:
“Adherence to a strict gluten-free diet was associated with a significant reduction of headache, dysthymia, cramps and weakness.”
Therefore avoiding gluten for a full six months for my chronic pain and chronic fatigue patients is very much worth the effort, or I would not have bothered to type this blog. [20-23]
HOW LONG DOES IT TAKE TO SEE IMPROVEMENT FOR GLUTEN NEUROPATHY?
While most of my cases begin to see gradual improvement over days to weeks, I tell all my patients with this challenging condition to budget six months of hard work in order to truly understand how gluten is impacting their pain levels.
IF I HAVE IDIOPATHIC NEUROPATHY DO I HAVE GLUTEN NEUROPATHY?
Probably. The majority of Neuropathy cases I have worked with that had no known common cause such as Diabetes, do respond well to a gluten free diet. The challenging part of the treatment plan is getting patients to comply with a diet they 100% do not want to follow, however as someone that has been gluten free for many years I can tell you that once you quit gluten it will be one of the best decisions you have ever made, especially if you suffer with autoimmune disease like I do, and have chronic pain. [12]
WHAT PSYCHIATRIC DISORDERS ARE CAUSED BY GLUTEN NEUROPATHY?
Several severe neurological conditions can be caused by Gluten Neuropathy such as, depression, anxiety, dementia, panic attacks, paranoia, schizophrenia, suicidal thoughts, brain fog, ADHD, epilepsy, and RLS. [13] These conditions not only have a significant association with gluten but can also benefit from a Gluten Free Diet. A lot of patients think I am extreme for recommending NO GLUTEN for their psych case, but as a Naturopathic Doctor specializing in Holistic Psychiatry for seventeen years and counting, I want to reduce the inflammation to the nervous system and brain at their "Root Cause" which generally means a change in nutrition. Considering the severity of some of these conditions, going Gluten Free is much less extreme than taking antidepressants, antipsychotics and seizure drugs!
CAN THE NERVOUS SYSTEM HEAL FROM GLUTEN DAMAGE?
Yes and no. In my seventeen years practicing as a Naturopathic Doctor, I have seen advanced cases of Gluten Neuropathy that have failed to fully resolve in elderly patients. Generally because they refuse to give up their toast for breakfast and telling someone that is eighty that they have to stop eating the same breakfast that they have eaten for their entire life can be extremely challenging.
For my younger patients that immediately understand they are running the risk of needing a walker or wheelchair and immediately comply with avoiding gluten 100%, generally adding some nerve healing agents such as natural supplements, vitamins, and herbs can help speed the recovery from this painful condition. The damage done to the nervous system from gluten is very similar to a car accident and will take time and natural medicine to repair along with continuing to abstain from gluten for life.
Need my help avoiding gluten, and healing your nervous system from its damages? Simply visit my SCHEDULE page to treat yourself to a Naturopathic visit!
Dr. Nicole Sundene
480) 837-0900
Dr. Sundene is a Naturopathic Doctor in Scottsdale, Arizona, and is a Female Hormone Expert in Women's Health and Bioidentical Hormones. She specializes in Holistic Women's Health for Menopause, Thyroid, Hashimotos, PMS, Perimenopause, Autoimmune, Postpartum, Chronic Fatigue, Depression, Anxiety, Food Allergies, Digestion, Dermatology, Acne, Psoriasis, Eczema, and Adrenal Hormonal Conditions. In 1999 she began working for a Hormone Doctor prior to starting Naturopathic Medical School. With over 23 years of experience in both Prescription and Natural women's health and hormones, she presents to women the best-integrated health solutions for their Chronic Disease.
She has been an Herbalist for over 28 years and enjoys teaching women how to use herbs to balance their hormones, nutrition and optimize their health. Dr. Sundene relies on blood testing for her hormone metrics. The hormone testing is covered per the patient's insurance plan (not Medicaid) and conducted at certain points in the woman's menstrual cycle. To learn more about Hormone Testing for Women Visit: Bioidentical Hormones.
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