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  • Wendy Cohan, RN
    Wendy Cohan, RN

    Celiac Disease Head to Toe

    Reviewed and edited by a celiac disease expert.

      Headaches are a very common symptom of wheat allergy, as well as gluten intolerance.  Migraines are common in those with celiac disease and gluten intolerance, as are sinus headaches. 


    Caption: Image: CC--WalkingGeek

    Celiac.com 04/05/2019 (Originally published on 10/19/2009) - Gluten intolerance caused by celiac disease, or non-celiac gluten sensitivity, may affect virtually any part of the body. A culprit in multiple health disorders, gluten intolerance is a major driver of health care delivery and associated costs.  While this may seem to be an outrageous claim, a review of the many ways in which gluten intolerance can adversely affect the body will illustrate this point. So, let’s work our way down from head to toe.

    Celiac Disease Can Cause Hair Loss

    Normal, healthy hair is usually glossy and thick.  An autoimmune disorder known as alopecia areata results in abnormal loss of hair, either in patches, or totally, and is one of many autoimmune disorders associated with celiac disease. Malabsorption severe enough to cause malnutrition can also result in thin, sparse, fragile hair. One of the outward signs of hypothyroidism is thinning hair and a loss of the outer third of the eyebrow; hypothyroidism is strongly associated with celiac disease.

    How Celiac Disease Affects the Brain

    Now let’s look at the brain.  There are, unfortunately, a large number of neurological disorders associated with gluten intolerance and celiac disease, including narcolepsy, depression, ADD/ADHD, Autism Spectrum Disorders, and schizophrenia. There are also movement and balance disorders associated with gluten intolerance, including ataxia - the inability to coordinate movements and balance (gluten ataxia, celiac ataxia, some cases of sporadic idiopathic ataxia). In some cases, when symptoms are severe, this disorder mimics other disorders such as Parkinson’s, Normal Pressure Hydrocephalus, and even Alzheimer’s disease.

    Headaches Common in Celiac Disease

    Headaches are a very common symptom of wheat allergy, as well as gluten intolerance.  Migraines are common in those with celiac disease and gluten intolerance, as are sinus headaches.  These symptoms often decline dramatically after excluding gluten grains from the diet. Sinus problems are common in those with celiac disease, gluten intolerance, and sensitivity to dairy products as well, and are often reversible by making dietary changes. Some people with celiac disease seem to have an altered, highly acute sense of smell – for unknown reasons.

    Night Blindness from Vitamin A Deficiency

    Night blindness associated with vitamin A deficiency is reversible when malabsorption is resolved and with the addition of a vitamin A supplement. Xeropthalmia, or chronic, often severe, dry eyes, is also related to severe vitamin A deficiency.  It is rare in developed countries, but can be found in some people with malnutrition due to celiac disease.

    Canker Sores Common in Celiac Disease

    Apthous stomatitis is the name for the mouth ulcers associated with food allergies and intolerances, and is strongly associated with celiac disease and gluten intolerance. Even people who do not have gluten sensitivity get these once in a while but in those with gluten intolerance they are more frequent and especially long-lasting.  

    Dental Enamel Defects Can Indicate Celiac Disease

    While they are usually identified in childhood, they can continue to cause problems throughout life, because they often lead to more frequent dental cavities.  Halitosis, or bad breath, is a reflection of our internal environment and gastrointestinal health, and is often present in those with untreated celiac disease, gluten sensitivity, or gut dysbiosis – an upset in the balance of our internal microorganisms caused by poor diet and other factors. And, one of the autoimmune disorders strongly associated with celiac disease, and one of the most prevalent is Sjogren’s syndrome, which impairs the normal production of body fluids like tears, saliva, and vaginal secretions.

    Strong Link Between Celiac Disease & Eosinophilic Esophagitis

    Following the path our food takes to the stomach, we can look for effects in the esophagus too.  Eosinophilic esophagitis is a rarely encountered inflammation in the tissue of the esophagus which makes swallowing painful and difficult and can result in bleeding ulcerations.  When doctors do see it, they sometimes test for celiac disease, since there is a strong correlation.  Fortunately, in cases where this condition is caused by gluten intolerance, this painful chronic disorder clears up on a gluten free diet, too.

    GI Complaints Common in Celiac Patients

    Now we’re getting to the area most people associate with gluten intolerance – the gastro-intestinal system. In the past, celiac disease was usually described as causing gas, diarrhea, bloating, discomfort, cramping, and malabsorption.  But as you’ve already seen above, there is a whole lot more to this disorder, and we’re only halfway to the toes.

    Celiac Can Be Misdiagnosed as IBS

    In addition to the above symptoms, the body’s reaction to gluten can cause inflammation anywhere, but a common location is in the illeo-cecal junction and the cecum. This can sometimes be confused with appendicitis, or ovarian pain or an ovarian cyst in women experiencing right-sided lower abdominal discomfort.  Irritable bowel syndrome is suspected to affect at least 10-15% of adults (estimates vary). It is differentiated from IBD, or inflammatory bowel disorders (which include Crohn’s disease and ulcerative colitis). But, taken together, there are an awful lot of people out there with uncomfortable gut issues.  One fact to consider is that many of those with celiac disease were previously, and wrongly, misdiagnosed with IBS before discovering they actually had celiac disease.

    Kidney & Urinary Problems

    Let’s take a look at the urological system.  Even though gluten from the food we eat isn’t directly processed here, can it still be affected?  The answer is yes. Kidney problems in association with celiac disease are well documented, including oxalate kidney stones. Bladder problems are increasingly shown to be responsive to a gluten-free diet. This is kind of my specialty and I would estimate that about a quarter of those with interstitial cystitis, and many people with recurrent urinary tract infections, have a sensitivity to gluten. Even prostate inflammation in some men can be triggered by eating gluten grains.

    Adrenal Fatigue in Celiac Disease

    Sitting just atop the kidneys are our adrenal glands.  They have a difficult job, helping to direct our stress response system, our immune system, and our hormone output, and controlling inflammation in the body. Every time we experience a reaction to gluten, and our adrenals respond by sending out a surge of cortisol to help control inflammation, we are depleting our adrenal reserve.  When this happens chronically, over time, our adrenal system cannot keep up and becomes fatigued.  Symptoms of adrenal fatigue have far-reaching consequences throughout the body, including, of course, feeling fatigued and run down. But, adrenal fatigue can also affect our hormones, our blood sugar regulation, our mental acuity, our temperature regulation, and our ability to cope with food allergies, environmental allergies, and infections.

    Celiac Disease Common in Hepatitis Patients

    Can the liver, the body’s largest internal organ, be affected by gluten intolerance too?  One example is autoimmune hepatitis, in which can be untreated celiac disease can be found in large numbers. Early screening testing for celiac disease is now strongly recommended for patients diagnosed with autoimmune hepatitis.

    Gluten Intolerance, Pancreas and Blood Sugar

    The pancreas, which is key in blood sugar regulation, is highly affected by gluten intolerance.  Autoimmune disease triggers the development of Type I Diabetes, and is becoming more closely associated with celiac disease.  Testing for celiac disease is now becoming a routine part of examination when a child develops Type I Diabetes, and now that physicians are looking for celiac disease in juvenile diabetes, they’re finding it with greater frequency. Blood sugar regulation problems are also associated with non-diabetic hypoglycemia in those with gluten intolerance, and appear to resolve with a low-glycemic gluten free diet.

    Celiac Disease Can Affects Limbs and Extremities

    So, we’ve covered most of the body’s major internal systems. Now, let’s look at the extremities, our upper and lower limbs, where gluten-associated problems are also found. Ehlers-Danlos Syndrome, a collagen disorder resulting in shoulder, elbow, and wrist joints that dislocate easily (and other characteristics) is a genetic disorder that may also be associated with celiac disease.  I had mild symptoms of this disorder as a child, but never knew it had a name until I ran across it recently.  With a child who has this disorder, a simple game of swinging a child by the arms, or swinging a child between two sets of their parent’s arms, can result in a trip to the emergency to put their joints back into proper alignment. This is not to say that a reaction to gluten causes this genetic disorder, but that if you have a personal or family history of Ehlers-Danlos Syndrome, and symptoms that may be related to celiac disease, you should consider being tested.

    Arthritis Associated with Celiac Disease

    Rheumatoid arthritis is another of the autoimmune disorders associated with celiac disease, and often affects the fingers with crippling joint deformation. Other joints in the body can also be affected. Scleroderma is another terribly disfiguring and sometimes fatal autoimmune disorder affecting every part of the body. It is often first identified in the extremities, particularly the fingers. In scleroderma, normal tissue loses it’s flexibility as the body’s autoimmune response produces inflammation and an overproduction of collagen.  Collagen is the tough fibrous protein that helps form connective tissues including tendons, bones, and ligaments. Excess collagen is deposited in the skin and body organs, eventually causing loss of function.  Scleroderma can be associated with celiac disease.

    Skin Conditions Common in Celiac Patients

    The arms and legs are also common spots for yet another autoimmune disorder, psoriasis, to develop.  Some patients with psoriasis are responsive to a gluten-free diet, but unfortunately, not everyone. Another skin condition that often shows up on the arms is dermatitis herpetiformis (DH), although this itchy blistering skin rash can occur in other places as well.  Common sites are the backs of the elbows and the backs of the knees, or on the lower legs.

    Peripheral Neuropathy Common in Celiac Disease

    Peripheral neuropathy is a disorder that results in numbness, tingling, and sometimes severe nerve pain in the extremities.  Finger, hands, toes, feet, and lower legs may all be affected. Although usually associated with diabetes, peripheral neuropathy shows up fairly frequently in those with celiac disease, and is fortunately reversible on a gluten free diet supplemented by B-vitamins and some specific amino acids.  Peripheral neuropathy is usually associated with older people, but some of the cases I’ve observed recently have been in very young children who had severe malabsorption issues.  Fortunately they healed quickly and their neuropathy symptoms resolved completely.

    Malabsorption and Vitamin Deficiency

    There a few last symptoms related to malabsorption that tend to show up in those with celiac disease or gluten intolerance.  Easy bruising and bleeding, either due to a deficiency of Vitamin K, or to an autoimmune platelet disorder, is one. Rickets, or osteomalacia – a softening of the bones in the legs related to vitamin D deficiency – is another. As we said before, inflammation goes along with celiac disease and gluten intolerance, and a common site for inflammation is the lower extremities.  Sometimes this can be profound, and trigger doctors to think heart disease, but it’s often unresponsive to Lasix and other diuretics. This condition, too, may also clear up on a gluten-free diet.

    As for me, I’ll be happy to be gluten-free, from head to toe.


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    Thank you for posting about this. My daughter has been dealing with stomach issues since she was 9 and she is now 16. The best the local med. establishment could say was childhood IBS and it never felt like it fit. I will look further into it. Your head to toes descriptions help to realize how far reaching this thing is. I wish there was more info out there on gluten intolerance. I also desire to see footnotes so I could follow along and read some of the source material. But other than that keep writing, people need to hear what you have to say. Good luck and God bless.

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    I had all those symptoms. I went gluten free January 2010. I feel so much better now. Tonight my husband and I went out to celebrate our anniversary and I had one vodka drink. Within minutes I had problems starting. I did not make it to salad before I had to leave the meal. It cost $145. The cramps started immediately around the sides of my ribs, stomach and intestine.

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    I found out two months ago I had celiac disease. I was Diabetic during my last Pregnancy ,but this is ten times harder trying to adjust.Thinking of ever bite you eat is a pain in the butt.Out of my 3 kids my oldest was negative and the others have not been tested.I am 42 and could name you a dozen symptoms I have had that make sense now I know about Gluten allergies.

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    Very informative, thank you.

     

    I've been diagnosed for a few years and am on a gluten free diet. I live in the UK. In the cold months most of my body aches (my shoulders, back, legs and arms). Just wondering if you have any idea what is causing this?

    Hi Asha, Have you been tested for Hashimoto's? It is a form of hypothyroidism. I have both Hashimoto's (for 15 years) and I was just diagnosed with celiac. Intolerance to the cold is one of the indicators of Hashimoto's.

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    Great article - thank you.

    Can you please comment on 'people of color' who have celiac disease. I am a women of color and I have found it very frustrating when doctors tell me that I can't have celiac disease because I am of African descent. I have now received a diagnosis through a biopsy, and I absolutely have celiac disease. But it is still a challenge explaining to doctors that I have a positive diagnosis of the disease.

     

    For years I was misdiagnosed for celiac disease because I didn't fit the typical profile. I am not fair skinned, with light eyes and light hair, and slim.

     

    I appreciate your response on this subject.

     

    Many thanks,

    Tasia

    I am so glad you said something about this. I was diagnosed with a wheat allergy over a year ago and am still having many of the same symptoms even after eliminating wheat from my diet, but no doctor ever suggested that I get tested for celiac disease. I was proactive and educated myself and today demanded a test, so I should get the results in about a week. Unfortunately, it is fairly common for people of color to be misdiagnosed with various illnesses. As a sociology doctoral student, I hope to raise awareness about this and stop this sort of medical racism. In the mean time, all we can do is inform other women of color that this disease is real and to demand testing if their symptoms warrant it because there are no race specific diseases.

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    Thank you for the extremely helpful information - I have been experiencing these symptoms and each year they get worse. I have decided to live gluten-free and within the last couple of weeks its amazing how quickly and positively my body has responded! I am no longer stressed about the consequences that food once caused me. Thank you - many times and again!

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    Reading this article was like reading my mother's entire medical history. She died just short of her 50th birthday. To see it all lined out, is not only eye opening, but creepy. EVERY. SINGLE. THING in this article was something she was affected with. If only one of her doctors had made this diagnosis. I've passed this on to my family.

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    Really good, really helpful. My son is 43 now and has suffered most of his life especially since early twenties. Because he has been affected mentally he fell into hands of psychiatrists who only see schizophrenia, have sectioned him and drugged him. At last, celiac disease is suspected by an enlightened doctor, and he is having tests. It is in the family

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    Really good, really helpful. My son is 43 now and has suffered most of his life especially since early twenties. Because he has been affected mentally he fell into hands of psychiatrists who only see schizophrenia, have sectioned him and drugged him. At last, celiac disease is suspected by an enlightened doctor, and he is having tests. It is in the family

    I hope your son is able to live a reasonable life now. I have severe fatigue/depression for a long time and has taken over my life. I am finally getting tested for food intolrances / celiac-gluten and hopefully I can find an answer. Psychiatrists have done the most harm to me than good over the years.

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    Reading this article was like reading my mother's entire medical history. She died just short of her 50th birthday. To see it all lined out, is not only eye opening, but creepy. EVERY. SINGLE. THING in this article was something she was affected with. If only one of her doctors had made this diagnosis. I've passed this on to my family.

    Sorry to hear about your mother. I'm 42 and am a nurse...I have been searching for answers since approximately 2005, and was getting more symptoms as time passed. I got diagnosed with celiac disease in February '08 by biopsy not blood! However, after many bouts in the hospital and getting weaker and more problems all the time, I felt like this lady was listening to my every complaint when the doctors weren't. I am 1/2 Hispanic. I haven't been able to work for 3 years now due to the severity of my symptoms that I can't get anyone to check out, since they have changed by GI diagnosis multiple times even though the first one confirmed by biopsy the celiac. My biggest concern is that I to will pass before all my symptoms are put together. I've just recently gone on a complete gluten-free lifestyle, including makeup, detergents, food, and everything I could think of. After two weeks no change but I am hopeful. My biggest thing is from a nurse's standpoint is that we trust our doctors to at least listen and research problems. However, this isn't the case at all, as a matter of fact mine just thought I was a drug seeker which made me extremely upset, it took my OB/GYN doctor friend to have a talk with his GI friend and worked hard to get me in to see Rheumatologist etc... I have been to every doctor there is, am in pain management now, which doesn't help. I can't take anti-inflammatory medications at all, due to leukocytic colitis, and I'm now seeing a neurosurgeon who has celiac disease and promises he will help me. I pray for anyone and everyone that is going thru this frustration of non believers etc... to keep fighting someone out there does care somewhere, and my hopes are that this one will be my savior since he is experiencing the same disease. I'm seeing him for cysts that have appeared on lower spine and are intertwined with it; I also had the female issues, and symptoms of Parkinson's at times and my memory is worsening all the time--I keep telling my doctors I want answers not drugs. God how easy it is to forget the oath we take in the medical field!

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  • About Me

    An RN for 14 years, I have been following a strict gluten-free diet for six years of improving health! Now I help others as a Celiac Disease/Gluten Intolerance Educator. I work one on one with people on meal planning, shopping, cooking and dining out gluten-free. I will also work with children who have behavioral issues related to gluten or other food sensitivities.  My other websites are: www.WellBladder.com and www.neighborhoodnurse.net.

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