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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


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    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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    Guest Confused in Iowa

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    I have had numerous health issues that are all signs of this illness and had finally narrowed it down to gluten. I had eliminated it from my diet for 2 weeks and had noticeable improvements in my back/side pain and my sinuses. So I asked my doctor for a blood test. It came back negative. His response was to try gluten again and see for sure and I had one piece of cake which triggered cramping, diarrhea, and the rash on my arms itched like crazy. Back pain returned. So I went to another doctor who did an endoscopy. In the recovery room he said it looked as though I had celiac (Yea finally a reason for the pain) Last week I got his results from the 10 biopsies and they all said negative.

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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

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    I have had numerous health issues that are all signs of this illness and had finally narrowed it down to gluten. I had eliminated it from my diet for 2 weeks and had noticeable improvements in my back/side pain and my sinuses. So I asked my doctor for a blood test. It came back negative. His response was to try gluten again and see for sure and I had one piece of cake which triggered cramping, diarrhea, and the rash on my arms itched like crazy. Back pain returned. So I went to another doctor who did an endoscopy. In the recovery room he said it looked as though I had celiac (Yea finally a reason for the pain) Last week I got his results from the 10 biopsies and they all said negative.

    I had terrible abdominal pains, very noisy digestion, wind and diarrhea. After many weeks I went to see a specialist, a thorough examination of stomach through the digestive tract to large intestine, including numerous blood tests revealed that I did not have Celiac disease. However, I kept an accurate food diary for five months. I made the decision to live the lifestyle of a Celiac, after around three weeks all unpleasant symptoms slowly disappeared. I felt superb and thought the problem would never reoccur. While on holiday I started eating bread and pasta, after two weeks all the symptoms returned. I am now suffering for my stupidity and swear that I will never eat wheat, cereal or any gluten product ever again.

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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?

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    Thank you very much for all this information especially the parts relating to Adrenal Fatigue and the blood sugar regulation (pancreas etc.). While I value and appreciate that most of this information comes from your experience I would like to see it supported with footnotes as to your sources so I can dig deeper. Thanks.

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    Regarding the connection between celiac disease and other inflammatory diseases such as Arthritis, is it only Rheumatoid Arthitis or have you seen Osteo Arthitis in Celiacs as well?

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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 also African American and being tested for celiac

    and for DH as well. Can you tell me some of your symptoms??

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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

    Dear Tasia, I too am diagnosed with celiac and DH. It is true that many doctors are uneducated about celiac in people of color. But, there is hope. Keep blazing the trail by informing doctors of your illness in order that they will either do the necessary research or cause you to choose other doctors who are willing to do the research. I understand and am learning through my local support group that part of my journey is to inform and challenge my caretakers to take care of me.

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    I am also African American and being tested for celiac

    and for DH as well. Can you tell me some of your symptoms??

    The symptoms are pretty classic. I would suggest you check out the symptoms and compare them to yours. Mine included both DH, migraines, joint issues, tingling and numbing sensations and all of the typical stomach and bowel issues including lactose problems. It took over two years of misdiagnoses before I was diagnosed. I have been on a gluten free diet for 1.5 years and I feel great! I don;t wish it on anyone, but Celiacs was an answer to prayer for me!

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    Wow! It took more than ten years for me to get diagnosed and I too am happy to be gluten free. I had many of the symptoms you listed, At 46, I'd suffered with migraines since 13, joint problems since high school and in 1996 I developed neuro symptoms and DH, but it took ten years of seeing many, many, many doctors, including psychologists before I was diagnosed, I cried for the first six months because I thought I was crazy when every test I took came back negative. Thanks you for sharing this...you are saving someone's life! Celiacs diseae was my answer to prayer and I feel SO much better NOW...no more headaches!!!

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    I have had numerous health issues that are all signs of this illness and had finally narrowed it down to gluten. I had eliminated it from my diet for 2 weeks and had noticeable improvements in my back/side pain and my sinuses. So I asked my doctor for a blood test. It came back negative. His response was to try gluten again and see for sure and I had one piece of cake which triggered cramping, diarrhea, and the rash on my arms itched like crazy. Back pain returned. So I went to another doctor who did an endoscopy. In the recovery room he said it looked as though I had celiac (Yea finally a reason for the pain) Last week I got his results from the 10 biopsies and they all said negative.

    If you're reacting to the gluten, you're intolerant. Check out Enterolabs, they do stool testing (you'll have to go back on gluten for it) or gene testing. Stool testing is more accurate than blood tests, as the antibodies are almost always present in the digestive tract (where the initial reaction takes place) and not always in the blood (must have leaky gut for it to get into the blood). It was beneficial for me to get the gene testing, as I now know that I have 2 gluten intolerant genes (severe symptoms, many of them), and that every single one of my children will get at least one gene from me. You are probably gluten intolerant vs. celiac, and that's why the endoscopy was normal (though some w/ 2 GI genes can get celiac sprue). I wish you luck, remember average diagnosis is 7-10 years after onset of symptoms.

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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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