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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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    I thoroughly enjoyed reading this information. I recently started eating gluten-free, because I think I am severely effected by it. I've had several surgeries for ovarian cyst removal. Recently I went to the ER with severe pain in my right side. I had eaten pizza the day before. They thought it was my appendix because my intestines all around my appendix were swollen and inflamed. I have self diagnosed myself, but I've had several of the symptoms you have listed above. All I can say is I will be gluten-free for life now. I feel so much better and I truly fear that I might die if I fail in my diet. To me it is life or death. My grandpa died of colorectal cancer and if I don't stay gluten-free, I fear the same fate. Thanks for your article!

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    I am so happy to hear that my symptoms and conditions can be reversed. Just recently diagnosed, I have been wondering if I can get better. I am encouraged by reading everything I can about this disease.

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    Very informative. I too have celiac disease. I was diagnosed in 2010. I was anemic my whole life. I am 68. I have many other symptoms of this disease. I have gluten ataxia symptoms when I eat gluten. Sometimes it lasts for days. I keep a journal. I have been to a ET &T doctor for my ataxia and could find no reason for this. I now know the culprit - gluten.

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    Thank you all for your information !!!

    We have a 19 year old child and we have been struggling with an endless nightmare of problems with him and doctors saying there is nothing wrong.

    Last night after drinking wheat based vodka he was in such pain and agony that he couldn't get off the floor. We were so worried that we called an ambulance and after deciding he was just drunk from the vodka, they left. 8 hours later, he was still in agony from the cramps. I spent the entire night googling for information until I found this website. Your comments opened my eyes to the problems my whole family suffers from... gluten. Today we went out and bought everything we could find that was gluten-free and are embarking on our own attempt to solve our child's issues.

    Thank you again, and god bless!

    My you all find the end to your suffering.

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    I was diagnosed with Celiac Disease 2/13/09. After researching the disease, I am wondering how long I have been misdiagnosed! I have had a good number of symptoms for the last 30 yrs. My sister found out 5 yrs ago, that she had Celiac Disease, and she told me for at least 4 of those years to go in and be tested. She knew from the research that she had done, and knowing me so well, that I had it. She just had the leaky gut syndrome, but I have had at least a dozen symptoms, for 30 yrs! I feel better, but still have a long way to go. Gluten free is the only way I can keep my terrible headaches away. but I have yet to build up my strength and am always tired yet, but I'm sure it will take some time. I also haven't had one canker sore in my mouth since quitting gluten. My bones and joints still ache and get numb and tingle yet, but time will tell.

    I'm glad I know what has been wrong with me and doing whatever I can to feel better. It's taken its toll on me. My teeth are bad and are always rotting or breaking off. But thank you for all the information you can give me. Cindy

    You may be dairy intolerant also. I take calcium/ magnesium and a good vitamin and a probiotic to feel better. Eliminating dairy and gluten made me feel way better.

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    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.

    I too had a negative result, but as soon as I eat gluten food, I have horrible stomach pains, bloating, gas and constipation. I decided to eliminate gluten altogether and I can tell if I eat out in restaurants because I get the rash back. It seems like doctors don't want to operate on common sense, just test results not by process of elimination.

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    I would just like to point out that while this article seems to have much useful information, where is there any evidence of these symptoms having anything to do with gluten? I think it would be helpful for the author of this article to post the source of this information, as otherwise it is just an opinion. Not negating the fact that this could be related though. For example, Cathy clearly didn't notice anything different when doing the diet (except her pocket book shrinking) and the other diseases and symptoms that formed could be related to anything else. Just saying...

    Proof is a luxury that many of us cannot afford to wait for. It takes an educated mind (or an experienced body) to allow most people to resign to the fact that diseases of this nature are very complex and far reaching, and that western medicine still has a very limited understanding of evolutionary human biology.

     

    I stood by helplessly as a multitude of doctors with your very thinking, led my father to a tragic and untimely death. Then I began to get sick and suffer many of the same symptoms I watched my Father suffer. Instead of relying on a medical community currently lacking the knowledge to deal with such diseases, or the foresight or analytical powers to piece together something on their own, I have done my own research, which includes forums like this.

     

    Although I do not have "proof", nor do I believe the author has "proof" that could satisfy a perspective such as yours - I have results. There is also something to be said for logic. When it is clearly outlined for you in 20 years, you will had all the proof you need. For those of us interested in surviving that long, we settle for, and are extremely thankful for articles such as this one.

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    Not only do I have celiac disease, kidney disease also afflicts. With trying to get a handle on diet, beginning to be alright, and testing recipes for both, my oh my, what an undertaking!!! Although this must be admitted, the fun of cooking different foods then having the food agree with the GI and renal systems is A-OK! Almost two years ago I stopped eating meat, the difference has been GREAT. Thank you.

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    I am 17 years old, and I have been diagnosed with this since I was 14. I grew from 4'10 to 5'9 and gained a lot of weight. However recently my hair has been falling out abnormally...I lose around 300 hairs a day. And I noticed that hair on my temples has receded--my hair is very thin now. HELP!

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    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!

    God bless Vickie. I hope your doing better now.

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    Unless I missed it Anemia was not included..which was a huge symptom for me all my life until I went Gluten Free. Also, Vitiligo and spots on nails.

    Hi Carol, I am on the committee of the Coeliac Soc. in Adelaide Sth. Aust. and also a retired nurse. Yes, anemia is definitely a symptom of C.D. and vitiligo, as with any autoimmune disease can cluster with celiac disease.

    Zinc deficiency (due to malabsorption) can be the reason for the white spots on finger nails. Hope this helps.

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    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!

    Have you eliminated cross reactors such as corn and coffee? Many foods have a similar structure to gluten and can cause the immune system to respond to it negatively. Try the elimination diet and slowly reintroduce foods to find your triggers. This could be things like soy, casein, eggs, yeast, peanuts etc. I have been struggling with all of this as well and just recently found that my iron pills had small but debilitating amounts of gluten and soy. Make sure all medications, vitamins, and supplements are safe. For some people, it only takes for something to be manufactured in a facility that also produces gluten etc. for it to be harmful and the FDA allows small amounts of gluten to exist in products labeled gluten free so we must be aware of those contaminants as well. Also check for candida, parasites, and leaky gut if you haven't done so already. Good luck! And now I am realizing how old your comment is so I can only hope you are now happy and healthy and that my response may help another!

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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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