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  • Heidi Kelly
    Heidi Kelly

    Atypical Celiac Disease

      Journal of Gluten Sensitivity Autumn 2010 Issue. NOTE: This article is from a back issue of our popular subscription-only paper newsletter. Some content may be outdated.

    Caption: Image: CC--hhm8

    Celiac.com 05/10/2019 (originally published 10/08/2010) - After giving birth to my first son in 2003, my OB/GYN tested me for diabetes due to a sore on my leg that would not heal.  The diabetes test came back negative but my thyroid stimulating hormone (TSH) level was extremely high.  Further testing revealed Grave’s disease.  After seeing an endocrinologist I underwent radioactive iodine ablation to “kill” my thyroid gland.  After ten months of unsuccessful thyroid replacement therapy, following radioactive iodine ablation due to Grave’s disease, I was diagnosed with celiac disease in April of 2005.  

    Once I had begun Levoxyl, a thyroid replacement hormone, things got worse instead of better.  I had monthly blood work done to check my TSH levels in order to see if I was on the proper dosage of medication.  Over the next ten months, my TSH levels continued to climb, eventually reaching a high of more than 150, (the normal range is from 0.4 to 4.5.) despite being on a very high dosage of Levoyxl and having added another medication for the T3 hormone (Cytomel).

    During this time, it felt as though the life were being sucked right out of me.  I was extremely lethargic, gaining weight at an unnatural rate of 2—4 pounds a week, despite being on the Weight Watchers program, and I fell into a deep depression.  I was prescribed a series of antidepressants, none of which did any good.  Life was borderline unbearable, especially while caring for a toddler.

    In April of 2005, after being at his wits’ end as to why I was not absorbing my thyroid hormone, my brilliant endocrinologist thought to test me for celiac disease and the blood test was positive.  He did not recommend doing the biopsy.  I think that was because there was an urgency to get control of my TSH levels.  Within 4 months of going on the gluten-free diet, my TSH levels dropped from the 150’s to 5.52.  

    I wish I could say my story ended there and that I have been happily gluten-free ever since, but that is not the case.  Once I began to feel better from having a normal thyroid level, I foolishly began to question my celiac diagnosis.  From what I read at the time, the diagnosis did not make any sense.  I did not have chronic gastrointestinal issues, vitamin and mineral deficiencies, or any of the ‘classic” symptoms of celiac disease.  Neither did I have a known family history of celiac disease.  

    The social impact of being gluten-free was devastating for me.  I did not have a supportive family who embraced my diagnosis.  My mother was the biggest influence.  She was confused and overwhelmed by all the changes I needed to make and instead of learning about it with me, she quit including me in family meals.  My mom couldn’t understand why I couldn’t just have a “little” gluten a few times a year, like at Thanksgiving and Christmas.  She thought I was too demanding in questioning her food and its preparation, so she felt it was easier to just have me there when food was not involved.  I felt lonely and guilty for ruining her holidays and my depression worsened from the isolation.

    To make matters worse for my uneducated mind, I began to take information I read about the inaccuracy of the AGA blood tests and use it to convince myself that I did not actually have celiac disease.  When I was diagnosed with celiac disease, it was based on only two tests that were ordered by my doctor: Anti-Gliadin IgG and Anti-Gliadin IgA.  My AGA-IgG results fell in the “Equivocal” range at 25.2 EU (positive was greater than 30 EU).  My AGA IgA was positive at 42.7 EU (positive was also greater than 30 EU).

    Without consulting my physician, I foolishly went off the diet for the next year and I was included in my family again.  Follow-up visits to my endocrinologist showed that my TSH levels were still in the normal range (despite resuming gluten consumption) and I was not suffering from any GI issues, so I was fairly confident my blood tests fell under the “false positive” category.

    When my husband and I decided to have another baby, I was at least aware enough to get the biopsy first.  Knowing about the fertility issues that can accompany untreated CD, I had to know for sure before getting pregnant.  I may have been reckless with my own health, but my children are another story.  When I met with my gastroenterologist for the first time and presented my case, he agreed with my assessment and said I probably didn’t have celiac disease.  The biopsy showed otherwise.  It was positive.  When I questioned him on my lack of symptoms, he said a few things to me.

    It was likely that my celiac disease was recently triggered by my pregnancy with Sam, thus the damage to my intestine wasn’t as severe.  The damage to the intestine is patchy at first and the areas of my intestine that were damaged didn’t affect my absorption of iron, vitamin D, etc.  Celiac Disease is progressive, meaning the longer I consume gluten during active celiac disease, the more intestinal damage and symptoms I would incur.

    After giving birth to my second son in July of 2007, I cheated on the gluten-free diet again because the hospital could not accommodate my diet.  

    Five months after my son was born, my father’s brother died from non-Hodgkin’s lymphoma just 9 days after he was diagnosed.  My pleas for the hospital to test him for celiac disease were ignored as they were trying to save his life.  I knew he wouldn’t make it but I thought it was important to know for our family-tree.  After his death, I learned that my uncle battled severe asthma as a child and approximately 10 years prior to his death he was diagnosed with “tight belt syndrome” after seeing his doctor for gastrointestinal symptoms.  Nothing else was done.

    Ironically, while at my uncle’s memorial service in July of 2008, I fell off the diet for the final time.  This time was different though, and about 7 weeks into it, I broke out in a blistering rash all over my torso and scalp.  I also had a bruise 10-inches in diameter on my back as the result of trying to relieve the intense itching by rubbing my back on a doorknob.  I went to my dermatologist for a skin biopsy to confirm my suspicion of dermatitis herpetiformis.

    Once the Dr. confirmed it, I asked her if she saw dermatitis herpetiformis often in her practice.  She said she had a few patients with it, but it wasn’t common.  I then asked her if she knew that it is related to celiac disease and she responded with, “I have heard the GF diet can help some patients with DH, but Dapsone is a more effective treatment” (as she handed me a prescription).

    I never filled that prescription, especially after my doctor told me that I would need regular liver tests while I was on it.  Knowing that untreated celiacs run the risk of liver diseases like autoimmune hepatitis and biliary cirrhosis, adding a medication that could further jeopardize my liver seemed foolish.  

    It turns out that my DH diagnosis was the key to further understanding my lifelong problem with gluten-sensitivity.  While I have not had the classic GI symptoms, I have been dealing with chronic atypical symptoms my entire life.  One of the physicians I saw most frequently, when growing up, was a dermatologist.  I have recently acquired my medical records from that doctor and this is part of what they say:

    • 1980 (age 6): Diagnosed and treated for chronic eczema (on my feet—duration of treatment was at least 7 years)
    • September 1980 (age 6): Diagnosed and treated for Impetigo* (on my scalp)
    • August, 1982 (age 8): Diagnosed and Treated for Impetigo* (on my buttocks)
    • In 1997 (age 15): I began to develop a minor itchy rash on my knees.  My allergist chalked it up to my environmental allergy to grass and later the dermatologist said it was related to the humidity.  (I was never tested for dermatitis herpetiformis.)
    • 1998 (age 16): I developed a rash consisting of flat scales on my torso, arms and scalp on a trip to Florida.  Upon returning home and seeing my dermatologist, he diagnosed me with psoriasis.  After spending a year in light therapy, I went into spontaneous remission and have not had a recurrence in 20 years.
    • From 1999—2008, my DH was sporadic and fairly minor with limited irritation.  Until my final outbreak, I never exhibited a rash that looked anything like the photos I have seen in medical journals.  

    Looking back, I can also make several other connections to undiagnosed gluten sensitivity.  I have had many behavioral issues over the years, including extreme emotional highs and lows, anger management issues, depression, and trouble concentrating.  I was diagnosed with Adult ADD by a psychiatrist in 2009 and now take medication for it.

    In 2008, after suffering from severe constipation, my then 5 year old was diagnosed with celiac disease via a positive tTG blood test.  His biopsy came back “clean,” and I was originally told to bring him back when other symptoms developed.  I decided to ask his doctor an “off the record” question regarding what he personally would do if this were his son.  He said that he would put him on a gluten-free diet immediately, so that is what I did.

    I am now 2 years into a strict gluten-free lifestyle, and have never felt better or been happier in my life.  Not only are my celiac son and I gluten-free, but so is my husband and our other son, neither of whom have been diagnosed with celiac disease.  My husband is so enthusiastic about our diet (he not only feels better, but has lost 20 pounds after going gluten-free), that he has never been tempted to eat gluten.  I no longer feel a sense of loss or deprivation on the diet, and in so many ways, we are all better for it.

    *According to the Mayo Clinic, the following are some of the signs and symptoms of Impetigo: 

    1. Red sores that quickly rupture, ooze for a few days and then form a yellowish-brown crust
    2. Itching
    3. Painless, fluid-filled blisters

    Dermatitis Herpetiformis is also characterized by an itchy, blistering rash commonly found on the knees, elbows, scalp and buttocks.  

    I often wonder if the Impetigo was actually DH?


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    The author should have her entire family tested for the celiac risk genes (DQ2.5 and DQ8).

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  • About Me

    Find out more about Heidi by visiting her blog at:
    www.adventuresofaglutenfreemom.com
     

  • Related Articles

    Wendy Cohan, RN
    Celiac Disease Head to Toe
    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.

    Danna Korn
    When Friends, Family or Loved Ones Just Don't Get It
    This article originally appeared in the Winter 2006 edition of Celiac.com's Journal of Gluten-Sensitivity.
    Celiac.com 04/30/2010 - The gluten-free lifestyle is a big part of who we are.  So when friends, relatives, and loved ones don’t get it—I should clarify—when they seem to choose not to get it—we sometimes get a little cranky.
    I know—I was reminded of how it feels when loved ones don’t choose to get it this past Thanksgiving when one of my relatives who shall remain nameless glutenized the mayo jar.  Now I realize it may seem petty to get tweaked about someone dipping a knife in a mayo jar—but it had gluten all over it, and worse yet, she did the same thing last Thanksgiving, and I threw a tizzy about it then.
    Realizing the first dip alone contaminated the entire jar (of course it was the club-sized jar that is the size of a small Volkswagen), there was no point in stopping her from doing it again.  But I watched incredulously as she taunted me, dipping the knife into the jar—then onto the (gluten) bread—over, and over, and over again.  How many gobs of mayo does one need on a piece of bread?!?  I found myself seething, and my blood boiled with every dip-and-spread motion; I swear she was doing it intentionally.
    Yes, I know I should have had a squeeze bottle handy, and I even write about that in my books. My mistake, but I also write about doing the “gob drop,” which is—as the name implies—the process of taking a gob of (insert condiment here) and dropping it onto said piece of gluten.  Using a separate knife, you spread.  It’s really not that tough.
    The bigger point here is that it made me wonder why, after fourteen years of going through this, she didn’t care more about our gluten-free lifestyle.  I spent about six minutes pondering this when I remembered that it’s not that she doesn’t care—maybe she does, and maybe she doesn’t.   The bigger point is that she wasn’t thinking about it at that moment—and that’s okay. 
    This is our lifestyle, and we love it.  Those friends and family who do care enough to call and make sure the meal they’re serving us is gluten-free are to be cherished.  Those who make a special trip to the health food store to buy a mix and make gluten-free cookies are to be downright hailed as saints.  Even those who make a beautiful gluten-free meal and then top it with teriyaki sauce (of the gluten-containing variety) because they don’t know any better are to be adored for trying.
    I write about this stuff in my books, and it surprised me a little to find myself getting miffed about such a petty thing.  I thought I had outgrown those feelings 14 years ago.  I guess my point is that we all face certain challenges from time to time, and we need to put our brightest face forward and meet those challenges with a good attitude, lest they get the best of us.
    The most important thing that helps keep me on track, for what it’s worth, is to remember that the gluten-free lifestyle is the key to our health and ultimate happiness.  We’re blessed to know that a simple change in lifestyle is all it takes to be perfectly healthy—and that’s worth a lotta mayo.


    Danna Korn
    Dealing with Denial by Danna Korn
    This article originally appeared in the Autumn 2005 edition of Celiac.com's Journal of Gluten-Sensitivity.
    You’ve all heard the joke proclaiming that “denial is not a river in Egypt.”  No, it’s not.  What it is, though, is a very real issue for many, if not most people who have been diagnosed with celiac disease or gluten sensitivity.  There are a couple of types of denial—the first type affects us—while the other type affects those around us.
    When We’re in Denial
    Many people who are diagnosed—or when their kids are—go through some type of denial.  It usually occurs at a few key times after diagnosis—and for a few different reasons, here are some examples:

    Immediate denial—the diagnosis isn’t right.  Nope.  Couldn’t be.  I don’t know anyone who has that.  I don’t even know what gluten is.  I’ve never heard of celiac disease.  I don’t have symptoms…my symptoms are mild.  It’s just lactose intolerance, I’m sure.  I don’t have diarrhea, so I couldn’t have that.  I’m overweight, and all celiacs are skinny.  My results were inconclusive.  Someone must have made a mistake.  All of these thoughts can be symptoms of denial. A few weeks into the diet—I don’t think that diagnosis was right.  This is when the reality of doing this for the rest of your life sets in.  One angel (the good one, of course) sits on one shoulder whispering, “You know you need to stay gluten-free—keep it up—you can do it! Mmmm, yummy cheese on this gluten-free toast.  The other shoulder is home to the Devil-in-Denial: “No way are you going to another happy hour and order wine and celery sticks while all the other guys are drinkin’ beer and deep-fried stuff.  You don’t have no stinkin’ intolerance.  Come on—just one beer...and one piece of pizza.  It won’t hurtcha.  No stinkin’ intolerance…”  This is really just a period of ambivalence, hoping beyond hope that you don’t really have this condition, choosing to lean toward believing you don’t. Danger zone:  I never had that.  The most dangerous type of denial occurs several months into the diet, when all of a sudden you realize you feel so good that you don’t even remember the last time you felt bad.  That’s when people often think, “I knew I just needed a little bit of time to get over that bug I had!  I feel great.  I’ll bet I never even had anything wrong with me.”
    When Others are in Denial
    Then there’s the type of denial that our family members and loved ones express.  Ask anyone who is gluten intolerant or has been diagnosed with celiac disease if they have relatives who won’t be tested, and chances are, you’ll get a surprised look as though you just guessed what color of underwear they’re wearing, and a “yeah, how did you know?”  Because we all have them.  Well, most of us do.  Why is it so hard for our relatives to believe they might have this?  It is, after all, one of the most common genetic diseases one can have—and it does run in the family.  Yet we’ve all heard comments like:
    No, I don’t have that (blunt, bold, and full-on denial). I don’t think I need to be tested (oh, really, and that would be because….?!?) I was tested once, and the tests were negative (remember, once-negative does not mean always negative—also remember there are false negatives). I was tested, and my results were inconclusive, so I don’t think I have it (inconclusive may be a euphemism for mildly positive). I don’t have any symptoms (oh, really?  There are about 250 symptoms, and you have NONE?) My symptoms really aren’t that severe; I can live with them (so you’ll just wait till you’re really sick and doing long-term damage to start trying to improve your health?). I couldn’t do the diet anyway, so I’m not going to bother being tested (now there’s a rational argument for you).
    Bottom line is they don’t want to have celiac disease, or they don’t want to give up gluten.  Some of your relatives may even refuse to believe you have it.  I’ve met many people with celiac disease who have been accused of being hypochondriacs or neurotic.The problem with denial is that it justifies eating gluten.  When you have this epiphany “realizing” that you don’t have celiac disease or don’t need to be gluten-free, it’s tempting to run, not walk, to the nearest Krispy Kreme outlet.
    Resist the temptation.  If you’ve been on the diet for awhile, then yes, you feel great, but it’s because you’re not eating wheat or gluten, not in spite of it.  The danger in testing the waters is that you may not have any reaction when you do, and then you’re likely to jump to the obvious (by which I mean “desired”) conclusion and confirmation that you never needed to eliminate wheat or gluten in the first place.
    If you still wonder whether or not you have a medical reason for cutting gluten from your diet, here are a few things you can do to help solidify things in your mind:

    Get properly tested. Get a second (or third) opinion. Talk to other people who have been diagnosed with the same condition about your symptoms and your feelings of denial (chances are they’ll grin and say, “Yep, I felt that way at one point, too”). Write it down: List your symptoms, the symptoms of the condition, and how you feel if you’ve been following the diet.  Sometimes seeing it in writing is the just the proof you need.
    Denial, by the way, is one of the most compelling arguments in support of proper testing and diagnosis.  If you’ve been confirmed with a diagnosis, you may be tempted to fall into a state of denial, but it’s going to seem pretty silly, even to you.But also keep in mind that if you’ve been tested and your results were inconclusive or negative, you may need to consider re-testing or other alternatives.  The tests have changed over the years, and maybe your tests were done long ago.  There are also false negatives; and you can be triggered at any point in your life, so just because you were negative once doesn’t mean you’ll be negative again.  And finally, there are people who are negative on all of the tests, yet their health improves dramatically on a gluten-free diet.  Go figure.
    Remember, if it looks like a duck, walks like a duck, and quacks like a duck, it’s most likely a duck, even if you wish it were a pigeon.


    Melody Stiles, MSW, LCSW, MAC, LCAC
    You're Not Crazy: Coping with Celiac Disease & Gluten Sensitivity
    Celiac.com 12/29/2017 - Do you remember the moment when you were diagnosed with celiac disease or gluten sensitivity? Most people I talk to have it etched in their memory. After all, the information is life transforming. Yet, I doubt if most of us understood the enormity of the information until time passed and we had the opportunity to actually fully understand what it meant besides the gluten free diet (GFD).
    Along with having to learn that gluten is everywhere, we also learn that having to eat differently is, to put it mildly, upsetting. In fact, the psychological impact of living with celiac disease or gluten sensitivity usually involves depression and anxiety. There are other emotional responses as well; these include grief and, for some, trauma (depending upon how long it took for a diagnosis and how sick the person became).
    Celiac disease or gluten sensitivity is such a difficult illness to live with because of the social and cultural fallout we are forced to deal with as a result of having to be on the gluten-free diet. We quickly learn how difficult it is to negotiate the world having to live on the gluten-free diet.
    Let's start with how much food is involved in normal social situations: a family gathering, a party, going out to eat for any meal, a wedding, and for kids of all ages, school, camp, etc. Until it happens to you, it is very difficult to comprehend the enormity of the change and its limiting impact. Change is something people do not like, even if that change is good. And we most certainly do not like to change the way we eat. Just talk to anyone who has ever been on a diet. Unfortunately for those of us with celiac disease or gluten sensitivity, the diet is not optional. And, it's hard; so hard in fact that some people cheat. And ultimately, they pay.
    Culturally, food is hugely important. Food is almost always involved in every occasion that involves spending time with people, dating, any rites of passage including bridal showers, baby showers, weddings, and birthday parties. And there are the holiday gatherings. Every single time you are invited to attend one of these events, you have to stop and think about whether it's worth it to attend. If you go you will either have to eat before you go, take your own food or ask the hostess to make special arrangements. You not only feel like a burden upon those in your social and family circles, but you find yourself stressed out by the mere prospect.
    And the social consequences are enormous. The very people life you have always relied upon for support, begin to drift. You find yourself shocked and saddened by the reactions and behavior of family and friends who you never suspected of being unable to handle change in you. It's hard not to take personally, but their reaction is not about you. They most likely react this way because your life is now too restrictive for them. Just like you, they want to be able to go wherever they want to eat, serve whatever they want to serve and not have to think about it twice. But unlike you, they still can. And this inevitably leads to conflict. Then your feelings get hurt and they are frustrated and you simply stop getting together as often because, in the end, it's just easier.
    I believe that is why people with this disease enjoy socializing with others who are also living on the gluten-free diet. We are trying to avoid the social isolation, loneliness, and shame. We want to forget our fear of the unknown, feeling like we no longer fit in, as if we are lost, or in denial and maybe needing more information. In a nutshell, we feel crazy. Because we cannot do something most people can do: eat normally. These feelings are only a portion of what I have learned about people who are forced to live on the gluten-free diet experience. Parents of children impacted with celiac disease or gluten sensitivity share these feelings as well.
    In the end, you need to give yourself time to fully understand the gluten-free diet, and in order to keep yourself safe, become vigilant to all of the hidden places gluten can hide. We do know that those who stay on the gluten-free diet and avoid gluten as much as possible feel better emotionally much more quickly than those who do not. I cannot underestimate the need to consult a good dietician. You need to find others living on the gluten-free diet; they can often be found through local support groups. Some of us might find it helpful to talk with a therapist who is familiar with celiac disease, gluten sensitivity or chronic illness in general.
    Lastly, you also need to remind yourself that you cannot change how your body reacts to gluten. And you cannot change other people. What you can change is your perception and attempt to understand that while we may require a different diet to stay safe and healthy, those who do not have our diagnoses do not. Our experience of life, then, is changed. We have had change forced upon us. Our friends and family have not. The only thing different to them is that we are telling them we can't eat the way we used to. I think the sooner we accept these facts, the sooner those around us will as well.
    You are not crazy. The way you have felt since the day all of this began for you is perfectly normal. Yes, some people have serious depression in addition to celiac disease and gluten sensitivity. This requires treatment in addition to the gluten free diet. For some, the depression and anxiety are alleviated over time because of the gluten-free diet and subsequent healing. In the end, this is a difficult but doable road and you are in good company.

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