Why celiac disease is so confusing.

A childhood friend sent me a message, describing symptoms, and asked me about my history with a “gluten allergy” and asked if I thought she might have a gluten allergy as well.  My response to her ended up being quite long… and I thought that it might serve well as a blog post, though I have surely talked about these things before:

OK… I will do my best to answer without confusing the issue even more!

First… I don’t have a gluten allergy. I have celiac disease (as do two of my five kids), which is an autoimmune disorder — like rheumatoid arthritis, multiple sclerosis, lupus — but unlike most autoimmune disorders, the trigger (the thing that starts symptoms) is known. It is gluten. A small portion of the gluten (protein) molecule, called a peptide, does two things: It triggers a self-destruct response in the villi of the small intestine. And, it bonds to neurons in the brain, causing an opiate effect.

Thus, the two biggest symptoms with celiac disease is digestive problems (often diarrhea) and neurological problems (from as “innocuous” as depression to as severe as schizophrenia).

Here’s where it gets weird, though. There are three additional problems:

1) Since the villi in the small intestine are destroyed, many nutrients that should get in the body are not absorbed. This leads to a host of increasing health problems/symptoms that are actually secondary to celiac disease, as they are started from malnourishment of one (or usually more than one) nutrient. For instance, premature osteoporosis from malabsorption of calcium. Lack of calcium can also lead to heart problems — weird palpitations and electrical problems in the heart, because the body need calcium in order for its nervous/electrical system to work properly. There are many, many, many other secondary symptoms of celiac, which makes it particularly hard to diagnose, since the symptoms are actually spokes, and celiac disease is the hub. Often, these secondary symptoms will compound, increase, “develop” as a person ages, because the body has gone longer and longer w/o certain nutrients, and at some point it reaches a critical stage, and causes an illness in the body. Also… since CD is an autoimmune disorder, oftentimes, the body will just start spitting out antibodies to just about everything, in a “last ditch” effort to rid the body of invaders. (Often, when a person with severe, multiple allergies starts a gluten-free diet, secondary allergies and many other secondary health problems, including chronic illnesses, start healing or disappearing.)

2) Usually, even though celiac disease is not an allergy, someone with celiac disease ALSO develops T-cell antibodies to gluten, because the body recognizes gluten as a cause of the problem. IOW, if a blood draw is done, a person with celiac disease will, a vast majority of the time, show an “allergy” to gluten. So, a person can show a gluten allergy, when in reality, the *root* of the problem is celiac disease. Compounding this difficulty, although this a matter of hot debate among scientists and doctors, some people do seem to have “just” a gluten allergy, and not full-blown celiac disease. This is under debate, though, because the body’s response to having the gene that causes celiac disease is so widely varied, and many doctors think that if a person has a gluten allergy, whether or not other celiac symptoms are present, that person likely has latent celiac disease.

3) Adding even more to the confusion is the fact that some people with celiac disease are symptomatic from birth, and some people’s symptoms are triggered by a physically or emotionally difficult situation — like pregnancy, or a death in the family, or divorce, etc. Additionally, some people show symptoms in early childhood, then go into symptomatic remission (for reasons that are not at all understood) during the teen years. Then, symptoms come back later in the teen years, or even much later in life. So, it can appear that a person “develops” celiac disease at a later point in life, when in actuality, that person had CD all along, but for unknown reasons, was asymptomatic.


That was probably more than you care to know.

Suffice it to say, it’s a very confusing disease. Until recently (about five years ago), doctors used to think it was incredibly rare. It was thought that about 1 in 10,000 people have celiac disease. Then, a major, major medical study came out (Dr. Alessio Fasano, at U. of Maryland, if you care to look into it) that showed that on average, about 1 in 130 people in America test positive for CD.

Even diagnosis can be difficult, though… Some people who have the gene do not have symptoms. Genetic testing is expensive, and it is generally not done. However, the blood tests for CD often show false negatives, partly because they look (among other things) for antibodies to gluten, and not every celiac develops antibodies.

HOWEVER…. if you already have allergies, it may be wise to ask your doctor for a celiac panel blood test.

Though this is by no means exhaustive, below is a list of potential celiac symptoms.

I am MORE THAN HAPPY to answer any questions you may have, to the very best of my ability.

P.S. I do understand that I answered in a very roundabout way. What I’m trying to say is that you *could* be having trouble with gluten, and it *could* be an allergy, or it *could* be celiac disease. Without a doctor taking a look at your blood, it’s hard to say, one way or another.
P.P.S. I was diagnosed “presumed celiac” eight years ago, but have had a lifetime of symptoms that went into remission from ages 12-17. “Presumed” because my doctor knew my health history well, and all the trouble I’d had, and all my secondary diagnoses, but I had been on a gluten-free diet for a number of weeks before my bloodwork, so it was inconclusive. However, because a vast majority of my symptoms disappeared whilst on the g.f. diet, he called it “presumed celiac.” That, and at that point, one of my sons had been dx’ed with it. Nowadays, some doctors will accept simply alleviation of symptoms, via a g.f. diet, as enough indication for the presence of celiac disease. Some rely on bloodwork. Some rely on a small intestinal scope (to sample/view the villi). Some rely on a combination. The diagnosis standards are changing and varied.

About Karen Joy

I'm a partially-homeschooling mother of six -- 3 boys ages 19, 17 and 15 years old, and three girls: 11, 8, and 3. I like birding, reading, writing, organic gardening, singing, playing guitar, hiking, the outdoors, and books. I very casually lead a very large group of homeschooling families in the Phoenix area. I have a dear hubby who designs homes for a local home builder and who is the worship pastor of our church. I live in the desert, which I used to hate, but now appreciate.

Posted on October 16, 2010, in Allergies, Celiac Disease, gluten-free, Medical Stuff. Bookmark the permalink. 4 Comments.

  1. Okay,…. a question (or six):

    My little nephew has been hospitalized AT LEAST 6 times in the past 2 years.

    HIGH fevers (103 and above)
    feeling listless
    usually happening in the evening

    Docs have run every test known to man…. including MRI, CT scans, bloodwork, etc.

    They’ve eliminated some big things and some really scary things, but still have not been able to pinpoint what is going on.

    Finally just did an endoscopy and colonoscopy today. Still waiting for results.

    Guess my biggest questions are:

    *Did you ever run a fever as part of your CD symptoms?
    *Did your symptoms last all day? Come and go? Regularly appear at certain times / events?
    *Do you avoid certain foods and that eliminates your CD symptoms altogether, or are they constantly present in your life? (Sorry — too personal?)

    Celiac disease is supposedly one of the things they’ve tested for, but hasn’t been mentioned a lot. All of a sudden, they are looking at the villi in his colon ??!!??

    Wondering out loud,


    • If they are looking at the villi (which is in the small intestine only, and not the large) via an endoscopy, it would seem that they’re looking for celiac disease.

      Wes, who was dx’ed at 13 months old, ran LOTS of fevers. He pretty much lived with a fever his first year of life. He also had chronic ear infections (his eardrums burst five times) which isn’t a symptom of CD, but after we went g.f., his chronic ear infections disappeared. (Now, we’re dealing with languaging processing issues, from his hearing being compromised in that critical stage of language development… another fallout from celiac disease.)

      I’m sure your nephew’s symptoms could be related to something else entirely. However, they could also, very well, fit with celiac disease.

      My symptoms and Wesley’s were present 24/7. However, they seemed to peak at certain times of the day, likely tied, I’m sure, to diet. However, it was so pervasive that it was hard to tell that it was tied to food. Wes had general listlessness. Poor boy. It hurts me to think back on it, and it hurts me to hear of your dear nephew!!

      This may sound weird, but I HOPE they find celiac disease in him. Why?? Because it *IS* entirely controlled by diet. You strictly — 100% with no cheating — do not eat wheat, rye, or barley. Voila! Healing. No medication required. Only life-long vigilance (barring miraculous healing from Jesus, which I will never discount nor leave out of the equation!).

      And, the younger they find it, the better. There are some things, some damage, from which the body cannot heal. The longer someone goes without a nutrient, or with damage (especially in the brain), the harder it is and the longer it takes to heal.

      That said, when Wes started the g.f. diet, he had some healing WITHIN 24 HOURS. He had dramatic healing within five days. Within two weeks, he was literally a different child — stronger, alert, active, happy. Dramatic. I was giddy.

      With myself, the healing was definitely noticeable, but slower. It took more like six months for there to be near-complete healing. However, I, too, could recognize healing taking place within a matter of a few days, and some symptoms disappeared as quickly as Wesley’s did.

      OOH, living with celiac disease is hard, because it limits your social options. You can’t just pop over to any ol’ pizza joint after church and eat whatever you want, and hang out with friends. And packing to-go lunches is difficult. And, the diet can be expensive, because wheat is readily available and cheap. (Go to your own pantry and try to find stuff w/o it! After sugar, it is the most common ingredient in American processed foods.) OTOH, it is easy to live with CD, because there are so many acceptable options to replace wheat — lots of grains, lots of flours. (Unlike, say, a milk protein intolerance… It’s a lot harder to live w/o dairy than it is to live w/o gluten, in my experience, because there just isn’t a great replacement for many dairy items.)

      I hope that helps.


      Love you, Julie!

  2. Given how much you suffered from this, “God, that was interesting!” seems a bit of an insensitive response. But that really was a fascinating post.

    • Not insensitive nor inappropriate at all! Blogs are, essentially, expository writing. There’s interesting expository writing, and there’s dry. I’d much, much rather be the former, thankyouverymuch! Plus, if what you’ve read it interesting, it’ll stick with you. You never know what bit you’ve read, somewhere along the line, will become relevant in conversation or experience… (Nice to see you, Michael!!)

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