Hypoglycemia, Celiac, Adrenal Cortical Insufficiency, and Addison’s Disease

I happened to run across a website the other day, that mentioned the “inner trembling” I often feel, particularly late at night when all else is quiet, about 5 or 6 hours after my last meal. The website lists three different types of hypoglycemia (low blood sugar), but the one that caught my eye was regarding Type 2 (Adrenergic Type):

“After ingestion of glucose the blood sugar rises for the first three hours followed by a hypoglycemic rebound at 4 to 6 hours. Symptoms associated with this type of response are tiredness 2 hours after eating, allergic responses or food intolerances, and shakiness before meals. When blood sugar falls rapidly, the early symptoms are those brought on by a compensating secretion of adrenalin; these include sweating, weakness, hunger, racing pulse and an ‘inner trembling’. This response can be due to adrenal cortical insufficiency or thyroid deficiency” (www.diagnose-me.com/cond/C18558.html).

Hmmmm….. I knew I didn’t have a thyroid problem because my thyroid test results were normal. However, this led me to think about the kidney problems I’d had over the last few months (the adrenals are on the kidneys) and did a little research on adrenal cortical insufficiency, and I found that adrenal cortical insufficiency can be caused by nutritional deficiencies (think: celiac disease and nutrient malsabsorption):

“People with mild adrenal insufficiency may suffer from the same symptoms as those with Addison's Disease. Symptoms can include headaches, muscular aches and pains, joint pains, confusion, impaired memory, low motivation, and many others. Additionally, such people may suffer from an increased susceptibility to all kinds of infections including those caused by bacteria, viruses, parasites, yeast, and fungi” (www.mbschachter.com/adrenal.htm).

This led me to yet another idea: What is Addison’s Disease?

According to the Mayo Clinic:

“Addison's disease is a disorder that results when your body produces insufficient amounts of certain hormones produced by your adrenal glands. In Addison's disease, your adrenal glands produce too little cortisol, and often insufficient levels of aldosterone as well. Also called adrenal insufficiency or hypocortisolism."

This piqued my interest even more because cortisol is the hormone that regulates stress and helps you to sleep. Being a lifelong insomniac, it made me want to know more. Though Addison’s disease can occur at any age, it “is most common in people ages 30 to 50” (Mayo Clinic).

Symptoms include:

• Muscle weakness and fatigue
• Weight loss and decreased appetite
• Darkening of your skin (hyperpigmentation)
• Low blood pressure, even fainting
• Salt craving
• Low blood sugar (hypoglycemia)
• Nausea, diarrhea or vomiting
• Muscle or joint pains
• Irritability
• Depression 

If you were to go into an Addisonian crisis, you would need immediate medical care because it is a sign of acute adrenal failure. It can be triggered by an infection or illness, or physical stress (Mayo Clinic). You might have:

• Pain in your lower back, abdomen or legs
• Severe vomiting and diarrhea, leading to dehydration
• Low blood pressure
• Loss of consciousness
• High potassium (hyperkalemia) (thoughts of my 2nd ER visit when a medical worker popped her head into the treatment room after they did a UA and asked if I was taking a potassium supplement – I was not.)

Have I lost you yet?

Going from Hypoglycemia to Adrenal insufficiency to Addison’s disease?

What is the connection?

Your adrenal glands have two parts: one that produces adrenaline-type hormones and one that produces corticosteroids such as glucocorticoids and mineralcorticoids. Cortisol is one of the glucocorticoids. According to the Mayo Clinic, glucocorticoids “influence your body's ability to convert food fuels into energy, play a role in your immune system's inflammatory response and help your body respond to stress” and the mineralcorticoids “maintain your body's balance of sodium and potassium and water to keep your blood pressure normal.”

What does any of that mean to me? The glucocorticoids play a part in my immune system’s ability to respond (why am I catching every "bug" that walks through the door?) and the mineracorticoids maintain my electrolytes (something I have questioned several times). It may be something, it may be nothing.

What does it have to do with celiac disease? According to the Mayo Clinic: “The failure of your adrenal glands to produce adrenocortical hormones is most commonly the result of the body attacking itself (autoimmune disease). For unknown reasons, your immune system views the adrenal cortex as foreign, something to attack and destroy.”

According to the Journal of Clinical Endocrinology & Metabolism, there is an increased rate of Addison’s Disease (AD) in celiac patients (Peter Elfström, Scott M. Montgomery, Olle Kämpe, Anders Ekbom and Jonas F. Ludvigsson. “Risk of Primary Adrenal Insufficiency in Patients with Celiac Disease” The Journal of Clinical Endocrinology & Metabolism Vol. 92, No. 9 3595-3598, Copyright © 2007 by The Endocrine Society). These authors believe that “there was a statistically significantly positive association between CD and subsequent AD” and they “suggest an increased awareness of AD in individuals with CD.”

What I’ve been talking about so far is primary adrenal insufficiency. I should also mention that there is also a secondary adrenal insufficiency in which your pituitary gland is having problems. In this case, there wouldn't be enough adrenocorticotropic hormone (ACTH), “which stimulates the adrenal cortex to produce its hormones” (Mayo Clinic).

How do we find out one way or the other? There are several tests, including a blood test to measure your sodium, potassium, cortisol and ACTH, and also for antibodies associated with Addison’s disease (AD). Other tests include ACTH stimulation test, and insulin-induced hypoglycemia test (according to the Mayo Clinic, after an injection of insulin, your glucose level should fall and cortisol level should rise). Additionally, a CT scan will reveal any abnormalities on your adrenals.

Treatment for AD would mean “taking hormones to replace the insufficient amounts being made by your adrenal glands, in order to mimic the beneficial effects those naturally made hormones would normally produce” (Mayo Clinic).

Personal conclusion? Perhaps the tremors/trembling I feel inside my body is related to an adrenergic type hypoglycemia which may have been caused by an adrenal insufficiency or even Addison’s disease, which is something that can be found in patients with celiac disease. Perhaps this why I have been getting sick so easily? Regardless, it is another hurdle that I must try to overcome, and something for which I will seek additional answers.

Celiac, IgA, and Dermatitis Herpetiformis

Having been down the road of testing, waiting for results, and then not fully understanding the results and their implications, I thought I might try to clear something up -- particularly with regard to my own diagnosis of celiac disease.

There are several standard tests that should be performed as part of a celiac panel. First, serology tests look for three antibodies that are usually found in celiac patients and should ideally be done at the same time. These tests include:

• anti-tissue transglutaminase (tTG) antibodies
• endomysial antibodies (EMA)
• antigliadin antibodies (AGA)

If any of these indicate the possible presence of celiac, then you automatically become a candidate for a small intestinal biopsy, which, according to most doctors, is the only true defininitive way to diagnose celiac disease. And of course, ideally, these tests must be done before there is any change to your gluten diet.

The NDDIK (National Institute of Diabetes and Digestive and Kidney Diseases) and NIH (National Institute of Health) states:

"The most sensitive antibody tests are of the immunoglobulin A (IgA) class, but immunoglobulin G (IgG) tests may be used in patients with IgA deficiency. Because no one serologic test is ideal, panels are often used. However, the tests included in a celiac panel vary by lab and may include one or more that are unwarranted. The American Gastroenterological Association recommends beginning with tTG in the clinical setting."

In my personal case, I went gluten-free for almost a week before I could get into the clinic to talk to anybody about my idea of the posssibility that gluten might be making me sick. Armed with information printed from the NIDDK and NIH, I saw a nurse practitioner, she read the information, and told me to go back on gluten for the weekend and then we would take the tTG Antibody test because it was supposed to have a success rate of 95%.  Afterall, "tTG is released from the damaged intestine during active celiac disease, and antibodies to TTG are found to be elevated in the blood of most patients with untreated celiac disease" (Dr. Sheila Crowe, New York Times, Jan. 12, 2010).

The EMA test listed above isn't as sensitive as the tTG, but it is highly speicific for celiac, with close to a 100% accuracy.  Many medical providers don't always choose this test because it is more expensive and time-consuming and is also subject to interpretation by whoever is reading the results.  Additionally, when combined with the results of a tTG, people with a milder case of celiac may go unnoticed.  Regardless, I never received this test.

The AGA test is not normally used because it just doesn't seem to be as sensitive or specific enough to used routinely but come in handy for very small children and babies who might otherwise end up with false negative results with the other tests.

Genetic testing is another way to identify specific genes which may determine your likelihood of having celiac, whether you are exhibiting any symptoms or not. It is widely accepted that those people with celiac have the genetic material or human leukocyte antigen (HLA) or something called HLA-DQ2 or HLA-DQ8.  The complicated part is that almost half of all Americans will have this in common and not necessarily have celiac disease (NIDDK).  So it would have to be used in conjunction with other tests, particularly if a family member has been diagnosed with celiac and you want to know if you might end up with it sooner or later.


Well, the tests mentioned above are certainly not the end of the story.  I failed the tTG Antibody test. My results showed < 1.2 while the standard for diagnosis is 4 or greater. Naturally, in a test with such high rate of accuracy, I assumed I must not have celiac disease and maybe I was just gluten intolerent. I was wrong to make that assumption, and several medical providers continued to tell me the same thing. I should have had the whole panel of tests done, not just the one, and I should not have stopped eating gluten before approaching the clinic with my self-diagnosis. At the time, I was just so happy to be feeling better-- and coupled with my own ignorance, I really didn't care. I was feeling better, and that's all that mattered at the time! But alas, I am not a medical professional, and didn't know any better.

So why was my tTG negative? I don't know what second test was used during my last visit to the ER but the doctor mentioned it would show antibodies for celiac if I had it, and it, too, was negative. Of course, I had been gluten free for quite a while when the blood was drawn, so it didn't surprise me that it might be negative. The ER doctor told me that because my symptoms were cross-organ and cross-systems in the body, that the brain was calling the shots and I was probably just anxious. That was at the tail end of my frustration, for lack of a nicer term...

There is something called IgA Deficiciency (Immunoglobulin Antibodies), and somewhere "between 2 and 3 percent of celiac patients have selective IgA deficiency" (NIDDK), and if the tTG or EMA are negative but celiac still likely, then the IgA levels should be measured. Mine never were tested.

So what is Selective IgA Deficiency?  If you are deficient in IgA, then you are deficient in immunoglobulin antibodies.  The "anti-self" anitobodies are anti-endomysial and anti-tissue transglutaminase IgA (American Celiac.org)-- the latter is usually abbreviated tTG.  Mine was negative, or "normal" which I took to mean that I didn't have celiac, right? Wrong.

"To help prevent false negatives, most laboratories will measure the total IgA level at the same time as the TTG IgA level. If you are IgA deficient, then your total IgA level will be very low, and that means there’s a very good chance that the TTG IgA test will be inaccurate (falsely low or normal) because you can’t make IgA antibodies to TTG or gliadin. In this case, your doctor will need to proceed to intestinal biopsies to confirm the suspicion of celiac disease. Occasionally your doctor may order other blood tests, such as TTG IgG or DGP IgG, if they are available" (Crowe, NYT)

According to Immune Disease.com:

"IgA antibodies are transported in secretions to mucosal surfaces and play a major role in protecting these surfaces from infection. Other immunoglobulin classes are also found in secretions at mucosal surfaces, but not in nearly the same amount as IgA. This is why IgA is known as the secretory antibody. If our mucosal surfaces were spread out they would cover an area equal to one and one-half tennis courts, so the importance of IgA in protecting our mucosal surfaces cannot be overstated."

Just because you may not be producing enough IgA, however, does not mean your body is falling apart and you're not producing others to help your body function.  In fact, that is why they call is "Selective IgA Deficiency."  Nobody really knows why or how IgA deficiency happens, but it can be quite common.

So what does IgA deficincy have to do with me?  Well, it could be one reason why my blood tests were normal, and it could also explain my susceptability to respiratory infections which have plagued me most of my life-- everything from chronic allergies, sinusitis, bronchitis, ear infections (as a child), and pneumonia.

"Studies have indicated that as many as one in every five hundred people have Selective IgA Deficiency. Many of these individuals appear healthy, or have relatively mild illnesses and are generally not sick enough to be seen by a doctor and may never be discovered to have IgA deficiency" (Immune Disease.com), but is "much more common in those with celiac disease" (Crowe, NYT).

Though I have not experienced food allergies that I know of (knock on wood), food allergies are also associated with IgA deficiencies. 

"Symptoms associated with food allergies are diarrhea or abdominal cramping. It is not certain whether there is an increased incidence of allergic rhinitis (hay fever) or eczema in Selective IgA Deficiency" (Immune Disease.com)

Well, it certainly wouldn't surprise me!!

Another aspect of IgA deficiency includes gastrointestinal infections and chronic diarrhea which I did not experience, at least not enough for me to notice.  These illnesses occur because IgA protects the mucosal surfaces, and so without it, we become much more susceptible to infection, and in turn, longer periods of antibiotic treatments, which I still immensely disklike.

So how do you diagnose IgA Deficiency?  Well, if you have any of the symptoms I have discussed above, you are probably a candidate for testing-- with or without a celiac disease diagnosis.  The test is done through a blood sample, and is often done with a complete blood count (CBC), measurement of lung function, and a urinaylsis (Immune Disease.com):

"Other tests that may be obtained in specific patients include measurement of thyroid function, measurement of kidney function, measurements of absorption of nutrients by the GI tract, and the test for antibodies directed against the body’s own tissues (autoantibodies)."

Currently, there really isn't any treatment for low IgA, but in my case, it might just help to answer a few more questions.  If I get an infection (kidney or otherwise), I take appropriate antibiotics, whether I like it or not.  If I don't repond well to the antibiotic (which I apparently don't always), there is the alternate possibility of "replacement gamma globulin" (Immune Diseases.com).

During this research I also learned why my allergy shots I took for so many years didn't work.  According to the Immune Disease website, "It is not known whether immunotherapy (allergy shots) is helpful in the allergies associated with Selective IgA Deficiency, although there is no evidence of any increased risk associated with this therapy in these patients."  Hmmm....

What to do about an IgA Deficiency?  Stay in touch with your doctor.  You don't want to end up with problems later down the road for something else that crops up due to a low or non-existent IgA.   It could even progress to something called Common Variable Immunodeficiency, which in part, according to the Merck Manual, sounds suspiciously like celiac diease.

The moral of my story this time is that the IgA Deficiency may have led these high-accuracy tests to yield false negative results which is one of the reasons why that test should not be performed alone, such as was mine.   Additionally, a person has to be eating a lot of gluten (not just a little or some, but a lot) at the time the test is performed.  The "weekend" that I added gluten back into my diet was not a gluten-filled weekend.  In fact, I was eating minimal amounts because it was a Christmas week ahead and there were many recitals and things I needed to attend to and did not want to be sick to my stomach during that week.  I felt if I ate a couple of pieces of bread, I was okay.  Again, in my own ignorance, I was wrong.  Also, if there has been less damage to the small intestine (a lesser degree of villous atrophy), the test may be negative.

And what does all this have to do with dermatitis herpetiformis?  I never had the small intestinal biopsy because I have dermatitis herpetiformis.  According to the New York Times and Dr. Sheila Crowe (a professor in the division of gastroenterology and hepatology in the department of medicine at the University of Virginia), the "exception to this rule occurs when a patient has a skin condition known as dermatitis herpetiformis, in which case a characteristically abnormal skin biopsy result can subsitute for checking intestinal biopsies" (New York Times).  This was also confirmed by my doctor, who has been the most helpful in diciphering all the clues and helping me understand my diagnosis.

So I don't know if I am actually IgA deficient, but it sounds like it might be a good thing to know, particularly in the long run.  It does raise another question for me which I can probably answer myself: Would an IgA Deficiency improve with a gluten-free diet? My answer: probably not.

Diagnosis Confirmed!

My first visit with the internal medicine specialist was a little stressful for me, but one of relief, as well.  It was stressful because I didn't really know where to begin.  I was having so many symptoms and they seemed to cross multiple systems in the body.  But it was also one with relief because for the first time in thirteen weeks, the doctor looked at me like he was genuinely interested in what was going on, and just as curious as myself as to the cause!

We discussed several things that were happening-- from the rapid pulse at random (it was 114 in his office at the time), the drug reactions (which I had never had prior to all of this), to the fatigue, the heart palpitations, and even the rashes on both my arms.

The best part about the visit was that there was an answer that would explain several (if not most) of the symptoms: Celiac Disease.  But how could I have CD with the blood tests coming back normal?  His answer was that I had Dermatitis Herpetiformis (DH) and that in order for the blood tests to be positive for CD, I would have had to be on a high (very high) gluten diet for 2 to 6 weeks!  And each time I was tested, I had either been off gluten for a while, or on a very low gluten diet.  The DH was definitive enough, and he told me that experts do not recommend a small intestine biopsy as long as that rash is present.

My DH had been present for 5 years, and nothing (and I do mean nothing!) could make it go away-- whether it was OTC medications, or prescribed.  It will take some time to heal, but it is gradually softening and diminishing.

The internist did order other tests, including more thyroid tests, a 24-hour UA, a DEXA scan (for bone density), a Holter Monitor, and a stress-echocardiogram to find out more about why my heart might feel so weak, or have palpitations.  He also suggested I continue my vitamin supplements, particularly D3, K, Iron, and Calcium/Magnesium.

In the meantime, I joined a couple of online support groups for CD and found an immense number of similarities in symptom stories, particularly with heart palpitations, weakness, and fatigue.  It seems as though the medical community does not have any direct answers regarding the connection between the heart and CD, but keep in mind that CD is a cross-system disorder and can affect any system in the body in a number of ways.  Perhaps the medical community just doesn't want to say one way or the other... playing it safe in their eyes, but not so for the CD community.

My thyroid tests ended up being normal, and at this point I don't know the results of the 24-Hour UA, the DEXA scan, nor the Holter Monitor results (which I wore for 48 hours).  During my time wearing the monitor, the palpitations were mostly quiet or so faint I couldn't be sure it was what I was feeling, so I guess it will be up to the experts to decide.

Happily, my stress-echocardiogram showed "one beautiful-looking pump" (cardiologist's words) with nothing wrong, whatsoever, that he could see.  My blood pressure was great (108/78), my cholesterol was great (162), and there was no visible reason to suspect anything wrong with my heart.  Though it did make me feel better, it does not take away the nervousness when something feels weird with my heart.  Perhaps it is my body's way of dealing with such a vital organ.  I can handle anything with any other part of my body, but my brain does not like it when my heart doesn't feel normal.

At the least, I can say that my heart seems to have settled down a bit and is in a mostly quiet mode these past few days.  Let's hope it continues.

Chronic Fatigue Syndrome and Celiac Disease

I found an article on http://www.celiac.com/ regarding chronic fatigue syndrome and CD. I Googled this because I was wondering if there may be a connection to my own problems of severe fatigue and general malaise.

The article is called "Chronic Fatigue Syndrome (myalgic encephalomyelitis or ME, PVS, post viral fatigue syndrome or PVFS)" and discusses the connection between chronic fatigue syndrome (CFS) and CD. A British study determined that:

"Mysterious symptoms, including muscle weakness, wasting, and poor coordination and balance may be due to an undiagnosed allergy to wheat, barley, oats or rye, according to new research which may have implications for some people with ME...A study of 53 patients with these and other unexplained neurological symptoms, found that nearly three-fifths of them had antibodies to gluten in their blood...none of the patients in the Sheffield group had been diagnosed with celiac disease but when samples of tissue were removed from their gut, more than a third showed evidence of the disease or inflammation of the middle and lower gut."

So what are the symptoms of chronic fatigue syndrome? According to the Mayo Clinic, the following symptoms are characteristic of CFS: Chronic fatigue syndrome has eight official symptoms, plus the central symptom that gives the condition its name:

• Fatigue
• Loss of memory or concentration
• Sore throat
• Painful and mildly enlarged lymph nodes in your neck or armpits
• Unexplained muscle pain
• Pain that moves from one joint to another without swelling or redness
• Headache of a new type, pattern or severity
• Unrefreshing sleep
• Extreme exhaustion lasting more than 24 hours after physical or mental exercise

Additional signs and symptoms:

• Abdominal pain
• Allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
• Bloating
• Chest pain
• Chronic cough
• Diarrhea
• Dizziness, balance problems or fainting
• Dry mouth
• Earache
• Irregular heartbeat
• Jaw pain
• Morning stiffness
• Nausea
• Chills and night sweats
• Psychological problems, such as depression, irritability, anxiety disorders and panic attacks
• Shortness of breath
• Tingling sensations
• Visual disturbances, such as blurring, sensitivity to light, eye pain and dry eyes
• Weight loss or gain
  
  "If you have chronic fatigue syndrome, your symptoms may peak and become stable early on, and then come and go over time. Some people go on to recover completely, while others grow progressively worse (Mayoclinic.com)."

Wow!! Any of those symptoms sound familiar? I realize that I have every one of those symptoms, and also realize that it is most likely related to CD. I found yet another article on the connection between CFS and CD on BNet entitled "Chronic fatigue syndrome: oxidative stress and dietary modifications - Brief Article" by Alan C. Logan and Cathy Wong (Alternative Medicine Review, Oct. 2001):

"Chronic fatigue syndrome (CFS) is an illness characterized by persistent and relapsing fatigue, often accompanied by numerous symptoms involving various body systems. ...recent evidence suggests celiac disease can present with neurological symptoms in the absence of gastrointestinal symptoms; therefore, celiac disease should be included in the differential diagnosis of CFS.

"The prevalence of CD may be higher among CFS patients than in the general population."

This article states that in fact, CD mimics CFS and that all patients suspected to have CFS should also be tested for CD. While I was blaming age and hormones (or lack thereof) on my increasing forgetfulness, inability to concentrate, tremors or trembling and muscle spasms, tingling and numbness -- these neurological problems may indeed be part of CFS, and brought on by a clinically-silent case of CD before the digestive problems appeared.

So it appears that I have diagnosed myself with chronic fatigue syndrome, and that it is yet another manifestion of celiac disease. Next question: Why can't I shake myself of CFS with a gluten-free diet? And has my diet truly been gluten-free?

Week 1: G-Free Recap

Well I'd like to say that I spent the entire last seven days completely g-free, but this has not been the case. Though I immediately went g-free after the tTG blood draw (for celiac disease) last Monday morning, it took several days before I actually felt my energy returning and the stomach aches begin to go away. I was experiencing many of the symptoms during the two months prior to diagnosing myself.

Just when I thought I was finally g-free again, Christmas Eve came and went. I knew I had a small amount of wheat for dinner on Christmas Eve, but thought it might not affect me so much and at worst might get a stomach ache for a day or so, but tolerable. Christmas Day came and went and I ate freely of the candies in my stocking, all of which I thought were gluten-free. As it turns out, either something was not g-free, or the effects of Christmas Eve were beginning to take its toll, because by Christmas night I was not feeling too well, and it lasted all weekend long.

I spent the weekend profoundly tired-- it was all I could do to get out of bed and move around. I didn't want to do anything else. I could have spent the entire weekend lying in bed watching TV-- I had no energy, and was experiencing CD-related heartburn, stomach aches, bloating, nausea, flushing sensations, tingling and numbness; you name it. I didn't know whether it was the candy, or if something I had prepared was not g-free, even though I prepared all the Christmas Day meals myself and was very careful about every ingredient. The more I thought about it, the more I realized it had to be something in the candy, specifically, the mini-peppermint patties (which I love!).

I swore off the candy and gave it all to my kids, and began to feel better within 24 hours. So it is my hope that Week 2 will be much more "normalized" in the world of g-free eating, and will diligently stay away from unknown gluten food sources to the best of my abilities. We are to go to a friend's house this coming weekend, and I hope to be as gracious as can be in declining any food treats, if necessary!

Celiac Disease is an Autoimmune Disorder

Celiac disease is an autoimmune disorder. According to the National Institute of Health (NIH), "An autoimmune disorder is a condition that occurs when the immune system mistakenly attacks and destroys healthy body tissue" (Medline Plus).

In a healthy person, our immune system is protected from harmful substances by white blood cells. That is why when we have an infection, our white blood cell count is elevated. These white blood cells are sent out to destroy the bad guys (antigens like bactiria or viruses or other harmful substances in our body). But if you have an autoimmune disease, like celiac disease, your immune system can no longer tell the difference between what is normal and what is an antigen. So the body sends out the signal to destroy the wrong thing-- in this case it destroys normal body tissue.

This is similar to when the body has an allergic reaction, but with an allergy, the body is reacting to an external substance, while with an autoimmune disorder, the body reacts to normal body tissue.

Nobody really knows what causes the immune system to lose its ability to determine healthy body tissue from antigens, but there seems to be a genetic prospensity that tends to single some people out while ignoring others.

According to the NIH, autoimmune dieseases will manifest various symptoms that are specific to the disease, but there are some that are common, such as:

• Dizzines
• Fatigue
• General ill-feeling
• Low-grade fever

Celiac disease is a genetic autoimmune disease in which gluten and other proteins (wheat, barley, and rye) damage the lining of the small intestines. There is no cure, and at this point can be treated only through strict dietary measures. Even trace amounts can cause continued damage to the gut, with or without symptoms. This drawing which I borrowed from the Celiac Disease Foundation shows the interior wall of the small intestine. It is lined with tiny hairlike villi which absorb the nutrients from food as it passes through the intestines. Celiac disease flattens these villi, making it more difficult for us to get the nutrients we need, and in turn-- causing a whole host of other problems.

According to an article in The North Jersey News:

"There are three necessary components to celiac... You need to carry the gene that predisposes you to the disease. You need exposure to the gluten, and you need a trigger mechanism. Right now we don’t really know what that trigger might be, but once it’s triggered into action, it doesn’t go away" (North Jersey News, Dec. 1, 2009).

The Celiac Disease Foundation states that "Celiac disease affects more people than all of these disorders combined" and that "97% of people with Celiac Disease go undiagnosed. Celiac Disease is one of the most common genetic conditions in the world. Celiac is a multi-symptom, multi-system disorder, activated by eating gluten - proteins found in wheat, rye and barley. Symptoms vary and are not always gastrointestinal." So just because you aren't having a stomach ache or some other digestive issue, does not necessarily mean you are free from having celiac, especially if you have a family history of digestive troubles.

When in doubt, check it out!

Still trying to figure it out...

I have learned to tell the difference between a gluten-reaction stomach-ache and anything else. Today is definitely one of those gluten-reaction days, although I have not so far been able to pinpoint the source. I have been experiencing overwhelming fatigue and ongoing stomach pain.

Sometimes I get a reaction fairly quick, and sometimes it can take up to two days before it appears. To the best of my knowledge, I ate completely g-free yesterday, which means today's reaction is likely a reaction from Christmas Eve.

Something else I have learned is that when these types of symptoms appear (stomach pain; nausea; flushing or tingling sensations), it is usually the tail-end of whatever I ate, and will pass-- hopefully sooner than later.

The only thing I can trace over the past couple of days that may have affected my digestive system is a small amount of whole wheat that I ate on Christmas Eve. Since then, I have also eaten a number of small Christmas candies (gluten-free) that may also be triggering some kind of reaction to another ingredient-- it is difficult to tell. What I have learned over these past few days is that when in doubt, skip it. It won't be worth the pain later.

Is hunger part of Celiac?

During the past year, somehow I managed to pack on almost 20 extra pounds to my relatively small frame. Outside of pregnancy, that is something I'd never done in my life in 40-something years. I couldn't figure it out. I was always hungry, no matter what I ate-- and I wasn't really enjoying the food I was eating-- I was just hungry. I tried all kinds of "diets" but either the extra pounds just wouldn't come off, or I couldn't concentrate because I was so hungry.

I have always been one of those people who get sick when they don't eat. I could never fast for more than a couple hours without becoming sick to my stomach. I would become extremely lightheaded and feel faint. This has persisted throughout my life. Some doctors told me I just had an erratic blood sugar problem-- sometimes it was too low, sometimes too high. Yet, even when I ate, the food never sat well in my stomach-- there was always pain and bloating, and the usual indigestion. After a little while I would start feeling that sick feeling that usually meant it was time for me to eat again, and the whole process would start over.

I believe people with untreated celiac can experience what they think is profound hunger. Their bodies are telling them to eat because they are not getting the nutrients they need, and can end up malnourished, in spite of the constant eating.

As for me, I kept attributing "symptoms" like this as just part of aging-- gaining the weight around the middle, for example; the thinning hair; the inability to concentrate; irritability. I always thought of the character "Ouizer" played by Shirley MacClaine in the movie "Steel Magnolias." She was such a negative character, but at one point she says in her defense, "I've just been in a very bad mood for 40 years." I felt like that a lot! :)

I found on the website Celiac.com an article by Melissa Croda entitled "Celiac Diease and Obesity: There is a Connection." Croda believes that malabsorption can create hunger pains in people with CD, and believes CD was the reason behind her own problems with obesity:

"When someone with celiac disease eats foods that contain gluten it results in damage to the surface of the small intestine and destruction of their nutrient-absorbing villi. This can lead to leaky gut and an inability for them to absorb vital nutrients from their food."

"With celiac disease, however, the body is unable to absorb the necessary nutrients, which causes some peoples bodies to become a super-efficient machine that begins storing as much fat as possible in order to survive. This nutrient deficiency convinces the body that it is starving to death, which sends it into starvation-mode. Since humans need a certain percentage of body fat reserves to stay alive—and because it takes more work for the body to burn fats than carbohydrates—a body that is in starvation mode tends to crave carbohydrates and more efficiently convert them to fat for later use."

And thinking back to my own family history, I found this statement by Croda of particular interest: "Roughly ten percent of celiacs either have Type I diabetes or might develop Type II diabetes." My mother developed Type II diabetes, as well as one of my sisters. My mother's family also had a history of Type II diabetes.

Once diagnosed, Croda lost over 100 pounds and when asked how she did it, she said "I explained my celiac disease diagnosis and gluten-free diet to them, and how the diet has made me not feel hungry for the first time in my life—due to the fact that I am now absorbing nutrients properly."

Additionally, Croda speaks of six extremely obese people who after talking to her, went to their doctors and were all tested for CD, and surprisingly, all of them were diagnosed with CD! She says, "Immediately after going on the gluten-free diet they all experienced a decrease in hunger and massive weight-loss. For the first time they were eating only when their bodies were truly hungry, instead of eating too much due to starvation signals caused by malabsorption."

There is always the theory that this is why high-protein/low-carb diets tend to work well for a lot people. Maybe they are also gluten-sensitive, and by removing the carbohydrates they happen to be removing a good portion of the gluten as well. Obviously, this is not the answer to dieting, and a high-protein diet is not a healthy long-term alternative for any person, let alone someone with CD.

But it is nice to know that there may be explanations out there other than "behavior" issues or lack of will power. True, eating healthier may put you on the right path, but until the right suspect is brought in for questioning (gluten), the CD patient is going to ultimately feel like the "yo-yo" dieter who gains the weight right back, and then some. It is nice to know there is another answer.

Symptoms of Celiac

There are so many symptoms that can be connected with CD, it seems almost impossible to diagnose. It is no wonder so many people do not receive a proper diagnosis until their particular combination of symptoms can no longer be ignored.

I found a website called Gluten Free Works, which has an extremely comprehensive list of symptoms of Celiac by body sytem. I have listed here only the symptoms that pertain to me, or to my children:

• Weight Gain (unexplained): I gained almost 20 pounds in a year without any significant changes in my diet. I thought it was just my age.
• Abdominal bloating
• Abdominal pain
• Nausea
• Heartburn
• Allergic Rhinitis
• Urticaria, chronic (hives)
• Eczema
• Koilonychia (Thin nails that flatten, ends progressively turning up instead of down): I have noticed over the past three months at least, that I cannot seem to grow my fingernails. They are either too soft or too brittle. Lately, the tips of my nails (not all of them) are bending upward. So I cut them and they are extremely short.
• Nails, Dry and brittle that chip, peel, crack or break easily
• Seborrhea
• Thin hair: My hair has always been thin but lately I seem to be losing even more hair.
• Anxiety
• Chronic Fatigue Syndrome
• Depression
• Headaches
• Inability to concentrate
• Insomnia
• Irritability
• Migraine
• Tremors
• Nightblindness
• Urinary Tract Infection (Kidney infections in my case)
• Amenorrhea
• Late Menarche (I was 15 years old)
• Complications during pregnancy: During my first pregnancy, I lost more weight than I gained. By my fourth pregnancy, I was so extremely ill I was very nearly ketotic. I could not tolerate either food or water.

Many of the above symptoms I have also seen in my children, plus these additional symptoms:

• congential anomalies
• Autism and learning disorders
• ADHD
• Gums bleeding/swollen (red in children)
• Lactose intolerance
• Asthma

I am fairly certain the majority of my children also have CD. Am looking forward to finding answers.

Muscle Spasms and Celiac Disease

I have always been a very pale, colorless person. It's why I wear so much makeup! Without my makeup, I am all one color, with the exception of my eye color.
According to the Celiac Sprue Association, pallor is one of the many symptoms of Celiac Disease. Here is a list of symptoms that they say the doctor will look for:

• emaciation
• pallor (due to anemia)
• hypotension (low blood pressure)
• edema (due to low levels of protein, [albumin] in the blood)
• dermatitis herpetiformis (skin lesions)
• easy bruising (lack of vitamin K)
• bone or skin and mucosa membrane changes due to vitamin deficiencies
• protruding or distended abdomen (intestine dysmotility)
• loss of various sensations in extremities including vibration, position and light touch (vitamin deficiency)
• signs of severe vitamin/mineral deficiencies which may include:
  -diminished deep tendon reflexes
• muscle spasms (magnesium and/or calcium deficiency)
• bone tenderness and bone pain (due to osteomalacia)

I find this an interesting list because the reasons behind the symptom are also listed. For example, I have always had fairly low blood pressure, and that is on the list as "hypotension." Besides the strange rashes, I also bruise quite easily ("lack of vitamin K"), and the muscle spasms are also present ("Magnesium and/or calcium deficiency").

One of the symptoms that has been bothering me more and more are the muscle spasms at night. Prior to the worst of my illness (prior to going to the ER) I had been having weird spasms and tremors when I went to bed at night. Most of the time I felt it in my neck, especially while laying on my left side. For the past couple of months, the tremors/spasms have increased to the point of lasting longer than a minute or so. They will also tend to travel around, sometimes in my lower abdomen, sometimes in my chest, sometimes in my neck, regardless of my position while lying down.

Last night, I was almost asleep when I noticed the spasms again, but this time it lasted much longer and seemed to encompass my whole esophagus (chest area) and up and down my throat and neck. It just kept going and going. But I was so very sleepy, I don't remember if I fell asleep or how long it continued.

Tomorrow I have an appointment at the clinic, in which I will discuss my 'findings' over the past several days, and discuss these spasms and tremors.

Can a person with CD take vitamin supplements, or is it fruitless since the intestines are not absorbing nutrients anyway??

Numbing/Tingling sensations with Celiac

Last night, the girls and their dad really wanted pancakes for dinner. I didn't have any gluten-free pancake mix yet, and so they went to IHOP, and loaded up on pancakes. This morning, every one of the girls was sick. Note, this is not the first time-- we have always gotten sick after eating there, and now I suspect it is the overload of gluten in those giant pancakes!!

Today has been a good day for my stomach. With only minimal stomach soreness, I added a little more to my 'bland' diet to test out eating a little closer to normal, all the while staying gluten-free.

Grocery shopping is going to need some revising. I went to Wal-Mart to pick up a few things and check out what they might have that is gluten-free. The store is so full of so many tempting items-- things that are small, quick, tasty-- and 99% not gluten-free. I won't be able to take the kids through the grocery aisles. It will be best to steer clear from the temptations, or do the grocery shopping at a smaller, more selective store. I really wish there was a gluten-free store in town.

I discovered a couple more wonderful websites today. One is called Gluten Free Mommy, and is full of terrific recipes and ideas that I can't wait to try! I have been busy scouring through a couple of gluten-free recipe books that I have, as well as many recipes online. I really like the Gluten Free Mommy because her recipes are the closest to "normal" that I have seen. For example, just when I was thinking I would have to give up our traditional holiday green bean casserole this Christmas, I found her website and lo and behold, there is a recipe for it! Yay!! Thank you, Gluten Free Mommy!!

Another great website I came across today is called The National Foundation for Celiac Awareness. It is full of all kinds of information and even has a Celiac Disease symptoms checklist with you can take to find out if you might have CD or gluten intolerance.

Something that I found interesting on the website: Celiac Diseas Symptoms Can be Elusive--

"There are more than 300 symptoms of celiac disease, and symptoms may vary amongst different people. One person might have symptoms of diarrhea and abdominal pain, while another person has irritability or depression. Some patients develop celiac symptoms early in life, while others feel healthy far into adulthood. Some people with celiac disease may not show any symptoms. These differences can make celiac diagnosis extremely difficult resulting in 95% of celiacs undiagnosed or misdiagnosed with other conditions."

They point out that it is important to be treated because complications can develop that include other autoimmune diseases,thyroad disease, osteoporosis, and even cancer. The website lists several different symptoms, including the following:

• Bloating or Gas
• Diarrhea
• Constipation
• Fatigue
• Itchy Skin Rash
• Tingling/Numbness
• Pale Mouth Sores
• Joint pain
• Delayed Growth
• Poor Weight Gain
• Thin Bones
• Infertility
• Headaches
• Depression
• Irritability
• Discolored Teeth

I was particularly interested in the "Tingling or Numbness" because this is a symptom that seems to throw so many of the healthcare workers off. According to this website, "Tingling and Numbness are abnormal sensations that can occur anywhere in your body. It is a sensation of tingling, pricking, or numbness of a person's skin with no apparent long-term physical effect. It can also be described as 'pins and needles' or referred to as a limb being 'asleep.'"

When I was experiencing this sensation, it usually happened in both my hands and feet, sometimes including my forearms, and from the knees down. Sometimes I could even feel it move in waves through my body to my extremeties. It was as if my hands and feet were trying to fall asleep. If you've ever had your blood pressure taken and the cuff begins to tighten, you feel the congestion in your arm and your wrist may feel numb-- that is often how I felt. It was most frequent during the first 4 or 5 weeks of my illness.

PLEASE SEE THE WEBSITE FOR COMPLETE INFORMATION!

More Research

What kinds of tests are involved with the diagnosis of Celiac Disease besides a biopsy?
The Celiac Sprue Association states that a number of tests should be done. Sometimes they are referred to as the Celiac Blood Panel and will consist of (but not limited to):
Serologic Tests:

• EMA (Immunoglobulin A anti-endomysium antibodies)
• AGA (IgA anti-gliadin antibodies)
• DGP (Deamidated gliadin peptide antibody)
• tTGA (IgA anti-tissue transglutaminase)
• Tolerance or Measure of Digestion/Absorption Tests
• Lactose tolerance test.
• D-Xylose test.

Lab Tests Online suggests the following tests to determine the extent of the severity as well as damage done to other organs by CD:

• CBC (complete blood count) to look for anemia
• ESR (erythrocyte sedimentation rate) to evaluate inflammation
• CRP (C-Reactive protein) to evaluate inflammation
• CMP (comprehensive metabolic panel) to determine electrolyte, protein, and calcium levels, and to verify the status of the kidney and liver
• Vitamin D, E, and B12 to measure vitamin deficiencies
• Stool fat, to help evaluate malabsorption

Additionally, Anti-tTG, AGA, and/or EMA tests may be ordered at intervals on patients to monitor the effectiveness of a gluten-free diet.

The good news for me, is that several of these blood tests were taken when I was in the ER and at subsequent visits to the clinic, so perhaps they may shed some light on my particular case. Also, because I have had no gluten (that I know of) for three days now, I may not have to go back on a gluten diet. At least, that is my hope!!
The same source also states:

"If the person being tested has not consumed any gluten for several weeks prior to testing, then celiac disease tests may be negative (although this may require many months of gluten-free diet). "

The Journal of The American Academy of Physician Assistants points out that:

• Instead of having diarrhea, many patients with celiac disease may be asymptomatic or report atypical GI complaints such as constipation, abdominal pain, or lactose intolerance.

• A substantial number of patients with celiac disease initially receive a diagnosis of irritable bowel syndrome.

• Most patients with celiac disease never receive a diagnosis.

The Journal also states that the disease is roughly 3 times more prevalent in women, and that a large number of patients actually receive a diagnosis of IBS before CD is identified.

It is nice to know that even those who are not showing active symptoms of CD can be tested if they have a close relative with CD. If mine ends up being positive, I want my kids tested, and it may give incentive for my siblings to also be tested.




PLEASE VISIT THESE WEBSITES FOR COMPLETE INFORMATION:
Celiac Sprue Association is protected by Copyright © 2008 Celiac Sprue Association/United States of America, Inc. (CSA)

Lab Tests Online is protected by Copyright © 2001 - 2009 by American Association for Clinical Chemistry.

The article from the Journal of American Academy of Physicians Assistants was published in December, 2009.

Researching Celiac Disease

According to the National Digestive Disease Information Clearinghouse National Institute of Health), Celiac Disease is genetic, meaning it runs in families.

I received an email from my mother earlier today, and she happened to mention that one of my sisters had been to visit my parents over the weekend. My sister, who has been dealing with digestive problems (and liver), became ill after eating at a business dinner party the night before. Usually very careful about what she eats, something was slipped into her food that may have had traces of something to which she is very sensitive or allergic. Her son (my nephew) has also been suffering from something that sounds like colitis.

My brother was recently diagnosed with ulcerative colitis, and my mother has suffered with chronic digestive problems for many years. Her cousin also has a very restricted diet, and the list of relatives with digestive problems goes on. She was thinking there may be a genetic link that makes us all susceptible to these types of problems. I believe there is, and I want to know if it is Celiac Disease, or gluten intolerance (treated the same).

Though people may test positive for CD, they don't always develop a full-blown version. According to the source above, "Sometimes the disease is triggered -- or becomes active for the first time-- after surgery, pregnancy, childbirth, viral infection, or severe emotional stress."

Well, that kind of says a lot for my personal story: My husband suffered a massive heart attack early in the year, and we almost lost him. It was so bad it took 12 shocks to stabilize the heart, and he spent a week in the ICU. We had no incoming money and no savings to rely on, and no health insurance. During the following months we encountered one serious setback after the other. Every week I thought I was going to have a nervous breakdown. After the heart attack, the cardiologist told me I might need help with Post Traumatic Stress Disorder. Maybe my level of stress triggered my digestive issues.

The same source also lists 12 other symptoms that can accompany CD:

unexplained iron-deficiency anemia

fatigue

bone or joint pain

arthritis

bone loss or osteoporosis

depression or anxiety

tingling numbness in the hands and feet

seizures

missed menstrual periods

infertility or recurrent miscarriage

canker sores inside the mouth

An itchy skin rash called dermatitis herpetiformis

Ever since my trip to the ER in late October I have been telling doctors and nurses that my extremities were tingly and numb!! They usually look at me in a very puzzled way. Only one nurser practitioner brought up the possibility of a wheat allergy or Celiac Disease. I have seven of those symptoms listed above. Dental enamel defects are also common (something I've had all my life). If that is not enough, when I was small people were always telling me I was malnourished. Even into adulthood doctors would tell me to take vitamins because I always seemed deficient, and had a hard time keeping my iron levels up.

On top of that, in an effort to find out what happened to my "missing periods" (as listed here in the symptoms) I underwent an endometrial biopsy just yesterday. I'd say it is time to get back to that thought of possible CD again.

Other health problems that people with CD may have include:

• type 1 diabetes
• autoimmune thyroid disease
• autoimmune liver disease
• rheumatoid arthritis
• Addison's disease, a condition in which the glands that produce critical hormones are damaged
• Sjogren's syndrome, a condition in which the glands that produce tears and saliva are destroyed.
  
  

  
  "Long-term complications include malnutrition-- which can lead to anemia, osteoporosis, and miscarriage, among other problems-- liver diseases, and cancers of the intestines."
  

Currently, I am faced with the blood tests. In order to test for CD, I will have to return to a gluten diet, which I am not looking forward to, but willing to do to get a definitive diagnosis.


The NDDIC is a service of the National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health. Please visit the website for complete information.