PAP Tests, Low Blood Counts, Autoimmune Disease

Year 2, Month 1:

Just over two years ago it was determined through a routine PAP test that my cells were a little abnormal, but nothing to worry about. The abnormal cells were what is known as ASCUS cells: Atypical Squamous Cells of Uncertain Significance. In other words:

“cells that cover most of the external part of the cervix (squamous cells-ASCUS) or in the cells that cover the lining of the uterus opening and canal (glandular cells-AGCUS) for which the cause is undetermined.” (Lab Tests Online)

They told me to come back in a year for another exam.  I didn’t worry about it. In fact, I forgot about it.

A year later, I was in a new town with a new medical clinic. I was retested for the PAP as previouly suggested, and when it came up abnormal (again), I was immediately retested. This time, not only were my cells abnormal, but they were changing. They had upgraded themselves from ASCUS to LGSIL (Low-Grade Squamous Intraepithelial Lesions, "lesions" meaning "abnormal cells") – not necessarily cancerous, but scary nonetheless.


Time to Backtrack.....


What is a PAP test anyway? It is an examination of the cells collected from the cervix to detect cancer or abnormal cells that could possibly lead to cancer. This type of cancer (cervical) is usually slow-growing and may not have any symptoms at all.  The PAP test can also identify noncancerous conditions, such as infections and inflammation (National Cancer Institute, 2010).

What do my results mean? There are many types of cells and results. Without getting too technical, let me just briefly explain the most common cell types and results. For more detailed information, please visit the National Cancer Institute website or Google other reputable sources.

For most people, the results will either be “normal” or “abnormal” such as mine was two years ago. I was told not to worry because “abnormal” does not necessarily mean cancerous, and in fact, “abnormal” rarely becomes cancerous (National Cancer Institute).

Abnormal (Squamous) Cell Types:

ASC, ASC-US:  Initially, my “abnormal” cells were ASC (atypical squamous cells), and more specifically, ASC-US (atypical squamous cells of undetermined significance, as mentioned above).  These types of abnormal cells are fairly common, and can be related to HPV infection (Human Papilloma Virus).

LSIL, LGSIL: Climbing up the worry ladder, the next step is LSIL (LGSIL): Low-Grade Squamous Intraepithelial Lesions. This is what appeared in my test results the following year and indicated changes in the size and shape of the cells. It usually means “mild abnormalities caused by HPV infection” (National Cancer Institute) which carries the potential to become cancer.

HSIL, HGSIL: Next up is HSIL (HGSIL): High-Grade Squamous Intraepithelial Lesions. At this stage, there are more obvious changes in the size and shape of the (precancerous) cells and they don’t even resemble normal cells anymore.

SQUAMOUS CELL CARCINOMA: Following HSIL cells is simply Squamous Cell Carcinoma: it becomes cancer.


Back to the Story...

In 2011, I was referred to a specialist who performed a colposcopy and biopsy. At the same time, blood tests were run by my regular medical provider, and it was found that my blood count was low. My red blood cells were low, and my white blood cells were even lower. Ruling everything else out, I was given three likely causes: Cancer, HIV, or Lupus (or some other autoimmune response).

"Autoimmune response?"  Haven't I been barking up this tree for long enough yet?  I have had numerous symptoms pointing to an autoimmune problem for over two years now, and we still can't figure this out?

What was going on with my body? First it was thought to be Celiac Disease, and then a gluten intolerance. What was happening to me? My system was so down that now my blood count was low and my last four PAP tests were all abnormal, each one progressively worse.

The only good news seemed to be that results of the colposcopy and biopsy indicated that the cells "appeared" to be on the mend. They were trying to get better. I was told to report back in six months for another PAP test….

This time I took it seriously.

But what about the low blood count? More blood tests were done, HIV ruled out, and lupus not likely. I was sent to a hematologist at the local cancer clinic. Talk about scary. A cancer clinic? Really? If it wasn't HIV or lupus, was it cancer?

More blood tests were done by the hematologist, and suddenly, I was in the clear. Somehow, my blood cells also appeared to be on the mend. They were finally increasing. I was told to take iron pills to keep the red blood cells at optimal levels.

Fast forward to 2012… I got a phone call from the clinic after my most recent PAP and was told to come in for blood tests again.  I knew they were checking for infection of some kind, and since I had not yet heard the results of my PAP, I figured it probably was not good news. Sure enough, it was “abnormal” again.  It was my fifth "abnormal" PAP in a row.

…and... the CBC revealed low blood counts.  Back to square one.


PAP Tests and Autoimmune Disorders.....

So what does all this have to do with Celiac Disease or gluten intolerance?

Is there a connection between abnormal PAP results and Celiac? Well, actually… Yes, not just Celiac, but autoimmune disorders in general. That means your immune system sometimes attacks the wrong cells in the body, causing inflammation and other problems.

In fact, just last year, the National Institute of Health posted a study about the “Association of Pap smear abnormalities with autoimmune disorders” (Pak j Biol Sci 2011 May).

This study suggested that “there might be an association between immunological disorders and cervical premalignant and malignant abnormalities” (Esmaeili H, Ghahremanzadeh K.; NIH). Though most of their focus was on lupus (SLE) and rheumatoid arthritis (RA), they found that “Frequency of abnormal Pap smear testing was significantly higher” (boldface added) among those women affected with an autoimmune disorder, yet not statistically different between the autoimmune disorders. (Full Text here)

Lupus is probably one of the most well known and studied autoimmune diseases, although Celiac Disease occurs in 1 in every 133 people.  According to Johns Hopkins Hospital, “studies have shown an elevated risk of cervical cancer and abnormal PAP tests in women with lupus”  and I can see the logic.  When your immune system is compromised, it makes it harder for us to fight off viruses including HPV, which can lead to cervical cancer.

It seems obvious that something is happening between autoimmune disorders and cervical cancer and/or abnormal PAP results.


Blood Counts.....

And what about the low blood counts? Is there a connection with Celiac or gluten intolerance?

It just so happens that just the other day, I ran across an article "The Connection Between Gluten Intolerance and Low Platelets" which states that:

when "gluten is ingested, the immune system goes to work fighting off what it believes to be a harmful invader. In those with an undiagnosed intolerance to this protein, the immune system is continually in 'fight' mode, which begins to cause a host of autoimmune problems." (I Told You I Was Sick) 

This article also goes on to say:

"Though many conventional doctors do not agree with the gluten/low platelet connection, studies show that those with celiac disease or gluten intolerance are more likely to have decreased platelet counts."

Though we know very little about the author and she does not cite her sources, she uses Leaky Gut Syndrome as a compelling example, in that "the lining of the gut is more porous than it’s supposed to be, allowing undigested particles of food to leak into the blood stream, causing body-wide inflammation and allergic response" (I Told You I Was Sick).

This is definitely something I will be looking into further, and will post my findings here. 

In the meantime, I don't know what 2012 will bring me as far as my health goes.  I have high hopes that it will continue to be another year of recovery.  The year marks my 2nd year of research and new discoveries... of taking my health into my own hands, and finding a path that will give me answers.

For the most part, I remain gluten-free because the medical community has not been able to provide any solid answers for me -- as to why I became so sick in the first place; why my heart began to fail; why my body has been wracked with one immune problem after the other... it has been a slow process, but a learning process.

One step at a time...

Week 24 Recap: Celiac and Menopause?

Week 24 started out much better than the previous week, though I still wasn’t sleeping very well and continued to experience pronounced night-time internal trembling. At one point, the nocturnal trembling/tremors got to me and I did more Googling even though I hadn’t been able to find much about it with previous internet searches. This time was different.

This time I found a website called PowerSurge which is “an informative and supportive menopause community for women going through the transition of perimenopause to postmenopause.” I was very excited about this because I also knew that this was the exact time of life I was going through.  My mind began to make instant connections.

The more I read on this website the more I began to believe that perimenopause might be the cause of just about everything I had gone through for at least the past year! I continued to read about the “34 Signs of Menoapuse” which I will list here even though I do not have all of these symptoms and most women never will have all of them at once:

1. Hot flashes, flushes, night sweats and/or cold flushes
2. Bouts of rapid heartbeat (including palpitations, skipped heartbeats and irregular heartbeats)
3. Irritability
4. Mood swings, sudden tears
5. Trouble sleeping
6. Irregular periods (including phantom periods when you experience the symptoms that come with the onset of a period, but no period arrives. This is apparently common in perimenopause.)
7. Loss of libido
8. Vaginal dryness
9. Crashing fatigue
10. Anxiety, feeling ill at ease
11. Feelings of dread, apprehension, and doom
12. Difficulty concentrating, disorientation, and mental confusion
13. Disturbing memory lapses
14. Incontinence
15. Itchy, crawly skin
16. Aching, sore joints, muscles and tendons
17. Increased tension in muscles
18. Breast tenderness
19. Headache change (increase or decrease
20. Gastrointestinal distress, indigestion, flatulence, gas pain, nausea
21. Sudden bouts of bloat
22. Depression
23. Exacerbation of any existing conditions
24. Increase in allergies
25. Weight gain (particularly around waist and thighs)
26. Hair loss or thinning
27. Dizziness, light-headedness, episodes of loss of balance
28. Changes in body odor
29. Electric shock sensation under the skin and in the head
30. Tingling in the extremities
31. Gum problems, increase bleeding
32. Burning tongue
33. Osteoporosis (after several years)
34. Brittle fingernails, which peel and break easily

Several more symptoms are listed in addition to these and this is what really grabbed my attention:

• Dry skin / skin changes
• Internal shaking / tremor-like feelings
• Acne and other skin eruptions
• Itching wildly and erratic rashes
• Shoulder pain / joints / arthritis development or flare-up
• “Heart pain” – a feeling of pain in the area of the heart
• Acid reflux / heartburn / difficulty digesting certain foods

Though I have experienced many of the original 34 signs, I think most of my recent symptoms are in that last group of symptoms! I immediately referred to an entire section on Internal shaking / tremor-like feelings and was astonished to find page after page after page of thousands of women who were experiencing the exact same thing! In fact, this particular forum was so huge it had been broken down into three or four sub-groups!! Like me, most women were told by their medical providers that is was probably nerves and often offered anti-anxiety drugs.

 HELLO?  What is going on with the medical community these days? During the first three months of the onset of my ‘illness’, I was offered anti-anxiety drugs by at least three different medical providers without even looking further into any physical reason for why I was suddenly (keyword) having these symptoms.

 The Internal shaking/tremor forum comments ran well into the thousands and I could read every day for hours and never be able to keep up with them all as more are being posted every day. But the general consensus seems to be that no one knows why these tremors/tremblings happen. Some have them in place of hot flashes, and some have them at specific times of the month, but most believe it is related somehow to our endocrine system and the fluctuations in estrogen and progesterone.

This caused me to think two things: First, I was okay. If thousands of other women were experiencing this around the globe and were going through the same ‘change of life’ as myself, then it was probably harmless. Second, I remembered back to when these tremors started – almost a year ago when I stopped using estrogen and progesterone creams because I couldn’t afford them. Probably within a couple months, the tremors started in my neck. I remember this distinctly even though it didn’t happen very often -- at first I thought my carotid pulse was racing! But when I put my hand on my chest or when I felt my carotid artery, it was calm. I didn’t think much of it as it happened off and on throughout the end of summer and early fall. By late fall, things came crashing down and my journey here began.

I also made the connection between the strange, oblong vertical bumps on my fingernails and the endocrine system (I found it here). Again—the endocrine system—which in general, regulates our hormones and glands.

I figured it was time to get back on the estrogen and progesterone creams and see if there was any improvement with anything. More about the endocrine system can be found at the National Institute of Health.

I also figured that many of my symptoms were alleviated by going gluten-free.  I wondered if there was a connection between gluten intolerance and hormones or more specifically, peri- and- menopause.

Though Week 24 was a long and difficult one, culminating in a dance recital for my girls and additional schoolwork toward my college degree, I felt my health was once again on the rebound. I was able to clock in over three hours of strength training (105 minutes of Pilates and 100 minutes on the Reformer), and logged 17.3 miles on the treadmill—all with complete normalcy… and that is a good thing.

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.

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!

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.