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 23 Recap: Pressing the Re-Set Button

About 10 years ago I fell in love with an X-Box game my kids used to play called Need For Speed.  It was a racing game in which as you earned points you could buy better and faster cars and race against other drivers in beautiful locations around the world.  If I ever got stuck or couldn't maneuver, I could push the black re-set button and my car would be re-positioned and ready to go.  I have oftened wished for a re-set button in life.

 As the month of May ended and June began, it marked the seventh month since my journey to regain my health began. The question as to whether or not I actually have celiac disease remains debatable, though my personal inclination is to lean toward a gluten intolerance brought on by something else, possibly a virus. Swine flu was running rampant through the town last year, and in fact I believe one of my own children came down with it as well. Perhaps there was something in all the viruses floating around that attacked my system in a different way.

Week 23 started out with almost no sleep again, with my personal GPS (code for vertigo) still out of whack, frequently causing bouts of nausea and an upset stomach. And if that wasn’t enough, I was walking around with an internal ‘buzz’ for most of the week, like some kind of massive caffeine high (I haven't had any caffeine for 7 months).

With the onset of the vertigo last week I decided I’d had enough with all the drugs and vitamin supplements. I rebelled and quit taking the prescribed ergocalciferol, and all the vitamins with the exception of calcium/magnesium, iron, and 325 mg enteric-coated aspirin (prescribed by the internist when they thought I might have had a TIA).

I went to my internist on Tuesday to discuss the results of the thyroid blood draws the previous week and the vertigo. The blood tests were all within normal range, and though he had no explanation for the vertigo, he performed the canalith repositioning exercises on me (a good description of this procedure can be found here) and in the process taught me how to do it myself until the vertigo went away. He explained that he experienced it himself last summer and took care of it successfully.

I performed the repositioning exercises faithfully at least four times a day, and even though most of the reactions seemed delayed (about 20 seconds after changing positions) and sometimes the reactions hit with a bang, the vertigo gradually improved until it was completely gone within 48 hours after my first repositioning session.

The end of the week brought more pronounced internal (and nocturnal) trembling in the chest area. Sometimes it even seemed to migrate down my arms towards my hands. Was it because I eliminated the extra vitamin supplements from my diet? Was this yet another withdrawal reaction? I don’t know. Only time will tell.

My exercise routine was very successful throughout the week with just over 4 hours of strength training exercises including 150 minutes of Pilates and 100 minutes on the Reformer. Additionally I walked 19 miles on the treadmill at a brisk pace.

It was a good week, but one which was clouded with apprehension with the reminder that anything could go wrong with little warning.

Week 22 Recap: …And Two Steps Back

Week 22 started out with a scare. I was getting ready for the day, doing my Facemaster (which I have used for about 6 years now), when I suddenly started having multiple palpitations (a rather large flip-flop) to the point where my heart began to pound rapidly. It was rather frightening because for about 5-10 seconds my heart just could not get back on track. My pulse jumped to about 110. I didn't know what to make of it. I wasn't stressed, wasn't thinking about anything in particular, just watching TV while doing my face. I was completely relaxed, although after that little incident I have to admit I was pretty frightened.

I couldn’t remember the last time I felt like that. In the past I had experienced a sudden rapid and pounding heart beat, and had experienced the multiple palpitation/flip-flop feeling but couldn't remember when/if I had ever felt the two of them together. It was quite disconcerting because I thought I was over all of that!

After the ‘incident’ my left chest was aching, as well as my left arm. I was thinking it may be an anxiety reaction. I wasn’t under stress, but felt frustrated because I had been doing so much better, and now this – totally out of the blue, for no apparent reason. I couldn’t shake the anxiety and so ended up taking 1 mg lorazepam, which made me groggy for the rest of the day. Though I felt physically fine, I was emotionally let down. It depressed me because I felt like I went through an event that had no reason for happening. If I knew the cause, I could dismiss it and move on. Perhaps last week’s stomach upsets and chest fluttering led to this latest development?

I determined to ignore it the best I could. Just -- it is what it is-- it happened, I don't know what it is, get on with life.

After about two weeks of quitting Prilosec my stomach finally began to settle down, though I continued to experience the internal trembling that no doctors have been able to address so far. When it happens during the day it is like a major caffeine buzz, but at night it seems more pronounced and can be felt through the skin. I began to wonder if all this internal trembling is related to something with my nervous system that may also occasionally interfere with the electrical conduction of my heart.

I had a checkup with the internist this week and talked to him about the sudden flip-flop I had experienced out of the blue. He said if I had a mitral valve prolapse (MVP) it would have been spotted on the echocardiogram we did back in January, and that he didn’t think I had dysautonomia, but he wanted to recheck all of my thyroid levels—particularly because he noticed that my weight had gone up and then back down quite rapidly (in a few months time). He also mentioned that he was going to be talking with someone else about my case to help get some answers, which is always nice to know.

I asked him when I might see an improvement in the osteopenia and he said it could take up to 2 years to see a difference in bone density. It was a good visit – my blood pressure was 102/74 and my pulse was 84 – a little elevated for me but probably because I was nervous. I had about 5 tubes of blood drawn for the thyroid and iron blood tests.

The internal trembling continued throughout the week and at night it even felt like my eyelids were trembling. Another strange and new symptom began appearing this week: dizziness especially upon awakening and upon sitting up. In the meantime, I continued to take the clobetasol proprionate ointment as prescribed for the rashes on my arms.

By mid-week it was clear that this was

going to continue to be a very strange week!

I began to have stress days. For some weird reason I just couldn’t seem to control my levels of stress. My brain was telling me something was wrong or going go happen even though there was no physical indication or rationale for such an event. I felt like the Star Trek character Data when his emotion chip is implanted and it goes awry. Once it is deactivated he normalizes. It felt as though my stress ‘chip’ had gone awry and I didn’t know what to make of it. I had never felt that way before. I took a lorazepam and went to bed.

As I have learned since becoming seriously ill last October —if there is ever any type of new symptom I need to first look at what I’ve been doing differently or what drug was recently prescribed for me. In this case, the only thing new was the clobetasol proprionate ointment. I did a little Googling and found that it has been well established that low doses of topical clobetasol proprionate can cause adrenal suppression in some people. The adrenals are responsible for our ability to deal with stress! I immediately made the mental connection, though I was completely caught off-guard —it had never occurred to me that a topical ointment could produce this kind of reaction in me —but then again, over the past seven months my body had been reacting to everything!

One particular article I found came from the Journal of the Royal Society of Medicine entitled “Adrenal Suppression Following Low-dose Topical Clobetasol Proprionate” which said specifically:

“The use of topical steroids is associated with adverse systemic effects such as suppression of the hypothalamic-pituitary-adrenal (HPA) axis, and application of more than 50 g per week of clobetasol propionate cream has been shown to cause secondary adrenal failure” (Volume 80, July 1987).

The article described “4 patients who used clobetasol propionate cream over a prolonged period; 3 patients used less than 50 g per week (7.5, 25 and 30 g per week) and yet all developed secondary adrenal failure for up to 4 months after cessation of therapy” (Boldface added).

The conclusion was that “relatively small doses of clobetasol propionate cream may cause adverse systemic effects, with suppression of the HPA axis occurring more commonly than has previously been recognized.”

So what is the HPA axis and what happens when it is suppressed?

 According to Oregon State University’s Student Health Services:

 “The HPA axis can be thought of as the body's ‘stress sytem’. It controls the levels of cortisol (the ‘stress hormone’) and other important stress-related hormones. The HPA axis can also be thought of as the body's energy regulator, because it is also responsible for controlling virtually all of the hormones, nervous system activity and energy expenditure in the human body, as well as modulating the immune system. When the HPA axis becomes suppressed, your body will not be able to properly regulate your stress and energy levels, which can manifest in fatigue, suppressed immune system, depression, and anxiety. If you are experiencing such symptoms, you should see your health care provider for recommendations on the appropriate course of action.”

My first thoughts were: Could this really be the case? Just applying a small amount as prescribed? But I already knew my answer. My second thoughts were:  That's all I need to know.  My adrenals were already fatigued by my own diagnosis.  Stop taking it. Immediately.

The very next day, I woke up dizzy again. So much so, that as I sat up and leaned back to get a Kleenex off my nightstand, the room began spinning violently. I waited for it to subside and slowly stood up to use the bathroom but found myself leaning and kept tripping. As I went to get breakfast, I continued to feel very light-headed and off balance. I knew it was vertigo, and made an appointment to see my internist. He was out of town and so I was seen by a Nurse Practitioner, who subsequently diagnosed me with benign paroxysmal positional vertigo (BPPV) and recommended canalith repositioning exercises with a physical therapist (at this point, dollar signs began spinning around the room with everything else. I decided to wait until my internist got back into town and ask his advice.)

In the meantime, the NP prescribed meclizine (for the nausea that accompanied the dizziness) and a nasal spray: fluticasone proprionate. Great… more drugs…. I took the nasal spray and the meclizine the first day, but nothing more after that.

ODD THINGS DURING THE WEEK:

• Experienced some minor tightness/twinges of pain in upper left side of chest off and on early in the week.
• Experienced some mild left-subclavian pain again off and on
• Vertigo throughout the latter half of the week
• More pronounced internal trembling particularly in chest area

My exercise routines were disrupted this week with the vertigo. When I did use the treadmill my carotid pulse was much higher than normal-- for which there seemed to be no cause. For example, at 10 minutes into the walk my pulse is usually around 138. This week it was closer to 174—and hence the decision to not push anything.

When thinking back and wondering why I felt like I had been slipping backwards that week, I thought about my first heart events (for lack of a better work) last October. It seemed like they really slammed me down hard. A lot of things were going wrong before I was finally able to climb back up. And that is how I felt at this point. The strong cardiac flip-flop last Sunday followed by weird new symptoms: vertigo/dizziness and more weight loss without trying and without exercising most of the week. It was all so weird. Whether anything was connected to the other I had no way of knowing—especially after feeling so much better for a couple of months. It truly did feel like two steps backward.

Week 20 Recap: Finding Ordinary

Week 20 started off well with Mother’s Day, which translated into a movie (Iron Man 2) and dinner with the whole family. Any time I get to watch Robert Downey, Jr. is a good day.  So seeing Robert Downey, Jr. and spending it with family was indeed a rare treat!!

Though I continued to have problems sleeping, I began feeling 100% on more days than not. Once the trembling subsided (presumed Prilosec withdrawal) I decided that I would stop taking it completely rather than gradually eliminating the dosage. I figured I’d rather suffer and get it over with now than continue this off-and-on thing all summer long.

On Wednesday I removed the biopsy stitches out of my arms myself. I did pretty well until the last stitch which was somewhat embedded into my skin and required a bit of digging. Started feeling queasy – don’t recommend it to others!! I’d much rather remove someone else’s stitches than my own!

No sooner had I finished pulling the stitches out, the dermatologist called. She said no sign of celiac was found in the biopsies but she was not really expecting anything to be found because the rash was no longer active—just old, chronically scratched skin-- not dermatitis herpetiformis. She said she asked the pathologist if IgA would show up and she was told that as long as the rash is still itchy it would still be present. So based on that information, she said she didn't think I had celiac.  But the rash has not been itchy. In fact, it hasn’t been itchy or active since I went gluten-free. When it does itch I believe it is because of the scabbing that is trying to take place.

Regardless, the dermatologist prescribed an ointment for me which she said would make the rash go away once and for all. The prescription was for Clobetasol Proprionate USP, 0.05% which I was supposed to apply at least twice a day.

Almost all of my exercise workouts during the week were uneventful: nothing going on out of the ordinary other than some minor fluttering late in the week which felt gastric-related. I also felt some brief left-sided chest pain off and on for a day or so, but nothing alarming.

My exercise totals for the week: 100 minutes strengthening exercises, including 20 minutes of Pilates and 80 minutes weight-bearing exercises; and 14 miles on the treadmill as well.

This week was nothing much to write about.... if fact, it was rather ordinary.  But do you know what?  That is a good thing!

Week 19 Recap: The Road Ahead

The week started out with more trembling and fluttering than I care to deal with, particularly because it worsened at night and often lasted till morning. If you’ve been following this blog, then you know that I found a possible connection between these bizarre symptoms and PPI (Prilosec) withdrawal (or any drug withdrawal, for that matter). Once I figured this out, I knew it would pass and determined not to take any more drugs for anything, if it can be helped.

I saw a dermatologist during the week with regard to the rash on my right wrist/forearm which I have had for almost six years now (possible dermatitis herpetiformis), as well as the rash near my left elbow which showed up about a year ago. She did not say what she thought of either rash, other than the one on my right wrist is clearly quite aged. She proceeded to take a biopsy of each, and I left her office with an unexpected six stitches, three in each arm. It will be interesting to see what she finds, if anything.

Toward the end of the week the night-time trembles began to die down in intensity, and other than being extremely busy sewing costumes for an upcoming talent show in which my dancing girls were participating, there were no new symptoms or return of any old symptoms. In spite of the exhaustion that comes from very little sleep and too much to do, it was a good week.

I tried to maintain my “physical therapy” even during this very busy week because it is the one thing I am not yet willing to trade-off for more time. I have to take care of my body, and the physical exercise is probably the biggest and best thing I can do right now. All of my treadmill walks went very well (walking 18.8 miles), and I feel my heart has finally reached a significant point of healing. Though I still get a heart palpitation about once a week or so, I have had none during any treadmill walks, nor have I had any chest pain of any kind.

I was not as successful in maintaining Pilates during the week (only 30 minutes), probably because it is usually the form of exercise I do last (in the evening) and all my evenings were absorbed in sewing and fitting costumes. I did, however, keep up the weight-bearing exercises on the Pilates Reformer (110 minutes)—which I know will continue to benefit my bones.

ODD THINGS THIS WEEK:

• Stomach ache again followed by same symptoms as usual-- kind of like a huge caffeine buzz-- nervousness and inner trembling.
• Discovered vertical rows of tiny bumps on my fingernails, most noticeable on my ring fingers. They are not the vertical ridges (which I also have), but tiny oblong bumps. Since they run the entire length of the nail I am guessing they have been there for a while. The dermatologist did not seem to know what they were and was unsuccessful at getting a good photograph of them.
• During one night, I felt strong muscle tremors in neck-- so much so that it woke me up. I remember making a mental note of it.

From where I stand now, the road ahead appears to be a good one.  I am not even so sure I want to "test" myself with gluten because I am doing so much better now, even though it has been a long time coming.  Yet I know the dreaded "test" must probably be done at some point in the future so I have a certain answer, one way or the other, as to what was/is making me sick, and so I know how to react in the future should I be "contaminated" in any way.

I can only say that prior to last year, I had never been sensitive to any foods, nor any medications whether it be over-the-counter or prescription.  I do know that I suffered a traumatic event when my husband suffered a massive heart attack, and though it was the hardest thing I had ever had to deal with from all aspects of my life up until then, I felt it was behind us.  And then there was the added stress of the "heart attack fallout" -- no money, no way to pay the bills, and watching my credit that I had worked so hard to build take a nosedive.  As if that wasn't enough, dealing with my husband and his erratic mood swings was apparently more than my body could take.  I felt I was on the verge of a major breakdown almost every week... turns out, my body did breakdown-- it just wasn't mental, it was physical.

All these events may have very well served as the catalyst, the trigger that set off the illness that slammed me down late last fall.  Interestingly, celiac can be triggered by just such events.  Though some people will not believe I have celiac, and though I have tried to dismiss it myself, I can't -- no matter how badly I want to -- and so life moves on.

Week 16 Recap: Celiac or Gluten Intolerant?

Well, it’s here! Summer has unofficially arrived in Montana after our usual 7 months of winter followed by 8 hours of spring. We may get hail storms from time to time through the summer, but I don’t expect any more snow until this fall. Yet, you know what they say in Montana, never say never!

On to last week’s recap in my adventures of going gluten free…

I am actually still in the process of determining whether I even have celiac disease or not. We are in the final throes of testing—the genetic screen has been sent to California to determine whether I have the gene for celiac or not. The results should arrive later this week. All other tests and biopsies at this point in time are normal.

My follow-up with the GI specialist went very well. My blood pressure was 102/80 and my pulse was 76. I am not IgA deficient, so that is nice to know. There was no sign of cancer or any disease in my stomach and small intestine—only a small 3 mm hiatal hernia. She recommended that I stop taking Prilosec (omeprazole) in the evenings, and take it only in the mornings, half hour before breakfast. After a month or two, I am to reduce the Prilosec to every other day for a month or two, and then eventually stop taking it altogether. Additionally, the GI specialist also wants me to see a dermatologist for the DH (dermatitis herpetiformis) once the results of the genetic screen for celiac comes in.

ODD THINGS THIS WEEK:

• Some twitching and slight thumping in chest, followed by slight pain to left of sternum as well as left subclavian and achy left arm.
• Very slight fluttering in chest several different times this week
• One morning, while eating my morning yogurt, my tongue started tingling. Not long after, my hands were feeling numb and flushed.
• Late in the week I experienced a painful double heart palpitation which caused me to cough, while sitting on my bed working on my laptop.

My “physical therapy” went very well this past week even though I was not able to spend as much time with Pilates as I normally do. All my treadmill walks (two daily 30-minute walks, 6 days a week) went very well and I did not feel stressed or tired, or pain in any way… pretty much normal walks. Exercise totals for the week include 60 minutes of Pilates, 30 minutes of weight-bearing exercises, and 18.66 miles walked.

Though I can only speculate what my serology results and biopsies would have shown three or four months ago when I first suspected celiac disease, my current lab results are all completely within the normal range for everything.

The following quotes I found in the Winter 2009 edition of the online “Easy Eats” magazine (“Easy Eats: The magazine for gluten-free living”), and thought they were especially pertinent in my particular case:

“Celiac disease patients with lesser degrees of villous atrophy are less likely to have positive celiac serologies” (“Digestive Disturbances and Science,” 2004).

"Recent literature data showed that serology (not only EMA, but also anti-tTG) seems to be ineffective in detecting most patients affected by subclinical/silent disease" -- i.e., gluten sensitivity rather than celiac disease ("Digestive and Liver Disease," 2007).

"If eliminating gluten from your diet results in your body feeling better, that is a positive test" (Dr. Vikki Peterson, DC, CCN, Founder of HealthNOW Medical Center, 2009).

Whatever the case—celiac or gluten intolerant—the treatment remains the same. The next question will be: is gluten intolerance inherited (should my kids be worried)?

"Sugar and gluten are like squirting gasoline..."

I received a message through a Yahoo celiac support group called Silly Yaks, and thought it was so interesting, I got permission from the author to post it here on my blog:

Last night I attended the Wheaton Gluten-Free Support Group meeting, with Sueson, our fearless leader and Dr. Tom O'Bryan lecturing on "Inflammation: Sources and Solutions". The big surprise is that they took aim at sugar. Sueson said that "Sugar feeds cancer. For a PET scan, you have to eliminate all sugar for 24 hours. Then they inject you with nuclear sugar. It all goes to the cancer." She cited http://rheumatic.org/sugar.htm

Dr. O'Bryan said "Sugar is an inflamatory compound...Every disease is an inflammatory disease." He talked about trying to light charcoals, and the experience of having to lay a lit match on the already lighter fluid soaked coals, and squirting more fluid on the coals around the match, and having the splashed droplets of fluid hitting the match, and finally getting the charcoal to light. He asked "What would happen if you squirted gasoline on the coals with the lit match on them? Sugar and gluten are like squirting gasoline...Inflammation is the mechanism of all degenerative disease, at the cellular level."

He clarified a statement he made in October: Celiac "blood tests are only accurate when you have total villous atrophy. Otherwise they are wrong 7 out of 10 times." (Michael)

I found the analogy so interesting, I just had to share. Thank you, Michael, for attending the meeting and for sharing this information! There are people with celiac disease who can handle small amounts of gluten with no apparent adverse effects, and yet it still does internal damage all the way into the cellular level.... something to think about!

The webpage on sugar is mindblowing, even to me (I've been sugar-free, starch-free, alcohol-free, caffeine-free since hypoglycemia diagnosos in 1980) showing it to be the cause of so many cancers. Sueson really emphasized to women the necessity to eliminate sugar, citing reasons #9 and #92 from Nancy Appleton's "146 Reasons Why Sugar Is Ruining Your Health" (Michael)

The following websites are highly recommended:
Sueson Vess's website:  http://www.specialeats.com/
Dr. Tom O'Bryan's website:  http://www.thedr.com/
Nancy Appleton's article: www.rheumatic.org/sugar.htm

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.

Week 4 Recap: Don't Let This Happen To You!!

DON'T LET THIS HAPPEN TO YOU!!! If you are taking a medication that does not make you feel better, tell your medical provider!! Carefully research the side effects of the medication and see if any of it applies to you, and don't be afraid to tell your medical provider of your suspicions!

Here is my story:

Still feeling as if I'd had some kind of mild virus for a very long time, and still maintaining a seemingly perpetual fever, I went to the local clinic and asked to be tested for an infection. While I was getting ready to go, my heart suddenly began pounding and racing! I checked my carotid pulse and it was 126 beats per minute (bpm). That was something strange! I had been sitting down!

The heart pounding happened again while I was sitting in the treatment room at the clinic. My heart felt like it was pounding so fast I thought I might pass out! Luckily, the PA came in, and had me lay down for an EKG-- which of course-- showed nothing. By the time they had the electrodes on, my heart was fine.

My urinalysis showed a very small amount of bacterial growth, and as a result, I was put on Ciprofloxin, and Phenergan for the nausea. I was not happy about going on the Cipro because it made me feel so depressed the last time. I hated the way it made me feel, and staying on the Cipro seemed to be worse this time around. I was continually teary-eyed and fearing the worst. I stopped taking the Phenergan after the first day because I couldn't function in such a fuzzy-headed mode.

On a positive note, I decided to take my health into my own hands again, and cleared off the clothes that had been hanging on my treadmill and walked very, very slowly (1.5 mph) for 4 minutes. That was about all I could do because it took so much effort to do the smallest things. Over the rest of the week I was able to increase both the time spent walking, and the speed.

In the meantime, my kidney infection symptoms seemed to clear up, and the flushing and tingling subsided. Yet, everything I did seemed to require monumental strength and stamina which I just didn't have. I felt shakey and nervous and my hands and arms were sluggish in doing what I asked. My heart felt so weak! It felt as if my heart had a virus of some kind.

After a handful of days on Cipro, I still wasn't feeling any better. Why did I still feel like I had the flu? Why did I feel so weak? Why was I still feverish? On top of that, staying on the Cipro began to make my heart hurt. My digestive system was peaceful, but the rest of me still felt like I was battling something else.

We called the clinic and explained that I thought the Cipro might be making me feel worse. After being sick for so many weeks, I had reached my tether. I was an emotional wreck, in constant tears, and my heart was palpitating more and more. I felt so frustrated that it never occurred to me that these might be side effects of the Cipro!

The clinic told me to stop the Cipro, and instead decided I was depressed and put me on Celexa, an anti-depressant. I stated that I didn't want to be on any mood-altering drugs, and here they wanted me on it for a minimum of six months for clinical depression!

The pharmacist suggested I start with half of a Celexa and I am glad I followed that advice!! I had gone downstairs to start the washer, went back upstairs, and suddenly became extremely groggy and dizzy. I thought I would lay down, when a sudden sensation of intense heat shot straight up through the left side of my chest straight up into the left side of my neck and straight up into my left jaw. My heart was pounding, I was feeling dizzy and very flushed; my arms and legs were trembling. I kept trying to breathe through it, but my mouth dried up completely and my throat hurt because it, too, was dry. I also developed very bad stomach cramps.

After spending about 10 minutes trying to breathe through it, I asked one of my kids if she could send her dad into the room, and he saw immediately that something wasn't right. He called the clinic and told them he thought I might be having an allergic reaction to the celexa. She told him that if it didn't improve to go the ER.... which is exactly where I ended up. I couldn't even walk very well because my legs were so wobbly!

Once at the ER, the doctor did a full exam on me (for the first time anyone had done since getting sick last October), and ran another panel of blood tests, including one for celiac antibodies which came back normal-- indicating again that there was no celiac disease (Don't be fooled by this. More about this later!)

Once off the Cipro, it didn't take much longer for me to make the connection between the side effects (www.rxlist.com/cipro-drug.htm#) and the weapiness and depression. I realized that the clinic was giving me a medication for a side effect! They were treating a side effect with another pill!! I am so grateful for the bad reaction to the Celexa.

As I said in the beginning: DON'T LET THIS HAPPEN TO YOU!!!  Happily, I never went back to Celexa. The whole week was insane. All I wanted to know was if I could eat gluten or not!

By degrees, my days began to improve. I wasn't 100% yet, but felt I was up to about 80%, which was wonderful considering how I had been feeling before. During the week, I eventually worked my way up to 8 minutes on the treadmill, three times a day, keeping it at a fairly slow walk.

Unbeknownst to me at the time, my husband had talked to someone at the hospital and told them he wanted me to see someone who was "smarter than my wife." An appointment was made for me to see a specialist in Internal Medicine, which thrilled me to no end. I believed I would finally find some answers!

More to come...

Going Gluten-Free....again

Last Monday I was tested for tTG: the Anti-Tissue Transglutaminase test. This should show whether I am 'at risk' for Celiac whether I am showing symptoms or not. Because it is so sensitive, it is supposed to be fairly accurate.

"Researchers have discovered that people with celiac disease who eat gluten have higher than normal levels of certain antibodies in their blood. Antibodies are produced by the immune system in response to substances that the body perceives to be threatening. Think of antibodies as a sending out a warning signal to the body --only in the case of an autoimmune disorder like celiac disease, the warning signal sounds for something that is supposed to be safe --the proteins in wheat, rye and barley that are generically known as 'gluten'" (UC Celiac Center).

Because I had already diagnosed myself and been off gluten for 5 days, I was instructed to return to a gluten diet for the remaining four days prior to the test... which I did, but with caution.

I have noticed that depending on what I eat, it may take anywhere from 45 minutes to 20 hours or so before I start reacting to the gluten. After Monday's test, I immediately returned to gluten-free eating, but it was difficult, and took a couple of days before I began to get my energy back. By Wednesday I couldn't figure out why I would feel great for a short while, and then become nauseous again. I traced back what I had eaten the previous day and the only thing that was questionable was Activia yogurt-- something with which I used to start every morning. So I looked it up on Dannon's website (the parent company), and according to their website, they will not proclaim any Activia yogurts gluten-free because certain flavorings contain gluten, and they are made together with those that don't contain gluten. There was my answer. I immediately stopped eating it, and became gluten-free.... again.

It is amazing how different I feel when I am gluten-free. In fact, I can usually tell when my body is gluten-free because my energy level just sails through the roof —I don’t remember ever having this much energy.

As I continue to learn what is safe to eat and what isn't, I am also learning about the many different alternative flours and mixtures so that we can continue to eat the foods we like-- without the gluten. There is nothing like a major holiday dinner to break you in to cooking gluten-free!!! In one day alone I made two batches of Oreo cookies; chocolate macaroon cookies; French-fried onions (for the Christmas dinner green-bean casserole) and chicken enchiladas (with g-free tortillas) for Christmas Eve. Our Christmas Eve and Christmas Dinner were as traditional as they have always been, and g-free!

If I find a product that looks like it might be g-free but is questionable, I am learning to call the company to find out. Most products come with a 1-800-number on the package, and most have a Nutritionist or hotline that answers common questions, including whether a product is g-free or not. For example, we usually like the Tostitos “Lime & Chili” chips with our enchiladas, and even though the ingredients didn’t list gluten, it contianed MSG. I knew from my own research that some g-free websites say MSG is okay, and some say it isn’t. Turns out, it depends on the glutamate in MSG—whether it was made with corn (safe) or other (wheat, barley, or rye—unsafe). Most MSG in the U.S. is considered “safe”. But we still weren’t sure, so my husband called the 1-800 number that was on the package, and they quickly answered that Yes, it is gluten-free, and offered to send us a complete list of their g-free products!!

I continue to learn something about celiac and gluten every single day, even if it is simply what causes a particular reaction in my body, and what symptoms will follow. By this time next year, this will be 'old hat' and our holiday dinners will be even better. What seems so new and awkward right now, will become normal, and all of us will be much healthier. This is something which will make me very happy!

Starting Over WITH Gluten??

Starting over with gluten is not something I am looking forward to because I have been feeling so much better these past 5 days without gluten. My energy level has been through the roof and my insides have been at peace for the first time in a long time.

In order to be tested for the tTG Antibody, the clinic would like me to go back on a gluten diet for the weekend, and the test will be done Monday morning. According to www.celiac.nih.gov/ (National Institute of Health), the "tTG test has a sensitivity of more than 90 percent, yielding few false positive results. The test also has a specificity of more than 95 percent, meaning it yields few false negative results."

These tTG (tissue Transglutaminase) antibodies are usually found in patients with CD, and are also found with juvenile diabetes. They are involved in the destruction of the precious villi in my intestines, that absorb nutrients. If these antibodies are detected at a level greater than 19 units, it suggests the "possibility of certain gluten sensitive enteropathies such as celiac disease and dermatitis herpetiformis" (www.aruplab.com/guides/ug/tests/0097709.jsp).

Though I am not looking forward to it, I am willing to do it for the sake of finding answers... it is just not good timing. Today is Thursday, and I have to eat gluten for the next three days, and those three days are very full for me. I have two final exams due by Saturday, and my girls are dancing in two performances of a Christmas recital on both Saturday and Sunday... and I may be too sick to attend by then.

Well, it was nice being gluten-free while it lasted! Even if this doesn't pan out to be CD, I have no reason to continue a gluten diet that makes me sick until something else happens.

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.