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 10 Recap: Gluten Reactions?

People have warned me about reactions to gluten once you have been g-free for any length of time. I have been told that each accidental exposure seems to result in a different or worse reaction than before. If what I experienced last week was a result of an accidental exposure, I think I ran the gamut of every sick feeling I’ve ever had -- and all in less than five days.

The week started out great, well into the 90th-percentile for me. I continued my “physical therapy” with two 30-minute treadmill walks, upped my Pilates time to 30 minutes, and upped my weight-bearing exercises to 15 minutes. My plan was to do continue with a six-day exercise program.

I also decided that I didn’t want to continue using clonazepam to help me sleep anymore. I have never liked the idea of taking drugs that do anything to my brain, and I don't like the idea of having to be “weaned” off of medications, especially ones that might require additional medications to counter the side effects of weaning. Well, the idea was a good one but I ended up taking lorazepam instead (Ativan). It was a tiny dose and I figured it would be a good way to slow down. It worked— I slept through the entire night for the first time I can remember in a long time!

But by Tuesday I started having a lot of what I call “subclavian” pain (just because it is in the general area of the subclavian vein --below my shoulder). It was so pronounced I gave it a 5.5 on the pain scale: moderate pain. It was not the first time I have experienced pain or congestion in that same area, but it seemed pretty strong this time and the pain radiated from the left subclavian area toward my left armpit as well. It lasted off and on all day and I ended up taking lorazepam to help me sleep again.

By Wednesday, I wasn’t feeling very good. I was feeling flu-like and couldn’t seem to keep my heart rate down during my treadmill walks. At the same time I developed a migraine headache on the right side of my head that steadily worsened throughout the day. By bedtime I was feeling weak and shaky and my insides were “trembling” again. I was so uncomfortable I resorted to lorazepam again to help me sleep because it had worked so well the previous two nights. It didn’t occur to me that the lorazepam might contain gluten.

The next day I continued to have trouble keeping my heart rate down during my treadmill walk and ended up reducing the speed and held on to the rails when I felt too winded. I also continued to battle the right-sided migraine as well as left chest pain that radiated upward into that left shoulder/subclavian area. The only good news was that my headache went away when I did my treadmill walks and suspected it was due to the increase in oxygen in my body. I determined not to take any more medications to help me sleep, and took Advil to dull the headache, instead.

As you can imagine, I didn’t sleep that night, and had to put up with internal muscle trembling which seemed to start in my esophagus at bedtime and worked its way all the way through to my intestines by morning. At least the headache went away! That Friday was the day I noticed the involuntary gasps which have happened several times over the past week or two, sometimes during the day, mostly at night, and for no apparent reason. The kind of involuntary gasps you experience while crying. Sometimes just a single one, sometimes 2 or 3 in quick succession; sometimes in the day time, but mostly at night. Chalked it up to just another one of those things, but wondered if it wasn’t somehow connected to everything else I was experiencing that week!!

Throughout most of Friday I was feeling very weak. Once again, I had a hard time keeping my heart rate down during the treadmill walk, sometimes exceeding 95% of my heart rate by several beats. I didn’t feel hungry, but forced myself to eat and ended up with a bad case of reflux all afternoon in spite of the twice daily omeprazole (Prilosec). It felt like the reflux was pressing against my lungs and chest, making my chest feet very full.

To ease the reflux and the bloating I was feeling, I took Mylanta twice that evening, but it didn’t do much good. I hardly slept again that night, and I felt intestinal trembling all night long, clear into dawn again—it was like I had a motor running that I couldn’t turn off.  (If you ever want to know how this trembling feels, stand in the shower and let the spray beat down on your chest.  That is how it feels, but from the inside.)

I spent most of Saturday morning feeling “weird and weak” like I either had low blood-sugar or low blood-pressure. My stomach felt hungry, but my brain didn’t. I weighed myself for the first time in I-don’t-know-how-many months (my only weight came from doctors' offices) and was at 108 lbs. That is probably the lowest I have been in 5 years, since the DH (dermatitis herpetiformis) first showed up. Though 108 is actually a good weight for me (between 105 and 110 is generally when I feel my best-- I am a small person), I am not trying to lose weight. If I was trying to lose weight and felt good, I wouldn’t care, but I don’t feel good, so I’m not sure that it’s such a good thing.

It took another night before all these weird symptoms even began to subside. I decided to skip the sixth day with Pilates and weight training and even came close to giving up the treadmill for that day, but somehow I managed to get it done, and that made me happy. My exercise totals for the week: 18.85 miles on the treadmill, 130 minutes with Pilates and 60 minutes in weight-training.

Overall, it was a rough week and I don’t want a repeat of this week any time soon— in fact, never again would be nice.

I believe I was having a reaction to gluten, though I do not know the source for sure. I know that I am very strict with my diet, and so I suspect it may be the lorazepam which was prescribed for me during one ER visit to help me get over the “hurdles.” Regardless, I won’t be taking it again!

Week 7: G-Free Recap

The week didn’t start out terribly bad— I knew I was still recovering from a cold and each day I seemed a little better. I was still feeling some faint heart palpitations, particularly in the afternoons (must be when I’m getting tired or something), but at least the sneezing and coughing was going away. I took my newly prescribed Vitamin D (50,000 IUs) on Sunday, 3 days after the first dose.

I continued to increase my time on the treadmill-- two walks a day, plus a 20 minute Pilates workout to rebuild my strength, and 10 minutes of weight bearing exercises using a Pilates machine. I was still getting heart palpitations several minutes into my treadmill walks, and began wondering which would be better: shorter time on the treadmill but a faster pace? Or a longer time with a slower pace? Which method would be more beneficial to strengthening my heart (more about this later)?

Additionally, I was still feeling some congestion or fullness in my upper left chest that sometimes spread into the left side of my neck and my left armpit. I wondered again—why is it always my left side? Still no answers.

I took my third prescribed Vitamin D dose on Wednesday, two days after my last dose because I am supposed to take it twice a week. I figured Wednesdays and Sundays were just as good days as any, right? Within a couple hours of taking the Vitamin D, however, I began to feel nauseous. What had started out as a pretty good day went downhill quite rapidly. Within a couple more hours, a few random hives started popping up here and there. I made no connection to the vitamin, yet, because I had no reaction to it last week.

My back started aching on the same day, and I was beginning to feel flu-like. The last two times I experienced nausea and a back ache, I had a kidney infection. AGAIN??? I didn’t sleep a wink the entire night, and by the next day, I was even more nauseous, couldn’t eat, and for the first time since going gluten-free, felt distended and constipated. I tried my treadmill routine in the morning, but by the time I finished I felt like I was about to go into shock—cold and clammy, lightheaded and queasy. My heart was feeling very weak, and whenever I laid down to rest, I felt like I could very easily stop breathing-- my heart would jump back into action again.... very weird, and I lack the literary skills to put it into proper words.

I managed to get in to see my doctor that afternoon —the only medical professional I’ve seen all this time that I actually trust. My back pain was not in the right place to be a kidney concern, so that was good news to me. He offered a beta blocker for the palpitations, which I turned down because I don’t want anything messing with my heart as it is —and he offered a regular prescription of clonazepam for anxiety and to help me rest (which I also declined—for now). He decided that I may be reacting to the Vitamin D, in which side effects listed everything I was going through. Stop the vitamin for a week, try it again, and see what happens. Sounded like a plan to me!

I continued to develop a couple of random hives that night, and my stomach began to hurt just as if I had been gluten-ized!! And yet, I hadn’t eaten anything that I was aware of that could have caused a gluten reaction!  I wondered if the vitamin had gluten, but I had been assured by the pharmacist that it did not.

The next day, my stomach was very sore. I felt like I had been run over by a truck —the last time I felt that bad was when I first decided to go gluten-free back in December and see if it helped. I still felt queasy, but not enough to give up my treadmill walks —getting my heart stronger is my first priority.

My doctor had suggested a target heart rate of around 160, and so I walked 30 minutes, twice a day, for the rest of the week, keeping my heart rate at or below (and sometimes a little above) that target heart rate. Following that pattern for the rest of the week all but eliminated the heart palpitations. They gradually stopped happening during my walks, and have hardly happened since then at all!

The only drawback to the two 30-minute walks is something new for me: sore hips —whether it is related to my osteopenia, I don’t know —because my back has been very sore, and my injured left ring finger decided to flare up again also —but, I don’t think it is related —at least I hope not. I think my hip flexors just need to get used to walking for an hour a day.

My new question: Did I react to the Vitamin D because there was only two days between the last dose (and three days between the first two)? In other words, should I wait three days between each Vitamin D dose?  Or still go three days and two days?

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.

Week 5: G-Free Recap: Overcoming the Hurdle

For 12 weeks in a row, I was sick – nearly every single day. I might have a good day or two, and then more illness would plague my body. For the first 8 weeks, I had no clue why I was feeling so sick, and hence no change in my diet. Once I tried going gluten-free for nearly a week, I felt so much better I was sure I had just diagnosed myself! But over the next 4 weeks, through trial and error, through the holidays, through sorting out misleading blood tests, and through two kidney infections, life was rough for me. I envied people who walked around "like normal" while I felt sick to my stomach all the time. 

When January 2010 hit, I determined to make sure I ingested no gluten, whatsoever, and to the best of my knowledge, that’s the way it has been. The worst things I had to deal with were a kidney infection and Chronic Fatigue Syndrome— maybe CFS was another self-diagnosis, but I had all the symptoms, and so it fit.

During the last week of January (this past week) I felt like I finally had cleared the hurdle. It was the best week in 13 weeks. Almost every day was a 100% day.

I began working out with Pilates again, gradually rebuilding my strength and my “core” for about 20 minutes a day, five days a week. I also continued to walk/jog on the treadmill at least twice a day for 15 minutes at a time, averaging a distance of just over a mile-and-a-half a day.

Though I still feel I am not completely healed and there may be some overlying complications, I do feel as though I can “rejoin the living” again. I can go to the store without worrying if I will get sick, and no longer fear being left alone ("in case something happens").

Slowly, and by degrees, I feel like I am living again, and it is a nice feeling.

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...

Week 3: Recap

I would not be honest if I said that since I have been gluten-free, it has been smooth sailing.  In fact, it has been quite the contrary.  After the holidays, and since my last recap, I can honestly say that to the best of my knowledge, I have been 100% gluten-free.  It was only until I made absolutely sure that everything I put in my mouth was g-free, that I could even begin to recover.

Early on, however, I continued to feel nauseous from time to time, feeling some chest congestion and tightness and daily headaches.  I still did not know the results of my blood tests (tTG) or even what my cholesterol numbers were. Was this nausea and general malaise part of celiac disease?

At the same time, I was feeling the symptoms of another kidney infection caming on-- including the same back pain on the same left side. My skin was tingling and flushing again, and it seemed like some of the symptoms that sent me to the ER last October were returning. I couldn't shake the feeling that I was coming down with something. I was feeling flu-like again. Worse, I was beginning to doubt my original self-diagnosis of celiac disease. What else could it be??  I did more research, wondering just how much time would need to go by before I would feel the benefits of being g-free.

I found that:

"Greater than 90% of those with celiac disease have improvement in symptoms within two weeks of starting a gluten-free diet (CeliacDisease.net)"

So I determined to give it more time. After all, if celiac was present in my body all these years, it was certainly going to take some time to heal. Digging around on the internet a little more, I found a chart on Celiac.com in which 19 members posted how long it took for their symptoms began to subside. I have borrowed that chart and posted it here.  Clearly it is not a scientific poll in the annals of the medical community but it represents that recovering from celiac complications does take time.

I finally called the clinic to find out the results of my blood tests. The tTG came back as less than 1.2, while the standard for having celiac is a minimum of 4. This was discouraging news indeed, because if I didn't have celiac, what did I have?? On the other hand, my cholesterol was at 162 and all numbers within that score were healthy.


Needless to say, this was getting very frustrating for me. Did this mean I had GERD after all? Then why is it that it didn't seem to matter what I ate, no matter how bland? It didn't matter what I ate or when I ate it-- if I ate it, I felt bad. All I knew was that it had to be food related.

Doubting my own diagnosis of CD, I resolved to go back to eating gluten-- after all, if the tTG was negative (normal), what did it matter? I must not have CD after all.

I ate a roll.

I figured that in order to rule out celiac disease, I would simply have to incorporate gluten into my diet again.

It was not a good time. It wasn't long before stomach hurt-- the same familiar "gluten stomach ache" I had experienced before. I was so frustrated. I couldn't do anything-- I couldn't clean the house, I couldn't cook, I couldn't take the kids to their appointments during the day, I couldn't do my homework, and it was all I could do to just get out of bed.

Week 3 was a difficult week, but not as difficult as the week to come...

Chronic Fatigue Syndrome and Celiac Disease

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

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

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

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

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

Additional signs and symptoms:

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

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

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

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

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

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

Week 2: G-Free Recap

Getting through the holidays completely gluten-free while still trying to figure out how to live g-free has proven very difficult. Though I am eating g-free to the best of my abilities, somehow something is still creeping into my diet that is not allowing me to return to that wonderful feeling those first five days I went completely g-free. I seem to have a chronic stomach-ache, a general feeling of malaise, and extreme fatigue.

I am sure that my fatigue is due in part to the fact that I wake up every night for hours before finally falling asleep shortly before dawn, only to get up an hour or so later. Yet I remember when I first went g-free, I had an amazing energy level for which even a sleepless night seemed of little consequence-- I still felt energetic!

Over the New Year's Eve weekend, the only foods I ate that I did not know for certain contained gluten were Tostitos chips and Sour Cream & Onion chips-- but I did read the ingredients and couldn't find anything off-limits to a g-free diet. Additionally, I grabbed a few Hershey's Kisses from time to time (which are supposed to be g-free). Those are the only foods I've eaten differently than the first five days I went g-free and felt great.

So this third week I will eliminate chocolate, and of course have not eaten chips since New Year's and won't again without knowing for certain that they are g-free. On top of that, I hope to find some answers to a couple of blood draws: my cholesterol (which was done three weeks ago) and hopefully the results to the tTG test which would indicate the presence of celiac disease. If I don't receive any news by Wednesday I will go ahead and call the clinic.

In the meantime, I deal with what feels like chronic fatigue syndrome on a daily basis. I wonder if this is yet another aspect of CD? And why is it taking so long for me to recover from a gluten diet?

Week 1: G-Free Recap

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

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

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

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

Still trying to figure it out...

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

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

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

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