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.

Genetic links to celiac disease identified: Commentary

Well, I thought we had already established that celiac disease was genetic, but just a couple of days ago it was announced that according to London scientists,  new genetic links to celiac disease have been discovered. An international team of researchers found close to “40 different inherited risk factors which predispose to the disease” (DNA India, boldface added).

We all know that genetics are pretty much entirely responsible for our physical makeup, but I find it interesting that there are so many risk factors that make celiac disease something for which we may be “predisposed.” Just the fact that there are so many millions of people around the world that have CD fascinates me, and it is relatively new disease, historically speaking… rumor even has it that it has something to do with the genetically modified super-gluten that has crept into almost all mainstream food products.

In her book "Harvest for Hope: A Guide to Mindful Eating", famed primatologist Jane Goodall said of genetically modified foods:  "We simply do not know the long-term effects of genetically altering foods" (2006, p. 46).  She also sadly pointed out that "The children of North America have now become the world's lab animals on whom to study the long-term effects of eating GM [genetically modified] products" (p. 62).  We are predisposing ourselves, I often think.

The British-led team of medical researchers identified “four aspects of immune system disturbances that lead to the development of celiac disease” (United Press International).

"We can now shed light on some of the precise immune disturbances leading to coeliac disease. These include how T cells in the body react to toxic wheat proteins, how the thymus gland eliminates these T cells during infancy, and the body's response to viral infections.

"We now understand that many of these genetic risk factors work by altering the amounts of these immune system genes that cells make.

"The data also suggests that coeliac disease is made up of hundreds of genetic risk factors, we can have a good guess at nearly half of the genetic risk at present" (Prof. David van Heel, professor of gastrointestinal genetics at Barts; DNA India; Nature Genetics journal, boldface added).

Toxic wheat proteins…. I’m all for the advancement of science and particularly in medicine, but when our food supply becomes toxic to our own bodies (at least as our body sees it), it is time to stop tampering with what goes into our bodies and start focusing on preventative medicines and treatment, that are both natural and non-toxic, regardless of what levels the FDA deem safe. 

It is good news that the scientific and medical communities are spending the time in research considering celiac disease is becoming so prevalent around the world. According to Reuters, these new findings may help “speed the search for better ways to diagnose and treat the gluten-intolerance disorder” (Reuters.com).

The bad news is that the “study also shows that there is substantial evidence to indicate a shared risk between the gene associated with coeliac disease and many other common chronic immune mediated diseases” including diseases such as type 1 diabetes and rheumatoid arthritis (DNA India, Reuters).

With my own research, I already know that CD is caused by an abnormal immune response to gluten, which can be found in wheat, rye, and barley products and can be hidden just about anywhere —from medicines and vitamins to lip balms and lipsticks. I know that the reaction causes damage to the lining of the small intestine, essentially flattening the villi, which are the tiny, hairlike projections that normally stand upright (mental image: a field of grass moving with the breeze). Each tiny little villi absorbs nutrients which then get absorbed into the blood stream. When the villi are flattened, the body can no longer properly absorb nutrients.... and you may never know it is happening until the damage has already been done.

You may be eating to your heart’s content, but as long as your body cannot receive nutrients on a cellular level, your body will be literally starving to death. This is why the disease affects so many organs and systems in the body—it affects your entire body. You may end up with weakened bones, anemia, chronic fatigue syndrome, weight loss or weight gain, or any one or combination of over 300 symptoms.

In simplest terms for me, gluten is the alien that created crop circles in my gut, substantially reducing my nutrient harvest. There is no cure for it and that the only treatment is a life-long diet free of gluten and avoiding all hidden sources of gluten.  So I have CD.  I live, and I move on.  Do I miss all those bread products and over-processed snacks and addiction to sugar?  Actually.... surpisingly, no.  I don't.  What's to miss?  Horrible stomach pain, a weakened heart, failing organs and a reduced standard of health (i.e., living)?

I think not.  Keep plugging away, researchers!

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?