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!

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!

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?

Is hunger part of Celiac?

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

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

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

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

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

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

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

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

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

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

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

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

Symptoms of Celiac

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

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

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

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

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

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