It's incredible to me that considering the prevalence of gluten intolerance/celiac disease, SO few people are actually aware of it.
Recent studies have revealed that 1 in 133 people are gluten-intolerant, and 1 in 100 have celiac disease. Isn't that incredible?! (FYI: difference between gluten-intolerant and celiac-positive is simply the degree to which you have been effected, or the severity of your allergy, basically.)
And yet, despite these figures, a friend of mine who recently went to her doctor for testing was informed that they "didn't test for" and "didn't really believe in" celiac disease. (!)
To be fair, a few things should be acknowledged which inhibit the general population as well as (apparently!) some medical personnel from being well informed concerning this issue.
1) Latency:
Gluten intolerance and Celiac Disease can lie dormant in your system for years. It IS genetic, but it is most frequently developed later in life after it is "triggered".
"Various trigger factors have been reported. Some appear to have celiac disease triggered by the trauma of surgery. Women often develop symptoms after delivering a baby. Some celiacs report having a viral infection... the 'viral infection' continues for weeks until it is diagnosed as celiac disease. Severe psychological stress has also been reported as a trigger factor. Divorce, death of a loved one, or loss of a job can occur in proximity to the onset of the disorder."
Common triggers include surgery, viral infection, severe stress, a hard fall or trauma to the body, pregnancy, or car accident/accident trauma in general.
"studies indicate that an adult
with Celiac Disease will remain undiagnosed
an average of eleven long years...
or longer...before discovering they have Celiac Disease."
2) Confusion with IBS/other gastrointestinal disease/disorders
Because Celiac and gluten allergies are just now coming to the public eye, many doctors continue to misdiagnose celiac disease as IBS, or Irritable Bowel Syndrome.
"In cases where the main symptoms are non-digestive symptoms such as anemia and fatigue, the condition might be misdiagnosed, not as Irritable Bowel Syndrome (IBS), but as Chronic Fatigue Syndrome, depression, or even other fatigue-causing disorders."
It doesn't help that those with Celiac Disease are frequently dealing with at least one other autoimmune disease such as lupus, rheumatoid arthritis,
chronic fatigue syndrome, fibromyalgia syndrome, or multiple sclerosis, to name a few.
"Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. In fact, sometimes celiac disease is confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn’s disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease is commonly underdiagnosed or misdiagnosed."
3) Negative/positive testing complications
If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if celiac disease is actually present.
If the tests and symptoms suggest celiac disease, the doctor will perform a small bowel biopsy. During the biopsy, the doctor removes a tiny piece of tissue from the small intestine to check for damage to the villi. To obtain the tissue sample, the doctor eases a long, thin tube called an endoscope through the mouth and stomach into the small intestine.
The other type of testing available (specifically to those who have not been eating gluten, and therefore will test negative for the disease) is genetic marker testing. This type of testing does not CONFIRM that you have Celiac disease, but it will confirm if you do NOT. How does that make sense? Well, certain genetic markers are present in the genes of those who have NO chance of developing Celiac's. Thus, if you have these markers, you cannot develop Celiac disease.
4) Wheat free vs. gluten free
Wheat allergy is not the same thing as a gluten intolerance.
"We use gluten to refer to proteins found in any grains that can cause harm to persons with celiac disease. 'Grains of concern' refers to wheat, rye, barley and oats and their related species such as durum, spelt and kamut or their crossbred hybrids such as triticale, which is a cross between wheat and rye."
Many people diagnosed with a wheat allergy may actually be gluten intolerant, and therefore (without cutting many other things from their diet separate from only wheat) will continue to be sick and develop food allergy symptoms.
All of these factors as well as many others have combined to cultivate a widespread ignorance, which is dangerous to the health and happiness of many.
Before looking at the dangers and implications of celiac disease, lets review the definition and symptoms.
"Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, and barley [among other things]. Gluten is found mainly in foods but may also be found in products we use every day, such as stamp and envelope adhesive, medicines, and vitamins.
When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging the small intestine. The tiny, fingerlike protrusions lining the small intestine are damaged or destroyed. Called villi, they normally allow nutrients from food to be absorbed into the bloodstream. Without healthy villi, a person becomes malnourished, regardless of the quantity of food eaten.
Because the body’s own immune system causes the damage, celiac disease is considered an autoimmune disorder. However, it is also classified as a disease of malabsorption because nutrients are not absorbed...
Celiac disease is a genetic disease, meaning it runs in families. Sometimes the disease is triggered—or becomes active for the first time—after surgery, pregnancy, childbirth, viral infection, or severe emotional stress."
So. There you have the definition. (And remember those villi... they come up later when we discuss lactose intolerance...)
Here are the symptoms:
"Celiac disease affects people differently. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed...
Symptoms of celiac disease may include one or more of the following:
* gas
* recurring abdominal bloating and pain
* chronic diarrhea
* constipation
* pale, foul-smelling, or fatty stool
* weight loss/weight gain
* fatigue
* unexplained anemia (a low count of red blood cells causing fatigue)
* bone or joint pain
* osteoporosis, osteopenia
* behavioral changes
* tingling numbness in the legs (from nerve damage)
* muscle cramps
* seizures
* missed menstrual periods (often because of excessive weight loss)
* infertility, recurrent miscarriage
* delayed growth
* failure to thrive in infants
* pale sores inside the mouth, called aphthous ulcers
* tooth discoloration or loss of enamel
* itchy skin rash called dermatitis herpetiformis
A person with celiac disease may have no symptoms. People without symptoms are still at risk for the complications of celiac disease, including malnutrition. The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications."
There you have it. Make sense? Not the best conversation-starters there, but hey... facts are facts. And our bodies let us know when something is bothering them. They were made to!
Having grasped these logistics, here are the basic facts on the health and lifestyle of someone with a gluten intolerance/sensitivity or celiac disease.
"The only treatment for celiac disease is to follow a gluten-free diet. When a person is first diagnosed with celiac disease, the doctor usually will ask the person to work with a dietitian on a gluten-free diet plan... Someone with celiac disease can learn from a dietitian how to read ingredient lists and identify foods that contain gluten in order to make informed decisions at the grocery store and when eating out.
For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvements begin within days of starting the diet. The small intestine is usually completely healed in 3 to 6 months in children and younger adults and within 2 years for older adults. Healed means a person now has villi that can absorb nutrients from food into the bloodstream.
Some people with celiac disease show no improvement on the gluten-free diet. This condition is called unresponsive celiac disease. The most common reason for poor response is that small amounts of gluten are still present in the diet. Advice from a dietitian who is skilled in educating patients about the gluten-free diet is essential to achieve the best results.
Rarely, the intestinal injury will continue despite a strictly gluten-free diet. People in this situation have severely damaged intestines that cannot heal. Because their intestines are not absorbing enough nutrients, they may need to receive nutrients directly into their bloodstream through a vein, or intravenously. People with this condition may need to be evaluated for complications of the disease. Researchers are now evaluating drug treatments for unresponsive celiac disease."
But then... the obvious question. Can you cure it?
The answer is no... but don't lose hope! Read the following:
"In order to stay well, people with celiac disease must avoid gluten for the rest of their lives. Eating any gluten, no matter how small an amount, can damage the small intestine. The damage will occur in anyone with the disease, including people without noticeable symptoms..."
BUT... some people have been known to develop celiac disease, and then have it reversed later in life by the same sort of symptoms which trigger it.
Now, I'm not looking to go throw myself in front of another car, although I'm hoping that one day having a child of my own may juuuuust possibly reverse this disease.
But I am not living for that day - or putting all of my joy in that hope; and not only because I trust God!
Before you get discouraged, if you've identified with these symptoms, have a positive diagnosis, or know someone who does, let me assure you; going gluten-free is not easy, but it's NOT the end of all things good and certainly not as restrictive as you might expect, particularly in this day and age.
In the next post, I plan to review not only what to AVOID, but all of the wonderful alternatives available for people like you and I.
Keep on keepin' on!
Friday, July 13, 2007
Monday, July 9, 2007
continued...
From there followed months of doctor visit after doctor visit.
It all began when the Dr. examining my elbow (turns out I had a chip off the bone) remarked that I looked anemic.
Mom and I took this seriously, because for weeks following the accident I had been sleeping all the time and had become progressively pale and ashen looking.
I was afraid at the thought of bleeding inside or some strange disease as an alternative... but all tests showed up negative. I wasn't anemic, I wasn't experiencing internal bleeding, and the exhaustion wasn't from Mono or Limes Disease.
What was it? We decided it must simply be a phase I was going through... some trauma related to the accident which would eventually disappear.
But it didn't... I was still falling asleep anywhere and at any time... after struggling to keep my eyes open in school, even on 9-12 hours of sleep, I would come home and fall asleep on our hardwood floor. There was definitely something wrong - but what? I had no other symptoms.
Then, about 3 months after the accident, I became horribly sick - I couldn't keep anything in my stomach. I felt worse on certain days, and the migraines I had started having after the accident got so bad that I would often lie in bed for hours. I couldn't sit at a computer for long without either falling asleep or getting a headache, and I was so sick that I stopped running (if you know me, you understand why that is significant :))
What was wrong? Was it a virus? Something that couldn't be diagnosed?
The answer came through God's sovereign intervention in the form of my dear friend, Beth. Through a set of circumstances, we began discussing a condition she had - something I had never heard of - Celiac's disease/gluten sensitivity.
An allergy to bread that gives you headaches, makes you sleepy, and messes up your digestive system? I'd never heard of anything like that. And I loved bread! But... after recent and frightening episodes of falling asleep driving, being sick to my stomach all the time, frequent headaches and two serious incidents where I was so sick that I lay in bed for entire days, I was ready to try anything.
So I cut bread from my diet.
And felt better. Not all the way healed by any means, but better.
Then I found out that Celiac's disease or gluten sensitivity includes way more than bread...
I stopped eating all oat, rye, barley, whole grain, spelt, kamut, wheat, and so much more. I stopped licking envelopes, threw out my facewash (made with wheat extract), checked labels on toothpaste and mouthwash and salad dressing...
I felt so much better - it was incredible. I was almost back to healthy sleep patterns, I had no vomiting episodes and few headaches - no migraines - but I still had some digestive issues. I discovered that if the villi in your stomach have been blunted in relation to a gluten sensitivity, you can't process lactose.
So I gave it a try. I cut all milk products from my diet. And I felt incredible. I was rarely sick or nauseous and the headaches were almost gone. (At this point I had already realized I was additionally hypoglycemic - which entailed eating every 3 hours to keep my blood sugar levels correct and not eating sugar, which would spike my blood sugar, give me a headache, and send me cold and shaking to bed where I would sleep it off.)
I began to read up a little bit more on the triggers and complexities of gluten sensitivity, lactose intolerance, and hypoglycemia. I discovered a wealth of information hidden beneath a serious public ignorance concerning these issues.
And that's only one of my reasons for beginning this blog.
It all began when the Dr. examining my elbow (turns out I had a chip off the bone) remarked that I looked anemic.
Mom and I took this seriously, because for weeks following the accident I had been sleeping all the time and had become progressively pale and ashen looking.
I was afraid at the thought of bleeding inside or some strange disease as an alternative... but all tests showed up negative. I wasn't anemic, I wasn't experiencing internal bleeding, and the exhaustion wasn't from Mono or Limes Disease.
What was it? We decided it must simply be a phase I was going through... some trauma related to the accident which would eventually disappear.
But it didn't... I was still falling asleep anywhere and at any time... after struggling to keep my eyes open in school, even on 9-12 hours of sleep, I would come home and fall asleep on our hardwood floor. There was definitely something wrong - but what? I had no other symptoms.
Then, about 3 months after the accident, I became horribly sick - I couldn't keep anything in my stomach. I felt worse on certain days, and the migraines I had started having after the accident got so bad that I would often lie in bed for hours. I couldn't sit at a computer for long without either falling asleep or getting a headache, and I was so sick that I stopped running (if you know me, you understand why that is significant :))
What was wrong? Was it a virus? Something that couldn't be diagnosed?
The answer came through God's sovereign intervention in the form of my dear friend, Beth. Through a set of circumstances, we began discussing a condition she had - something I had never heard of - Celiac's disease/gluten sensitivity.
An allergy to bread that gives you headaches, makes you sleepy, and messes up your digestive system? I'd never heard of anything like that. And I loved bread! But... after recent and frightening episodes of falling asleep driving, being sick to my stomach all the time, frequent headaches and two serious incidents where I was so sick that I lay in bed for entire days, I was ready to try anything.
So I cut bread from my diet.
And felt better. Not all the way healed by any means, but better.
Then I found out that Celiac's disease or gluten sensitivity includes way more than bread...
I stopped eating all oat, rye, barley, whole grain, spelt, kamut, wheat, and so much more. I stopped licking envelopes, threw out my facewash (made with wheat extract), checked labels on toothpaste and mouthwash and salad dressing...
I felt so much better - it was incredible. I was almost back to healthy sleep patterns, I had no vomiting episodes and few headaches - no migraines - but I still had some digestive issues. I discovered that if the villi in your stomach have been blunted in relation to a gluten sensitivity, you can't process lactose.
So I gave it a try. I cut all milk products from my diet. And I felt incredible. I was rarely sick or nauseous and the headaches were almost gone. (At this point I had already realized I was additionally hypoglycemic - which entailed eating every 3 hours to keep my blood sugar levels correct and not eating sugar, which would spike my blood sugar, give me a headache, and send me cold and shaking to bed where I would sleep it off.)
I began to read up a little bit more on the triggers and complexities of gluten sensitivity, lactose intolerance, and hypoglycemia. I discovered a wealth of information hidden beneath a serious public ignorance concerning these issues.
And that's only one of my reasons for beginning this blog.
Friday, July 6, 2007
How it all began [we think]
The sovereignty of God never ceases to amaze me.
On December 24, 2005, my alarm went off at 8:07 a.m.
I like setting my alarm at random, odd-digit times to wake up.
It's a habit.
I stretched; got out of bed; put on my gray sweatsuit workout clothes; ate a little piece of homemade whole wheat toast with peanut butter (resisting the dozens of peanut butter kiss cookies lining the counter, awaiting our family Christmas Eve decorating of the tree/cookie-consuming tradition); read my favorite passage of Romans; loaded my new Matt Kearney CD onto my computer and thence to my Ipod nano; stuck my water bottle, purse, headphones, and gym bag in our white Toyota previa; called out a "g'bye!" to my mom, and - cell phone in hand - left my driveway for the 6 minute drive up to Fitness First, as I'd done a million times before.
As I drove past the drainage pond, Gardenia, the school... I thought through my day.
I've always been a scheduler. I love to know - hour by hour - exactly what I'm going to do with my time. Today was no exception.
"Hmmm.. gym from 9-10, shower... maybe starbucks, home, finish my quiet time, double-check my gift list to make sure I haven't forgotten anything (or anyone), munch a few cookie and finish wrapping... hide the baby jesus..."
my cell phone buzzed harshly, and I groped around in my purse with a free hand, keeping my eyes on the road as I checked the caller ID.
It was dad. "Hey big girl, what's your plan for the day?"
"Hey dadio man... wellll I'm on my way to the gym, should be home by 9. If mom..."
Out of the corner of my left eye, through the window, I saw for one split second something large and black... and then time and perception swung into a chaotic hyperspeed of sound, pain, and motion.
The cell phone was flung from my hand as the Toyota Sequoia barreled into the driver's side, sending both cars flying over the 15 mph speed bump.
The large black car barreled through the nose of the previa, whipping my body up against the left window, wrenching the wheel from my grip as my van spun a full 360 degrees and headed for the sidewalk, a brick community sign, and the trees.
I didn't even know her car had rolled twice after knocking my engine through the right side of the car, twisting the body into a distorted moon-shape before what was left of the nose of the minivan connected with a tree and flung me - left arm upraised to shield my face - into the airbag; scorching my forearm with the chemical and friction, it sent a dense, smoky cloud into the air around me.
The stench caught me off guard, and the dust made me cough. Trying not to breathe in through my nose, I unbuckled my seat belt and - frantic and disoriented - tried to discern whether the car was on fire or not. I didn't know... but I wasn't gong to wait to find out.
Coughing and choking, I grabbed my purse and phone from the floor, and attempted to open my door. It wouldn't budge.
The initial impact of the Sequoia on the door had wrapped the metal around the hinges, blocking my attempts to get out.
I climbed through to the passenger side door and forced it open.
When I stepped out, I saw the black car, immediately on my right, not 100 yards from where the Previa had jumped the sidewalk, missing the brick sign but colliding with the tree. The car was upright, and although shattered glass from both vehicles lay everywhere, both seemed relatively intact.
I didn't see any movement... "O Lord," I thought, "Let them be alive... whoever they are..."
I stepped cautiously forward.
The door opened, and a young girl with a blonde ponytail, tear-stained face, dark hoodie and pink, plaid pajama pants stepped shakily out.
I looked at her for a second, and all anxiety and fear drained from me. I stopped shaking, and although I suddenly became aware of the sharp, biting pain in my left arm, I felt the peace of God and walked over to her, put my arms around her, and let her cry into my shoulder.
After establishing that she was feeling fine, I realized I should call 911 - but simultaneously remembered that I had been on the phone with Dad at the time of the accident. I decided to call Dad first.
As I walked back towards my car, clutching my left arm to my chest and punching redial with my right, police sirens blared and two squad cars, an ambulance, and a fire truck pulled up; someone had observed and reported the accident already.
My dad's voice cut through the melee, and while the young girl sobbed out the story to a gruff policewoman, I chokingly reassured my daddy. He was actually on his way, with my mom. They had guessed what happened from what my dad heard on his end, and would be there shortly.
Still calm, I went and explained my side of the story to the officers; firmly turning down the request that I accompany them to the hospital in the ambulance.
"My mom is a nurse. I'll be fine."
The girl's parents pulled up only a few minutes after mine. Following a shaky and prolonged hug with my daddy, we all went over and tried to discuss the practicals.
However, with the woman (who turned out to be the girl's stepmom) smoking and crying while the daughter sobbed into her dad's arms, we didn't do a whole lot of problem-solving.
A few things were clear: first; she was speeding and had also completely disregarded the stop sign, and secondly; it was a miracle we were both alive, but particularly me. If I had been traveling a little bit faster, she would have hit less of the front left portion of the car and much more of my shoulder area - possibly causing a severe head injury or killing me.
She left, with her parents, in the ambulance.
I showed mom my arm, and, after ensuring no bones were broken and no head damage had occurred, we decided to go home.
I was so grateful to be alive - the entire incident had been so surreal, but I knew the Lord had protected me.
I'd not only walked away with my life - I was relatively unscathed.
True, my left side was already bruising, I had a bit of a headache, all of my back muscles were tense, and my left arm throbbed like crazy, but there were no severe injuries... right?
How little did I know then how much that day would change my life.
On December 24, 2005, my alarm went off at 8:07 a.m.
I like setting my alarm at random, odd-digit times to wake up.
It's a habit.
I stretched; got out of bed; put on my gray sweatsuit workout clothes; ate a little piece of homemade whole wheat toast with peanut butter (resisting the dozens of peanut butter kiss cookies lining the counter, awaiting our family Christmas Eve decorating of the tree/cookie-consuming tradition); read my favorite passage of Romans; loaded my new Matt Kearney CD onto my computer and thence to my Ipod nano; stuck my water bottle, purse, headphones, and gym bag in our white Toyota previa; called out a "g'bye!" to my mom, and - cell phone in hand - left my driveway for the 6 minute drive up to Fitness First, as I'd done a million times before.
As I drove past the drainage pond, Gardenia, the school... I thought through my day.
I've always been a scheduler. I love to know - hour by hour - exactly what I'm going to do with my time. Today was no exception.
"Hmmm.. gym from 9-10, shower... maybe starbucks, home, finish my quiet time, double-check my gift list to make sure I haven't forgotten anything (or anyone), munch a few cookie and finish wrapping... hide the baby jesus..."
my cell phone buzzed harshly, and I groped around in my purse with a free hand, keeping my eyes on the road as I checked the caller ID.
It was dad. "Hey big girl, what's your plan for the day?"
"Hey dadio man... wellll I'm on my way to the gym, should be home by 9. If mom..."
Out of the corner of my left eye, through the window, I saw for one split second something large and black... and then time and perception swung into a chaotic hyperspeed of sound, pain, and motion.
The cell phone was flung from my hand as the Toyota Sequoia barreled into the driver's side, sending both cars flying over the 15 mph speed bump.
The large black car barreled through the nose of the previa, whipping my body up against the left window, wrenching the wheel from my grip as my van spun a full 360 degrees and headed for the sidewalk, a brick community sign, and the trees.
I didn't even know her car had rolled twice after knocking my engine through the right side of the car, twisting the body into a distorted moon-shape before what was left of the nose of the minivan connected with a tree and flung me - left arm upraised to shield my face - into the airbag; scorching my forearm with the chemical and friction, it sent a dense, smoky cloud into the air around me.
The stench caught me off guard, and the dust made me cough. Trying not to breathe in through my nose, I unbuckled my seat belt and - frantic and disoriented - tried to discern whether the car was on fire or not. I didn't know... but I wasn't gong to wait to find out.
Coughing and choking, I grabbed my purse and phone from the floor, and attempted to open my door. It wouldn't budge.
The initial impact of the Sequoia on the door had wrapped the metal around the hinges, blocking my attempts to get out.
I climbed through to the passenger side door and forced it open.
When I stepped out, I saw the black car, immediately on my right, not 100 yards from where the Previa had jumped the sidewalk, missing the brick sign but colliding with the tree. The car was upright, and although shattered glass from both vehicles lay everywhere, both seemed relatively intact.
I didn't see any movement... "O Lord," I thought, "Let them be alive... whoever they are..."
I stepped cautiously forward.
The door opened, and a young girl with a blonde ponytail, tear-stained face, dark hoodie and pink, plaid pajama pants stepped shakily out.
I looked at her for a second, and all anxiety and fear drained from me. I stopped shaking, and although I suddenly became aware of the sharp, biting pain in my left arm, I felt the peace of God and walked over to her, put my arms around her, and let her cry into my shoulder.
After establishing that she was feeling fine, I realized I should call 911 - but simultaneously remembered that I had been on the phone with Dad at the time of the accident. I decided to call Dad first.
As I walked back towards my car, clutching my left arm to my chest and punching redial with my right, police sirens blared and two squad cars, an ambulance, and a fire truck pulled up; someone had observed and reported the accident already.
My dad's voice cut through the melee, and while the young girl sobbed out the story to a gruff policewoman, I chokingly reassured my daddy. He was actually on his way, with my mom. They had guessed what happened from what my dad heard on his end, and would be there shortly.
Still calm, I went and explained my side of the story to the officers; firmly turning down the request that I accompany them to the hospital in the ambulance.
"My mom is a nurse. I'll be fine."
The girl's parents pulled up only a few minutes after mine. Following a shaky and prolonged hug with my daddy, we all went over and tried to discuss the practicals.
However, with the woman (who turned out to be the girl's stepmom) smoking and crying while the daughter sobbed into her dad's arms, we didn't do a whole lot of problem-solving.
A few things were clear: first; she was speeding and had also completely disregarded the stop sign, and secondly; it was a miracle we were both alive, but particularly me. If I had been traveling a little bit faster, she would have hit less of the front left portion of the car and much more of my shoulder area - possibly causing a severe head injury or killing me.
She left, with her parents, in the ambulance.
I showed mom my arm, and, after ensuring no bones were broken and no head damage had occurred, we decided to go home.
I was so grateful to be alive - the entire incident had been so surreal, but I knew the Lord had protected me.
I'd not only walked away with my life - I was relatively unscathed.
True, my left side was already bruising, I had a bit of a headache, all of my back muscles were tense, and my left arm throbbed like crazy, but there were no severe injuries... right?
How little did I know then how much that day would change my life.
Tuesday, July 3, 2007
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