I have to admit that before we discovered the gluten sensitivity in our family I was completely ignorant as to what on earth gluten was, what it was in, and why it was any big deal. Over the past few months I've been gaining a really quick education on the subject. I like to understand things in really simple, basic terms, so here's my attempt at explaining what gluten sensitivity is all about as briefly and easily as I can.
What's Gluten?Here's a pretty good explanation I copied from
this site:
"In the 7th century, the Buddhist monks discovered gluten, while kneading wheat flour with water to make a dough. Gluten is found naturally in grains and binds together two separate proteins found within the grain. Gluten consists of two proteins, gliadin and glutenin, and is commonly found in wheat, barley and rye. As it is insoluble in water, it can be obtained by washing away the associated starch and used as a leavening agent. An important source of protein, gluten is found in foods in their natural state and also as an additive in low protein foods."
So basically gluten is a mixture of proteins in wheat, barley, and rye. It's the stuff that helps the dough bind and stick together, and also helps the dough rise when baking.
What's Gluten Sensitivity or Intolerance?Because it's associated with foods to avoid, often gluten sensitivity is mistaken as a food allergy, but it's actually an auto immune disease. Celiac disease is the most commonly heard of form of gluten sensitivity, but it's actually only one form of the intolerance. Many people may test negative for celiac (like us) but still have a high intolerance to gluten.
Basically, as food travels through your body into the small intestine there are tons of little fingerlike looking things called villi (shown below) that stick out and grab the nutrients in the food as it passes by. The villi absorb the nutrients your body needs and passes them on into your bloodstream and lets the rest of the unnecessary food/waste pass by.

For a person with gluten sensitivity the gluten acts like a
poison in your system that damages and destroys these villi, cutting them off so as food enters your body the vital nutrients you need are not gathered and it results in malabsorbtion and malnutrition no matter how much food you eat. Gluten also leads to many other health issues (I'll mention below) some of which can be incredibly serious and detrimental.
What are the Symptoms?Well, that's kind of a tricky question because there are over 250 different symptoms attributed to gluten intolerance and they can be portrayed very differently from person to person. This makes diagnosing gluten sensitivity much more difficult and it's why many people often do not know about their intolerance because it's misdiagnosed as so many other things.
But just to give you an idea of some of those symptoms, here's just a few.
First, the "classic" gastrointestinal symptoms can include:Abdominal pain and distension
Acid reflux
Bloating
Constipation
Diarrhea
Gas and flatulence
Greasy, foul-smelling, floating stools
Nausea
Vomiting
Weight loss or weight gain
And many nongastrointestinal symptoms:Fatigue and weakness (due to iron-deficiency anemia)
Vitamin and/or mineral deficiencies
Headaches (including migraines)
Joint/bone pain
Depression, irritability, listlessness, and mood disorders
"Fuzzy brain" or an inability to concentrate
Infertility
Abnormal menstrual cycles
Dental enamel deficiencies and irregularities
Seizures
Ataxia (bad balance)
Nerve damage (peripheral neuropathy)
Respiratory problems
Cancer sores (apthous ulcers)
Lactose intolerance
Eczema/psoriasis
Rosacea
Acne
Hashimoto's disease, Sjorgren's syndrome, lupus erythematosus, and other autoimmune disorders
Early onset osteoporosis
Hair loss (alopecia)
Bruising easily
Low blood sugar (hypoglycemia)
Muscle cramping
Nosebleeds
Swelling and inflammation
Night blindness
Gastrointenstinal cancer
Type 1 diabetes
Thyroid disease
Liver disease
Rheumatoid arthritis
Symptoms in Children:Inability to concentrate
Irritability
ADD/ADHD or autistic-type behaviors
Failure to thrive (in infants and toddlers)
Short stature or delayed growth
Delayed onset of puberty
Weak bones or bone pain
Abdominal pain and distension
Nosebleeds
Whew! That's an exhaustive list!!!! With so many, many different symptoms it's no wonder gluten intolerance is so often misdiagnosed! Not to mention that many people do not have any symptoms until later in life after the amount of gluten in their systems has built up and become worse over time.
Why are Celiac Disease Symptoms so Varied?Here's another great explanation I copied from
this site:
"Researchers are studying the reasons celiac disease affects people differently. The length of time a person was breastfed, the age a person started eating gluten-containing foods, and the amount of gluten-containing foods one eats are three factors thought to play a role in when and how celiac disease appears. Some studies have shown, for example, that the longer a person was breastfed, the later the symptoms of celiac disease appear.
Symptoms also vary depending on a person’s age and the degree of damage to the small intestine. Many adults have the disease for a decade or more before they are diagnosed. The longer a person goes undiagnosed and untreated, the greater the chance of developing long-term complications."
How common is Celiac or Gluten Sensitivity?
Well the answer for how common celiac is in the U.S. is about 2 million people, or roughly 1 in 133 people. But when you consider the amount of people who have non-celiac gluten sensitivity, and those who have been misdiagnosed or do not know they have the intolerance, the actual figures are even more common. Gluten sensitivity is a very common genetic disorder. Among people who have a first-degree relative—a parent, sibling, or child—diagnosed with celiac disease, as many as 1 in 22 people may have the disease.
How do you test for Celiac/Gluten Intolerance?The most common tests are a simple blood test, urine tests, or an intestinal biopsy, however when using a blood or urine test they do not always detect sensitivities that are not specifically the celiac strain of the disease. Stool tests are the newest form of testing and research in this area. EJ and I both tested negative for celiac through blood tests, but she tested positive for high gluten sensitivity through the stool testing.
(I haven't done the stool test yet, but since it's genetic and both of my parents have it we're assuming EJ got it from me and that my test will also be positive. Currently our insurance doesn't cover the test and it's $130 per person, so we're slowly testing family members one by one as we can afford it. We just sent off IK's and LA's tests last week and we should have their results in another week or two).
What's the Treatment/Is there a Cure?Yes and no...another really definite answer here. First, no there is no cure for celiac or gluten sensitivity. However the only treatment/cure is a totally gluten free diet. The incredibly good news though is that a totally gluten free diet can heal all of the intestinal damage in your body over time and can also eliminate many of the related symptoms I listed above.
The time it takes to see these changes depends on the age of the person, the amount of gluten built up in their system, and the amount of damage that's already been done. Typically many people begin to see significant improvements within 4-6 months after they begin a GF diet.
So, what's a Gluten Free Diet?Well, gluten is found primarily in wheat, barley, and rye. (It can also be found in oats, bulgur, durum wheat, semolina, emmer/farro wheat, matzo flour, udon, and spelt). Oats naturally are GF, but because they are grown so closely to wheat fields most of the time you cannot be sure the oats are not contaminated, so as a general rule they're on the list of foods to avoid.
*****So the general rule is: NO wheat, barley, rye, or oats.*****
And that's why going gluten free becomes such a BIG deal, because of all the numerous foods containing those ingredients!!! Just think about it for a minute...all the breads, rolls, buns, biscuits, cakes, muffins, cookies, brownies, cereals, bagels, crackers, pasta, pizza, etc.!!!!!
And those are just all the obvious foods. Going GF means you have to start reading labels on everything because manufacturers love to put gluten in all kinds of other products like meat marinades, salad dressings, lip balms, soy sauce, etc. They esp. love to put malt flavoring or malt extract in so many, many products which makes reading labels a very annoying new way of life.
It also makes dining out, school parties, birthday parties, sleepovers, school fieldtrips, potlucks, dinner invitations at a friend's house, church trips, etc. more complicated because each activity has the potential for lots of foods you and your children can no longer eat. Which means tons of calls ahead of time to figure out what foods will be served so you can plan accordingly to pack your own alternative meals when needed.
And now you understand why I've been doing sooooo much complaining about making this transition!!!!!!! Going GF has become my new full-time job. I'm now the gluten police, the gluten Natzi, in my home constantly watching like a hawk to make sure my kids aren't eating anything containing gluten...and yes, it's a job I hate doing but don't have a choice.
Since we've gone 100% gluten free in our home it's not so bad here because the kids can pull anything out of the fridge or pantry to eat with no worries. It's all the school, church, friends homes, etc. I have to worry about.
And it's a lot of time spent educating other people about what my kids can't eat too...some of it is kind of funny, but understandable since I didn't know anything about gluten before all of this either. Now that I do know, phone calls like the one I received today from a parent where EJ was having a sleepover calling to ask me if she could eat a potato was pretty funny!
So there you have it...everything you ever wanted to know or didn't want to know all about gluten intolerance. It's been almost 1 whole month since we've made the conversion to a totally GF lifestyle and it's challenging, but also getting a lot easier day by day. It's a LOT more work in meal planning that I ever wanted to do, (or think about, or care about at all) but if it improves our health then it's totally worth it!