Living With Celiac Disease

Updated on January 22, 2018
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I was diagnosed with celiac disease after suffering for years. I've compiled my research to help others with the disease.

Celiac disease often goes undiagnosed for years because the symptoms present similarly to a variety of ailments.
Celiac disease often goes undiagnosed for years because the symptoms present similarly to a variety of ailments.|Source

What Is Celiac Disease?

Celiac disease (CD), also known as celiac sprue or simply sprue, is a systemic autoimmune disease that attacks the villi of the small intestine in genetically predisposed individuals. CD can affect any organ system in the human body and presents with a variety of symptoms.

All too many people suffering from the condition go undiagnosed for years because doctors do not routinely screen for it. In fact, most individuals are either misdiagnosed or go undiagnosed because they do not present with "classic celiac symptoms."

Up until recently, research on the disease and our knowledge of the condition was limited. What was thought to be true several years ago has been found to be untrue in many cases. Researchers are now looking at gluten, prolamins, and lectins, and the findings are interesting, to say the least.

Classical Symptoms of Celiac Disease

Diarrhea
Vomiting
Abdominal pain
Nausea
Reflux
Skin disorders
Bloating
Steatorrhea or fatty stools
Brain fog

My Experience and Diagnosis With Celiac Disease

My diagnosis took years to confirm even though I had symptoms in my childhood. When I was a kid, I didn't present with the "hallmark" symptom of diarrhea. Instead, I had nausea and canker sores. I was not diagnosed until 2009 when I told my present physician of the non-classical symptoms of celiacs I had been experiencing. I was often nauseated after eating bread, corn, oatmeal, and rice which were staples in my diet for years. My doctor soon ordered several blood tests and voila! I was officially diagnosed with celiac disease.

My mother is a different story. She suffered for years, complained about excessive diarrhea and nausea, yet her doctor never once pursued testing. If not for my diagnosis, my learned knowledge about genetic predisposition, and insisting that my mother get tested, she would still be suffering.

If you or a family member has already been diagnosed with celiacs, then you need to help your body heal. You can learn how to live with CD especially if it is diagnosed early. I spent hours researching the disease and have compiled my research so that you don't have to invest hours of your time like I have and still do. It is extremely important to heal in order to avoid the myriad of complications that can emerge if you choose not to treat the disease properly.

Gastrointestinal issues is a common complaint associated with celiac disease.
Gastrointestinal issues is a common complaint associated with celiac disease.|Source

Celiac Disease Symptoms

The disease can present with a myriad of possible symptoms at any time during one's lifetime. Symptoms may appear shortly after infancy or the disease can lie dormant for years and present during the third or fourth decade of life or even later.

The most common or "classic" and readily recognizable gastrointestinal symptoms are:

  • Diarrhea (what doctors look for)
  • Bloating
  • Nausea
  • Vomiting
  • Reflux
  • Steatorrhea or fatty stools (they float like a boat)
  • Abdominal pain

Important Information on CD

Celiac disease all too often goes undiagnosed for years because it can present with a myriad of confusing symptoms. Childhood symptoms may be different from adult-onset, and the disease can affect any organ system in the human body. Long-term, undiagnosed celiacs can affect the heart, lungs, liver, pancreas, and kidneys, not just the small intestines. People with long-term, undiagnosed CD may experience GI, hormonal, neurological, and other systemic symptoms together or intermittently.

The Cause of Celiac Disease

Gliadin, a glycoprotein, and a protein known as glutenin (both of which are found in abundance in wheat, barley, and rye) together trigger the disease. In layman terms, CD is caused by a reaction to proteins (prolamins) found in wheat, barley, rye, and other grains.

Celiac disease is not the same as a wheat allergy or another food allergy. A true wheat allergy is immediately life-threatening and triggers anaphylaxis, whereas CD may become life-threatening over time depending on the severity of damage to the small intestine and comorbidity with other autoimmune diseases.

The disease is known by several other names such as coeliac disease, coeliac sprue, sprue, non-tropical sprue, endemic sprue, gluten enteropathy, or gluten-sensitive enteropathy.

Gluten sensitivity or gluten intolerance are often used in the same breath as celiac disease, present with similar symptoms, but are not celiac disease. CD damages the intestines whereas gluten sensitivity does not. CD is an autoimmune disease whereas gluten sensitivity is not.

Dermatitis herpetiformis is a common symptom of celiac disease.
Dermatitis herpetiformis is a common symptom of celiac disease.

Non-Gastrointestinal Symptoms of Celiac Disease

Celiac disease can cause non-gastrointestinal symptoms such as skin disorders, neurologic symptoms, and hormonal disorders. For example:

  • Skin disorders such as dermatitis herpetiformis is an itchy skin condition characterized by a rash or blisters involving the extremities, the trunk, the buttocks, the scalp, and the neck. I'm lucky and have this. My doctor thought it was eczema because it can and does look like eczema.
  • Neurologic (nervous system) symptoms such as weakness, imbalance, and sensory changes (for example, the sensation of touch and pain).
  • Hormonal disorders, such as loss of menstruation or infertility in women and impotence and infertility in men, are very uncommon.

CD symptoms usually first present in children. Since the disease impairs nutrient absorption which is essential for growth, children may be short in stature. Behavioral disturbances including depression, irritability, and poor school performance are also common.

The symptoms of adult-onset celiac sprue may seem to simply appear out of the blue, however, the disease is often first triggered by severely stressful events such as the death of a spouse or a similar tragedy.

There isn't really a "typical" scenario when it comes to celiac disease. Due to the real possibility of complications caused by long-term, undiagnosed CD, you could be experiencing a vast number of symptoms not even mentioned here.

Unexplained symptoms should not go undiagnosed.
Unexplained symptoms should not go undiagnosed.|Source

Unexplained Symptoms Should Not Go Undiagnosed

Celiac disease is directly linked to intestinal cancer and small bowel lymphoma. Even though the chances of your CD developing into complicated or refractory celiac disease, intestinal cancer, or small bowel lymphoma is small, evidence suggests that untreated CD can potentially lead to disease-related mortality.

Undiagnosed and uncontrolled CD often triggers other autoimmune diseases, therefore, it is imperative to get it under control as soon as possible.

Who Should Be Tested for Celiac Disease?

In my opinion, anyone with unexplained or undiagnosed GI symptoms should be tested for CD. If other peculiar symptoms such as mouth ulcers (canker sores), tingling hands or feet, RLS (restless leg syndrome), rashes, or any other off-the-wall symptoms are present concurrently or intermittently with GI symptoms, you should definitely get tested. CD can attack any of the major organs, thereby creating one to a dozen symptoms that do not seem to point to any one diagnosis in particular.

You could have mouth sores, steatorrhea (fatty stools that float), nausea, tingling hands, and restless leg syndrome one week, and constant diarrhea the next week with no other symptoms. You could go through years of undiagnosed suffering and intestinal damage such as malabsorption, lactose intolerance, even intestinal cancer, and other malabsorptive disorders.

Diagnosing Celiac Disease

Diagnosing CD starts with your doctor. You should give your complete medical history so that he/she can get a feel for your past and current medical situation. Discuss any medical conditions that your parents may have had if they are similar to the symptoms that you are experiencing. Your doctor may order certain blood tests that will either confirm or rule out CD.

You can fill out this form, print it out, and take it to your doctor:

Additional Diagnosis Information

Informational Video on the Levels of Gluten Sensitivity

Celiac Disease Treatment Means a Gluten-Free Diet

The only treatment for CD is a gluten-free diet. A gluten-free diet means no wheat, barley, rye, products that contain them, or substances (derivatives) made wholly or partially from them. No gluten, period.

The gluten-free diet is much more difficult to adhere to than one would think because wheat, barley, and food ingredients or additives that contain gluten (i.e. malt) may be found in almost anything. Canned soups are a prime example. Who would think that tomato soup would contain wheat? Yet, many tomato soups do contain wheat. Wheat flour is used as a thickening agent.

It's not as easy as it would seem to maintain a gluten-free diet because gluten (from wheat, rye, barley) is used in almost everything from flour, pasta, and gravy mixes, to spices!

I learned the hard way how difficult it is to know which foods contain gluten and which foods do not. If your food is "processed," be careful. It isn't just tomato soup that contains wheat or gluten from wheat, barley, and rye. Soy sauce, wine, liquor, beer, imitation crab, even spices (the combinations used for grilling, etc.) can contain gluten. There is also cross-contamination.

Cross-Contamination

Cross-contamination is a real problem for celiacs. Cross-contamination simply means that non-gluten foods can become contaminated with gluten due to being processed or cooked in a gluten-laden environment.

Cross-contamination drives me nuts. It only takes a very small portion of gluten (the amount that could fit on a pinhead) to create symptoms, and even less to damage the small intestines.

The cooking environment is almost always contaminated with gluten-containing foods if those foods were cooked anywhere other than your own kitchen. All someone has to do is butter your gluten-free toast using the same knife that was used to butter someone else's regular toast and bam! You get sick!

Processed foods are often manufactured on the same equipment as foods containing gluten. Even if gluten isn't directly in the product, it may be manufactured in a facility that cross-contaminates. You may want some cornmeal, but when you read the label, you carefully notice in fine print that the product is manufactured in a facility that processes wheat, barley, or rye.

If you call manufacturers of a product to ask them if their product is gluten-free, they may not be able to give you a definitive "yes" because they are not be familiar with all of the ingredients obtained from third-party suppliers.

Even peanuts (any nuts) which do not contain gluten are usually processed in plants that also process wheat and barley. Also, many peanut products use wheat for anti-caking agents or in spices. This is a major problem for me because I love peanuts! And guess what? It is almost impossible to find a nut that hasn't been cross-contaminated. Similarly, most peanut butter is not gluten-free. I have only found one brand of peanut butter that is gluten-free and that brand is Smart Balance. That's the diet for CD—no gluten. There is no other existing treatment.

Gluten, from Latin, translates as "glue."
Gluten, from Latin, translates as "glue."|Source

What If You Don't Respond to a Gluten-Free Diet?

Big pharma is working diligently to produce some more toxic drugs for us celiacs to take, but when those come to market, I will still opt for the diet route. Fresh veggies, grass-fed beef, and truly free-range chicken, turkey, and wild fish won't kill you, but FDA-approved drugs are a different story.

For most people, the normal gluten-free diet is effective at eliminating celiac disease symptoms, yet a certain percentage of people do not respond well. So, what do you do if you are among that group of people? You make a list and re-check everything!

Did you clean your kitchen totally to make it gluten-free? Did you throw out all food products that may not be gluten-free? Did you thoroughly clean (scrub) all appliances, containers, cupboards, dishes, silverware, utensils, and counters? If not, that could be your problem. You need to do it.

Did you check everything that you currently put in your mouth? What you put in your mouth on a daily, weekly, monthly basis matters! What do you eat and drink daily? If you eat mainly processed foods, look at the labels and check the ingredients. Go online and find out what the ingredients are if you don't know.

Meats should come under close scrutiny because smoked meats, deli meats, processed meats (bacon, weiners, ham, hamburger, sausage), processed fish and seafood (smoked, fake crab, canned tuna) are usually unsafe. If you didn't grow it, catch it, and butcher it, it may be unsafe. Usually fresh or frozen fish from the butcher is safe, as is chicken, Cornish game hens, steak, roasts, chops, and other cuts of beef, pork, and lamb, but anything that is the least bit processed, stuffed, basted, or contains any weird ingredients (hydrolyzed vegetable protein) is probably unsafe. If it's processed and doesn't say "gluten-free," it probably isn't.

Once you have reviewed everything including any prescription medications, OTC remedies for colds and flu, toothpaste, mouthwash, lip balm, vitamins, minerals, antioxidants, shampoo, conditioner, sunscreen, and anything that you put in your mouth or can be absorbed through the skin, then it may be time to try excluding other grains from your diet.

What About Corn?

It could be that corn causes a response in you, too! Corn and anything made with or from corn may also be a problem for about 1/3 of celiacs. In several studies, the gluten in corn created an unwanted response.

If you are one of the celiacs in that 30%-40% of unlucky folks, that means no corn, corn flour, corn oil, corn syrup, corn starch, nor anything containing those things or anything made from corn. In one small study, 6 out of 13 patients realized a poor response to corn gluten (the prolamin called zein); that is almost 1/2 of the patients in that study.

What About Oats?

Many people believe oats to be safe, but that isn't necessarily true for two reasons. One reason is that some celiacs, according to studies, do not tolerate oats. There is a protein (prolamin family) in oats called avenin which is similar to the proteins in wheat, barley, and rye. As a result, the protein in oats seems to cause the same reaction in a small majority of celiacs, about 1 in 165.

The other reason oats can be unsafe for celiacs is that most oats are either grown next to wheat, barley, or rye, and then processed in facilities that also process these grains. This is where cross-contamination becomes a real problem because even a little gluten from wheat, barley, or rye dust will make you sick.

What About Rice?

I have yet to find any research stating even a possibility of a gluten-like response to rice, yet, when I eat any rice product I get nauseated just like with corn, oats, quinoa, sorghum, buckwheat, wheat, barley, and rye.

Prolamins: The Common Denominator

I'm one of the lucky few who simply can't eat grains with prolamins. Prolamins are a group of plant storage proteins with a high proline content found in the seeds of cereal grains and pseudocereals: wheat (gliadin), barley (hordein), rye (secalin), oats (avenin), corn (zein), rice (orzenin), millet (panicin), sorghum (kafirin), quinoa (?). I'm still researching prolamins and why they seem to be the common denominator in the cereal grains and pseudocereals that make me sick.

I quit eating grains and similar substitutes. What happened? My symptoms disappeared. Do I miss cookies, biscuits, pancakes, and bread, even the gluten-free varieties? Oh yes, you bet I do.

Prolamin Content in Common Grains

Grain
Prolamin
Wheat
Gliadin
Secalinin
30-50%
Avenin
Barley
Hordein
46-52%
Millet
Panicin
Orzenin
Sorghum
Kafirin
Prolamins, a group of plant storage proteins, may trigger sensitivy in celiacs.
Common medication is often contaminated with gluten.
Common medication is often contaminated with gluten.|Source

Are Your Medications Gluten-Free?

You may be doing everything right in regards to your gluten-free diet, but you need to think more along the lines of a gluten-free lifestyle. This means checking your medications, both OTC and prescription.

Gluten-Free Medication List

If you have CD, your choice of pain relievers is limited. Most OTC and prescription medications are not gluten-free. That baby aspirin for added protection against a heart attack, your blood pressure, arthritis, diabetes medication, or your antibiotics for strep throat could all be a problem.

Be sure to look at a current list of medications with indications as to whether they are currently gluten-free. Both OTC and prescription manufacturers change their formulas from time-to-time, and your current medications may not be on the list. In the event that your prescription is not on the list or if it is generic, you'll need to call or Google the manufacturer. Find your drug and look for the binding agents and fillers used in them. If the drug is gluten-free, you'll see either corn starch or potato starch as a binder and/or filler.

This may seem obsessive to you, but my mother takes a number of prescriptions and she was becoming sick after she was prescribed a new one. This is how I found out that not all drugs are gluten-free, and they can ruin months of healing.

Recently, manufacturers have become more keen on producing gluten-free beer.
Recently, manufacturers have become more keen on producing gluten-free beer.|Source

What About Alcohol?

I am not an alcohol drinker due to another condition called pancreatitis, but for those of you who do not have a condition that prohibits the consumption of alcohol, you may want to know if alcohol is safe for celiacs.

Hard Liquor

According to Celiac.com, any distilled alcohol such as rum, gin, whiskey, and vodka is safe and fine for celiacs. The site owner of Celiac.com clearly states that corn, amaranth (a corn cousin), oats, and rice are fine for all celiacs when there is current scientific data that says otherwise, with 6 out of 13 celiacs (46%) eliciting an unwanted response to corn. Smaller percentages of celiacs receive an unfavorable response from oats and rice in other studies. My body says no corn, no oats, no rice, and no amaranth. Once I eliminated all major grains (and their cousins), I started getting well.

Beer

Beer is made from the malts of barley and wheat which, of course, means that beer is full of gluten and not safe for celiacs.

Wine

Wine is not gluten-free unless it has been stored in steel. If it has been stored in oak barrels, as most wine is, there is a great possibility that the barrel has been treated with a wheat flour paste to stop leakage. Unless you know that the wine has been stored and aged in steel barrels, it would be wise to pass it by.

Are your products gluten-free?
Are your products gluten-free?|Source

Are Your Household Products Gluten-Free?

It is so hard to get around the fact that anything you put into your mouth needs to be gluten-free if you have been diagnosed with CD.

When you purchase products to make recipes, for snacks, or simply brush your teeth, only purchase gluten-free products. Before you buy anything, check the label. If it isn't on the label, there may be a reason for that—it probably is NOT gluten-free. If you want to buy or use any product that is not labeled "gluten-free," make sure you either check out that company and product either online or by telephone. Don't be afraid to ask for a confirmation letter!

Consider Keeping a CeliacAid Kit

As a celiac, you have a lifelong commitment to a gluten-free diet if you wish to heal your intestinal tract and avoid symptoms and unpleasant complications. Adhering to a gluten-free diet can be much easier said than done because gluten is everywhere! Unfortunately, gluten is hidden and/or disguised by many names. Cross-contamination is also a real problem, as is the dubious cooking practices of family, friends, and restaurants.

It may be beneficial to try what could be termed as a celiac's CeliacAid Kit. It can be taken anytime you think you may have been glutenized.works in the stomach to neutralize gluten before it reaches your intestines. Give it a try to see if it may help you, however, please be advised this product is not meant to enable a celiac to eat everything in sight. It certainly won't hurt to keep some at home, at the office, in your car, in your purse, or some other handy place just in case.

UDI's Gluten-Free Sandwich Bread

One of the hardest things to find, at least for me, was a gluten-free bread. I didn't want to spend hours baking bread, and I have no idea how to make bagels, so I started searching for and trying some of the gluten-free bread available. YUCK!

Luckily, I finally foundbread and other goodies so that I could enjoy eating sandwiches, toast, french toast, bagels, muffins, and more. Try UDI's—you won't be disappointed—at least not compared to the other options you have! UDI's can be kept frozen because it doesn't come in one of those vacuum sealed bags like other bread that will last 6 months without refrigeration.

Lactose intolerance is a long-term side effect of undiagnosed celiacs.
Lactose intolerance is a long-term side effect of undiagnosed celiacs.|Source

Celiac-Related Lactose Intolerance

Lactose intolerance is the inability to digest the sugar lactose, which is found in milk and other dairy products such as cheese, cottage cheese, chocolate, and yogurt. Some dairy products such as yogurt, buttermilk, and cheese have less lactose than milk, but if you have suffered from CD for some time and have become lactose intolerant, you may not be able to eat anything containing lactose without discomfort.

Luckily, there are products on the market that have enzymes added that neutralize the lactose, thereby creating a lactose-free product. One such product is lactose-free milk. The milk really isn't lactose-free, but the lactose is neutralized with enzymes. Lactose-free milk can be produced by passing milk over the lactase enzyme which is bound to an inert carrier. Once the molecule is cleaved, there are no ill-effects from the lactose.

You can also use a supplement such as Lactaid to help you digest lactose so that you can enjoy dairy products again.

Celiac Disease Causes Vitamin and Mineral Deficiencies

Vitamin and mineral deficiencies are common among people suffering from CD. Vitamin and mineral supplementation is not only wise, but often required due to malabsorption. Malabsorption occurs when there is damage to the small intestine villi. Vitamins and minerals that are fat soluble are commonly not absorbed and are often deficient in the body.

This abnormality in the absorption of necessary nutrients may result in anemia (low red blood cell count) due to deficits in iron and folic acid. (Iron and folic acid are essential for the production of normal red blood cells or erythrocytes.) Vitamin B12 deficiencies can also contribute to anemia in affected persons.

Vitamin K is essential for the production of clotting proteins. As a result, vitamin K deficiency causes bleeding tendencies among persons with celiacs. Likewise, vitamin D is essential for the absorption of calcium, which is required for appropriate bone growth. As a result, vitamin D deficiency may cause low blood calcium levels (hypocalcemia). This predisposes children with celiacs to bone disorders such as rickets. Adults with celiacs have decreased calcium in the bones, a condition referred to as osteomalacia, and may develop fractures. Loss of protein and calcium may also lead to osteoporosis.

Disclaimer

This article is for informational purposes only and readers are advised to consult a licensed healthcare professional regarding the treatment of their individualized condition.

Have you been diagnosed with Celiac Disease?

Stories of Real People and Real Symptoms

Consider reading accounts of real celiac sufferers and how they live a healthy lifestyle.
Consider reading accounts of real celiac sufferers and how they live a healthy lifestyle.|Source

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