Earlier this year I had a routine office visit with my rheumatologist where within the first couple of minutes of her saying hello, I just started crying. Now me being me, I apologized for crying as I cried but I just felt so bad physically and mentally, and was just so tired of feeling that way, I couldn’t stop. And believe me, I am not a “crier.”

For years I had been dealing with the aches and pains of rheumatoid arthritis, along with fatigue, the inability to retain the correct levels of vitamins and my stomach would periodically hurt, sometimes just an ache but sometimes it would be gut-wrenching pain. Besides the arthritis problems, I hadn’t really mentioned my other symptoms since I didn’t think they were related and it was just a general feeling of feeling bad where I thought mind over matter would work. But it seemed like for the past 6 months, things were getting worse. I had felt really run down with severe fatigue that could keep me in bed for days, which is so not like me. And then I’d feel bad about feeling so tired and getting behind on everyday things, I’d mentally beat myself up and feel guilty for being “lazy.” My bones ached, my joints ached and it just seemed like my arthritis was worse. I had such cold and numbness in my fingers I was wearing gloves in the house, my skin was itchy all the time to the extent I could scratch so much I’d make myself bleed and there were tiny little canker sores in my mouth that were uncomfortable. Plus, my stomach was beginning to hurt all the time. On top of that I started having digestive issues that made me not want to eat out in public. The worse my body felt, the worse I felt mentally. So I was a big old blubbery baby on that visit!

Thank goodness I had a doctor who recognized something was going on because that was so out of character for me, decided to do some further testing, and seriously gave my symptoms some serious thought. After several rounds of blood tests, a couple of visits to a gastroenterologist and finally an endoscopy and biopsies, I was diagnosed with celiac disease.

WHAT IS CELIAC DISEASE?

Celiac disease is an autoimmune disorder that affects less than 1% of the population of the United States, that can occur in genetically predisposed people where the ingestion of gluten (a protein found in grains like wheat, rye, and barley) leads to damage in the small intestine. When people with celiac disease eat gluten, their body mounts an immune response that attacks the small intestine, which leads to damage on the villi (villi are the small fingerlike projections that line the small intestine.) When the villi get damaged, nutrients can’t be absorbed properly into the body, which leads to further problems.

At first symptoms can be simply annoying when it comes to the stomach with stomach-aches, gas and diarrhea. But over time, the symptoms can be debilitating. Because the autoimmune assault corrodes the small intestine’s ability to absorb nutrients, you can develop anemia, chronic fatigue and weight loss, along with other autoimmune disorders and various diseases such as type 1 diabetes, ulcerative colitis, primary biliary cirrhosis, multiple sclerosis, autoimmune thyroid disease, pancreatic insufficiency, seizures, dementia, migraines, intestinal lymphomas and other GI cancers, just to name a few.

Celiac disease is hereditary, which means that it runs in families. People with a first-degree relative with celiac disease, like a parent, child or sibling, have a 1 in 10 risk of developing celiac disease.

IS THERE SUCH A THING AS BEING GLUTEN-SENSITIVE VERSUS HAVING CELIAC DISEASE?

Even though celiac disease is rare, there are tons and tons of people who have already adopted a gluten-free lifestyle. You can hear or read thousands and thousands of testimonies from people who have never been tested, but will tell you that since starting a gluten-free diet, they feel better than they ever have. There are hundreds of websites with doctors, nutritionists, and even scientists who don’t absolutely agree if there is such a thing as being gluten-sensitive though.

BUT there IS a diagnosis called NCGS, which stands for non-celiac gluten sensitivity, in which patients have limited symptoms of celiac without causing any damage to the small intestine. Is it the gluten though causing the symptoms? That’s still up for debate and there are literally hundreds of researches being done right now.

From an article I came across in Real Clear Science…

“According to the National Foundation for Celiac Awareness, as many as 18 million Americans may have non-celiac gluten sensitivity. Since the condition has only been recently described and is poorly understood, it’s currently diagnosed via a process of exclusion. If a patient’s test for celiac disease comes back negative, but symptoms improve on a gluten-free diet, then he or she is diagnosed with NCGS.”

Noticing the trend of so many people self-diagnosing themselves as gluten-sensitive, Jessica Biesiekierski, a gastroenterologist at Monash University and a leading researcher into the effects of gluten, recruited participants who believed they had NCGS to participate in a survey and clinical trial in Melbourne, Australia.

For the clinical trial, she tested an alternative explanation for gluten-sensitivity. Most gluten-containing products also have fermentable, poorly absorbed, short-chain carbohydrates, collectively known as FODMAPS, which are known to cause gastrointestinal problems.

The trial, which was double-blinded and placebo-controlled found that in patients whose diets were low in FODMAPS, gluten did not produce a negative effect.”

And just FYI, common sources of FODMAPS are bread products, chocolate, energy bars that include artificial sweeteners, mushrooms, beans, apples, and anything with high fructose syrup. So it’s possible it’s not the gluten that’s making you sensitive (again, unless you test positive for celiac.)

SHOULD YOU GO GLUTEN-FREE? WILL IT HELP YOU LOSE WEIGHT?

I know several people who have never been tested for celiac or gluten-sensitivity but choose to eat gluten-free because it makes them feel better. So whatever you choose to do is of course up to you and you know your body and what makes it feel good. If you think eating gluten-free is automatically going to make you lose weight or make you healthier (if you don’t have celiac,) you might be surprised.

First of all, celiac disease usually causes you to lose weight because you’re not absorbing nutrients and you’re actually malnourished. My initial symptoms back in 2001 – 2004 were weight loss, vomiting for no reason, and a lot of anxiety. It was in fact the first time I ever went on medication for anxiety but because during that time period I had lost my mom to Lou Gehrig’s Disease (ALS) and then my late husband to cancer, the symptoms did seem to be more stress-related and that’s what the doctors treated me for. But after years, ok, probably my entire life, of being on a diet, I suddenly couldn’t keep the weight on. It was all I could do to maintain 100 pounds and that was with me eating TONS of food. Oh, the ice cream and junk food I gorged on (and enjoyed) without worrying about gaining weight! Eventually my weight stabilized but I could still pretty much consume 3,000 calories or more a day and not gain weight. And believe me, it wasn’t because I was exercising! I will say that after my first week of eating gluten-free I lost 5 pounds but I think a lot of that was bloat and now after 3 weeks gluten-free, my weight has again stabilized and I am at a good weight for me.

And even though you eat gluten-free, that doesn’t mean everything you put in your mouth is healthy. If you only eat fruits, vegetables and lean meats, you’re going to most likely feel better just because you’re eating healthier. Take a walk through a grocery store though and you’ll find lots of packaged foods that say “gluten-free” that contain just as many calories, additives, carbs, and sugar as foods that contain gluten. In fact, a gluten-free diet can be deficient in fiber and a lot of other vitamins and minerals so you want to make sure you’re getting those in some other way.

Bottom line, if you think you’re sensitive to gluten, get tested for celiac disease. It’s a serious condition that can lead to serious health problems like multiple sclerosis, infertility or miscarriage, and even intestinal cancers. It does involve some time getting to the root of things but blood work is the first step and painless. For every person diagnosed with celiac, there are at least 7 more who go undiagnosed. An added benefit to getting diagnosed is that it may help a family member better able to know if they are at risk.

CELIAC SYMPTOMS IN CHILDREN –

Celiac disease can develop at any age once you’re old enough to start eating foods or take medicines that contain gluten. For people with celiac disease, the later the age of diagnosis, the greater the chance is of developing another autoimmune disorder. Infants and children with celiac tend to have more digestive symptoms including…

– abdominal bloating and pain

– chronic diarrhea

– vomiting

– constipation

– pale, foul-smelling, or fatty stools

– weight loss

– fatigue

– irritability and behavioral issues

– dental enamel defects of the permanent teeth

– delayed growth and puberty

– short stature

– failure to thrive

– Attention Deficit Hyperactivity Disorder (ADHD)

ADULT SYMPTOMS OF CELIAC DISEASE –

Of course adults can experience digestive symptoms too but are more likely to have other symptoms you wouldn’t even think were celiac related. These can include…

– unexplained iron-deficiency anemia

– fatigue

– bone or joint pain

– arthritis

– bone loss or osteoporosis

– depression or anxiety

– tingling numbness in the hands and feet

– seizures or migraines

– missed menstrual periods

– infertility or recurrent miscarriage

– canker sores inside the mouth

– an itchy skin rash called dermatitis herpetiformis

HEY, BEING GLUTEN-FREE IS EASY (Said no one with celiac disease.) –

When I first started going through the testing process I had a lot of people tell me it would be easy to go gluten-free. You know, just avoid gluten. Well I can honestly say it isn’t as easy as it sounds even though it’s not hard once you figure out what has gluten and what doesn’t. But that’s the hard part…knowing what you can and can’t eat and then there’s this little thing called cross-contamination, which is just as hard on you as eating gluten. For example; if my husband dips a knife in the mayo jar that is gluten-free but uses that knife on bread containing gluten and then dips the knife back in the jar, the mayo is now contaminated and I can’t eat it. I did get sick from eating a slice of gluten-free bread that I toasted in the toaster we used for regular bread due to cross-contamination. Those are things you don’t think about at first.

There’s a lot of packaged products now that say gluten-free on the label or in the list of ingredients and if it says gluten-free, it is (hopefully!) But there are a lot of products, especially store-brands, that are gluten-free but just don’t say it. And then there are products that don’t contain gluten but aren’t safe for people with celiac because of how it was processed or handled due to cross contamination. And yes, if I did just eat fresh produce and lean meats, I’d be safe but c’mon, that’s healthier than I want to be!

HOW’S IT GOING?

I can 100% say that after the first week of being totally gluten-free, I felt really good. After the second week, I felt like a miracle had been performed I felt so good.  I had my doubts but it was worth every penny spent and the time it took to be diagnosed to feel this fabulous. To feel better than I have in 10 years…seriously! Not only does my stomach feel “normal” again, I have more energy, haven’t taken a nap in weeks (whereas I was taking them daily,) I can wear heels again without my knees swelling up in 10 minutes and my joints have never felt better or been less swollen. In fact, after the second week of being gluten-free, we had over 7,000 pounds of mulch delivered at the base of our very steep driveway that my husband and I were going to spread throughout our yard. On the first day he hurt his back midway in (he swears it wasn’t on purpose though). Well someone had to wheel barrow it up the driveway and get it distributed and that someone was me. After three consecutive days, working 9 to 10 hours each day, I had it done with no knee, wrist, or elbow pain…and not a single pain-reducing pill!

My vitamin D levels have also stabilized, my skin feels better and all the canker sores in my mouth are gone too. I just feel so much healthier which also makes me feel happier.

You know, it’s up to you if you eat gluten or not. If you want to eat gluten-free because it makes you feel better, then by all means do so. But if you even remotely think you have celiac disease versus gluten-sensitivity, make sure you talk to your doctor about it, because left untreated, it can cause even more damage. And just FYI…if you are currently eating gluten-free and want to be tested for celiac, your test results will not be accurate. You actually have to have gluten in your system to be diagnosed but of course your doctor will explain all that.

Currently the only treatment for celiac disease is lifelong adherence to a strict gluten-free diet. Ingesting small amounts of gluten, like crumbs from a cutting board or the toaster, can trigger small intestine damage and quite frankly, make you really sick.

End result…I feel so good that my husband is threatening to “trade me in” for an OLDER model so he can keep up!

For more information on celiac disease, two websites I found particularly informative are…

http://www.celiac.com/

http://celiac.org/