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Living with Celiac Disease

Posted on May 15, 2018 at 8:45 AM

Photo only by Ales Krivec on Unsplash

May is Celiac Awareness Month. I thought this post might benefit someone like you or someone you know.

Several years ago, I wondered why my belly blew up like a balloon after each meal. I looked like I was four months pregnant. At the same time, I had purply-blue nail beds, couldn’t find my names and nouns when I needed them, felt like a drunk when I don’t drink, and had abdominal pain on a regular basis. In a phone discussion with my older daughter, she said, “Mom it sounds like you might have celiac because you have some of the same symptoms I have. Check out celiac disease and try eating gluten-free.” I was skeptical at first, but decided to give it a try. What could it hurt? After eating as close to gluten-free as I understood for a month, I felt so much better! I didn’t trip over my left foot anymore, my names and nouns mysteriously reappeared, and my belly felt so much better. Some of my pain and fatigue faded, too. I felt like a new person. When I saw my doctor and told her of the discovery, she was quite impressed. Although she couldn’t do the blood test and biopsy of the small intestine on me because I had been eating gluten-free for a while, she diagnosed me anyway based on symptoms and family history. I'm not willing to make myself sick by eating gluten for a month to do the blood tests.

What is Celiac and How Does  It Affect People with It?

Celiac disease affects 1 in 100 people across the globe (Celiac Foundation). Celiac disease is an autoimmune disease, not an allergy because it does not put out histamines. Instead, the affected person’s immune system attacks the small intestine when they eat anything containing wheat, barley, and rye. This is a lifelong condition that requires eliminating all gluten from one’s diet. Serious health problems can result if the person does not remove gluten from his or her diet (Mayo Clinic). According to the Celiac Foundation, long-term health conditions include:

• Iron deficiency anemia

• Early onset osteoporosis or osteopenia

• Infertility and miscarriage

• Lactose intolerance

• Vitamin and mineral deficiencies

• Central and peripheral nervous system disorders

• Pancreatic insufficiency

• Intestinal lymphomas and other GI cancers (malignancies)

• Gall bladder malfunction

• Neurological manifestations, including ataxia, epileptic seizures, dementia, migraine, neuropathy, myopathy and multifocal leucoencephalopathy (Celiac.orgThis are a direct quote from the Celiac Foundation. Read more at

Some people with symptoms don’t have a diagnosis because not all doctors consider this disease when patients begin looking for help. It can sometimes take years to find out what is really going on. “However, more than half of adults with celiac disease have signs and symptoms that are not related to the digestive system, including:

• Anemia, usually resulting from iron deficiency

• Loss of bone density (osteoporosis) or softening of bone (osteomalacia)

• Itchy, blistery skin rash (dermatitis herpetiformis)

• Damage to dental enamel

• Mouth ulcers

• Headaches and fatigue

• Nervous system injury, including numbness and tingling in the feet and hands, possible problems with balance, and cognitive impairment

• Joint pain

• Reduced functioning of the spleen (hyposplenism)

• Acid reflux and heartburn (Mayo Clinic)

This is a direct quote from the Mayo Clinic. Read more at

A very small group of people have no symptoms, yet test positive for celiac. If there are members of the family diagnosed with celiac disease, then it is wise to be tested. Even though someone may not have symptoms with a positive test, they must also eliminate gluten from their diets to avoid related health problems. (Celiac Foundation)


What is the Gluten-free Diet?

Eating gluten-free sounds easier than it really is. Not only do you have to eliminate or change grain products like breads, cereals, and pastas, but it lurks in seasoning blends and spices as an anti-caking agent (not on label), malt as a flavoring agent, MSG as a preservative, and much more. All pans used for cooking food must be changed, too. It is also important to change personal care products because it gets on your hands, can get in your mouth and eyes, and affect the skin through dermatitis herpetiformis. I had to stop using Bath and Body Works products because the vitamin E (tocopherol acetate) in their products was on my hands and effectively caused mouth sores when I picked up something to eat like nuts or a sandwhich on gluten-free bread. Even my husband eats gluten-free with me because if he kisses me, it causes mouth sores and swelling. My grandchildren have to wash their hands before they hug me because they can get gluten on me giving me a skin rash or get it on my hands. My car gets a wipe down after passengers who have eaten fast food leave because it gets on door handles, the seat, and more. I also have to check any prescription and over-the-counter medications (Celiac Foundation). If in doubt, ask the pharmacist for help. Managing celiac disease through diet is a team effort.

Eating gluten-free is expensive, if you try to replace all of your favorite foods. You can eat gluten-free cheaper by avoiding anything containing gluten. (Eating Well) All fresh vegetables and fruits are gluten-free. Minimally processed meats are usually gluten-free, except those enhanced by broth unless otherwise labeled Gluten-free. Starches like potatoes, sweet potatoes, corn, peas, and other vegetables with carbohydrates can fill that void. I do eat some bread that is gluten-free and allergen friendly because I have hypoglycemia, but I purposely choose ones higher in fiber and lower in calories. I eat Chex cereal, but Cheerios sparingly due to the similar protein found in oats. It is a rarity for me to eat baked goods that are gluten-free. I use the “Is It Gluten-Free?” app on my smartphone. If it a food isn’t labeled gluten-free or doesn’t appear on my app, it doesn’t go in my grocery cart. (Healthline)

Can you lose weight on the GF diet?

I initially lost 10 pounds in one month after beginning to eat gluten-free. Part of the reason is that I was no longer eating something “bready” to try to quell the pain in my stomach. However, the grains used in gluten-free products usually are not as filled with fiber. A lot of people who go gluten-free lose weight because they are more conscious about what they put in their mouths. Often, people gain weight when they try to replace all of their favorite foods with gluten-free versions. If you want to lose weight, avoid foods made with alternative grains first. Then carefully add in a lower calorie bread with fiber or cereal with whole grain. Keep your grain products limited and avoid processed foods altogether. This is a great opportunity to live a healthy lifestyle by adopting a healthy eating plan when going gluten-free.

What about eating out and travel?

Eating out is tricky at times. There are gluten-free menus at many restaurants. Fast food establishments are very sketchy due to the “fast” prep. Not all places have enough for a meal. Those who offer to wrap your burger in a lettuce leaf have to use the same grill to cook your burger. If you don’t see the grill person clean the grill BEFORE they cook your burger, leave. You will get sick if you have celiac. Salads are pretty safe, but make sure they know your needs so they prep it on a safe surface. You can ask for no croutons on your salad (Everyday Health). Check it carefully because when the restaurant is busy, they sometimes forget. I recommend using apps like AllergyEats, Find Me Gluten Free , and there are several others. Read the reviews on the app for the restaurant under consideration. Ask questions when you order. They must follow GIG training practices, i.e. cleaned grill, wash hands and replace gloves, separate or specially cleaned prep space, dedicated cooking utensils or use of foil, etc (Everyday Health). When I go to Chipotle, I ask them to change their gloves. They also wash their hands when they change their gloves and some change out the utensils. They are always good about doing this for people with celiac and food allergies. Don’t take chances with your health.

When flying the friendly skies, don’t depend on a Google search! We did that once in Hawaii while we waited for our flight home. I went to the recommended restaurant in the food court at Maui’s airport. The woman at the counter tried to help me, but I think the rice vinegar wasn’t made from rice. Minutes before boarding the plane, my bloated so badly my rings cut into my fingers. My clothes suddenly felt two sizes too small. I had to take my shoes off on the plane because my feet were pinched in them as they throbbed badly. It felt like my brain was swollen inside my skull, I was very dizzy and confused. Never again!!! If in doubt, don’t eat it has become my motto. Pack your own snacks in your carry on and stash a few in your checked luggage. Avoid the food court.

How has eating gluten-free affected me?

I have to say that eating gluten-free, allergy-friendly -- I have several food allergies and sensitivities-- has prevented me from splurging on my favorite treats. I have a gluten free cake mix and brownie mix that have been in my pantry for over a year now. I don’t see the value of using a whole mix for a treat just for myself. Since I have health conditions that cause fatigue and pain, I have only gained ten pounds when others with the same conditions gain 20+ pounds. Fibromyalgia and mixed connective tissue disease are much more manageable because I am not eating foods that cause bloating and inflammation which flare up disease processes. I really don’t feel deprived at all. Sometimes I wish I could have just one slice of lemon meringue pie, but I quickly dismiss the idea. I don’t want to be sick nor is it worth making a lemon meringue tart for myself.

What Now?

This month, if you are having any of the symptoms listed above, talk with your doctor about being tested BEFORE trying to go gluten-free. Gluten must be present in your system for the anti-bodies to be found in test results. You can also have testing done to find out if you have a genetic pre-disposition to celiac. You can avoid a whole host of health problems while improving how you feel. This is also good stewardship of the body God gave you.

Share your story in the comments below. God bless!

Celiac Foundation


Mayo Clinic

Everyday Health

Eating Well 


Categories: nutrition, health, special health conditions

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