Notice that you get headaches more often than usual? Feel tired even though you sleep well? More joint pain than usual? It’s easy to dismiss these minor physical and emotional changes as stress or age-related part and parcel, but these can be real symptoms of celiac disease and gluten neuropathy.
These symptoms are not expected when you think about an autoimmune disease that affects gut health. But these symptoms are more common in adult celiac disease sufferers than bloating, cramping, bowel changes and vomiting.
The reality is that celiac disease is often quiet, and the statistics are alarming.
More than 3 million people in the United States live with celiac disease. And according to the University of Chicago’s Celiac Disease Center, up to 97 percent of celiac disease sufferers have not been formally diagnosed. Additionally, up to 83 percent of people with celiac disease are misdiagnosed.
This means that hundreds of thousands of Americans are walking around with celiac disease. This also suggests that thousands of Americans are at risk of developing peripheral neuropathy because celiac disease can be a precursor.
The statistics are frightening. Imagine one chronic condition—one very treatable chronic condition—leading to another simply because of a missed diagnosis or no diagnosis at all.
What is Celiac Disease?
Celiac disease is an autoimmune disorder associated with severe gluten sensitivity. For celiac disease sufferers, ingesting gluten triggers the immune system to attack the small intestines. Over time, intestines become damaged, and this makes it difficult for the body to absorb nutrients.
When this happens, celiac disease sufferers become anemic and may develop early-onset osteoporosis, neurological conditions, other autoimmune diseases, and even cancer.
Today, science is learning that celiac disease, left untreated, can also lead to peripheral neuropathy.
What Is Peripheral Neuropathy?
Peripheral neuropathy means damage to the peripheral nerves. This damage can be caused by trauma, diabetes, kidney disease, toxins or other specific conditions. In other words, conditions that lead to inflammation are often interlinked and can be triggers for neuropathy. In peripheral neuropathy following celiac disease, the term gluten neuropathy is used.
When peripheral nerves are damaged, communication between body systems short circuit. Imagine trying to run a complex system like the human body on frayed cords. Picture the sparking and misfiring. Now imagine this taking place in your body. The result is symptoms such as pain, numbness, and tingling in your arms, legs, hands, and feet. But it can also affect other body systems like your heart, digestive health, and kidneys.
The Symptoms of Celiac Disease and Why It Is Often Misdiagnosed
The symptoms of celiac disease can be quiet. Not everyone experiences pain or noticeable gastrointestinal changes. In fact, the severe gastrointestinal symptoms associated with celiac disease are more common in children.
For adults, the symptoms of celiac disease, according to the National Institute of Diabetes and Digestive and Kidney Diseases may include:
- canker sores or mouth dryness
- depression or anxiety
- dermatitis herpetiformis
- feeling tired or worn down
- issues with fertility or recurrent miscarriages
- menstrual cycle changes
- neurological manifestations
- seizures (occasionally)
- smooth or shiny red tongue
- tingling or numbness in the extremities
- weak and painful joints and brittle bones
These symptoms are probably not what you expected. And when you present in your doctor’s office with recurring headaches or anemia, your physician may suggest vitamins, dietary changes and prescribe a pain medication for your headaches. Those dietary change, however, are not likely to keep you away from gluten.
If you do experience gut-related celiac symptoms, these may include:
- pale fatty stools that float
- stomach pain
Unfortunately, these symptoms may manifest after you have developed secondary conditions such as neuropathy.
The Celiac Disease and Neuropathy Link
Gluten ingestion, as mentioned, causes an autoimmune response in the small intestines of celiac sufferers. Gluten neuropathy, however, means that gluten ingestion by those with celiac disease damages nerves in the peripheral nervous system, too. When this happens, messaging between the brain, spine and body are compromised or skewed.
According to a study completed in January, neuropathy in those who have celiac disease may be as high as 23 percent. This does not include the estimated 83 percent who have not been diagnosed or who were misdiagnosed.
Further, the study found that gluten neuropathy may be responsible for one-quarter of all neurological manifestations found in those with celiac disease.
These neurological manifestations of gluten neuropathy may include:
- brain fog
- join pain, burning, tingling and numbness associated with neuropathy
However, some vitamins like folic acid and B12, which become depleted in people with celiac disease, can mimic true neuropathy.
The good news is that you may be able to improve your neuropathy symptoms by adopting a gluten-free diet. But how do you know that you have gluten neuropathy (or even celiac disease) when a celiac disease diagnosis is so elusive?
Body Awareness and Disease
If you’re like most of us, you know your body and may even recognize subtle changes. When it comes to celiac disease, being your own health advocate is crucial, especially when you consider how many are misdiagnosed or do not exhibit the expected symptoms associated with a gut issue.
- Do you have a red, shiny tongue for example?
- Have you felt weak or tired as of late with no changes in eating or sleeping habits?
- Have you noticed an increase in joint aches?
- Are you feeling depressed or anxious?
- Are you experiencing frequent headaches?
- If you are a female, have you noticed changes in your menstrual cycle?
You may have celiac disease and exhibit only one of the symptoms, but when everything else has been ruled out, you may want to consult your doctor and mention celiac disease as a concern.
People with celiac disease have higher levels of certain antibodies in their blood, and a simple blood test can determine your diagnosis, too. There is also a blood test to determine gluten sensitivity. Your doctor may opt to perform a biopsy or scope procedure, which looks for any small intestine damage.
Alternatively, you can try eliminating gluten from your diet for at least two weeks to see if symptoms decrease during this elimination. After several weeks without gluten, do you feel more like yourself? Are you less bloated? Do you have more energy?
Gluten sensitivity is not the same as celiac disease. While gluten sensitivity may cause tiredness, foggy head, stomach issues and similar symptoms, it does not directly damage the small intestines. Rather a weak intestinal lining allows gluten proteins into the bloodstream sparking a cascade of inflammatory symptoms. If you eliminate gluten for a while and do notice improvement, this does not mean you have celiac disease. You may be suffering from gluten sensitivity instead.
Gluten-Free Eating and Cracking Food Labels
Gluten is found in grains and starches, but you can also find gluten in processed foods.
Grains and starches that include gluten:
- graham flour
- kamut Matzo
- wheat germ
Gluten can also hide in popular processed foods and beverages like:
- bakery items
- breading (used to coat chicken or other fried foods)
- broth or flavored cubes for soup
- canned baked beans
- chocolate milk
- deli meats
- egg substitutes
- energy bars
- flavored coffee or tea
- french fries (store-bought, fast food)
- fruit filling
- hot dogs
- ice cream
- imitation meat
- non-dairy creamer
- processed cheese
- roasted nuts
- root beer
- sauces and marinades (salad dressing, syrup, soy sauce)
- wine coolers
Also, food labeling can be tricky and difficult to navigate. In other words, gluten may be hiding in your food, but you do not see it because gluten has many names.
Sometimes, the following label ingredients are another way of saying gluten:
- avena sativa
- brown rice syrup
- caramel color
- fermented grain extract
- hydrolyzed malt, vegetable or soy
- natural flavors
- modified food starch
- phytosphingosine extract
- amino peptide
- cereal (rye)
There are a lot of alternative grains and whole grains that are healthier and do not contain gluten. These include:
- some oats—Cheerios, for example, are gluten-free
Further, gluten is sometimes present in makeup, lotions, and medications. If you are taking a medication, ask your pharmacist if the medicine contains gluten.
You Are Your Best Health Advocate
Pay attention to your body, keep a journal and record any changes. Especially, write down how you feel following several weeks without gluten.
It is true that celiac disease is commonly misdiagnosed or not diagnosed at all. And gluten neuropathy is not the first thing your doctor considers when the tingling and burning shows up.
This means that you have to be proactive, recognize your own symptoms for what they are and advocate for yourself accordingly.
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