Celiac Disease Explained: Through Ages & Stages
Published April, 2021
Your age and stage of life can vastly affect your experiences before and after getting a celiac diagnosis. Age and life stage can play a role in how long it could take to get to a proper diagnosis. How old you are, or where you are in life, can also contribute to making it easier or harder to adjust to living gluten-free.
Before we talk about ages and stages, let’s clarify who develops celiac disease. Note that the symptoms of Non-Celiac Gluten Sensitivities (NCGS) could overlap those of celiac disease. To learn more about NCGS, check out What is non-celiac gluten sensitivity or NCGS?
Someone may be experiencing a variety of symptoms that could point to celiac disease. The only way to know if they have it or not is through testing. The following three factors are present in people who have celiac disease:
1) They have the gene variants. HLA DQA1*05 and DQB1*02 are the gene variants that show up through testing (Note: not everyone with these gene variants develops celiac disease).
2) They are consuming gluten. They may be getting gluten through foods, drinks, or medication.
3) They have experienced some type of gene triggering event. Examples of triggering events include surgery or pregnancy, infection, childhood antibiotic exposure, an imbalance of bacteria in the gut, or any combination of these or other factors.
A family history of celiac disease increases the risk of developing celiac disease, however, the above three factors need to be in place.
As you can see, multiple factors come into play when someone develops celiac disease. Simply having the gene variants will not determine whether a person develops celiac disease. Getting to a diagnosis can be challenging for many reasons, one being the over 200 different symptoms that have been associated with celiac disease. Some of these symptoms can show up depending on how long a person has gone undiagnosed and untreated, but can also relate to their age.
How do celiac disease symptoms vary by age?
Let’s look at celiac disease through the lens of these age groups: Infants, Children, Teens, Adults, and Older Adults/Seniors. While there are some celiac disease symptoms that are common across most or all ages, there are also symptom that are more likely to be found in particular age groups.
Symptoms of celiac disease that could be experienced at any age include
- abdominal bloating,
- liver, elevated enzymes: ALT and AST, and
- short stature or growth problems
When it comes to diagnosing celiac disease in infants, the symptoms are often first observed by parents or caretakers. According to “The approach to Celiac Disease in children,” a report published in the journal, International Journal of Pediatrics and Adolescent Medicine, in addition to the general symptoms listed above, infants could experience
- failure to thrive,
- sadness (yes, in infants), and
*Infantile anorexia nervosa is characterized by food refusal and leads to failure to thrive. between the ages of six months and three years.
Because they can’t yet speak, it is harder to know exactly what an infant is feeling, what the discomfort is like, or where it hurts. Generally, parents know that if their baby is fussy or, if the symptoms are obvious – like vomiting – their baby is sick.
Even when a child learns to speak, their limited vocabulary can make it difficult for parents, caretakers, and healthcare providers to get a clear picture of what a child may be experiencing in terms of symptoms. Some syndromes or behaviors that begin to show up in childhood – such as ADHD-type symptoms or mood changes – may not immediately be connected to an issue with gluten. Digestive issues such as gas or pale and foul-smelling stools might be dismissed as a less chronic condition. Once a proper diagnosis is made, getting a child onto a gluten-free diet can be easy in some ways and difficult in others.
Diagnosing teenagers with celiac disease could be easier because they are more verbal, however, some of the symptoms they experience could be attributed to other factors. For example, migraines could also be related to hormone fluctuations or even too much screen time.
While the symptoms young adults in their 20s may experience can be similar to adults in their 30s, 40s, and 50s, there are several factors that can delay getting diagnosed. As young people go out on their own and exert their independence, they may be less likely to go to the doctor when experiencing unpleasant or painful symptoms. Some may still be on their parent’s insurance but may wait until their health situations are dire before seeking help.
Undiagnosed celiac disease in adulthood and later years is often seen with other autoimmune diseases or symptoms that could be misdiagnosed as other conditions. This includes irritable bowel syndrome (IBS) or even inflammatory bowel disease (IBD) which is an umbrella term for conditions such as Crohn’s Disease and Colitis.
The table below lists a number of symptoms of celiac disease that are fairly common, but may be more or less likely to occur depending on age. This list is by no means comprehensive, and some symptoms could occur in other age groups as well.
|Bone issues (soft, low density)||X||X||X|
|Mood changes, irritability||X|
|Oral ulcers (canker sores)||X||X||X|
|Stool issues – Steatorrhea (fat in stool), pale and foul-smelling||X||X|
|Tooth discoloration, enamel damage||X||X||X|
Biological sex is another factor that could affect symptoms of celiac disease. Research shows that over 60% of people diagnosed with celiac disease are biologically female. Some celiac disease symptoms are specific to biological females who have not been diagnosed or treated include late onset of menstruation or missed periods, miscarriages, and infertility. Biological males with undiagnosed and untreated celiac disease can also experience infertility.
The myriad of symptoms that could precede a celiac disease diagnosis can be confusing because of how they vary from person to person and by age and biological sex. Once tested for and diagnosed with celiac disease, a person’s life stage can affect what happens next.
How does life stage affect one’s response to a celiac diagnosis?
Let’s take a look at life after a celiac diagnosis, viewing potential challenges through the lens of life stages: infancy, childhood, teen years, adulthood, and later years.
A major challenge of diagnosing an infant is that taken separately, individual symptoms of celiac disease could look like other conditions or could be overlooked until a baby is extremely ill. The good news is that infants – and children – may begin to recover and heal more quickly than adults from damage to their intestinal lining caused by gluten once they are no longer being fed gluten-containing foods.
Parents and caretakers play a major role in getting to the point of diagnosing and treating children with celiac disease. According to the Mayo Clinic, compliance studies have shown that preschool-age children have an easier time switching over to a gluten-free diet because they haven’t established food preferences yet. Parents or caretakers are preparing children’s meals so gluten-free options become a “normal” part of a child’s life.
Anyone who is a parent of a young child knows that, while they can prepare the right foods, children don’t always eat what they’re served and can be fickle or picky about what they will eat. Also, young children may not be able to advocate for themselves strongly enough when offered food containing gluten.
To address some of these challenges, parents need to inform — and in some cases educate — day cares, sitters, schools, and after school programs with information about gluten-free dietary restrictions. They can also empower their children with the words to make others aware of the things they can and cannot eat.
Teenage tastes and eating habits are pretty well set, or so a teenager might think, so modifying their diet could be challenging. Teens might indulge in gluten-containing packaged “junk” foods and can be stubborn about giving them up, sneaking around to consume them. Teens can be very opinionated about their likes and dislikes and may be unwilling to try something new, turning their noses up at gluten-free foods. Social pressure can also play a part in making it harder for a teen to adopt a gluten-free diet.
When teens and young adults leave high school, go to college, or move out on their own, they may not have the budget or discipline to stay consistent with a gluten-free diet. While some may be very careful about what they eat, young people are more likely to be in social settings where they may get lax about avoiding gluten and indulge in snack foods, baked goods, or beer. If they don’t inform their friends and people in their social circles that they are gluten-free, accidental gluten exposure could easily take place.
Adulthood – 30s, 40s, 50s
By adulthood, people are often set in their ways with their eating habits, and routines are hard to change. Getting a celiac disease diagnosis as an adult could mean dealing with a longer healing time – up to a year or even longer – which could also mean lingering discomfort or pain while the healing aspect of a gluten-free diet takes hold.
A celiac diagnosis at this stage could come as a relief but also feel like a burden, both emotionally, socially, and financially, while switching over to eating entirely gluten-free. As with any habit or diet change, it takes motivation, perseverance, and consistently making healthy choices. Any adult who has tried to make dietary changes knows how challenging this can be, even when one’s health is on the line.
Later Years — 60s, 70s, 80s
Depending on how long the disease has been present and left untreated, it could contribute to other conditions that are more common with aging: low bone density, GI issues, and the development of some cancers. A celiac disease diagnosis later in life may also come alongside diagnosis of other autoimmune conditions.
Changing eating habits and switching to a gluten-free diet in one’s later years could prove as challenging, if not more so, than at a younger stage of life. For older adults living in care facilities or with a caregiver, attention to providing a gluten-free diet may make the change easier if the facility or caregiver is well-informed and conscientious about omitting gluten entirely from meals and snacks. Additional care to avoid cross-contact is important at care facilities. Gluten-Free Food Services (GFFS) works to validate care facilities as Gluten-Free Safe Spots.
Getting to a celiac disease diagnosis can be challenging, partly because of the vast number of possible symptoms related to the disease and some similarities of symptoms to those of other diseases and conditions. A person’s age and life stage can present additional challenges to pinpointing what is wrong. If you suspect you might have celiac disease, find a healthcare provider who is willing to examine symptoms as a whole, consider family history, and, if needed, provide proper testing.
In compiling the above list of symptoms, we cross-checked several reputable, medical sources and their symptom lists against several studies that also included symptom lists. We looked at three general symptom lists and two that are specific to age groups (children and elderly).
Our lists above, and the lists included in the following sources, are by no means comprehensive. Expert sources such as the University of Chicago’s Celiac Disease Center estimate that there are over 200 different symptoms that have been shown to be associated with celiac disease.
Some symptoms that are not included in the above lists are only omitted because they were not mentioned in the five sources below. Many additional studies exist that back up the inclusion of additional symptoms, however, we’ve opted to go with a general overview.
[NIH/NIDDK] Symptoms & Causes of Celiac Disease
[Mayo Clinic] Celiac disease
[Cleveland Clinic] Celiac disease
Disclaimer: The information on this website is for educational purposes only. Consult your healthcare team when considering this information.
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