Holly, a 19-year-old mathematics student at Lehigh University and a close personal friend of mine, was been diagnosed with Celiac Disease in elementary school. As someone who has lived with the disease for the majority of her lifetime, her perspective on the disease offers much to be learned.
For the first decade of her life, Holly ate just as any child would who did not suffer from Celiac disease. She could eat bread, cake, cookies, or other foods that typically have high amounts of gluten, just as her other classmates did.
The damage that these foods were inflicting on her intestines was unrecognized at this time, but it had obvious effects on her body.
In 3rd grade, Holly was categorized in the negative tenth percentile for weight and the negative fifth percentile for height for her age, which indicated that she was not receiving the nutrients that she ingested from her food. In photographs of her taken at this time, Holly says that she appeared noticeable pale with bags under her eyes and a taut face.
Since her delayed growth was the most obvious symptom and could have been attributed to other factors, it was not suspected that Holly was living with Celiac until her mother, Nanette, was diagnosed during this time.
Nanette had remained undiagnosed for the first four decades of her life. Like Holly, she had always been extremely underweight; as an adult, she remained under 100 pounds until her first pregnancy. Nanette had an endomorphic, shorter frame; she is about five feet, three inches tall, according to Holly, while the rest of her maternal female relatives are considerably taller.
Her growth was likely stunted because she had absorbed fewer nutrients due to intestinal damage.
The onset of puberty and Nanette’ growth was stunted; Nanette did not reach menarche until she was sixteen years old. As Nanette aged and her intestines suffered continual damage, she was unable to digest many common allergens, such as “milk products, tomatoes, most kinds of nuts,” and foods with high acidity, among other food products. While in her mid-forties, Nanette was finally diagnosed with Celiac, and adopted a gluten-free diet thereafter.
Since the disease is genetic, Nanette’ mother may also have had the disease, but this is unknown due to an early death and a lack of information about Celiac disease during the time her mother was alive. The genetic component required that Nanette’ two children be immediately tested for Celiac. The initial step for diagnosis consisted of a blood test, which turned up positive for Holly and negative for her sister. After this, Holly transitioned to a temporary gluten-free diet for several weeks.
However, the blood test alone is inconclusive, so Holly had to resume a potentially destructive diet with gluten components so that an intestinal biopsy could be performed. The doctors confirmed damage to villi from the tissue sample extracted and Holly was therefore diagnosed with Celiac. Her permanent gluten-free diet went into effect immediately thereafter, which she follows strictly to this day.
Luckily, Holly’s diagnosis came at an early age, which prevented her from having permanent growth or reproductive problems. When asked if she had any problems during the onset of puberty, Holly responded, “I probably would’ve if I had been diagnosed any later, because my mom didn’t get her period until she was sixteen, but then I got mine at thirteen. My doctors [figured that I wouldn’t] have to worry about it for a long time since my mom got hers so late, but literally within the next month, I started got my period and started menstruating.” Though puberty was likely delayed for Nanette because she was undernourished, it seems as though Holly was diagnosed early enough that she was able to receive nutrients with her new diet and gain the weight necessary to begin the process of reaching sexual maturity.
A gluten-free diet is the only treatment necessary to avoid complications from Celiac, but sometimes this lifestyle can be difficult to practice. In American culture, many social situations involve food in some way, which Holly says has created some awkward situations. She says there are certain restaurants that she avoids altogether because there is a high risk of contamination; “I’ve had friends ask me if I want to go to places like Panera and I say, ‘No, there’s flour in the air,’ she jokes. Holly also said that ordering food can be uncomfortable when she goes on dates, since she has to ask for a special order or ask a lot of questions, and then she feels the need to explain her disease.
Holly admits she is not as careful about ordering in restaurants as she should be, but it has only had negative consequences on several occasions. Cross-contamination can happen when crumbs or bits of gluten-containing food can spill into containers of gluten-free food, causing accidental ingestion that leads to intestinal damage. This is especially an issue with buffet- style eateries, where many customers are able to handle the food, or with condiments, whose containers are frequently intruded by utensils littered with bread crumbs.
Holly says she is not sure of the degree of severity which gluten affects her and that since it would take three or four days for her to develop an adverse reaction, it’s difficult to pinpoint the exact incident that causes complications. Her mom has told her that she should be wary of crumbs because even the smallest amounts can trigger a reaction, but Holly does not believe she has to follow her advice to this level of caution because she has not seen this proven true. Holly also said she did not know if the level of gluten intolerance was absolute in nature or if levels of gluten that could be passed varied on a case-by-case basis for people with Celiac. Since some individuals with the disease are asymptomatic but still experience intestinal damage from gluten, it is difficult to tell if her mother is correct.
Complications from cross-contamination are not foreign to Holly, whose most recent outbreak occurred last spring, due to negligence of Rathbone dining hall staff at Lehigh University. Taco shells that were labeled as “corn tortillas” were actually made from flour tortillas, so Holly unknowingly ingested the largest amount of gluten she has had in almost ten years. Within the past four years or so, Holly says she has also developed an allergy to wheat, “so now [her] stomach does not process it. [She] will naturally throw it all up, as a kind of defense mechanism before it gets to [her] intestines”.
If the amount of wheat product ingested is not enough for her stomach to automatically reject it and it does pass through her intestines, Holly says she will feel intense abdominal cramps, which she said felt similar to but stronger than menstrual cramps, and also may experience diarrhea as a result of the contamination. Since she has been on a gluten-free diet for such a long period of time, Holly says her symptoms from eating gluten are only intense for about a day before she feels better.
Movements to increase the ease of living with Celiac have been prevalent within recent years, according to Holly’s observations, because more people are being diagnosed than in the past and there is a growing medical understanding of the disease. Many restaurants currently offer a special gluten-free menu or gluten-free alternatives.
Holly said there had also been a new regulation introduced, where certain food companies were required to list gluten as a main allergen in a product. There was also some rumors of research being conducted for a pill that would allow those with Celiac disease to process gluten normally; Holly says she heard this was supposed to have been developed by 2010, though, so it seems that this is a more complicated feat than researchers had anticipated. Nevertheless, there is much being done to make eating at restaurants or daily meals more convenient for those with Celiac.
Support groups are common for many diseases, and Celiac is no exception. Holly says that she and Nanette first joined a group in Philadelphia, where others with the disease meet to discuss how they manager the disease. Holly thinks her mother learned a lot from these meetings, but she was motivated to attend because of the large variety of gluten-free food they would sell. The only downside to this group was that it was located an hour away from their home in Pennsylvania.
Nanette was inspired to create a similar group for local community members with Celiac, so in 2009, she founded a local Gluten Intolerance Group. Though the group meets about four times a year, it mainly acts as a resource for the newly diagnosed in their area. Holly says that doctors’ offices will refer those who are recently diagnosed to the group, as will people who hear about the group through word-of-mouth. Nanette also subscribed Holly and herself to a Listserv group that follows gluten-free trends within their county. Local support has steadily increased in the last three years, says Holly.
In addition to local support organizations, Holly also attended Camp Celiac in Rhode Island for five consecutive summers. It was just like a regular children’s summer camp, with the only difference being the entirely gluten-free menu. “I loved it,” Holly says about Camp Celiac. “At that time, it would have been really challenging to go to a regular camp. Now it’s easier because of the movement toward accommodating gluten-free diets. I can go to band camp now and it’s no problem…. But back then [at] camps, no one knew what to do”. Camp Celiac was unique in providing a healthy dietary plan for campers, so that they could focus on enjoying their stay rather than worry about their food options.
Holly pointed out that there was hardly any diversity at this summer camp, since it was designed for kids with Celiac; she said it consisted predominantly of Caucasian children and that there were about twice as many girls than boys. Two of the female friends Holly made at this camp both had twin brothers who did not have the disease, demonstrating that Celiac is more prone to women. She noted that many children she attended camp with were very small compared to other children their age, which fit with general symptoms that Holly shared.