Help for Parents

The following are comments and suggestions from parents of children with Celiac Disease. Please contact us with your comments and suggestions.

School lunches

When Colin was diagnosed he was 12 years old and in 6th grade. It was just after the Christmas break and I called the school to inform his guidance counselor. I also wanted to see for myself what the cafeteria had to offer. I met with the head of the cafeteria and was given a tour to see what was available and to look at food labels. It was very discouraging. Bananas, apples, bags of potato chips and an occasional white rice were the only gluten free items available. The items that you would assume would be gluten free such as hotdogs, hamburgers and mashed potatoes were processed with fillers. The vegetables were all canned with preservatives. The cafeteria was willing to work work with me but it was impossible. To alleviate the added work and stress for Colin we both agreed it was a lot easier and safer to bring lunch. It just required planning. Every Sunday I bake two loaves of bread, one for the week and the other I keep in the freezer. I want Colin, now in eighth grade and Eamon, in kindergarten to never be in want of sandwich bread; and to have cookies, chips, yogurt and fruit always available.

(Lisa, New York)

The best thing you can do for your celiac child

When my seven year old daughter Macie was finally diagnosed with celiac disease at 16 months of age I couldn’t be happier! After watching her wasting away for 4 months with no aid in sight the diagnoses of celiac disease was great news. Being a first time parent, the doctors told my husband and me that we were nervous parents and that she would be fine, that she was vomiting for attention and that she was just an irritable child.
None of the above was true. Macie had celiac disease. She would not grow out of it , but she would, if on a strict gluten free diet grow up to be a healthy and thriving child! It was amazing news and being a true New Yorker, it wasn’t going to be too difficult to handle. I had a lot to learn about the diet, where to shop and what information to believe.
In fact it wasn’t so easy; I was confused about what contained gluten. I was afraid of making mistakes and having Macie get sick from gluten. As it turned out I was actually doing quite well and I became an advocate for my daughter and for Celiac disease.
Macie was so sick before she was diagnosed. When she started feeling better on the GF diet she realized that she didn’t need to feel sick all of the time. She was old enough to understand that she had the control to feel healthy. She was empowered. Children learn by example and are also so trusting. It is up to the parents and caregivers to help them feel good about themselves and make good food choices. The best thing a parent can do for a Celiac child is to educate and empower their Celiac child to be their own best advocate.
I’m proud of Macie and how she handles herself in regards to celiac disease. Her friends are as supportive of her as her family. Macie is not shy about celiac disease. She wears it as a badge of honor and she too is a celiac disease advocate.

(Elyn, New York)

Going to College 101

Preparing for freshman year at college is a large undertaking under “normal” circumstances, throw in the element of living away from home gluten-free for the very first time, and the scope and sequence becomes broader still.

Whenever visiting a campus, arrange to speak to a supervisor in the food services department. Inquire about the supports that are available to students who have medically restricted diets. This last point needs to be clear — this is not a matter of being “vegetarian” or “vegan” — terms that are often quickly tossed around upon initial conversations with cafeteria staff. What access is there, for example, to a dietician? Where are utensils stored to prevent cross contamination? How are diet-specific foods obtained, and who does the actual ordering? Our experience varied greatly from campus to campus, and from (food service) company to company. When Jennifer made her final decision, we made one more visit during the summer, before the actual moving in day. We came armed with a set of pots, a colander, and some gluten-free staples, just to get things started, and so that they knew we meant business! The company we dealt with worked well with Jennifer to ease the initial adjustment to life as a celiac in a college cafeteria. They “dedicated” a toaster for her, assigned a cabinet to store her nonperishable g-free items, prepared g-free pasta for her, and even arranged to go to the local health food store as needed to pick up reinforcements! Another time, without being asked, they provided a g-free lunch for her to bring to another campus that she was visiting for the day. These are significant gestures, and elements that contributed to a safe and healthy transition to gluten-free living on a college campus.

An important part of preparing for Jennifer’s first year away at college also included the development of a 504 Accommodation Plan. This was developed with her specific medical needs in mind. It included a letter from her physician that confirmed she had a medically documented condition which was chronic. The plan itself outlined those reasonable accommodations she would need to lead a normal university/college life. These accommodations involved the storage, access, and preparation of gluten-free foods and meals. The plan was shared with the university’s 504 Coordinator (they all have one, just give them a little time to figure out who it is), shared with the food service and housing department’s staff. (The latter were included so that she could keep a toaster oven in her room. This was “Huge” because of safety regulations. As it turned out she didn’t use it that often because she had access to her own in the cafeteria, but we didn’t know how that would play itself out at the start.) Our goal in all this was for our child to have equal access to campus life.
To those of you in the planning stages of the college selection process- good luck, it is such an exciting time, enjoy it, and relax, you will find a gluten-free friendly university.

(Donna, Westchester, NY)

The long road to diagnosis

Laura was a 10.5 lb newborn and was breast-fed exclusively for the first sixteen months of her life. When she was weaned, she had trouble with all types of cereals. She continued to grow normally, but started to develop constant diarrhea. Her pediatrician tested her for all the usual suspects, but since she was growing normally, he wasn’t unduly concerned. When we discussed her diarrhea at her two-year check up, her pediatrician mentioned that there was a condition called gluten intolerance enteropathy, but that it was quite rare and required a biopsy to diagnose. So we decided not to pursue that particular diagnosis any further.
Laura continued to have diarrhea and I noticed that she was always very pale. In the evenings, it would be difficult to get a diaper fastened around her due to her abdominal distension. One incident I remember clearly was around Christmas time in 1997. We had gone out to eat at a restaurant and Laura was sitting in a high chair and her diarrhea leaked out of her diaper. It was milky white and frothy — I had never seen anything like it in my life. It was almost as though the milk she had drunk had gone right through her nearly unchanged.

At that time, she had a huge appetite–she ate anything and everything in sight. I didn’t try to limit her diet at all because I figured she needed the nutrition–but I knew something wasn’t quite right. I tried removing dairy from her diet, with no effect. I tried removing wheat from her diet, also with no effect.

By January, she started losing weight. By the time she was diagnosed, she had slipped from the 99th percentile for weight to under the 30th percentile. In March, I opened up her diaper and discovered that she had had a rectal prolapse. So I took her to the urgent care clinic in the town we lived in. Her pediatrician was on duty and he called Stanford University and had us take her to the ER at Lucille Packard Children’s Hospital. By the time we went through the triage routine, the prolapse had self-retracted and there was nothing to be seen. I was surprised when the ER docs didn’t let us leave right away. They had various consultations and concluded that Laura should be tested for cystic fibrosis. We had to bring her back on the following Wednesday so that they could do a sweat test. We did the sweat test, and fortunately it was negative. We then had an exam scheduled with the pediatric GI clinic. The doctor there, took one look at Laura and said that she was a celiac baby. He pointed out her muscle wasting and profound anemia to the resident who was in the exam room with us. The doctor had us bring her back to the clinic the next day for an endoscopy.

The endoscopy confirmed that Laura had CD. Later on, her blood work came in with sky-high AGA IgG and IgA levels. Her fecal fat test results were off the charts–in fact the lab called the doctor in the evening after hours to report that they’d never seen results like hers. A week after she was diagnosed, she ended up hospitalized for a week with RSV pneumonia. She was in a very debilitated state by then. The doctor told us that we’d probably have a whole new child within a few days of starting the gluten free diet. Unfortunately, that was not the case. She continued to have diarrhea problems for almost a full year following her diagnosis, though it was no where near the extent it had been. It turned out that she had developed sensitivities to a whole host of other foods, which I gradually weeded out by using a food diary and carefully monitoring everything she ate. In the meantime, my husband and the older girls were also diagnosed with CD, so our whole household went gluten free. Laura would get sick if she handled toys or touched furniture that had been handled by other kids with gluteny fingers. While I could make sure Laura didn’t eat anything with gluten in it, she would touch objects and then get sick later on because she’d put her hands in her mouth. Toddlers sure can be a challenge. Laura is doing very well now. She is still rather sensitive to gluten, at least compared to other members of the family. It has been a long journey, but well worth the effort we put into keeping everyone healthy on a gluten free diet.

(Chris, New York)

 

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