In October 2010, Allergic Living sent out an e-mail asking readers to share their stories (both good and bad) of how close relatives dealt with food allergies or celiac disease. We were deluged with responses, several of which were included in our Winter 2011 cover article “Family Food Feud ”.
However, there were more intriguing stories than writer M. Carolyn Black could accommodate in an article that also delves into advice and family dynamics. We are pleased to present a selection of them here.
Feel free to add your own thoughts or experiences in the comments.
Issue: They Have to See It to Believe It
Elizabeth Kite, Chicago, Illinois
My son is 15 now and anaphylactic to milk, soy and peanut. When he was a toddler, he accidentally took a sip from his cousin’s sippy cup filled with milk and the reaction was quick and dramatic. While I would never wish for that to happen to any child, my husband’s family was right there to witness it and as a result, they have been wonderful to work with over the years.
My sister-in-law and father-in-law are just great about providing all labels, considering cross-contamination, even finding new foods at the store that we had not uncovered.
Cheri Zimmerman*, Ottawa, Ontario
My teenage son has an anaphylactic allergy to nuts and other foods. When he was first diagnosed at age 4 my mother did not get the seriousness of it and this led to reluctance to visit them at their home.
When my son was 6 years old they were visiting us at our cottage and she brought a chocolate cake – she said there were no nuts in it. Our son ate it and developed a reaction with breathing difficulty that required an emergency room visit in the middle of the night.
It turned out my mom had used chocolate that had hazelnuts in it – it was on the label in fine print. My mother was extremely upset and wholeheartedly apologized and since then, she’s been extremely cautious regarding his allergies.
Issue: Celiac Disease
Pamela Robitaille* – Ottawa, Ontario
My 10-year-old daughter has celiac disease and has been on a gluten-free diet for the past two years. It took awhile to get my husband on board all the food restrictions, but once he saw the improvement in our daughter’s health and how any gluten caused her to become sick he realized that it wasn’t just me being “paranoid”.
The insensitivity is with my mother. I explain in great detail the foods my daughter can and cannot eat, yet every time we go there my mother offers gluten-filled food to her. I am constantly saying, “She can’t have that, mum.”
I have explained to her the long term dangers of celiac. I have quoted articles from Allergic Living magazine. It’s as if this is not important to her – how can wheat possibly make someone sick?
We rarely visit with my parents anymore and the time my daughter spends with my mother is very limited. I can see that my daughter feels unaccepted or perhaps misunderstood by her own grandmother, who still asks me if she will “grow out of it”.
For anyone out there who is a family member of a person with allergies or celiac – please try to understand the disease. Not making an effort to understand the disease and accept the new diet limitations of your loved one might end up costing you a pretty significant part of your relationship.
Issue: Food Allergies as Inconvenience
Emily Little* – Stratford, Wisconsin
When our 6-year-old daughter turned 1 she was diagnosed with an allergy to milk protein. During this time my husband’s parents, who happen to be dairy farmers, somehow translated this dairy allergy to be the worst thing that ever happened to them. I seriously believe that my mother-in-law thought we were making the whole thing up.
We went out for dinner one night and left my in-laws to baby-sit. When we arrived to pick our daughter up we were told that they had given her “little bits” of ice cream and that she seemed to like it. I was livid. That night and next morning she was miserable with diarrhea, and rashes.
After she outgrew the dairy allergy she became allergic to nuts and when we demonstrated how to use the EpiPen my mother-in-law made the comment, “I am not going to do that to her, I will just call 911.” We tried to stress that we are 15 miles away from the nearest hospital, and she was going to have to administer the EpiPen if anything happened. She just shook her head and walked out of the room.
Melanie Anagnos, Haworth, New Jersey
One memorable holiday my children had Frosted Flakes as their Christmas meal because my mother-in-law had used nuts in the stuffing. Since she had roasted the turkey with the stuffing, my children were unable to eat almost everything that was served. In hindsight I am only sorry that I stayed there, preferring not to cause a scene.
I should have left and taken my children to a fun restaurant. Even though my nut-allergic son was only seven at the time, he understood that having Frosted Flakes for Christmas dinner was not a treat. My in-laws have become much more aware in recent years – my son is 14 years old now – but it is really a little late in the day.
Stephanie Lester*, Ottawa, ON
My family seems to have taken the approach to dealing with our child’s allergies in a ‘we’ll humour you and do as you say’ rather than to act out of sincerity. At first it was like getting a new toy – everyone was curious – then the attitude seemed to shift more, once the ‘inconvenience’ of our child’s allergy would affect them eating out as a group, travelling, being in their homes, etc.
I get a lot of eye rolling, I can even see them eye roll while on the phone, I swear!
*Name changed by request
Next Page: Reactions to the News
Issue: Impact of News Coverage
Stephanie Lester*, Ottawa, Ontario
What frustrates me is the general consensus – after my family reads stories in the news – that allergies will be cured soon so I really shouldn’t worry too much. Every time another allergy news article comes out the work I’ve done with my family is put back by a year or two.
If the article is about desensitization, the only thing my family will get from it is that if I feed my daughter her allergens she will be cured. I try and explain that there are multiple factors to such studies but their focus now is on the fact that I must not want her to be cured or I’d start to introduce her allergens.
My email will be flooded with links from family when new allergy articles come out about pills, patches, shots, about allergies not being as severe as thought.
I even got one about how her allergies may be due to my need for attention.
The material I have provided family is very direct and basic. I am always baffled that they can’t seem to find time to read or listen to me when I explain our daughter’s allergies yet they can take the time to read every obscure article online and take its content at face value.
Issues: Disbelief and Secret Testing
Cindy Knight*, Winnipeg, MB
My parents divorced when I was 5 years old and my father re-married when I was 11. My stepmother did not believe that my allergy to fish was real. She believed that I was avoiding fish because I didn’t like it.
After much debate over the years, she finally conceded that I would not be required to ingest fish but she would still cook it for the rest of the family.
One evening when I was about 13, she cooked fish for the family and prepared a hot dog for me in the same pan. After a short while I started to have trouble breathing.
Her response was that I should employ mind over matter and she proceeded to run me a bath. While I was sitting on the stairs waiting for the bath I stopped breathing and rolled down the stairs. My father gave me CPR and I was hospitalized. The doctors said I was very lucky to have survived.
Issue: Well-Meaning But…?
Anna Gallant, Toronto, Ontario
A few years after developing my peanut allergy I went to visit my father and his new wife and when we got to my dad’s house, his wife had made fudge. It looked delicious, and she told me she did not put peanuts in it like she usually does so that I could have some. I took a bite and was letting it melt on my tongue. It was delicious.
I told her it was so wonderful, it made my tongue tingle. With a big smile, she says, “That’s my secret ingredient – peanut butter”. I spit it out. Literally, it flew across the room. I ran to the sink to rinse my mouth, my husband ran to cupboard to get me a cup, my son ran for my purse, got me some Benadryl, and was holding my EpiPen.
My dad says to his wife “I told you she’s allergic to peanuts” and she says, “I know. I didn’t put any peanuts in it.”
He says “What do you think peanut butter is made from?” She says “I don’t know. I don’t make peanut butter, I buy it” and there I am, laughing so much I can’t swallow the Benadryl.
She cooks, bakes and cans all kinds of food – but not peanut butter. She’s a wonderful woman and we really do get along well. I will eat meat and veggies in her home but no candy or baked goods.
Elizabeth Sheppard Hewitt – St. John’s, Newfoundland
My son is allergic to egg, nut and peanut and we have had many challenges. My mother-in-law, who loves him dearly, just could not understand it. She’d say things like, okay, I’ll give him smooth peanut butter instead of crunchy.
She’d have him for a sleep over and call to say she planned to make pancakes – with egg – instead of giving him the cereal we provided. This continued for some time until I didn’t want her alone with him because I was certain she would unwittingly kill him.
So I called the dietitian at the hospital that my husband and I had spoken to when he was first diagnosed and explained the problem. I have to give her credit because she sat down with my in-laws and she scared them so badly that seven years later they still won’t give him anything until I read the box. I swear they are still shaking, too.
Julie Mototsune – Oakville, Ontario
Before family functions, I always call ahead to find out what is being served, and of course we always bring along a large contribution so our son can eat the same food as others.
This kind of support did not happen overnight. It was a lot of education and discussion to bring this to where it is today. I also keep a stash of “emergency” treats in the trunk of the car in case the other kids are having some of treat I didn’t anticipate. I’ll keep small cans of chips and gummy snacks, as well as few other safe packaged foods.
With Christmas coming, turkey is always served, and our son cannot eat store-bought bread due to his sesame allergy so we always drive over a loaf of homemade bread before the event so the stuffing can be made with safe bread. Of course, when we are hosting, we don’t have to worry about any of this, so we host whenever we can.
Robin Bayley – Victoria, BC
My husband won a golf tournament prize this year of a gift certificate for a seafood restaurant. Of course, I am very allergic. So, my husband took my mother out to dine while my father, who is also allergic, and I ate a yummy dinner that catered to both our (different) allergies at home.
Everyone had a lovely time. Not everyone has to do everything together all the time. I use approach this when we visit or travel in Europe with my husband’s family. I encourage them to have a leisurely noon restaurant meal.
I eat my packed lunch in a nearby park or square and use the remainder of the time doing things I want to do, like getting exercise, shopping or visiting an attraction no one else was interested in. I don’t have to sit there, worried about being sprayed with shellfish juice and they can pursue their interest in food.
*Name changed by request