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Home » 2. The Infant, Special Circumstances: Multiples, Adoption & Special Needs

Caroline’s Story: Living with 25+ Food Intolerances

Submitted by on Wednesday, December 17 2008One Comment

By Lindsay Killick

**Originally published in the Fall 2007 Special Needs issue of The Journal of API

Caroline

Caroline

When our daughter Caroline joined our family, after a few rough weeks, things seemed to fall right into place. We dealt with typical newborn breastfeeding difficulties such as thrush, oversupply, and latching troubles, and we even managed to survive new-parent sleep deprivation and an intercontinental move five weeks after her birth. We thought we were surely off and running.

Caroline was six weeks old when we began to notice some mucous in her diapers. I’d read a large amount of breastfeeding information during pregnancy and knew that there were many potential causes of mucous in the stools of breastfed babies. I thought the problem would probably clear up soon. It didn’t.

Refusal to Nurse

Shortly thereafter, Caroline began refusing to nurse – even when I knew she must be very hungry. Often she would want to go five-plus hours without nursing, at only seven weeks old.

I began having to “trick” her into latching on – first it was side-lying nursing, then nursing in a ring sling, then nursing in the dark, then nursing in the dark while being swaddled. Eventually we progressed to only nursing in a dark closet while being swaddled with white noise playing, and she still cried for quite awhile before she would agree to latch on. I hoped she was just a baby with an odd nursing pattern, but weight checks proved otherwise.

Unfortunately, sleep was no better. Trying to help Caroline nap became extremely difficult, especially since she was so disinclined to nurse. Our days were spent walking in circles around our living room while I carried her in a ring sling, singing to her and trying to help her sleep in between nursing sessions.

Our wonderful IBCLC pediatrician fielded many frantic phone calls from me in those early weeks. At first she suspected reflux, but Caroline’s refusal combined with the continuous mucousy diapers began to point towards a food allergy.

What is IBCLC?

IBCLC stands for International Board Certified Lactation Consultant and is a certification earned by health care providers who specialize in the clinical management of breastfeeding. LBCLC professionals, as well as La Leche League (LLL) leaders, are invaluable resources to nursing mothers. To find a local LBCLC professional, go to www.ilca.org; to find an LLL leader near you, visit www.llli.org.

The Total Elimination Diet

Initially, I removed dairy from my diet. Unfortunately, we did not notice a difference so I then removed soy. Nothing. Wheat? Still nothing. At that point, I moved on to a Total Elimination Diet, eating only rice, pears, squash, potatoes, and turkey. As it turned out, Caroline did have reflux along with her food allergies – and the pear exacerbated her reflux, so that had to go as well. For weeks, I ate only four foods and began to lose weight quickly. Caroline was no more willing to nurse, and her diapers still did not clear up.

Frustrated, I asked our pediatrician about an allergist referral. She suggested I see a gastrointestinal (GI) doctor instead. The GI doctor I saw was sympathetic but suggested I wean to prescription formula. He felt that Caroline’s issues were indeed an allergy, and that I had taken nursing much too far (living in a rocking chair in the closet on turkey and potatoes). He felt we needed to take the easy road out of our difficulties.

I asked if it was medically necessary to wean her, and he said not yet – but set a lofty weight goal for our next pediatrician well-baby visit. Even with the feeding aversions, somehow Caroline’s weight gain picked up, and we thankfully met the GI doctor’s required weight gain. We were hanging in – and our pediatrician remained extremely supportive and cheered me on, even on the worst days.

Allergy Tests Come Back Negative

Although we were still living on the elimination diet, the mucous, fussiness, and feeding aversions still had not gone away. Out of frustration, I made an appointment with an allergist. Poor Caroline suffered through both skin tests and blood tests – all to come up negative on all test results. I was crushed. The allergist, clearly not an expert in food allergies, said it must not be an allergy and told me that he had learned that some babies just did not like to nurse. Thankfully, I did not take that as an answer.

I later learned that it is extremely common for GI allergens – technically intolerances – to not show up on traditional allergy testing, as they are not IgE-mediated reactions. For some children, patch testing offers hope of diagnosing particular GI allergens, though we did not end up taking that route ourselves. Reactions always trump results, however, as food trials remain the most accurate way to diagnose and pinpoint allergens.

Food Allergy vs. Intolerance

The term “allergy” refers to an adverse reaction caused by exposure to a particular substance. Allergic reactions typically involve the respiratory tract, skin, or digestive system. Blood and skin tests can be used to reveal allergies, as they involve a type of antibody called reagin or IgE (Immunoglobulin E). The physical reactions to an allergy usually occur rapidly, within a few minutes of exposure to the substance. IgE-mediated reactions often cannot be outgrown.

Foods that do not involve IgE antibodies can still cause adverse physical symptoms. These reactions cannot be detected using an IgE test, and therefore are termed as “intolerances” or “sensitivities.” They are no less uncomfortable or dangerous than allergies; other immune mechanisms such as IgG antibodies or cell-mediated reactions, are involved instead of IgE antibodies. Reactions to intolerances can occur quickly or be delay for several hours to several days. This makes intolerances difficult to diagnose, but on the plus side, some intolerances can be outgrown.

Finding Support, Hope, and Answers

Fortunately, a good friend pointed me towards KidsWithFoodAllergies.org, an incredible resource for parents of allergic children. It was there that I found an enormous resource of recipes and knowledge regarding allergies of all sorts. My life had changed – I realized some of the food I was living on was cross-contaminated with potential allergens, and was able to make changes to my diet. Most importantly, I gained a huge outpouring of support and encouragement from many other mothers making dramatic dietary changes for the well-being of their children.

It was not until several months into the diet that I suspected Caroline’s gut was finally beginning to heal – patience is very important on an elimination diet. The mucous was slowly clearing! Thrilled, I felt a fresh burst of motivation to carry us through. Caroline began latching on with less fussing and her napping became easier. We had achieved a baseline!

I slowly began to trial foods to add diversity back into my diet with the help of a food allergen scale to aid me in the choice of less allergenic foods at the start. We began by trialing one food per week. Who knew cranberries could taste so good? Yum, millet cookies!

Surprisingly, we had more fails than successes, which was unexpected and frustrating. I kept a food exposure log to ensure no symptoms or failed trials would sneak past me – which would have been difficult considering the immediate return of mucous and sleepless nights. After failing many things (dairy, soy, gluten, garlic, pork, legumes, chocolate, amongst others – 25-plus in total!), we decided that we would cease with trials for the time being and live on the foods we had added in – most alternative grains, all fruit, some vegetables, chicken, and beef.

No Regrets

Caroline is now 15 months old and is now sharing my food on the “Caroline Lois” diet. She is a happy, healthy and outgoing little girl who loves to nurse. I’ve been asked many times if it was really worth it.

Without a doubt! The benefits of breastfeeding are so innumerable – and the comfort alone Caroline gets from nursing makes my diet worth it every single day. I have no plans to initiate weaning – hopefully she will continue to benefit from the nutritional and comfort value of my milk for quite some time to come. Had we not proceeded with the elimination diet, I have no doubt that we would still be struggling to track down all of Caroline’s reactions.

Feeding with Love and Respect…with Food Allergies

We plan to re-trial foods at some point in the future. Children do not outgrow allergies overnight, so we’re planning on waiting awhile longer yet. In order for children to outgrow allergies, they need to avoid being sensitized to the allergens – so we are extremely careful about potential exposure. Eating out remains difficult, as cross-contamination and hidden ingredients are both dangers. I very quickly learned not to trust homemade food prepared by people unfamiliar with food allergies, unless I saw it made myself. It is also important to read food labels every single time – often manufacturers change ingredients, and some products even use different ingredients in the same food in different parts of the country.

There are some foods we’ve been advised to not try at all, in my diet or her own, anytime in the next few years: fish, shellfish, tree nuts, and peanuts. These foods all have high rates of anaphylactic reactions, something which Caroline has an increased risk of due to her allergic history, even though her other food reactions are not traditional IgE allergies. Since it is allergic tendency that is inherited, rather than specific allergies, children with any sort of allergic condition in their family (including asthma, eczema, environmental allergies, food allergies, etc.) are advised to hold off on these foods until at least preschool age, due to the risk of anaphylaxis.

Many are surprised to hear that our own family history is not extremely allergy-rich. I myself have no known allergens, though my husband has eczema and hay fever. I would have never imagined that we would have a daughter food reactions – let alone 25-plus - but indeed we do!

A Doctor’s Change in Heart

Caroline recently had a follow-up appointment with the GI doctor who originally recommended that we wean. Once he saw the long list of foods Caroline reacts to, the doctor was extremely complimentary and told me it was a very good thing that I did not wean her after all. I like to think he learned something that may benefit the next patient down the road.

And as for Caroline’s future? Though it is possible her allergies may be lifelong and indicative of a larger GI issue, her doctor thinks it very likely she will outgrow many or most of her allergens by preschool. A bright bit of news for a little girl, indeed.

One Comment »

  • jaye says:

    Thank you for your story – This helps me feel less alone and someoneelse believes what i know but an allergy test does not shiw :)

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