I had a rough transition into motherhood. Actually, I had a really rough transition into motherhood. You see, my first born is allergic to milk and I was determined to breastfeed. But I didn’t know she was allergic to milk. At the end of her first month of her life I was on IV antibiotics for severe mastitis and she was not gaining weight. Most of this was my fault {learning to ask for help was not my strong suit}; I let things get really bad before seeking help. It took us getting to this severe point that we learned that my daughter was allergic to milk and soy formula saved both her life and mine. Another contributor, Heather, also blogged about her scary introduction to her daughters food allergies here.
Since that time, I’ve had 3 additional children and spent a lot of time uncovering food allergies among them. Between my 4 kids, they carry allergies {or sensitivity} to milk, gluten, peanuts, and apples. The journey to discovering their food allergies has been both simple and complex. For some of them, we have the most common symptom – hives. My oldest will break out in hives on her face and neck when she is exposed to large amounts of milk. My youngest will break out in hives on his abdomen if he eats anything with apples {and yes, this is a very strange allergy}.
The harder allergies for us to identify have definitely been gluten and peanuts. For peanuts, we did an elimination diet. My oldest was being sent home several days a week from school with severe stomach pains after lunch. We began slowly eliminating things she regularly ate in her lunch and tracked her reaction on that day. After a month without a peanut butter and jelly sandwich, we gave her one and sure enough, the stomach pains made their reappearance. A month after that we gave her a reces peanut butter cup and again, she had stomach pains. Since we’ve removed peanuts from her diet, she’s gone almost 9 months now without that stomach pain.
The hardest part about an elimination diet is that it can take several weeks to months for your body to remove an allergen causing substance and show a reaction when that substance is reintroduced. So for most eliminations – you need to eliminate it for a whole month, not one day, before adding it back in to see if there’s a reaction. For us, the elimination diet worked great to figure out what exactly was causing her stomach pains but it did take a long time to figure out what exactly was the cause.
Gluten has been the hardest allergy to identify mainly because scientists are just now beginning to uncover it. My third child was 18 months when she was hospitalized with compacted bowels and failure to thrive. We knew something in her diet had been causing her a lot of problems, but we didn’t know what. Since we introduced foods through the typical introduction process, fruits, veggies, cereal, with a bit of baby led weaning thrown in, it was hard for us to identify the problem. A pediatric friend of my saw one of my facebook updates and messaged me with some questions. Based upon my answers he suggested we have her evaluated for Celiacs Disease and sure enough, we found our answer – she was allergic (intolerant) to gluten.
Through all our journeys with uncovering the food allergies my kids have, the best piece of advise I have received was from the GI specialist we see at Phoenix Children’s Hospital. On one of our visits he said,
“There’s not much difference between food allergy and food sensitivity {unless you have a severe allergic epi-pen level reaction}. We all have food sensitivities – we eat something, it doesn’t make us feel good, so we avoid eating it. There isn’t always a defined medical explanation for why certain people don’t feel good after they eat certain foods.”
Is that who you would recommend seeing if I think (I’m positive) my son has food allergies. He’s 8 months old and his pediatrician won’t do any kind of testing on him. He is just miserable and has been since birth. I cut dairy and soy, but haven’t been able to cut gluten from my diet yet. I’m so worried to introduce new foods to him because he already has such a hard time. He poops once every 2 weeks and it takes about 3 days for him to work it out.
While I am not a doctor, only a mom who has been there – you could consider it. If your son is almost exclusively breast fed, then pooping that infrequently is not uncommon. If you see reactions to introducing foods, then maybe a pediatric allergist might be a better answer. They will do skin tests on infants – because blood tests are often unreliable until after age 2. I did have a friend go through this with her daughter and skin test helped them the most. Either way, I found that flat out asking your pediatrician for a recommended specialist (be clear that is what you want) is the best place to start even if they are unconcerned.
We also see a GI specialist at Phoenix Children’s. My daughter’s bloodwork came back negative, but the immediate improvement as soon as we stopped dairy and gluten was clear. on a subsequent visit, the GI specialist said that bloodwork was not accurate in kids under 3 (i wish he had told me this first!). So if you suspect an intolerance, I would just do an elimination diet for a few months rather than subject your little one to an inaccurate test.
In order to really pinpoint celiac, you need an intestinal biopsy. Blood tests mean nothing. I was told via blood tests that I am allergic to almonds, cayenne, asparagus, avocado, crab, and watermelon. NOTHING happens when I eat this stuff, yet I have 911 kind of stomach pain when I eat lobster. Go figure.
Shandra that’s so interesting! That’s why I love what our pediatric GI told us – sometimes science just doesn’t explain how food makes us feel and react! I do want to say that my understanding and experience with celiacs is a bit different. What you say about the biopsy is both true and not true. There are 3 tests for celiac’s disease – the gluten tolerance test, a DNA marker analysis for 2 markers, and the biopsy. All 3 tests have a fairly large percentage of inaccuracy both with false negatives and false positives. I can go into more details on this if you’re interested. Our GI explained that a diagnosis is a positive on at least 2 of the 3 tests. A great example of this is that someone I know had a positive on the gluten tolerance, carries both DNA markers and was negative for the biopsy. This person is considered a celiac because the first two were positive. Chances are if the biopsy was repeated down the road, it would be possible for a positive result. Because celiac’s is autoimmune, there’s no recipe to determine when it’s active and inactive. I just wanted to comment on that because there is confusion out there (especially in the medical community) and I have heard what you said from others about a biopsy being the only way to diagnose celiacs. It is one of the tests done but it is not the only test used to determine celiacs disease 🙂
I started my daughter off on rice cereal all was fine until I gave it to her for the fifth time at about five months. Two hrs after feeding it to her she started vomiting and didn’t stop for 3 hrs every 10-15 minutes until bila came up and she lost all color and body temperature (I would later learn she was near death in full on shock). I thought she just had a Stomach bug so I fed her the rice cereal again a few days later with the same result. By that time I knew something wasn’t right and had to be the rice cereal. After working with children for years with severally limited diets I was perplexed because rice was a “non-allergenic” food. And my clients with only a handful of safe foods rice was always one of them. I went to an allergist at 6 months and had her tested all came back negative I was frustrated and felt crazy until an accidental exposer had me on the phone begging the allergist office for help as my doctor was out of town. This was our blessing as another doctor in the practice said she has FPIES (Food protein Intolerance Enterocolitis Syndrome. ) I was then told to go look it up on the Internet. It was as if someone had narrated my last few months word for word. The worst part was reading, “there is no treatment and very little known about it” not even a test to diagnoses it nor a doctor to offer medical advice. I knew I was in this alone. Fighting every day to protect my child from a food even I thought couldn’t cause any harm.
Every new food has to be given under full supervision even if the ingredients are listed because one protein can send her into life threatening shock. Everywhere we go; story time my eyes are glued on the little girl across the room with a bag of baby puffs. Knowing just one of those can put my baby’s body lifelessly in my arms again.
Our story is a scary one we take day by day but are incredibly blessed, as many with it have only 2-5 foods they can eat at all and end up on feeding tubes.
I started my daughter off on rice cereal all was fine until I gave it to her for the fifth time at about five months. Two hrs after feeding it to her she started vomiting and didn’t stop for 3 hrs every 10-15 minutes until bila came up and she lost all color and body temperature (I would later learn she was near death in full on shock). I thought she just had a Stomach bug so I fed her the rice cereal again a few days later with the same result. By that time I knew something wasn’t right and had to be the rice cereal. After working with children for years with severally limited diets I was perplexed because rice was a “non-allergenic” food. And my clients with only a handful of safe foods rice was always one of them. I went to an allergist at 6 months and had her tested all came back negative I was frustrated and felt crazy until an accidental exposer had me on the phone begging the allergist office for help as my doctor was out of town. This was our blessing as another doctor in the practice said she has FPIES (Food protein Intolerance Enterocolitis Syndrome. ) I was then told to go look it up on the Internet. It was as if someone had narrated my last few months word for word. The worst part was reading, “there is no treatment and very little known about it” not even a test to diagnoses it nor a doctor to offer medical advice. I knew I was in this alone. Fighting every day to protect my child from a food even I thought couldn’t cause any harm.
Every new food has to be given under full supervision even if the ingredients are listed because one protein can send her into life threatening shock. Everywhere we go; story time my eyes are glued on the little girl across the room with a bag of baby puffs. Knowing just one of those can put my baby’s body lifelessly in my arms again.
Our story is a scary one we take day by day but are incredibly blessed, as many with it have only 2-5 foods they can eat at all and end up on feeding tubes.
I should mention I live in constant Stomach pain and every so often find a new food to add to my allergy list.
Wow Lisa, that’s crazy!! I have never even heard of that. How hard as a mom. I applaud you for trying to continue a life of normalcy for your daughter. I would be so tempted to just put them in a bubble! I almost sub-titled this post – “please don’t feed my kid” because of situations like this. We just don’t know whether other kids can eat what our kids eat. I always try to ask other moms before my kids share anything just to be sure. Blessings to you and your journey as a mom!!
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