Bumpy road to diagnosing milk, soy protein intolerance31 Oct 11 01:00PM EST |
My two children are milk and soy protein intolerant, MSPI. Most people stare at me blankly when I tell them this.
My daughter, Stella, was a relaxed baby for the first week. Then she began to sleep less, feed more and cry, a lot. I was told that she was a “normal” baby but mother’s intuition told me otherwise. I’m dairy intolerant so didn’t it stand to reason that Stella could be too? I started to do some research.
MSPI is diagnosed through an infant’s history. While symptoms of milk allergies usually appear from four-six weeks of age, symptoms (such as irritable behaviour, restless sleep, nappy rash, reflux and/or abnormal stools) that start before this are a sign of milk intolerance. I watched my daughter closely and noticed that when I ate dairy she exhibited most of the above symptoms.
At eight weeks I spoke to a local midwife and was told that whether or not I ate dairy wouldn’t affect my baby.
I later found out that this is true of lactose intolerance, not milk protein intolerance. Cow’s milk and soy proteins pass through into breast milk so if the mother is eating dairy and soy these will pass to her baby. Turns out the way I had been observing Stella is what is done to diagnose a baby with suspected MSPI.
At three months we began topping Stella up with NAN HA, a protein hydro lysate formula, to help curb the constant feeding. Although there are still small amounts of cow’s milk protein in this formula it was not enough to cause a huge reaction in Stella and she calmed down a lot so we thought she must have been hungry.
At ten months we were told to introduce cow’s milk. We did and Stella began vomiting and having diarrhoea.
Breastfeeding and delaying cow’s milk introduction has the reputation of preventing allergies, however evidence of intolerance to milk can be found in babies before birth. Other evidence suggests prolonged breastfeeding and delaying cow’s milk gives baby’s system time to mature out of the allergy or intolerance. However this only helps if the allergen has not been introduced at any point during this time.
Stella was diagnosed with gastro. After one month I’d had enough. I suggested to the doctor that she might have dairy intolerance. The doctor agreed it was a possibility and gave me a referral to a paediatric specialist.
Keeping a food journal
In the lead up to our appointment I kept a food journal. I told the specialist her history and showed him the journal. Stella was diagnosed with milk protein intolerance and we were advised to use soy products. Her symptoms continued. I did more research and found that dairy intolerance is commonly associated with intolerances to soy, goat’s milk, sheep’s milk and other protein foods and even fruits and vegetables in extreme cases.
Feeling let down by conventional medicine I saw a naturopath who confirmed my findings and advised that we should try goat’s milk as it’s easier to digest because the proteins are similar to those found in breast milk. Stella’s intolerance was not severe so she ate foods that contained milk protein in their ingredients but we replaced her milk, yoghurt and cheese with goat’s milk products. We also used a probiotic (Ethical Nutrients Eczema Shield) in her milk that has been shown to help the intestines heal in the case of food intolerances and allergies. Stella’s symptoms abated.
Gaps in knowledge
When my son, Thor, was born I thought I was armed with all the relevant knowledge, unfortunately I was not. I did not know to what extent I had to avoid dairy and soy while pregnant and breastfeeding. My son was also born MSPI and self-weened at 10 weeks. We tried him on NAN HA to see if he reacted. He did, so we changed him to goat’s milk formula and his symptoms disappeared.
Symptoms in response to cow’s milk and soy can start immediately or take up to 72 hours to show. People may exhibit just one or several of the symptoms and there’s a large degree of intolerance so it can be hard to pinpoint.
At two Stella was tested by a specialist, using the pin prick method, for soy, cow’s and goat’s protein. We were advised that we could try her on cow’s milk again and when we did her stomach swelled and she had diarrhoea. I went back to the internet and found that the pin prick test works for allergies but not always intolerances. I also found that in the case of MSPI it’s vital to cut out ALL foods that contain dairy and soy proteins to allow the body to heal. It was at this time that I also learned to what extent I had to avoid these foods while pregnant and breastfeeding.
Identifying milk and soy protein
It’s amazing how many things contain milk and soy protein and how many names they have. Milk products include: milk, butter, cheese, cream, buttermilk, milk solids, milk powder, milk protein, malted milk, condensed milk, evaporated milk, milk derivative.
Words that indicate the presence of milk: 5, goat’s milk, sheep’s milk, skimmed milk, low fat milk, dairy solids, non-fat dairy solids, yoghurt, whey (all forms), casein, caseinate, caseinate, sour milk, curds, custard, artificial butter flavour, ghee, butter oil, butter fat. Soy products include: soy flour, soy protein, soy protein isolate, textured vegetable protein, some vegetable oils, soy beans, soy caseinate.
The list of foods that contain one or both of these ingredients is often surprising. Most bread in the supermarket contains soy flour; Rye bread is often a good option but not always. Patty cake holders and cake sprinkles often contain soy. Many biscuits and muesli bars contain soy and milk protein as do many confectionary items. Prepared meats including lunch meats, sausages and rissoles often contain soy protein. Many baby foods contain one or both. Crumbed foods often contain soy flour, in fact a vast majority of pre-prepared meals in the supermarket contain either dairy and/or soy protein.
Most supermarkets now stock allergy-free food options, however many that are dairy-free contain soy and vice versa. One brand stocked in my supermarket and online, is Orgran. Not all of their products are dairy and soy free but the majority are and they are clearly labelled on the front of the packets. Specialty stores are also becoming more common. As usual, the best way to avoid any ingredients is to prepare food yourself.
The journey we took to get to this point has been long and frustrating. It is a shame that there’s not more awareness of MSPI. I find it outstanding that of all the people we saw, including; two midwives, one doctor, two allergy specialists and a naturopath, no one gave us the Milk Allergy information booklet [PDF] put out by the RPA which contains all the information I spent two and a half years fighting to find myself. I came across it on a chat room a week ago..
Do you or your children suffer from MSPI or another allergy or intolerance? If so, how hard has it been to get the right diagnosis, the information and the support that you need?