The Intolerant Tot Interview
I’m pleased to bring you the second interview in my series of chats with parents whose kids have food allergies and intolerances. The more I hear these stories, the more I learn, and the stronger I feel that these families are crying out to be heard. I’m frustrated for them. I never could have imagined how challenging a journey it could be, or how diagnosis isn’t as easy and straightforward as you would think.
Today I’m talking to Sophie, who is a British mum of an adorable 16 month old, Lucas, who has a Cow’s Milk Protein Allergy (or CMPA) as well as many non IgE food allergies (allergies in which the reactions do not appear immediately after the ingestion of the food and usually relate to reactions of the gastrointestinal tract, such as vomiting, bloating, diarrhoea). His safe food list is sadly getting shorter and shorter, and add onto it silent reflux, eczema, hay fever, and asthma…and you have an often unsettled little boy and many a disturbed night’s sleep. You can find Sophie and her Intolerant Tot on Facebook and Instagram. Sophie started to document her journey in December 2016 as a way to vent, and has been fortunate to meet a great social media community (read on to discover who they are) in which they share advice, stories, and support. It’s wonderful that she doesn’t have to navigate the world of allergies and intolerances on her own.
Can you tell us a little about Lucas, and what kind of food allergies or intolerances he has? Is there a family history?
My son was diagnosed with CMPA at 13 weeks after me saying something was wrong almost from birth. Every doctor and midwife dismissed my concerns and kept telling me it was colic and didn’t take me seriously as I was a first-time mother. So I eventually enlisted the help of an alternative therapist after stumbling across many more issues once we started weaning. Then when I eventually saw a dietician she was rude and unhelpful. Luckily my son’s paediatrician is great at referring us to the various other professionals.
My son suffers hay fever as do I (not sure which pollens are the culprits!), asthma, and eczema. Also before I removed all allergens my son suffered constant ear infections which I recently discovered can be as a result of allergies due to the compromised immune system! Luckily this seems to have passed due to avoiding our list of allergens.
We are dairy, soya, coconut, almond, lentil, chickpea, plum, potato, banana, orange, sesame, oat, wheat, and barley free (plus we’re avoiding gluten until we get the test results for coeliacs). No allergy to nuts but peanuts can irritate my son’s gut.
I have a dust allergy and am currently undergoing tests for IBD/IBS. I’m also sensitive to dairy, wheat, kiwi, citrus fruits/raw fruits, Brazil nuts, coconut, garlic, and caffeine. My doctor talked about me following the low FODMAP diet for relief from my tummy symptoms. My mother has a dairy sensitivity/intolerance (diagnosed via diet). My youngest brother was put on a lactose free diet as a baby (CMPA wasn’t as widely known back then), but outgrew his issues. My sister has a peach and possibly strawberry allergy.
I make 80% of our food but have a few products I can buy after finding safe brands. I find I have to adapt recipes or make my own very often as most vegan/dairy free recipes use coconut. My hubby and I will eat things that contain Lucas’s allergens but I restrict these food items as much as possible and they’re stored separately in the fridge/freezer and food cupboards to avoid a mishap! Nine out of ten family meals are Lucas friendly, and we very rarely eat separate meals.
What do you wish someone had told you as soon as Lucas was diagnosed? Would you have done anything differently, knowing what you know now?
I diagnosed Lucas myself. But once we were under a paediatrician he was great at making relevant referrals but we didn’t see him until Lucas was 7 months old, and I had already started weaning. Unfortunately the dietician was no help at all other than giving me a leaflet with words to look out for on food labels that mean dairy. Long story short I had to make a complaint about her in the end. I wish someone had explained that CMPA meant he was at higher risk of having other allergies, that it was linked to asthma and eczema, a lower immune system, and ear infections are common. I WISH doctors would push improving gut health through pro/prebiotics, vitamins and a healthy diet eliminating the allergens. I’ve learnt so much about leaky gut, supplements and diet and allergies in general now. I also wasn’t aware that my allergies meant having a child with allergies was higher risk for me.
I would have introduced vitamins and probiotics much sooner but I feel I did quite well myself at picking up his allergies through following the weaning steps- introduce one new thing at a time for 4 days. I wish I knew there was a link between recurring ear infections and allergies. I may have picked up my sons issues with wheat sooner.
What 3 things would you like other parents to know about Lucas’s food allergies and intolerances?
- I would like people to understand the difference between IgE and non-IgE allergies (find out more here https://imupro.com/igg-food-allergy/), and intolerances (https://www.allergyuk.org/information-and-advice/conditions-and-symptoms/36-food-allergy). That the reactions are different, there are possibilities to outgrow them, and they require retrial.
- I would like people to be aware that yes a little bit does hurt! Reintroduction must be controlled and is done following ladders. (Find out more about this process here http://cowsmilkallergyguidelines.co.uk/downloads-and-resources/downloadable-map-milk-ladder/)
- And I’d like people to know that every allergen can cause a different reaction. It’s not necessarily a face swelling reaction. There are other reactions but yes it can still be an allergy.
How do you manage going out in ‘the world’ (birthday parties, childcare/school, people’s homes)?
I dread parties! I follow Lucas everywhere and try to make all parents aware he has allergies. It can be the same at picnics, toddler groups, or playdates at a friend’s home. Lucas will pick up anything and eat it, and children do drop food. I just don’t take my eyes off Lucas when there’s an allergen around. It can cause a bit of anxiety! I panic a little about Lucas when he’s at his childminders, it’s difficult to trust the person whose care he’s in has a safe environment and all the knowledge needed.
Where have you found most of your support and information? Can you recommend any good websites or resources?
I have found most support from an Instagram community created by Healing Gracie’s Gut and the naturopath I use. I also follow a few Facebook groups-
- CMPA support for weaning
- CMPA support for reflux
- CMPA support for recipes and finds
- CMPA support for breastfeeding
The naturopathic nutritionist I see in the UK can be found here
The holistic therapist I see in the UK can be found here here
Do you have a favourite recipe, or restaurant, or food blogger, or cookbook that you would like to share?
Paleo Canberra Healthy, organic, paleo food inspiration for families
Dr Allergy Mom Doctor/Allergymom. Food=medicine/heal the root
Momma Crown Gluten Free, Dairy Free, Soy Free
Allergy Free Tummy NZ Reflux baby, Allergymom. Dairy, Soy, and Gluten free
Pea Fritters Beautiful + delicious allergy/intolerance friendly food
Nourishing Lola and Sage Organic, Refined Sugar Free, GF and Primal
I Am Meowms Food allergy hacks. Gluten/dairy/soy/egg free
James’ Health Journey GUT health. Family health journey ASD/SPD/FPIES/ PANDAS
Wellness Gypsy Tribe Cooking, Wellbeing, Fun. Food intolerance life
Natural Therapist Jobs Find naturopaths, nutritionists, massage therapists
What is a typical day like for Lucas, in regards to food?
Breakfast – beans and egg/sausage/toast, Free From cereal, rice porridge, spread on toast like jam, Nutribix, plus his dose of reflux medications with a bottle of formula (which is an amino acid based infant formula for infants with severe cow’s milk protein allergy, eosinophilic oesophagitis and/or food intolerance).
Mid-morning snack – dried or fresh fruit or fruit purée pouch or a Nakd/Meridian/rice puff and date bar, maybe Free From breadsticks.
Lunch – if out and about I’ll do a packed lunch. It could be a Free From bread product with a spread, maybe ham too or breadsticks with veg sticks. Fresh or dried fruit. Maybe a jelly pot or fruit pouch. A packet of safe crisps or similar; a safe bar, cake or biscuit. I tend to give a sweet treat at lunch rather than after dinner.
Dinner – it’s either something we’ve made fresh or if we’ve had a busy day I can use something I’ve already prepared like meatballs and Free From pasta. Dinner is always something I’ve prepared unless it’s a treat cheat dinner like hotdogs. But we are very limited on pre-made/packaged/frozen ready meals – in fact I’ve not found anything! We are also restricted when it comes to eating out for lunch and dinner. And takeaway is even worse!