Food Allergies and Intolerances: Our Journey Continues
This post is by regular contributor Naomi Cook.
Four weeks ago I left the Allergy Centre at our local hospital with my daughter. She had been newly diagnosed with multiple food chemical intolerances, but I was feeling lucky. As I paid the receptionist for our visit I overheard a doctor ask another mother, “Have you packed their epi-pens?” My heart went out to those families, those mothers living with their children’s life-threatening allergies on not even a daily, but hourly basis.
You may remember my previous post on Cow Milk Protein Intolerance. It is perhaps almost predictable, food allergy experts may say, that we are here at this crossroads once again. My daughter has spent recent months increasingly unsettled and unhappy. Screaming fits after eating and sleep difficulties have prompted us to investigate; and indeed there is more to our ‘food intolerance’ picture.
Allergy vs. Intolerance
These terms are sometimes used interchangeably for simplicity (it is also easier to describe food intolerance as an “allergy” to someone who has no knowledge about the subject) but they not synonymous and can be defined as the following:
Allergies
Allergies involve the immune system where the body reacts to certain proteins in particular foods (4). Common allergenic foods include egg, milk, nuts and seafood. 3, 5
Physical Reaction: This is usually quick, the body releases histamine and IgE which can result in red itchy skin and hives. There may be gastro-intestinal symptoms such as nausea and vomiting. 3 In severe cases there may be respiratory symptoms such as bronchospasm (tightening of the airways) and difficulty breathing. Widespread swelling can result in a dramatic drop in blood pressure and this may lead to collapse. If anaphylaxis occurs, death is possible. 3
Diagnosis: Blood tests (RAST) and Skin Prick Tests. 3, 5
Treatment: Adrenaline (when life threatening), anti-histamine, and sometimes a lifetime avoidance of the problematic protein is necessary. Some allergies like dust mite allergy can be treated by a course of injections of allergen to bring about de-sensitization.
Intolerances
Intolerances do not involve the immune system. Instead certain food chemicals irritate the endings of nerves in different parts of the body. 4 These food chemicals are not unique to particular food stuffs but occur across multiple food groups. 4
Physical Reaction: This may be slower, occurring over hours or even days. Because there is an agitation of nerve endings all over the body resulting symptoms are diverse. This diversity means that symptoms are much harder to pick up upon as they may even be almost nondescript, seemingly unrelated to food. They may include sleep disturbance, hyperactivity – in children – aggravated ADHD, 1, 5 irritability, headaches, depression, lethargy, constipation/diarrhea (Irritable Bowel) and feeling ‘run down.’ 1, 2, 4
Diagnosis: Supervised elimination diet followed by food challenges
Treatment: As the symptoms are diverse so is treatment and will depend on the body area affected, someone who gets a migraine after eating chocolate may take paracetamol or something stronger. Someone who gets heartburn after eating tomato may take an antacid or need on-going medication for reflux. Avoidance of the problematic foods is key but it is thought that tolerance and personal thresholds to the problematic food chemicals can increase over time, especially in children. 3, 5
What are Natural Food Chemicals?
These are chemicals that occur naturally in all foods in varying degrees; low, moderate, high and very high. 5 Usually the tastier something is, the higher it is in natural food chemicals. 4
Salicylates: These are plant chemicals and occur in a multitude of food products including fruit and vegetables. They tend to be higher in unripe fruit and vegetables. They are present in natural flavourings and perfumed products, from toiletries to cleaning products. They are also found in high quantities in many herbal medications. 3, 5
Amines: These are produced in higher quantities in food after protein breakdown; they are in many ripe fruit and vegetables and fermented products such as yeast products. 3, 5 They increase in meat it ages, such as when it is frozen and consumed later.
Glutamates: These amino acid building blocks are found in most foods and are ultimately natural flavor enhancers. 5 Tasty foods such as soy sauce, cheese, vegemite and yeast extracts are naturally very high in glutamates and are often extracted and added to bland foods to increase their flavor. 3, 5 Monosodium glutamate or MSG is the best known example. 5 Hidden glutamates are often described as “yeast or vegetable extracts” on the products list of ingredients. 1
Someone who reacts to natural food chemicals will most likely react to artificial additives found in processed foods and medications. 5
My Daughter
Even before starting the elimination diet with my daughter we knew that she was sensitive to salicylates having had a screaming fit after eating soup with tomato in it (tomato is very high in salicylates). She cried whenever she was given fruit puree with berries and these are very high in salicylates. We also thought she was sensitive to the amines in chicken and fish as they always made her very constipated (she also gagged when eating the tiniest amounts of these meats which my mother’s intuition felt was her little body telling her that it was no good for her). Mealtimes where becoming increasingly stressful with much unexplained crying. Previously uninterrupted night sleep was becoming punctuated with crying fits and early morning awakening and she seemed to need higher and higher doses of reflux medication to settle her.
Elimination
The elimination diet needs to be supervised by a dietician. In the “strict” diet foods will usually only be allowed from the “low” list, 3, 5 that is, foods low in salicylates, amines and glutamates. Some elimination diets such as the “simple” allow foods from other categories such as moderate or even high. 3, 5 Elimination can take 3-4 weeks and then once there has been a succession of ‘good days’ food challenges can begin. 5 Reactions to food challenges help then to determine what food chemicals are problematic and after some time hopefully it is possible to work out a personalized threshold level for the culprit chemicals.
We are just eating from the “low” list which includes swede, celery, leek, white potato, rice and pulses. For fruit, one very ripe, peeled pear is allowed a day. This is in addition to no dairy, soy, meat, wheat or gluten or any other vegetable that is flavoursome and higher in natural chemicals. Meals are simple, brown rice pasta with butter beans, leek and swede sauce, followed by rice pudding made with an amino acid based (non-allergic) formula.
I am presently on the elimination diet too as I am still breastfeeding. As you can imagine things are pretty limited, but every cloud has a silver lining: The little food I can eat, tastes great and I have really lost interest in most processed foodstuff.
My daughter is already beginning to improve, for the first time in five months she has slept through the night, she plays happily by herself and mealtimes have become less stressful. The next step for us will be food challenges but in the interim, I am tentatively hoping that she is beginning to enjoy her little life once again.
I’d love to hear from other mothers of allergic and intolerant children about your journey through diagnosis and treatment.
Further Reading
This link to Sue Dengate is the key to understanding more about food chemicals, and which preservatives and additives to avoid in processed food, I highly recommend it. Her two books: “Fed Up” and “Failsafe Cooking” are food intolerance bibles, 2 I would recommend reading them even if your children are not allergic or intolerant, the amount of information provided on artificial food additives is eye opening and for me, will change my shopping and food choice habits for life.
The Royal Prince Alfred Hospital has the following invaluable publication Friendly Food 5 and multiple informative pdfs on allergy.
These links provide access to a huge variety of food products suitable for the allergic and intolerant:
- Allergy Assist
- Allergy Train
- Allergy Friendly Foods
DISCLAIMER: The information contained in this article should NEVER be used as a substitute for the advice of a licensed physician. The information provided here is for educational and informational purposes only. In no way should it be considered as offering medical advice. Please see a physician if you think you or your child are unwell. This author has no competing interests.
References
- Dengate S, “Fed Up” (2008) Random House, Australia
- Food Intolerance Network: Food Intolerance Factsheet
- Royal Prince Alfred Hospital “Elimination Diet Handbook” at www.allergy.net.au
- Royal Prince Alfred Hospital “Food Allergies and Intolerances”
- Swain A, Soutter V, and Loblay R, “Friendly Food” Murdoch Books, Australia
You did a great job explaining the differences! I really like to see articles like these, because it helps to spread awareness.
My daughter has food allergies and most of which are igE, so she will have a very quick response.. hives, vomitting, etc. She has life-threatening allergies to tree nuts, sesame and flax and mild allergies to other foods like berries, melons, etc. She also has celiac disease.
At first, she started having eczema. Then she had her very first alergic reaction to a pine nut. Right after, we found a pediatrician who specialized in allergies and we were able to find out all of her allergies with a blood test. We haven’t done the skin prick test and probably will not at this point.
I think it’s really, really important to find a good doctor. That’s really what helped us. One that can guide you in what to do now and what it means to be food allergic. I’ve heard some families that have children with diagnosed allergies, but they haven’t really gotten an explanation from their doctors on what that really means.
It was important to us especially, because our doctor explained that our daughter was reacting to many foods that she wasn’t actually allergic to (for intance, Carrots) simply because her anti-histimine levels were so high. Her body wasn’t able to tolerate anything, not even simple foods like peas and carrots.
After diagnose, we eliminated the allergens from her diet (and mine, since I was breastfeeding) and she responded very quickly. We also did a few other things like supplements (vitamin C, acidophilus) and shortly after we were able to add foods to her diet that she could tolerate and wasn’t allergic to. She went from being a toddler who could only tolerate one or two foods, to being able to eat a balanced diet.
Anyways, thanks so much for spreading the word and I am sure this will help many families out there. Allergies and intolerances are certainly on the rise, and information and awareness is priceless.
whoops, I meant “because her histamine levels were so high” not anti-histamine levels.
Fantastic article, we went through the elimination diet with Heidi when she was younger and it was hard work, so I take my hat off to you.
Luckily for us, Heidi’s food issues are sensory related mostly (aside from allergies, of which which has outgrown all other than nut) and we are able to work around the sensory issues.
I’m one of those lucky parents with an epi pen! Lucky because we know what our 5yr old son is allergic to (cow’s milk protein) and know what to do if/when he has a reaction.
The diagnosis took a long time as the skin tests didn’t originally pick it up even though he’d frequently vomit after drinking formula (but it was put down to reflux). Now that we’re a few years down the track and he’s able to be quite responsible, things are easier. It still sucks though when I think about it (which I try not to do too much). I find December the hardest time because there are so many social occasions that I need to be organised for. We can’t do spontaneous play dates or outings without thinking about food and at school he sometimes misses out on things.
The EpiPen has to come everywhere with us and needs replacing every year (not cheap either at about $140) and sometimes I get really tired of reading labels. A wonderful vegan cafe opened up in our neighbourhood recently and that’s been life changing. Now there is some place we can go where he can choose something to eat which is so great. Sometimes I write about our allergy struggle on my blog…
http://growingkiwis.blogspot.com/search/label/allergies
I loved your article and to hear about your experiences.
We have a two year old who was diagnosed with dairy and egg allergy at about 6 months and then nut when she was 12 months. She will vomit and get eczema when she has an exposure and we have just found out that the only nuts she is allergic to are peanuts and seasame seeds.
I agree about getting a good doctor who will listen. When our daughter first started getting eczema from dairy and egg, we were referred to a dermatologist who basically said – use medicated cream for the rest of her life – without talking about finding out what was the cause. Not being happy with that – I got a referral to the Royal Children’s Hospital eczema clinic who immediatly sent us up to the allergy clinic who then did skin prick tests. I was very pleased with the Hospital and the doctor who has looked after her since. She is currently off all dairy, egg, peanuts and seasame. Hopefully she will be able to have a cooked egg challenge in the hospital to see if she has outgrown that one. Fingers crossed!!
Oh well done, well done, for searching for the cause!! Sometimes you wonder what medicine, and society in general have done with their “norms”!
Meg, why are you paying so much? My son is six and has peanut allergy. We get two epi-pens under the PBS for $30 or so.
It’s not a great club to be a member of but it’s good to connect with other parents who understand the stress and emotional impact food allergies have on a family.
I live in New Zealand and Epi Pens are not subsidised here. They are pretty expensive but because of his severe allergy he does receive a “child disability allowance” to cover medication, special food etc.
That’s terrible! I can’t believe you have to pay so much for an epi. But on the other hand is good that you get the allowance. I wish I got that for my husband who has coeliacs. Gluten free food is ridiculously expensive!
Hi Naomi,
Another excellent post. You might remember I commented on your last post on cow’s milk protein intolerance – my little girl (3 months at the time, now 8 months) suffers from the same condition. Anyway, like your daughter she improved with the elimination of dairy and soy from my diet, but didn’t completely settle. She still had occasional bouts of screaming and vomiting. About 4 months ago I did the full elimination diet thing as well and discovered that the other culprit was wheat. Exclusion of wheat from both our diets has made a big difference. Our pantry looks a lot like your photo! On the upside I have discovered some great products such as coconut milk yoghurt, coconut ice-cream and oat sourdough bread. I hope you find some answers with your elimination diet too. It is a tough thing to go through but so worth it in the end.
Hi Maggie, I wondered if you would read this as I thought of your daughter when writing! It is a tough road. My daughter did so well once I eliminated dairy and soy but I had this feeling that somehow she looked “toxic” and I felt that there was something else. It was introducing solids that made all hell break loose as she got such higher doses of everything. However, when I’d eliminated dairy my vegan diet was full of things sky high in salicylates (like coconut milk, almonds etc), and it was probably those chemicals that made her look so unwell (colour plus allergic shiners). We are 6 weeks into elimination now, still not ready for food challenges as we’ve had many set backs along the way. I’m sure wheat will be an issue like it is with you. Take care and keep in touch on your journey too!
Our family too went through the elimination diet with my husband. He has several food intolerances including salicylates, amines and glutamates as well as wheat, eggs, yogurt cultures and milk protein. Phew! When he was diagnosed we thought he would never eat again! But 5 years on we have become quite the food detectives, searching out nasties in any and all foods. We actually have a better diet now than we did before hand.
Thank you for highlighting this issue. Food intolerances whilst they can be very challenging are also become more and more manageable. There is so much more out there now as far as different foods options are concerned than there ever was when my husband was first diagnosed. That and people are becoming much more informed too thanks to articles like this one.
Thanks so much for sharing everyone, I’d like to write a post on things like ‘food in the playground’ etiquette, children’s parties etc to raise awareness amongst parents of non-allergic/intolerant children, perhaps later in the year. Let me know if there are any issues you think would be good to address. It’s good to know there are others out there facing the same challenges (and spending the same number of hours in the kitchen, creating dishes from scratch!!). Take care and stay well x
Good work Na3eema!
Looks like alot of people need to know such information.
Thank you for sharing your story.
I have a strong interest in this area as I have seen first hand how foods can affect myself and my children.
It can be so hard to have people accept your child’s dietary issues, and this is one area where I really struggle. When I have total control over my children’s diets they are very different little people. People just dont get it and it can be so hard for parents to get understanding from others.
Anyway, thank you
You make a really good point sarah, I’ve yet to come up against the “will” of others but I can just imagine how hard it is going to be. It is time that allergies and intolerances got into the limelight a little more, I intend to write a lot more about them both in my capacity as a nurse and as a parent. Will let you know when something else is “out there.”
Thank you for a wonderful article. Seeing articles like yours helps to ‘normalise’ the experiences that I, and many other mothers are going through.
At age 1, my son was diagnosed as a Coeliac. Elimination of gluten helped enormously, but there was still some significant behavioural issues that were of concern. Our dietician reccomended the elimination diet and boy has it changed our lives.
I was very fortunate in a way, as one of the other kids from my mothers group also faced similar problems and is also on the elimination diet. It has helped so much to be going through this journey with another mum with a child the same age.
Explaining the importance in the dramatic change in diet to childcare has, at times been extremely difficult. While they have tried to understand and acommodate my son, trying to explain the difference between his allergy to gluten and his sensitivity to sals, amines and glutimates has been challenging. He is now 2.5 and has JUST started sleeping through the night, has JUST started eating willingly, and has JUST reached the stage where we are having very few ‘accidents’ with his diet & consequently his behaviour.
There are a lot of people out there who are doubters, or who look down on me for feeding my child such a restricted diet. They are not the people who have seen the difference in my child post-diet! Once childcare saw the difference, they realised the importance of supporting us in this journey. Once family members saw the immediate impact that 2 mulberries had, they realised the extent or severity of the the reactions.
Do not be discouraged. There are many mums out there in a similar position. We know our children best – and if we can see the benefits to this modified diet, then the rest of the world should stand behind us and support our choices which are, after all, in the best interests of our children.
Hi Naomi and everyone else 🙂
A friend sent me this link and I’m so glad. I’ve been writing about our allergy and food intolerance “journey” for a little while on my blog but I’ve never written anything as simple and concise and well-explained as this.
My daughter is 18 months old. She is wheat, dairy, nut, egg, soy and salicylate free. We avoid glutamates and additives too.
There has been a dramatic improvement in my daughter’s health and happiness but we aren’t at the finish line yet. She still has big sleep issues (although better than they were) and struggles to eat most days. Reflux continues to be a big problem and we have a little bit of persistent eczema. I know that there is something more that we need to figure out but we aren’t there yet.
Would love to subscribe to your posts!
Hi there,
Thanks so much for your comments. RPAH have to take credit for the info in my post as all my research comes from their publications!
I am interested that your daughter still suffers from reflux, is she still on medication? My daughter is still on the maximum dose and I know that current studies have not look at medicating beyond six months of age (which was ages ago!). We have no choice but to keep medicating though…
I write for childhood101 once a month on a variety of health topics, my posts usually come up mid month but I’ve struggled to get much up recently due to an unhappy baby suffering from the (long winded) fallout of a dairy challenge. Who ever knew that three teaspoons of yoghurt could cause so much trouble!
Keep in touch, and thanks again!
Yep, she’s still taking Nexium twice a day. I recently took her off Zantac. For a long time she was on both and that had been the best drug combo for her. Losec never worked for us. I’m still not 100% sure about the wisdom taking her off Zantac. I can’t see that she’s any worse but I get nervous because she’s got silent reflux and she has so many other symptoms and problems (and she’s not verbal) that it would be difficult to pick up a new symptom amongst the rest. We tried her off medication altogether and there was a definite return to full-blown reflux 🙁
I have been looking into EE as a possible reason why her reflux has persisted despite the diet: http://en.wikipedia.org/wiki/Eosinophilic_esophagitis
http://tortoisetales2.wordpress.com/2011/06/09/720/
There are so many wrong turns and twists in the food intolerance and allergy journey. I hate that I might be heading down the wrong path while my daughter suffers for it.
Your daughter sounds a bit like mine. She also takes weeks if not months to recover from failed challenges. Nothing like the doctor or the books seems to suggest!
Hi I know im a bit late in on the chat but never mind I have enjoyed all your comments and gained a little along the way.
I have just started the process with my son as I know something is not right thankfully he does not have extreme reactions but he does have hyper sensitive skin and just doesn’t look or behave well some days for no apparent reason..anyway off to the dietitian we go .
The main reason I wanted to write was in regards to your food in playgrounds comment. I searched for the post with no luck…
I was flabbergasted the other day to see a woman sitting on the floor of a soft play area in a shopping center letting her children eat peanut butter sandwiches, honestly i was amazed at her ignorance to other peoples children. It made me realize that kids with life threatening allergies are ignored by most society.
We need to educate!
XXX
Hi Sonia,
Thanks for the reminder, I should write something on that soon. Actually it’s funny timing as I’ve just started going to Kindys in my area to give small presentations to kids on food allergy with a huge focus on playground safety. Even if their parents are ignorant, their children won’t be!! Grassroots…
Good luck with your food journey, I hope you get some positive outcomes from the dietary changes x