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InfoPoint- Mast Cell Diseases

Mast cell activation syndrome. Mast cell activation disorder. Mastocytosis.

This is a set of difficult rare diseases that I am going to endeavour to do justice.

Miss 4 has MCAD. As do several other children I know. It is relatively unknown even by doctors, very difficult to diagnose, and even more difficult to manage.

It is associated with many of the other allergy conditions I have posted about, as well as some connective tissue disorders I will get to posting about as soon as I can.

Systemic mastocytosis is a life-threatening auto-immune and allergic condition. It occurs when the mast cells that make up part of a person’s immune system are found in huge numbers in lots of organs of the body. Their presence and reactivity causes reactions and potential organ damage and failure. There are a myriad of symptoms associated with the condition of course, as it depends on the organs affected. Anaphylaxis is common in these patients as their immune system is so overactive and easily triggered. For more information about this complicated disease please reach out to me.

Let’s move on to talk about Mast cell activation syndrome/disorder.

This group of patients generally has over-active mast cells. So these cells are super sensitive, and are turned on by things that they shouldn’t be. The list of triggers is different for everyone, but some common triggers are heat, cold, stress, sunlight, chemicals, food additives, foods high in histamines and the list goes on.

Reactions can occur in different systems of the body, either one system, or multiple systems at the same time. Skin rashes, stomach problems, bone pain, heart changes are just some of the symptoms.

In our case Miss 4 gets flushed, rashy cheeks, all over body rashes, asthma symptoms, bone pain, excessive sweating, stomach pain, nausea, vomiting, diarrhoea, hay fever symptoms, irritability and more. More things basically trigger her mast cells than I could list and then they send signals to her body that there is an invader and it should protect itself. Her immune system goes into overdrive and the symptoms appear.

So how is it diagnosed?

Blood tests and biopsies are possible but often inconclusive. They need to be done during a reactive period. Another way of diagnosing is to medicate the person with something to stabilise their mast cells and see if their condition improves. It can take a long time to get a diagnosis, and there are very few doctors who know enough about this to do so.

How is it treated?

Patients are generally given a cocktail of medications to calm their mast cells down and threat their symptoms. A lot of these patients carry EpiPens as they are at risk of anaphylaxis. They then take a combination of types of antihistamines and mast cell stabilisers daily. Adjustments to diet and environment can help these patients also.

This is a relatively new area of medicine that is not yet well understood. Currently there is research being done mainly overseas into these conditions. Awareness is very low, and these people are often misunderstood, even by medical professionals, which can place them in real danger of becoming very unwell.

Please reach out if you would like more information. If you suspect your child may have MCAD I can put you in touch with the best doctors to explore the possibility properly.

InfoPoint- Coeliac Disease

Coeliac Disease is an autoimmune condition where the body reacts to gluten causing damage in the small bowel. Often sufferers are unaware they have the disease for a long time. It is not technically an allergy, as the mechanisms are different, but it results in dietary restriction hence is something I wanted to include.

Exposure to gluten damages the villi in the small bowel. Villi are basically small finger shaped ripples in the bowel surface where nutrients are absorbed. In people with coeliac disease these villi become damaged and flatten, losing their large surface area, resulting in the body not absorbing the nutrients it needs.

It is often this malabsorption that leads to diagnosis, most commonly through low iron levels or weight loss associated with poor nutrition.

A lot of Coeliacs do not have any outward symptoms of the disease, but some do suffer nausea, stomach pain and skin rashes.

So how is Coeliac Disease diagnosed?

Diagnosis is by a gastroenterologist doing a biopsy of the small bowel. There are blood tests and gene tests that are indicators but biopsy is the definitive tool.

How is Coeliac Disease treated?

There is no cure or medication for Coeliac Disease. The treatment is a strict gluten free diet for life. This means not even a crumb or a trace. There is a lot of research being done currently around this disease in the hopes of a vaccine that will help people diagnosed.

With the abundance of gluten free products on the market now, and the ever-increasing awareness of the disease and the idea of being gluten free, it is easier than ever before to find alternatives and places to eat out. However vigilance is always necessary to ensure there is not trace of gluten in anything eaten.

 

For more information reach out!

InfoPoint- EoE

Well, it is time for this aussie allergy mum to tackle the topic of eosinophilic oesophagitus (EoE), a rare but horrible disease. It belongs to a group of allergic conditions known as eosinophilic gastrointestinal disorders (EGIDs).

Miss 4 is suspected of having this condition, however it is as yet unconfirmed.

Eosinophils are a type of white blood cell, associated with allergic conditions. They are present in larger than normal amounts in conditions like hayfever and asthma.

For a group of people out there, an ever-growing group, these cells are turning up in places they shouldn’t be, or in amounts that shouldn’t be. And this causes awful symptoms and reactions.

 

EoE occurs when these cells are in the oesophagus. The inflammation they create causes symptoms such as feeling like food is stuck, choking, pain like heartburn and severe acid reflux. Symptoms can also include nausea and vomiting.

Other EGIDs occur in different parts of the gut, and again are caused by too many eosinophils. They are characterised by pain, nausea, vomiting and diarrhoea generally.

 

So how are these diseases diagnosed?

The official diagnosis is by a biopsy of the effected area, done by scope. The specialist who diagnoses and treats the condition is a gastroenterologist. Often they work in conjunction with an immunologist due to the allergic nature of the disease and the need to try and identify triggers. (At this point we have made the decision not to go ahead with biopsies for Miss 4 as she is currently medicated the same way she would be if she had EoE anyway. Once she is a little older we will re-evaluate this with her doctors.)

 

So let’s talk about what triggers a reaction in these diseases…

For a large group, symptoms are triggered by allergies, either environmental or food. Environmental allergens include pollens and molds and can be hard to identify and very hard to avoid. Food allergens are commonly triggers, and a process to identify the foods at fault is undertaken.

 

So let’s talk about treatment…

Treatment falls under two general categories

  1. medication- this is generally oral medication used to decrease inflammation and acid, and help control symptoms
  2. food elimination- this is a process of trying to work out and then avoid the foods that trigger reactions, and then follow up biopsies to see if the condition has eased

 

Until recently these conditions were unheard of and rarely diagnosed. But incidence is on the rise and a great deal of research is currently being undertaken into the mechanisms of the disease and treatment options.

 

Here at Aussie Allergy Mum, we hope that very soon doctors will understand this condition much better and be able to improve the life of these patients considerably with this knowledge.

 

Please reach out for more info!

InfoPoint- Breastfeeding and Allergies

My breastfeeding journey

Breastfeeding and food allergies… I feel like it is potential for a shit storm. Two controversial, divisive, passion-filled topics in a wicked combination.

Let me start by saying, yes I did breastfeed my children. Both girls were basically exclusively breastfed for around 10 months.

My eldest daughter and I had a super rocky start, with poor weight gain, cracked nipples, mastitis, pumping and all of that awesome biz. But we did overcome and go on to successfully feed, until she got some teeth and decided biting was much more fun. Despite doing everything everyone suggested we couldn’t recover. And I was back at work trying to pump and feed so I simply continued to pump and she drank expressed milk until she was 14 months old.

My youngest daughter was a champ feeder, and I had much more of an idea what I was doing. But from day 1 she screamed and projectile vomited, was covered in rashes, never slept and obviously something was wrong. I continued to feed her on a restricted diet as we started to discover the world of allergies and FPIES (food protein induced enterocolitis syndrome). Sometimes the boob was the only thing that would settle the screaming, it was kind of our lifeline.

As the array of foods she was allergic to became apparent, I restricted my diet further and further to try and help her. But at 10 months I finally accepted that she was not improving, and we moved her to a medical formula, which we had trialled in small amounts and appeared to be safe.

It was the most horrific 5 days of my life. Sore, swollen boobs, pumping between the screaming, meanwhile she was only drinking enough to stay hydrated and heaving at the taste. To be honest, the Neocate LCP smelled like rotten potatoes.

After 5 days of battles, she gave in and started to drink proper volumes. My boobs dried up. And within two weeks she was a different baby. Sleeping better, more settled and I knew we had made the right call.

By the time I stopped feeding I weighed 47kgs, very unhealthy for someone almost 170cms tall. I was weak and sick and tired and constantly stressed. I was broken.

Miss 4 still drinks the same formula to this day. It is complete nutrition, which takes away the stress of ensuring her restrictions still cater to her growing nutritional needs. The formula has been the staple through some extremely rough times of weight loss and complete inability to eat.

So now you know our story, here is some info about breastfeeding and allergies.

There are two distinct groups of allergy babies, when compared by breastfeeding. Some babies with allergies tolerate breast milk well. Their mother can eat their allergens with no sign of it affecting the child. These allergies are generally discovered when the child begins solid food and then reacts, either with anaphylaxis, mild allergic symptoms or profuse vomiting in the case of FPIES.

Then there is a group like my little lady, who react to proteins passed through breast milk. Some mothers eliminate foods with great improvement, but for more difficult cases medical formula is a great choice.

Before having my second child I was a staunch believer in “breast is best”. One of the biggest things I have learnt out of my journey is that happy mums and babies are the best, no matter the style of feeding.

And everyday I am thankful for the formula that keeps my beautiful girl growing.

 

(If you are struggling with feeding and want support, or are considering or undertaking an elimination diet and need advice, I would love to be there for you. Go to www.aussieallergymum.com/coaching/ and I will contact you to see how I can help!)

InfoPoint- FPIES

Here at Aussie Allergy Mum we have an intimate knowledge of this relatively unknown and rare form of food allergy. Food protein induced enterocolitis syndrome or FPIES for short, is an allergic condition where children (and some adults) eat a food, and then 2-8 hours later they begin vomiting, and continue vomiting sometimes until they go into shock and become unconscious.

Until approximately 5 years ago, FPIES was relatively unknown and rarely diagnosed. But I often hear parents describe the reactions, and tell stories of trips to hospital and doctors putting it down to gastro. In fact, for most parents I talk to, the road to diagnosis is a very rocky and frustrating one.

Most GPs and emergency doctors are not familiar with FPIES. But the rate of diagnosis is rapidly increasing and awareness is growing. As FPIES parents, it often feels like you are constantly explaining FPIES to people.

People assume that because the reaction is not instant and characterised by the throat swelling closed, that therefore this somehow diminishes the severity and risks of a reaction, and in turn the anxiety of parents.

But FPIES reactions can be life-threatening.

The other difficult part of the FPIES journey is that traditional methods of allergy testing such as skin-prick testing and blood testing are not reliable for FPIES. Due to the different nature of the reaction within the body, these tests are generally all negative, even to the foods that cause the most violent reactions. The only way to know if a food is going to cause a reaction is for the child to try it and see what happens.

Let’s just think about that for a second!

No reliable tests, every food you try could land your child in hospital. No wonder the quality of life of parents with children with FPIES is so negatively affected by this disease!

The good news about FPIES is that in most cases, children only have 1 trigger food. Most outgrow their triggers and begin to tolerate the foods they were once allergic to by the time they head to school age 5. This is not always the case however, and some of these children go on to develop allergies, intolerances and other allergic conditions that mean their journey does not end at 5.

It has been over a year now since we have seen a severe FPIES reaction from Miss 4, mainly through careful management. She has outgrown some of her most severe triggers, but the hard part is, to know if they have outgrown them you have to try them! (This is normally done in hospital under strict medical supervision.)

I speak daily to hundreds of parents of children with FPIES. There are great internet support groups available. It is not so rare as once thought. But awareness is low and this makes this difficult disease more isolating. The more people who know, the more people that have some understanding, the easier it is for parents to find support and encouragement!

If you have child with FPIES and need support, reach out!

If you have read this info and think, hey I recognise those symptoms, reach out!

And if you know someone with a child with FPIES, reach out to them, let them know you read about it. Ask them how you can help to keep their child safe and included next time you catch up. It really does mean the world to us!

Cookie Recipe

Who doesn’t like cookies right? Especially ones with choc chips!

The whole time I was doing the 30 Days to Healthy Living Program I knew that I couldn’t do life without the occasional cookie. So I set about researching and really weighing up ingredients to decide how I could enjoy a cookie treat without trading in my commitment to healthy eating.

The recipe below is my balancing scales. Wholefood ingredients, a few options to substitute if needing or wanting, but super delicious. They are egg free, and can be made to be gluten free, dairy free and nut free as required. They have very little sugar, but that also can be swapped out as well.

They got the tick of approval from my bread loving, allergy free, 6 year old too!

Recipe

200g spelt flour or gluten free flour if needed

30g of almond meal or LSA (linseed, sunflower and almond mix) or any other nut meal, or even more flour

1/2 tsp bi-carb

50g brown sugar or honey or maple syrup

125g room temp butter or safe oil

1/4 tsp salt

1 tsp vanilla paste or seeds of half a vanilla bean

Dark choc chips (dairy free if needed)

Method

  1. Place all ingredients in processor except chic chips and mix until coming together (TM 15 sec/sp 4)
  2. Add choc chips and and mix through (TM 5 sec/ reverse sp 3)
  3. Bake for 10-15 mins at 170 C

So simple but so good. Hope you like them!

Let’s Talk Baby’s First Foods

This week the Canadian government changed its stance on the right first foods for babies. They took their time, but they are also far ahead of the pack.

Whilst many people have long questioned the conventional iron-fortified rice cereal as the best option for a first food, the governments and health bodies of Australia, Canada and the United States have stood firm on old advice.

This week Canada suggested meat and eggs might be better. And a collective sigh of relief from educated people all over the world was heard. Finally some sense!

So let’s talk about baby’s first foods. Below I will tell you why I think meat and eggs are a great choice, and why I am leaving rice cereal behind forever.

To start this conversation we need to talk about iron. It is well understood that after 6 months of age, the iron stores babies receive from the mother before birth start to wane. Breastfed babies are therefore in need of iron, and formula fed babies receive some through their formula, but generally not enough that is easily used by the body.

The answer has always been to start babies on iron-fortified rice cereal. The problem is, rice cereal really has very little nutritional value. Grains are difficult for babies to digest as the enzyme profile that they have within their gut is more suited to breast milk than grains until around 12 months of age. The iron is added to the cereal, which is not consumed alongside vitamins that help with iron absorption. Basically the idea is great, but the digestion does not live up to the hype.

So what then? How do we ensure our babies are getting the iron they need?

Well this is where the meat and egg bit comes in.

Meat is naturally rich in haem iron and well digested by the gut. It is simple to prepare as either a puree or baby-led weaning style meal, depending on your style. Either cook and puree with some liquid, or just grill a cutlet and let them loose. Either way they will get the iron they need, complete with other nutrients.

What about egg? Egg is rich in iron, as well as choline and omega 3’s. If you want to talk about superfoods, then the humble egg just has to be on your plate. Omega 3’s are essential for cognitive function, brain development and eye health, all things that develop rapidly in the first 12 months of life. Egg is equally as easy to prepare in a myriad of ways to entice your little one.

But before we finish talking about egg we need to talk allergies. Egg is fast growing into the most common allergen for Aussie kids. There is some speculation that years of being told to delay children eating eggs until after they are 1 year old may have somehow contributed to this. Whatever the cause, the latest research says that introducing foods earlier may be better.
In children with family history of food allergies, it is suggested the earlier the better, but never before 17 weeks old for any solid food. (If you or your family have a history of food allergies, please consult your healthcare professional before starting solid food to get their best advice. Or chat to me one-on-one to discuss your unique personal situation in detail.)

So, throw out convention and Mum’s advice people. And give the humble meat and eggs a go as a first food for your baby. Nutritionally complete and easy to prepare, they beat the old rice cereal hands down, as a great way to kick of the wondrous world of solid food for your child.

All things hemp

Today is an historic day. A day I have been waiting for since I discovered hemp! No I don’t mean the stuff you smoked at uni, I mean the super amazing hemp seed.

For years I have been watching mum’s in the US talk about the wonders of hemp as an alternative for their allergy children. Most frequently, the posts are about the milk, which is widely commercially available in the US.

When we were searching for safe foods for Miss 4 I often thought about it as a possibility. But a quick google revealed that it was not legal to be sold for human consumption in Australia. You see, we are more than a little backwards with approving things like this. I could see though that there was a growing movement for having it legalised, and also that you could buy hemp products in Australia which were food grade but legally had to be marketed only as beauty products.

I bought some to use on my skin, and then after much discussion between myself and Miss 4’s Dad, we agreed to try cooking with the oil to see if Miss 4 would tolerate it. She did! And finally we had an oil to cook with. I was also able to make her own safe lip balm by mixing it with beeswax.  She thought she was so cool.

The downside was that it was not widely available obviously. And the food products like milk were not available at all.

I am so happy to say though, that everything changed today! Today it became legal to sell hemp products for human consumption in Australia.

I am super excited, because hemp is a truly wonderful food with amazing health benefits. It is probably a superfood really, but I hate the fad nature of that tag. It is something anyone can easily try out. At the moment it comes as hemp hearts, hemp oil and hemp protein commercially.

I will quickly tell you how I use each.

Hearts- soak in water, blend and then put it through cloth to make hemp milk (just like a nut or seed milk), then you can use the pulp in cooking

Oil- use for dressings and low heat cooking (it has a low smoke point and loses some health benefits once heated)

Protein- use in smoothies, shakes, protein balls

Now to the health benefits

  • it is a complete protein featuring all the essential amino acids needed by the body for energy production
  • high in calcium, iron, vitamin A, antioxidants plus other essential minerals
  • high in fibre which helps the good bugs rule your gut
  • high in omega 3s which are vital for brain health, cognitive function and eye health

When I mention hemp as a food to people they often laugh. They think of marijuana and the effects of THC. But hemp as we are talking about has no THC. What it does have though, is an amazing nutritional profile, lots of possible uses, and is potentially a safe food for kids with lots of allergies, like it is for my Miss 4.

And that is why I am excited!

 

Permission to spend money on yourself

If you are like me, and most mum’s I know, we don’t hesitate to spend money on our kids. In fact, it basically feels like money slips through our hands constantly to pay for the things of their life.

But pretty much every mum I know, struggles to spend money on themselves.

In the land of two incomes, big mortgages and constant financial stress, the guilt of even thinking about spending money on ourselves is too much. We sacrifice what we need to pay the bills, and give our kids the best life we can.

What we fail to realise though, is that tired, stressed, overwhelmed parents, who have lost touch with themselves, and forgotten how to care for themselves, rub off on their kids.

I want to tell you right now, that spending money on yourself is ok! More than ok actually, it is good. It models self-care to our children, and fills our cup so we can continue to unwaveringly care for our families to the best of our ability.

Don’t get me wrong, I am not say spending money is the way to fill you proverbial cup. What I am saying is that it is ok to take time for ourselves, to get a hair cut, to buy some makeup, to put the kids in crèche and go to the gym, or to have a night out every now and then.

Unfortunately, pretty much everything above costs money. And the excuse of no money, other financial priorities etc, is the most common one mum’s use to explain why they cannot do one or more of those things.

So I have a radical idea. One that can help remove the financial barrier.

Set up a fund to spend on yourself! Whoa, shock horror, this woman is crazy!!!

I promise I am not.

Because you work hard, outside the home, in the home, on the home, and you deserve to have something for yourself. Actually, you owe it to yourself and your family to take some time to yourself.

My idea is to put aside a small amount each week, to use on yourself, or save until it is a larger amount and then use on yourself. Not on the hubby or wife, not on your kids or the groceries, ON YOU!

You can do cash if that works for you, or a separate account if that is better. Oh and I am not suggesting the other half miss out, this is something both partners should do separately in whichever way works best for the individual. Work out an amount and put it somewhere separate. Then use it to spoil yourself!

We cannot care for others if we do not first care for ourselves. We risk our mental health if we elevate the needs of others above our own. We risk our physical health if we elevate the needs of others above our own. It is ok to be selfish for just a little moment sometimes, so that we can love and serve our families better in every other moment.

For years I put everyone else first. But now, I have learned to take a little time and money for me. And as a result I am happier, more fulfilled and more plugged into my little family than ever before.

If you need to chat about how I did it, or need to bounce ideas off someone, I would love to be that person for you. Reach out!