This post Autoimmune, Intolerance or Allergy was originally written in 2015 when Bethany was 10yrs old. Nothings changed, she’s still Type 1 Diabetic, has Coeliac Disease and has since been diagnosed with high functioning Autism. I’ve now included a FREE print out for you to show family, friends and send into school if you have anyone who is struggling to see the difference or take your child’s diagnosis seriously.
My experience of peoples lack of understanding Autoimmune, Intolerance or Allergy differences
The topic of Autoimmune, Intolerance or Allergy can be quite a confusing one and I’m going to try to write this blog entry without being distracted by the scrumptious smells of a Gluten Free Bara Brith baking in the oven … it’s for the teachers at school, thank goodness I had the foresight to make the family a little loaf too!
Those ‘in the know’ will understand how irritating it can be for people to get it wrong and misunderstand what others can or can’t put into their mouths! Take a Diabetic drinking a small can of Coke or tucking into a packet of Jelly Babies. Hypo quick fix or why you’re diabetic in the first place? Yes, I have been asked if Bethany is T1D because I fed her too many sweets!
Take a dinner lady at school telling Bethany that the breadcrumb coated fish-finger is gluten free and won’t hurt her. Uneducated or ignorant of the damage it could cause? Wince at the sarcastic reply from a Preschool member of staff, supposed to be caring for a friends daughter, when she was reminded of the little girls severe allergy to wheat, soya and dairy … ‘Vegetables! can she eat those’?!
I have an invisible wet fish in my bag for such people, it used to come out quite often. In fact, I’ve become well known for it in my circle of friends. I imagine slapping them hard around the face with it. It’s terribly satisfying. That said, you don’t need an imaginary wet fish now, you can shove my FREE print out in their face instead!
What is an autoimmune condition?
The satirical cartoon below kind of sums things up quite nicely for me. In layman terms your body has waged war upon itself. Don’t be bitter about this, it didn’t do it on purpose, it just didn’t get the memo. There are lots of autoimmune conditions; under or over active thyroid, rheumatoid arthritis, psoriasis, and inflammatory bowel disease to name a few. For the purpose of this article I’m focusing on the two that affect my daughter.
Type 1 Diabetes – this occurs when the body’s defences go into overdrive, maybe they’ve recently been working overtime to combat a nasty cold, virus or common childhood disease such as chicken pox (this is one of many schools of thought). In most Type 1 Diabetics they are sadly predisposed to get Type 1 it’s normally just a matter of time.
However, there are other reasons why someone becomes Type 1 such as medical intervention regarding the pancreas. So if the time is right, and the bodies immune system decides it quite enjoyed that last battle to fight a common ailment, the antibodies army looks for another fight. Only this time, it focuses all the troops on the pancreas and in particular the poor village of beta cells who work hard all day and night to produce and regulate insulin.
The battle goes on for quite some time, months and sometimes even years, and the beta cells put up a damn good fight but eventually they are all destroyed resulting in Type 1 Diabetes. To continue to live, the diabetic has to administer their own insulin to mimic the fantastic job the village of Beta did. This is done by working out how much or how little insulin is need to get through each meal and physical activity. This is the new normal every day for the rest of their lives! This is an Autoimmune condition. I have written a more detailed post on Beth’s diagnosis if you’d like to find out more Type 1 Diabetes and us: diagnosis story.
Coeliac Disease – occurs in a similar way to Type 1 Diabetes in the fact that the immune army become restless and go looking for a fight, in Beth’s case I imagine her army to be quite a rowdy bunch because they didn’t waste much time between her Type 1 Diagnosis and the beginnings of her symptoms for Coeliac Disease, you can read more about that in my post Coeliac Disease and us; diagnosis onwards! This time the army turned it’s attention to something that was a foreign body – gluten.
Before the army turned up, the body had accepted gluten for what it was (a food protein) and had dealt with it in the same way it had dealt with all foods that entered into Beth’s gut. Once the army had turned up they didn’t like the look of gluten and there was a lot of it so they decided to call for back up! The back up arrives and once the antibody army is big enough they lay in wait for the next gluten invasion. Each time this happens there are casualties, sadly its not the gluten that takes the hit, the main casualty here is the lining of the gut which is the battlefield.
The gut has tiny little fleshy tentacle-type hairs called villi, their sole purpose; to reach out to passing food and extract all the goodness required for the body to thrive – I imagine them to look like a sea anemone! Sadly, battle after battle leaves these ‘hairs’ damaged and in cases of prolonged attacks they’ve all but disappeared! This means eventually, if undiagnosed, all food is passes through without nutrients being gathered. The result is that the body doesn’t thrive and grow as it should. This is also an Autoimmune condition.
What is an intolerance?
Back in 2015 when I first wrote this, I was leading a normal life in terms of diet, Bethany’s restrictions and conditions were alien to us having had no history of either in the family…but was that really true? In retrospect we had lots of aunts and grannies who suffered with digestive issues and complications in later life that could have been attributed to missed diagnosis.
Common food intolerance – In 2017 I had been struggling with terrible bloating, tummy pains and trips to the toilet were not pleasant. For years I had put my symptoms down to stress and anxiety. After being approached by a caring regular reader and doing a recommended home test kit*, it transpired that I may have had issues with quite a few common foods. Without seeking medical advice I cut out; dairy, eggs, potato, soya and bread. I was also marked as being potentially intolerant to peas too but as I hate these it wasn’t an issue cutting them out (or so I thought, pea protein pops up everywhere!). Over time I reintroduced the soya and bread, but to this day I cannot eat dairy, eggs or potato without seeing symptoms within 10-15 minutes.
*home intolerance test kits are not yet based on scientific evidence and can provide false positives as our guts can produce antibodies to all sorts of foods in order to aid digestion so for example you could have a poached eggs on toast the day before taking a test and your likely to show antibodies for egg in your blood. Advice from the NHS can be found on Autoimmune, Intolerance or Allergy, using this link and the best practice is to seek medical advice and better still start a food diary listing symptoms before doing so Allergy or Intolerance?
Secondary Lactose Intolerance – I’ve written a more detailed post about this; Coeliac Disease and links to Secondary Lactose Intolerance. Given Beth’s late Coeliac diagnosis it made it more likely that she’d have trouble digesting lactose which is the natural sugar found in dairy. To breakdown Lactose so that’s it’s digestible, the body needs an enzyme called lactase.
Now I’m a bit sketchy on the details as to why but Beth didn’t produce enough lactase so I’m going to make an educated guess and assume it’s because her gut was already damaged by the full scale antibodies v’s gluten battle and as a result this had a knock on effect with the production of lactase, sufficed to say, she didn’t do it for a while, at least not until we’d removed gluten from the battlefield and the the antibody army had retreated to base camp! The answer was to cut out dairy totally until the painful tummy aches and severe flatulence disappeared.
Long term/life long lactose intolerance, is another kettle of fish and to find out more I’d once again recommend this NHS link Allergy or Intolerance? if not treated with a total dairy ban prolonged contamination can lead to complications such as brittle bones and malnutrition.
What is an allergy?
This is a potentially lifelong condition and symptoms can be very severe when someone comes into contact with their allergen. Common allergens are nuts, wheat, dairy, pollen, insect stings, eggs, food colouring and fish but people can be allergic to all kinds of things, I have a member of our family who is allergic to certain metals among many other things.
The resulting reaction to a contamination is often immediate and sometimes severe, these severe reactions often result in the person having to carry around potentially life-saving epipens and other such medications to counteract the body going into hyperdrive producing armies of chemicals to combat the allergen.
I think my darling friend Emma Amoscato should have the final say on allergies as it is she who published her remarkably comprehensive book Living with Allergies: Practical Tips for All the Family. This is a book I read from cover to cover in one day, it’s fascinating and written with newbies to the allergy world in mind. In fact, I wrote a review about Emma’s book here Living with Allergies – book review. It covers all three areas and is perfect for family members who can’t seem to grasp the difference between the three conditions; Autoimmune, Intolerance or Allergy.
Needless to say all the above are life changing for those effected but none need to be life threatening or lead to long term damage or complications if managed carefully. So now you know the basics of differences between Autoimmune, Intolerance or Allergy – no wet fish slap for you!
A teenagers perspective…
Bethany is now a teenager and has an amazing talent for words and art, so if you’re interested in hearing about these issues from her point of view then head over to Beth’s Corner. You can also buy her limited edition art work too in Beth’s Corner Shop
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Want a FREE printable to help dispel any confusion?
I promised you a FREE printout to help others understand the difference between Autoimmune, Intolerance or Allergy conditions.
If you have a child in school you may find this really useful to start a conversation with key staff or add to the care plan.