It’s summer so there have been a lot of barbecues. And I love a homemade burger. I make the patties myself in our scotpak rahim family tradition with some cumin and coriander thrown in.
I’ve never added egg or breadcrumbs for binding so I’m happy that this is something that doesn’t have to change for my gluten free adventure. On the scale I’m somewhere around gluten sensitivity and gluten intolerance.
I have my patties ready. All that’s missing is the soft, light roll to put the burger in.
Well, I also have IBS and am following the low FODMAP diet. Almonds are on my exclusion list too. As are a whole bunch of seemingly unrelated foods including most fruits, some veg and most grains.
So on Wednesday I had another look for gluten free bread. And I found some rolls. Excitement was building as I reached out and picked up the packet. And squeezed.
I was so happy! These were light and soft. And they were part baked so I could finish them off in the oven at home and have warm rolls. Yes!
So with anticipation, and a dose of “don’t get your hopes up” I read the ingredients (in dutch). No potato. Score!
Wait, what’s that I see? Apple fibre. Are you kidding me? I have a very bad reaction to apple and it’s definitely on my list to never eat again in my life.
Pants.
So it’s time to face facts. I can’t take the easy way out and buy ready made. I need to get busy in the kitchen and make stuff myself.
It’s weird that I was even thinking about buying because I love to bake. I guess when I heard gluten free I just chucked baking into the basement of my mind and locked the door.
Now I’m checking recipes against the FODMAP list to see what to try first. I’ve seen a choc chip cookie recipe with chickpea flour. I can have limited amounts of chickpea, which is good because it will stop me eating the whole batch. One a day will be my limit.
Am I jumping on a fad? No. And I’d be really late to the party if I was.
But let me give some context.
Since the age of about 14, I’ve had monthly episodes of IBS. Relatively mild and manageable. Well, ok, it was disruptive and painful but I put up with it.
It was manageable until I had my eldest, F. During my emergency c section I got a lovely bonus gift of endometriosis. Of which a side effect and symptom is IBS. So my IBS spiralled and grew and got so bad that I had pain and discomfort everyday, all day.
And like any health conscious, aware, parent of a sick kid, I went and got it checked out straight away. As soon as it became unbearable. Not a moment later.
But there isn’t a cure for IBS. And whatever the original cause, the best way to help reduce symptoms is to change your diet. So I took on board my doctors advice to eat crudites (yes, that is really all he said). I started googling IBS and even joined and IBS support group. Wow! those people really suffer! Their stories scared me away.
I knew I needed to make a big change and I needed the head space for it too.
So as a health conscious, aware, parent of a sick kid, about 2 years later I got there. I needed to eliminate foods from my diet.
So last October I started the FODMAP diet. My understanding of it is this: basically you are avoiding foods with excess dietary sugars that can ferment in the gut and cause bloating, cramps, a spastic colon, inflammation …….
It took me a long time to get my head around it: give up certain foods, possibly for life. For the sake of my health.
It should have been a no brainer. Don’t eat that, feel good.
It seems like a small change but it’s massive. It affects the whole family, how we do the shopping, how many meals I need to cook each day. And I’m not even going to mention going out to eat.
And I can’t remember all the foods I should avoid so I use this app. But that’s for another post.
This post is about gluten free food and the surprising amount of potato.
Wheat is a big NO NO for IBS. So I had cut that out. And I found an alternative, Spelt. It’s a relative of wheat and hasn’t been genetically modified the way wheat has been.
I was eating limited amounts of spelt bread and doing ok with it.
100% spelt. Check the ingredients people! Marketing people lie. “look! buy this spelt bread, it’s so healthy!” they say and then on the back you see “made with 50% wheat, 10% spelt flour…”
But my nutritionist asked me to go gluten free for 3 weeks. Why? Because although I may not notice any problems with spelt, the gluten in it could still be doing damage to my irritated and inflamed gut.
So I did it. And I felt great. Really good. A real uplift in my mental health too.
Then I had some wheat and spelt. And it hurt. A lot.
And that just sucks.
So, I decided to check out the gluten free offerings. I love rice, LOVE IT. But sometimes you just want some toast. I was missing “bread” type foods.
And that’s when I found the potato conspiracy. It’s in EVERYTHING.
Those crackers look so good. A mix of potato, rice and a million other things. It looks good. But don’t be fooled. They are solid stodge. Heavy and with this really weird texture that makes me think of potato dust.
Potato dust
When I was a kid I worked in my parents corner shop and bagged potatoes. Took potatoes from a massive sack and bagged them up into 5lb bags. I loved that task but my nose would fill with that potato smell of good potatoes with a coating of mud – they stay fresher for longer that way.
But I don’t want to eat potato dust.
And the bread. Oh it looked so promising. And although it felt dense, I didn’t mind. I like slightly dense bread. It’s like you can feel the wholesomeness of it. All those whole grains.
So I toasted some gluten free potato bread. Spread my salted butter (oh Clover, I miss you. Did you know that in Holland everyone uses unsalted? yuck)
And…. potato dust. Heavy. No crunch.
The texture is just awful. It’s a bait and switch. It’s like they put all the effort into making it look right and forgot all about the taste and texture.
So I’ll just have to content myself with rice crackers and give my gut time to heal. I know this is going to take months, possibly more than a year. And then maybe I’ll be able to have spelt.
So for all those coeliacs out there, like my sister S and fellow blogger C, I’m starting to get what life is like for you. Gluten is everywhere. Like those damn potatoes.
I love colouring. I always joined in when F was little and probably did more colouring than she did. I definitely do more than S.
Recenty my sister in law bought me a Mandala colouring book and I’m hooked. I have thin pens and thick pens and have reserved a couple of pages for the girls to colour (because of course if I am colouring, they want to).
i love using the thin pens the most. It takes more concentration and the colours just seem to be more sharp, jewel like.
its very soothing and this daily practice has been like a kind of meditation for me: it builds my reserves of resilience.
But today as I colour I feel restless. Some words need to be spoken. Yet I feel that my life while be forever changed and I’m not sure I am ready for that. But I don’t the know how much longer I can hold them in.
But these words I can say: we took S to the hospital today. She fell and hurt her hand. No amounts of bruises and scrapes stop her, and she reminds me of my sister Y, fearless and ever on an adventure. But today she cried so. She fell asleep in my arms and on waking, cried some more.
It was a quick visit and it looks like she bruised it. No broken bones they said. Let’s hope that’s true.
I caught myself comparing this visit to all our other visits with F. Those visits are always so complex but today I don’t want to compare. I am going to try and enjoy that whole process took under an hour, including the 20 min drive each way.
It was a breeze. So thank you God for the ease and speed today.
Ever heard that phrase “oh, that’ll be more than my jobs worth”? Well, if you are British you might have. It’s a joke about the types of unhelpful people you can run into in heavily bureaucratic environments.
Oh, I could help you but it’d be more than my jobs worth to do that
That’s the feeling I get when I call the pharmacy to order more medicines for F. Not with everyone at the pharmacy, just the one lady.
You see we have a running repeat prescription that covers the whole year. At the beginning of every year, F’s Nephrologist makes out the prescriptions for all her medicines and sends them to the pharmacy. Every month, we tell them what we need and they deduct it from the year total. Simple, I thought.
Yet this one lady gives us hassle.
Every time we call.
She:
“Do you have a repeat prescription for this?”
Me:
“Yes. We have a prescription to cover the year….. etc….” then in my head “It’s in your SYSTEM!!!”
Every time we go in to collect.
She:
“Do you have a repeat prescription for this?”
Me:
“Yes. We have a prescription to cover the year….. etc….”
Then she grudgingly hands it over.
Now I know she has protocols to follow. I know how strict the rules and regulations in the pharmaceutical industry are (I worked in exports to the Middle East and boy, the hoops you need to go through to get that job done!) But no one else at the pharmacy does this. They all know we have a year prescription.
But our daughter has been getting medicine from their for almost 8 years. And still she interrogates us. We have never not had a prescription.
I don’t think it is personal. Although, when you are standing in front of her steely, suspicious gaze in front of an entire pharmacy full of people, and she starts her interrogation, it sure feels personal.
So what kinds of drugs are we talking about here? With a really high street value? You’d think so, but no.
Sodium chloride (salty water, but special salty water)
Potassium chloride (different kind of salty water)
potassium citrate (I don’t know, but it helps her kidneys from turning to stone)
Nexium (to help with acid reflux.)
Indomethacin liquid (used in treating eye infections for normal people but it’s the main magic drug for Bartters peeps)
Vitamin D
So dear lady at the pharmacy, I do’t know why you give me such hassle. I don’t know what you think I am doing with this stuff. I couldn’t administer the lethal injection with the potassium chloride we get (I checked. Say what? Yes I know, it’s freaky. I was curious and wanted to know if we had dangerous quantities in the house and I had some time on my hands).
Dear lady at the pharmacy, please stop. Most days I can shrug it off but we have enough crap to deal with and traumas that we don’t need you to hassle us over something so meaningless.
So just recently, I made my friend, who just finished her chemo for great cancer, cry.
And for good measure, I made myself cry too.
You see, we are working on a project together about compassion and hugs. Given our respective painful pasts with illness, we think there is too little in the world and we want there to be more.
She couldn’t see how others would relate to her so I told her what I saw (and yes, the tears are coming again).
She had a life, with her family and friends and then cancer came along, threatening it all. Because cancer can kill. We don’t really say that anymore but it’s true.
Death, that constant companion to us all but who we ignore like that really smelly fart in an elevator (we all know it’s there, it’s unpleasant but we all pretend it doesn’t exist).
A cancer diagnosis brings death back into the picture and we realise
Maybe I don’t get to keep this life that I have.
As much as it brings tears to my eyes to type this, and all of a sudden my nose is really snotty, I need to say this
we don’t know what we are going to have tomorrow. And we can’t do anything about the past. We can only change now. So whether you are doing the laundry, paying bills, or are on holiday
Enjoy it!
Find something you like in the activity you are doing, no matter how small, and focus on that. Grow it and enjoy it.
I promised myself that I would never do this. But I did. I knew it would hurt my child but I did it anyway.
I let two adults hold her down while she was kicking and screaming while another performed a medical procedure. And one of the adults holding her down was me.
But how did we get here? How did we get to this sunny day, full of hope of the lightheartedness of sumer, but doused with an icy blast to my heart like the arctic ocean has crashed down on me?
It’s a long story but I will try to keep it short.
She has developed a fear and trauma about having her mickey button changed. She’s been through EMDR to deal with the trauma. She and her psychologist made a plan to deal with some of the scary things:
Seeing the whole in her body where the mickey sits. I’m not surprised she is scared, it gives me the heebee geebees just thinking about it. So what’s the plan? She gets to watch the mine craft films on youtube that she loves
Seeing all the medical equipment laid out makes it feel like an operation. So we would keep that covered.
Everything was arranged. The psychologist was there. She had picked out her present that she would receive after her new mickey would be replaced.
Then she woke up this morning and it all went to hell. Her first event of fear and anger was pretty bad. So upset she started vomiting. I was taken back to the last time her mickey button exploded and I had to be a tough mama.
How do you get through to your child when she is out of her mind with fear? You can only tell them that you hear them. Over and over until they calm down.
The major event was at the hospital. We had agreed that J and I would not be in the room. F wanted it to just be the psychologist and the nurse. It was time and then she went wild. I can’t even call it a tantrum because it wasn’t. It was so much worse. It was a frightened girl who would do anything to make sure that she could day no.
I wholeheartedly believe that she should be heard and that we should take a “no” from a child seriously. But without her treatment, she would die.
And her treatment isn’t nice. Half the discomfort she feels comes from her medicines. And we can’t afford to have her refuse treatment. Ever.
If I listened to her no today, what would I do when she needs an IV? An IV placement is painful and she has really thin veins so it can take 30 minutes or more to secure one. 30 minutes os someone poking a needle in her. What if she says no then?
And her IVs always need to have potassium. That burns. What if she refuses that? Her potassium levels can drop so quickly that she could have a heart attack. It may seem far fetched but sadly we lost someone in the Bartters & Gitelmans community this way about a month ago.
With her condition, when she needs an IV, it means that she is seriously ill and needs it right away. Not when she has calmed down. Not later. No time for discussion. Now.
If I listen to her “no” now, it opens the door to her saying no more often. And we can’t do this. I can’t do this fighting every time.
I can’t let her say no. It’s either take the treatment or get life threateningly ill really quickly. And then give her the treatment when she becomes unconscious. And providing it’s not too late, maybe her kidneys won’t get damaged. Maybe she won’t die.
So that’s how I came to be holding her down on the hospital bed. Her arms being held by me, her legs by another nurse. And a third nurse changing her mickey button.
Her father carried her to her next appointment (it never stops with a chronically ill child). We bought something for her to eat along the way. She smiled eventually.
We will follow up with the psychologist later. She had never seen anything like this in her entire career. The strength of resistance. But we will regroup and look at how we can support F so that it isn’t so traumatic next time.
But I feel like crap. I want to eat bread. Even though I’m on a 3 week gluten free diet I want to scoff bread there’s a wheat famine approaching. But, given the very real medical reasons behind my gluten free diet, that would be like bashing my head with a sledgehammer.
So why did I do it? Why did I choose to be the one in the room with her? I know that J would have done it. But I just knew that I could get her to relax her stomach muscles. You see, she can scream, kick and relax her muscles at the same time. I don’t know how she does it, but she can. You see, it’s impossible to put a mickey into the whole in the stomach if your muscles are tense. We know, that’s one of the chapters of this story.
And she did listen. Even through the screaming. Even through the kicking. She listened and relaxed her abdomen for the change.
I just hope that she really heard me when I said
“I didn’t want to hurt you. But you need this medicine. Your illness sucks and I wish I wold change it but I can’t.”
Oh man, today it sucks to be a mum. Lord, help me please.
amber rahim 