My Gluten Story
Instead of Part 3 of the Dexcom G4 instalment, which I’ll do soon, I want to tell a different story. First some facts.
Celiac (as I prefer to spell it, even though I’m in Australia) or Coeliac or Celiac Sprue is an autoimmune condition that attacks the small intestine in response to eating gluten, in some people. Antibodies to gliadin form and can cause all sorts of symptoms. Gliadin is a prolamin (gluten protein) found in common grains like wheat, barley and rye. Celiac leads to vilius atrophy – the shortening and flattening of the villi of the small intestine. Some people get no symptoms, others can get a range of symptoms that could fill a page.
Apart from possible malabsorption of vital nutrients, anaemia and more, untreated Celiac disease is associated with an increased risk of both adenocarcinoma (small intestine cancer) and lymphoma of the small bowel (enteropathy-associated T-cell lymphoma or EATL). Reason enough to take notice of symptoms and for strict adherence to a gluten-free diet.
Google search if you want to know more. Celiac isn’t a wheat or gluten allergy. It’s an autoimmune/antibody reaction, which you have for life.
Celiac is 5 times more prevalent in people with Type 1 Diabetes than in the rest of the population. I’m well aware of its existence and had a girlfriend many years back, who was diagnosed when we were in our 20s.
So here’s my story…
I was very happy to say goodbye to 2012. It was one of the most stressful years of my life. I finally sold my house, downsized, moved in October 2012. Almost from the second I’d unpacked and thought to myself that I could finally breathe, I started getting belly cramps and nausea.
The first couple of days, I thought I had some kind of bug, something like giardia – maybe the water was different in this place and I hadn’t set up my water filter yet, or I’d got infected another way. Yet, I didn’t have all the typical giardia symptoms. I didn’t think much about the cause, thinking it would resolve.
A week later, it hadn’t resolved, yet it seemed familiar. I’d had something similar several times before and a course of Flagyl sometimes seemed to do the trick, sometimes it didn’t and the doctor would give me a course of something else… and I’d eat very simply and things seemed to resolve. I’ve just now remembered about several stool tests I’ve had, when I’ve had similar symptoms, none of which showed anything at all, which seemed to surprise the doctor at the time. I’ve also been bloated after meals, but not so I’d say it was anything I’d worry about.
This time wasn’t much different. I took a course of Flagyl, and it seemed to resolve. What I naturally do when I feel off is to keep what I eat to very low carb so as not to encourage any further bacteria or whatever was causing this. I’d stick to clear teas, eggs, broths, chicken, fish and fresh vegetables. Nothing complicated. And yes, I was feeling a bit better.
One evening, however, I had nothing in my fridge and I was in a hurry, so I stopped at a well known burger place on the way home for a rare treat. Hey, I was feeling a bit better by that stage and figured my belly could handle it.
Oh my, how wrong I was! But wait… it’s the same thing I order every time I go there for the last million years! What was suddenly wrong with what I’d just eaten, that was never wrong before?
Doubled over, with belly cramps a few hours later, I resolved that it may have been the last time I would eat there for quite a while.
It took another a day and a half to feel better, so then a day or so later, I went back to my regular food and wham, there it was again. So I was then more than convinced it was something I was eating. Does a bug come and go at will and randomly? That didn’t make sense, although I guess it’s not unheard of.
When I thought about what I’d eaten over the past several weeks, and more importantly, what I hadn’t eaten on the days I felt I was improving, only one thing came to mind… grains, as in bread or crackers. Moving to a new house, still setting up the kitchen, getting fast food or making a sandwich because it’s quick and easy – not unheard of when unpacking is still a priority and tiredness is tripled.
A grain issue would certainly explain the burger I’d eaten.
I decided to go completely gluten free for a bit to see what happened.
Wow… I started to improve immediately. Several days later, I had almost no symptoms. At that point, I got the notion that it might be either Celiac or some other kind of gluten sensitivity. With that theory in mind, I kept to my gluten free.
My regular food intake used to be low-carb with the odd treat – cake or some crackers or some lovely bread, but that wouldn’t be what I’d have every day. I also don’t tend to eat much processed food – very little out of a packet, a jar or frozen, few sauces (all home made if there were any), with a few exceptions.
Strangely enough (the reason will be come apparent), in those early days, I tolerated ice cream and plain yoghurt very well. It was one of the few foods that didn’t make the nausea or belly cramps worse. In summer I have a small chocolate-coated vanilla ice cream that is 17 grams of carb. No idea how, but that’s nearly less than a slice of sour dough bread!
A few days into the second week of gluten free, my symptoms started again. By that time I was eating very simply and I wasn’t so convinced the problem was food. I was sure I was being very careful, so maybe what I have has nothing to do with gluten? Yes it does. No it doesn’t. I was continually having that kind of conversation with myself.
Yes, I was being careful about what I ate, but apparently not careful enough. During week 3 or 4 of gluten-free, I suddenly remembered that our beloved Vegemite (a spread we Aussies grew up with) wasn’t gluten-free! Duh! So that was it! I was eating Vegemite every few days! Very sadly, out went the Vegemite.
Since then, I’ve stuck to gluten-free, but dairy had increasingly became a problem. It might have been a problem before, but I didn’t notice. Now I’m noticing.
I’m not going to begin to tell you the foods I’m mourning for at the moment, many all-time favourite recipes included, not to mention favourite restaurants and cuisines.
Of course, during all this I went to the doctor several times, who wanted to give me all sorts of tests including some Celiac tests (after my saying that gluten free was helping). I had one anti-gliadin antibody test a couple of years ago, which was negative. I’m also told that at that time I was probably not eating enough gluten.
This time, by the time the doctor suggested it, I was completely gluten free. Testing would be like closing the door after the horse has bolted. The idea of going back to eating gluten just so a doctor can run a test – especially the amount of gluten that I’d have to be eating – is preposterous to me. No way, no how, am I going to go through what I went through in those first weeks. Now’s not the time. I haven’t described all the symptoms, but suffice to say, they were somewhat typical and made my life pretty awful.
I’m currently waiting for an appointment with a gastroenterologist – firstly to rule out anything more sinister, and secondly to discuss the gluten issue. If there are no other testing options, then I may have to go back on gluten foods. I believe there is genetic testing, which doesn’t require gluten, and of course an endoscopy, which does require me to eat gluten. Weeks of it, I’d imagine. Not sure all that is necessary. If being gluten free solves the problem, then it’s obvious I have to keep eating this way.
What I really have, I don’t know at this stage, or at least it’s not yet provable with medical testing. All I know is that not eating gluten (and dairy for now) is making it so much better. And when something sneaks in, like the BBQ chicken from Coles the other night (gluten in the seasoning on the skin, which I ate, and in the stuffing which I didn’t eat), I’m doubled over again.
If Celiac is what I have, then I’m told that the dairy issue is fairly common when people are first diagnosed (I didn’t know that until I read it the other day) and that for many it resolves after their gut heals fully. That can take 1-2 years or can be as short as six months. If it’s not Celiac, then I’ve developed something which resolves when not eating gluten or dairy. What could it be?
My belly still seems ultra-sensitive, but I’m about 95% improved at this point and 100% improved most days. There’s still the odd day when symptoms come back for a good few hours, and I can’t immediately work out what it is that has triggered them… but if I think long and hard enough, I usually find the answer. There’s a lot to learn about being strictly gluten-free and at the moment, I’m in kindergarten when it comes to all that.
I still have to clear out or separate gluten-containing foods in the house. Many on the Celiac forums, which I’ve jumped into recently, talk about cross-contamination, which I haven’t worried about much yet. I’m still coming to terms with all this.