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Celiac - A Living Hell

I feel I should share this story because there seems to be a stigma around being a celiac, and surprisingly enough, there is very little literature out there on this dread disease. Or rather, literature on how to COPE with it.

It's common knowledge that celiac disease is an autoimmune disease in which people cannot eat gluten. What is NOT known, however, are the multiple additions to that fact. It is not just about not eating bread and pasta. It's about not consuming any single thing that could contain gluten. It's about not consuming anything that has been made on the same counter top as something with gluten in it. It's about the toaster containing a bread crumb in it that may rub against your slice of gluten free bread and contaminating it. And about the myriad of other things that you wouldn't believe contain gluten, but do.

So how did it begin?

A few years back, I felt constantly ill. After months of struggling, I collapsed a few times, ending up in the ER at the hospital, where they took blood and did various tests. However, each time they told me it was all in my head, they couldn't find anything so there was nothing wrong with me. It was incredibly frustrating, and I began to think it WAS all in my head. But sure as nuts, my symptoms continued. I was tired, depressed, had constant pains in my abdomen, couldn't sleep at night, had brain fog to the point where I couldn't remember anything - sometimes not even the end of the sentence I had just started. Seriously.

I was eventually directed to an adrenal doctor, who did some invasive tests and then said without preamble - "You have celiac disease, Hashimoto's disease, you are anaemic and have low iron levels, your hormones are out of whack and you will have to take these pills for the rest of your life. Oh, and stay off fruit, bread and pasta."

I asked him why no fruit, and he answered, "With the Hashimoto's (thyroid disorder) you will be prone to getting fat. Eating fruit will make it worse."

No way.

I went home and cried for a couple of days.

Then I pulled myself together, rolled up my sleeves and got surfing. Unfortunately not back in my hometown of Durban by the sea - but on the internet. And I discovered some stuff; a lot of it scary, some downright horrific, and most of it bewildering. My celiac's disease was permanent - I would have it forever. And it had destroyed the villi in my gut, causing inflammation and intense pain. This is turn had led to malnourishment, as I simply wasn't absorbing any nutrients. I was lacking in everything you can name, plus some.

Each time I ate, I clenched up in fear that I was going to get cramps in my gut. I discovered that gluten is deadly, and not just for celiacs. It's a binding agent; it holds things together, that's why manufacturers put it in every single thing they can. Each time you consume it, it is layering over your gut wall and acting like a glue, sticky and prohibiting. It's just not meant to be eaten. And as I mentioned, it's not just in foods. This I was only going to find out about later.

So anyway, I did some research, and I found out that doctors don't always tell you everything, and a lot of what they DO tell you, is not correct. I managed to track down a guy who grew plants to sell for healing - he didn't really have what I needed, so he put me in touch with a homeopathic doctor. She put me on an herbal replacement for the thyroid meds the adrenal doctor wanted me to take, and also started me on cannabis oil, which helped me to sleep through the night for the first time in about 25 years.

The abdominal pain continued, though. I had cut out eating bread and pasta, and come off sugar entirely. I had always been a vegetarian, so was meat free, but still partook of cheese - I really did think that I was leading a healthier lifestyle. And I was. But it wasn't enough.

For every step forward, I seemed to be falling back 10. The brain fog continued. I started getting heavy menstrual periods and was diagnosed with cysts and fibroids. I went into hospital again to have them removed, and became acutely ill from the anaesthetic, languishing for months and not coping with life at all. The cramps in my gut continued - it was becoming part of daily life. People started to avoid me as I was impatient and often lacking in a conciliatory manner. The pain was all-consuming; it was difficult to face people's daily foibles with a graceful tone. I went back to the homeopath who took more bloods and told me to persevere, that these things take time. I felt I didn't have any time - I wanted an out, and any out would do.

For whatever reason that drove me to it, I one day read the ingredients on the back of my shampoo bottle. It leapt out at me and literally took my breath away - there was GLUTEN IN MY SHAMPOO!! Frantic, I started reading every single label on every single thing I touched in the house. More than half of everything I was ingesting, either orally or topically, contained some form of gluten. I was stunned beyond belief. Why hadn't the doctor who diagnosed me with celiac told me about these pitfalls? No wonder I wasn't getting better. No wonder I lived in constant pain. But at least now I knew, and now I could work towards getting better.

So...... living with celiac is many things. It's the bittersweet relief of discovering that the cosmetics you were using contained gluten, giving you an excruciating ache in your gut every day for YEARS, but now knowing that you can stop the pain. It's about finding out that the spice shake that you put over your potatoes contains gluten too. The soap you used. The face cream you put on. The toothpaste you were using. The bag of crisps you ate. The oven baked chips you prepared.......

It's about the pain...the unbelievable pain in your abdomen, ripping your gut like someone slicing a knife through your flesh. The pain that rolls in literal waves across your belly, making hard ridges of flesh across your stomach that are agonising in their intensity. It's pain that makes you weep and gnash your teeth and flail about in helpless resignation, leaving you drained, desecrated and wanting to end your life.

On a much deeper level, it's about that constant brain fog due to an inflamed system; the knock-on effect of people thinking you are dishonest, because you truly cannot remember saying or doing things. It's having people think you are unreliable because your memory is non-existent so you don't show up for stuff. It's friends' invitations slowly starting to dwindle because you have to say no to social events because that ache in your gut lays you up in bed for 3 or more days in a row. It's the same friends who raise eyebrows and send you disparaging memes, like plates of ice cubes with the words "What CAN you eat?" written across it. It's the lonely and desperate world of someone ostracised for something they have not done, all the while writhing in pain.

The good news though, is that - while celiac is permanent - you can change your life around and live relatively pain-free. Since juicing and eating only raw, plant-based whole-foods (that is, foods that have not been processed, that are still in their original form), my system is back to being alkaline, I am no longer inflamed, and my bouts of agony are pretty much a thing of the past. I have lost friends, yes, and am still called difficult, and am still wary of eating out anywhere - whether at friends' houses or at restaurants - but I try to consider myself lucky, because my body has a strong survival mechanism : I am fortunate that my system rejects gluten, because it's pretty deadly stuff. I would advise you to stay off the stuff, too.

P.S. The doctor who told me not to eat fruit? I eat as much fruit as I like and I have never put on a single gram.......

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