My Story: My Celiac Diagnosis & Where My Health is Now

My Celiac Diagnosis

I have been blogging away here for almost two years now, and I am still yet to share my full story. I thought it was about time I correct that, and share how I got to be here, and why The Vedge means so much to me.

I just love reading people’s diagnosis & healing stories, and I can’t believe it has taken me so long to get around to sharing mine! So here goes…

 

After three years of agonising stomach pain and gastro symptoms I was finally diagnosed with celiac disease at 21-years-old. For a long time I had largely ignored the symptoms and actually thought being in that much pain was just normal.

The funny thing was when I was diagnosed I believed it was the end of my health problems, but really it was just the beginning of my journey. I am still on the road to healing, but that’s okay – I’m making progress.

During the few months before my diagnosis, I gained 5kg (roughly 11 lb), which was weird for me because my weight was usually steady. I also started getting much, much worse symptoms. These included stomach pains and almost instant and extreme bloating after eating. Headaches, dizziness, fatigue, mental fogginess, numbness… the list goes on.

I had a suspicion that gluten was the culprit as my stomach pains were really intense and instant after eating bread. I went off the main gluten products like pasta and bread, unaware of the sneaky gluten in almost everything at that point. After a week or two I felt a lot better – enough to know that I was onto something.

So I went to the doctor to get tested for celiac. He told me I needed to go back to eating gluten for two weeks to allow tests to be done. So back on gluten I went and almost instantly I was back to feeling sick.

Two weeks later I got the blood test and found out I had celiac disease. I was so excited and relieved to finally have a diagnosis after so many years of not know what was wrong. For years I had test after test, including a laparoscopy (where they make an incision near your belly button and put a camera in), ultrasounds and blood and urine tests. The doctors also wanted me to do a colonoscopy (saying that I might have colon cancer – doctors can be so dramatic) and an intestinal biopsy but I flat-out refused those.

I decided not to get the intestinal biopsy done because I had had a laparoscopy done a few years back for some other pains I was having, only to have the doctors find pretty much nothing, except for inflamed bowels. Looking back after what I know now this was probably the celiac, or beginnings of leaky gut and intestinal permeability for celiac, causing those pains as well. I had been burned by doctors and invasive procedures before and didn’t want to do that again.

I found changing my diet was the easy compared to dealing with family and friends. Some didn’t really understand what gluten was or how it could cause problems, others didn’t think celiac was a big deal at all and that I was making a big fuss over this gluten thing. Others changed how they dealt with me, and the dinner invites became rare. My parents doubted my diagnosis, often saying (even until recently) “Are you sure you have celiac? How do you really know?”.

Cutting out gluten was a small price to pay to feel healthy again. So out gluten went and I waited for my symptoms to disappear.

In the months following my diagnosis I gained another 5kg (roughly 11lb). I was getting so frustrated because everything I read was telling me I should be losing weight with celiac, not gaining it. I was doing everything right, with so many positive diet and lifestyle changes, I could not figure out why I was gaining weight. During the first year after my diagnosis I gained 12kg (22lb), despite my diet getting cleaner and cleaner.

It was a long time before I finally figured out what sneaky foods have gluten in them. Plus I kept discovering new things I was allergic to. It was about 6-8 months before I wasn’t getting sick at least once a week with a celiac reaction.

During this time, I started getting migraines and nausea after eating dairy. In my research, I have since found out you shouldn’t eat dairy for 6-12 months after being diagnosed with celiac to give your stomach time to heal. Fine by me, I thought. I had been wanting to make the jump to vegan for a long time, but cheese was holding me back. So out dairy went as well.

My health has been like a giant puzzle and it has taken me a long time to figure out all the pieces. Over the years I have slowly been putting the pieces together. I have learnt my liver was very damaged, I have leaky gut, high toxicity, edema (water retention), other food allergies, vitamin deficiencies and grains + dairy were making me worse. Yep, pretty much the whole kit and kaboodle. Some were the cause of the celiac (like the leaky gut) and some were the result of the celiac (like the liver damage, vitamin deficiencies and toxicity).

In the two years since my diagnosis I have tried nearly every diet, supplement, superfood, or strategy out there for healing. Some have been incredibly helpful, while others were a complete waste of money and time.

In my healing, I have found two things to be true:

1) Everybody is different, and what helps me heal may be different from you

2) Healing doesn’t happen overnight. It’s a slow process, and you need patience (something I really have to work on). Your body has gotten sick over many years, and it’s going to take awhile to heal, repair and detoxify.

An Update: Where My Health is Today

[Extract from this post]

At the moment I am following the Gerson Diet as closely as I feel is best for me, and have been for about three months now. This includes 13 juices a day, 2 – 5 coffee enemas (depending on how sick I’m feeling that day), the Gerson supplements, tons of organic produce and salads, and hippocrates soup. I don’t follow it exactly, I still eat some nuts, seeds, avocados etc.

The juices and coffee enemas have had a profound impact on my health. My latest tests with the naturopath are showing some exciting improvement. Before I started the Gerson Therapy, I had no movement in my nutrition absorption or toxicity levels in over a year (and probably another year before that- before I started being tested), so the fact they are finally going in the right direction is like a huge sigh of relief for me – I finally feel like I’m on the right track.

I had my first bad day in a long time the other day (I have a parasite infection at the moment), and it reminded me of how shitty I used to feel most of the time not that long ago. When you’re improving slowly you don’t really realise how far you’ve come, but my health has improved dramatically this year. No more headaches, fogginess, nausea. No more pain from inflammation. I rarely get stomach pains or different aches through my body. I used to get these sudden crippling pains in my hands and feet, where I would drop whatever I was holding – this is becoming more and more rare. So basically, I’m feeling awesome and kicking ass on my to do list these days! My ebook that I’ve been working on for the last 8 months, Living on the Vedge, has finally been released, so that in itself says a lot about my health that I was able to finish that!

I think results speak for themselves and I will continue eating this way until I feel like I need to change, my body is saying it likes this way of eating and I’m listening.

My journey to health, as I mentioned, is on-going. I’ve been working hard on healing myself, and The Vedge was born out of the desire to help other people do the same.

I love hearing other people’s stories, so please share yours in the comments!

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4 comments on “My Story: My Celiac Diagnosis & Where My Health is Now

  1. You are probably already aware of the Gluten Summit, but if not you might want to check it out: theglutensummit.com

  2. I appreciate you story and your blog, and hope to purchase your book shortly. I’m self diagnosed, but haven’t really done tests as yet for celiac. I’m not sure I’d they’re actually available in this small island I live in, or his aware the doctors are of such a condition. I’m also what is referred to as a ‘junk food vegetarian’. Your recipes and book, along with other sources offer a chance for me to fully explore the vegan option. The option I believe is the best lifestyle for me. I hope to also explore a journey of healing, and to help and educate others.

  3. I very much appreciated reading your story, Shae. While I do not suffer from ill health as such, I know many other people who do, and so I can certainly empathize. The difference between you and many other people, however, is that you are clearly taking the bull by the horns and courageously (and creatively, I might add) aiming in the right direction.

    Our health, on all levels of our being, be it physical, mental, emotional or spiritual, is immediately affected by the diet we select for ourselves. For some reason many persons are incredibly blind (or insensitive) to this connection, even, and especially, when it is pointed out to them. I suspect long-time eating habits are like addictions and are hard to break even when we intuitively know that what we are eating may be doing us more harm than not.

    My own decision to follow the cleanest and purest dietary habits have arisen in response to the overall destructiveness of the food industry as I saw/see it. To say that what I was seeing going on all around me pained me at the heart level is an understatement. But I cannot single-handedly stop all the unnecessary suffering directed at animals or all the degradation to our environment, but I could and can take a personal stand by choosing to support only those businesses and individuals who are not participating in the destructiveness all around us, but are instead clearly trying to make a difference by providing alternatives that are gentler on all living beings.

    As I see it, you most certainly are one of the good guys, and so with pleasure, I support your efforts. Kudos on pouring heart and soul into this worthwhile endeavor. Goodness knows the world desperately needs more top-notch vegan dieticians with unique ideas and culinary flair who have not only been there and done that but who know the wherefore and the why. By being kind to yourself first you are now in a position to redirect your compassionate lifestyle and approach and share it with any and all who see it’s value.

    Bravo and thank you!

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