I met Robyn Mason at an Institute for Functional Medicine (IFM) conference this last year. Robyn is a nutritionist from Australia but currently living and practicing in London, England. Robyn has been diagnosed with Celiac disease – via blood work and the gold standard test which is an intestinal biopsy. But Robyn never had a single gastro-intestinal (GI) symptom!
Perhaps this is your story too. Did you know that ONLY 1 in 8 with Celiac Disease do have a GI complaint of some sort? The other 7 have issues – like Robyn – of asthma, hay fever, rosacea, fatigue, anemia, sensitive skin, acne, etc.
In conventional, main stream medicine, Robyn is a-typical. But really, she’s the classic story.
A celiac diagnosis is often missed because the typical Celiac doesn’t have GI symptoms. It’s an absolute MYTH that Celiac disease only affects the gastointestinal tract. But it is taking a long time for that myth to die. There are thousands of studies showing that Celiac Disease can affect the brain (gluten ataxia), joints, skin, energy levels, etc.
I hope you’ll take 30 minutes out of your day and listen to Robyn’s story. Chronic health conditions, seemingly unconnected, ought to be a huge. red. flag. to any health care provider. If you have a plethora of symptoms and they are treated in isolation (an inhaler for your asthma, antibiotics for your acne, iron for your anemia), you are in desperate need of a different kind of health care provider.
**** Now, all that said, if you have been tested for Celiac disease but it was negative, IMO that isn’t necessarily the end of the story. I lecture every year about the false negatives that occur in Celiac testing. Tests like the EMA and tTG are only 100% accurate when there is total villous atrophy. It’s like waiting until you have end stage cancer to declare that yes, indeed you do have cancer. I have an entire downloadable E course on the subject here. It’s up to you to be your best advocate so PLEASE know the facts. As a health care provider myself, we can’t know everything. So get involved and don’t just take your doctors word as the last word.
Back to our conversation, Robyn and I also touch on what happens immunologically when one is cross contaminated or “glutenated”. Robyn consults to Cyrex Labs – a lab way ahead of their time and they offer advanced Celiac and non-celiac gluten sensitivity testing – so she fully appreciates that not only does gluten cause fatigue and malaise, but immunologically, much more is happening beneath the surface. Robyn reviews her delayed symptoms and connects the dots. We’ll also dive into this deeper in a subsequent interview I hope!
When you are done listening, please spread the word. Our goal is to help more of those walking wounded out there.
Surviving not thriving.
And while there are plenty of root causes, gluten could easily be one of them.
When we know better, we can do better.