You might be wondering who I am and why you should listen to me; well, allow me to introduce myself. I’m Susanne. About 10 years ago I started having severe migraines and episodes of vertigo with nausea and vomiting that would come and go, seemingly at random, lasting for a few days up to 6 months in one stretch – as well as significant fatigue, gut, joint, and body pain, and memory issues. You can imagine that was problematic during university, but somehow I managed to graduate at the top of my class with a degree in Social Work. I was determined to change the world and make it a better place, but my health continued to deteriorate, forcing me to leave the world of office work, and stop practicing as a doula. In my late 20s, in 2013, I moved to Prague – where it wasn’t yet trendy to be “gluten free”, so when I mentioned that I suspected I had an issue with gluten to my new doctor there, she took it seriously and ordered the lab work.
Sure enough, it came back positive. I was eating mostly gluten free-ish at that point having heard about the connection between migraines and gluten, so I was told to deliberately eat more gluten for at least a few days and repeat the tissue transglutaminase blood test with an Allergist-Immunologist. It came back three times as high. She told me that I needed to completely remove gluten from my diet, permanently. It took about 6 weeks for me to recover from the symptoms that were flared by that deliberate gluten ingestion, and 6 months before my tTG markers started to drop into the “remission” range.
I was of course also referred for an endoscopy which is the other standard part of the Celiac diagnostic process. They essentially put a special camera down through your esophagus and stomach and take pictures and tissue samples from the small intestine and use them to determine the level of damage that Celiac disease has caused to your intestinal lining. This is important because damage to the lining affects your ability to absorb nutrients from your food. They use the “Marsh Scale” to indicate the level of damage (4 is the worst I think). I had been following the Autoimmune Paleo protocol for almost 6 months at the time my scope was done so it only showed Marsh 1 level of damage, but I suspect it would have been worse if it had been done while I was still actively eating gluten.
It is essential to do testing for Celiac disease while gluten is still in your diet. Because it is such a simple blood test, I would encourage you to do the test before changing your diet. If you have already been 100% gluten free for more than a few months, please consider genetic testing rather than the testing that would require you to eat gluten again and risk making you terribly unwell. It is my hope that the new standard of care will be to look for HLA DQ2, HLA DQ2.5, or HLA DQ8 genetic markers in combination with positive response (reduction of symptoms) on a gluten free diet. It turns out I have these genes from both sides of my family tree – I just happened to be the first diagnosed.
I’ve had the unique experience of learning first how to be a Celiac in Europe, and then how to be Celiac in North America. This has given me unique insight to be able to help those who live all over the world, and those who want to travel with these special considerations in mind… so I decided to create a course called Down with the Pastryarchy, designed specifically for those who are new to a world without gluten or grains. There will be different factors to consider depending on the type of places you frequent, how you like to travel, where you live, the symptoms you are managing, and what your diet is like going into this. Some of us find it easier to jump in all at once, and others need to wade in slowly. You know yourself best, and it will be up to you to adapt the recommendations I lay out here so that they will work best for you. You might need to try basic gluten free before committing to grain free, or another specialized healing diet. I actually did this – but truthfully I didn’t start getting better until I adopted the AIP healing diet, and further adapted it for histamine sensitivity. Experiment with yourself, listen to your body, and notice what feels best – and what is reflected in follow up lab work.
The cleaning and setting up a gluten or grain free kitchen is probably the most important step to follow as written because if you try to do it a bit at a time, you will end up re-contaminating the space and wasting your energy. If energy is of particular concern, you could space it out into removing harmful foods from your home, then another day cleaning, and another day shopping for new equipment and ingredients. I’ve included affiliate links to make it easy to share my favourite items and ingredients with you. There is no extra cost to you by shopping with those links, but it does send a small percentage back to me which allows me to keep making more resources for you! If I’ve missed something that you want to know, please reach out and I will do my best to answer your questions, or to connect you with the best resources possible.
About a month before I was diagnosed, I attended an online conference called the Gluten Summit. I’ve included affiliate links for these materials because they are still some of the best, most informative, and thorough resources available on Celiac Disease, Non-Celiac Gluten Sensitivity, and Wheat Allergy. Learning there (and elsewhere) from world leaders in these conditions has equipped me to advocate for the best care possible for myself, for my friends and loved ones, and to have the wisdom to really believe what my body is telling me. Learning to trust and listen to your body and your intuition has been an essential part of this journey for me, and I hope it can be for you too. Buckle up, hang on, and know that it is totally okay for this to feel like a bumpy ride! It’s a steep learning curve. Please be kind and gentle with yourself as you learn and cultivate new ways of being, and new ways of relating to food. It’s a game changer – and it’s going to be okay.
If you want to connect with me, or hire me to work with you as a Health Consultant, you can reach me at support@downwiththepastryarchy.com.