Well guys, I’ve officially been off of the “Gluten Challenge Protocol” and back to my normal diet for nearly a month. My tummy and body are slowly feeling more like their former selves + I’m LOVING have more veggie based meals again. I forgot how addicted I was to cauliflower rice. I know that’s weird, but I’m just living my truth, ha.
Since I finished with my gluten challenge, I’ve had a bit of time to sit and reflect on the totality of the experience. Just as I imagined it would, the process of purposefully eating something that I had been avoiding for nearly a decade, and that I believed could be harming me, was SUCH an interesting experiment. It pushed me both mentally + physically for the entire 6 weeks, and I learned so much. And while I would never want to do it again, I’m actually really grateful for the truths that I’ve uncovered about myself, my body and my diet – and how those things will affect how I live the rest of my life.
(If you’re slightly confused by what the heck I’m talking about, you can read all about the why, what + how of my Gluten Challenge here (weeks 1-2), here (weeks 3-4) + here (weeks 5-6).)
What I Learned
- It really is just food. – The absolute best thing that I learned during my Gluten Challenge is that food, to some extent, only has as much power as you give it. When I was trying to recover from my autoimmune symptoms last year, I really started to believe that every piece of food I put into my mouth was potentially poison. That nuts + seeds were destroying my digestion. That grains were stealing my energy. But the truth is, the stress that micromanaging my diet was causing was probably equally responsible for my ill-health as any food related symptom. During the gluten challenge, it became super obvious that my entire body wasn’t going to fall apart after one piece of bread…because it didn’t. One meal (or even a few meals) that aren’t exactly ideal will not kill you. That truth is SO FREEING. (Unless you have a real allergy. Please follow your doctor’s recommendations and actively avoid foods that you know could harm you!).
- But, food really does matter. – Without completely negating what I just said, I really do believe more than ever that what you eat does matter, especially for health. During this challenge, I could tangibly see the way a continued shift in my diet began to alter the way that I felt and the ways that my body functioned. I’m 30 years old. I shouldn’t have muscle aches. Eating gluten gives me muscle aches. And so, while gluten isn’t necessarily the devil that we make it out to be, it does affect how I feel when I eat it. For some people, it’s dairy or fast food or sugar. Having the knowledge about how food makes you feel is power. I like my food fresh + real + whole. It makes me feel my best!
- Food isn’t the only important piece of health. – I can’t begin to tell you how much your support meant during these 6 weeks. When my physical health began to struggle, so did my mental health. If you read back through my other Gluten Challenge posts, I really did get quite down as the challenge moved on. But, I began investing in other parts of my health to feel more like myself in the midst of my gluten haze. I spent more time talking to people that I love because community gives me life. I made sure that I worked out 5 days a week because after a work out, I always felt the best that I did all day. I spent time in prayer because I knew that I needed to learn to give myself grace when I wasn’t at the top of my game. I cried to my husband because he loves me. And do you know what? Those things had nothing to do with what I was eating, but they worked. My life (and my health) were better for them.
- I am my own advocate + know my body best. I know that doctors have my best interest at heart. I know that my family and friends have my best interest at heart. However, none of them IS me. I am the only one who can fight for answers. I am the only one who can turn down a food that I know isn’t going to make me feel good. I am the only one who can make the choices that make me the healthiest me. Its okay if not everyone understands. It’s okay if some people judge or make comments. Because at the end of the day, I’m the only one who really knows my body + I’m also the one who has to live in it.
The Results Are In
So, I know you’re all dying to know, what did the tests say?
I wish that I could give you a clear cut “Celiac Disease” or “No Celiac Disease” diagnosis, but I can’t. My desperate prayer for this challenge was to come out of it with an affirmative or a negative diagnosis. But, on Wednesday when I picked up my paperwork from my doctor’s office, that’s not what I got.
Firstly, let me focus on the good news. Overall, I’m super healthy! My liver, kidneys + thyroid levels are all normal. I definitely don’t have Irritable Bowel Disease, and there were no H.Pylori gut bacteria to be found. YAY!
Now, onto Celiac’s Disease. Here’s where we’re at:
The biggest red flag of my test results were my Ferritin levels. Ferritin is “the major iron storage protein of the body. Ferritin levels can be used to indirectly measure how much iron is in the body.” The normal range for women is quoted at around 20-300 ug/l in the UK. My levels were at 10.
Unfortunately, I wont have the chance to talk to my doctor about my results until mid-May, but the doctor who read these results to me said that low ferritin levels equal low iron levels, and my ferritin was very, very low. Low iron levels can cause:
dizziness
fatigue
headache
irregular heartbeat
pale skin
shortness of breath
weakness
Now, in terms of Celiac Disease, my antibody test came back in the normal range. And at first glance, that should mean that I don’t have Celiac’s Disease. However, my low ferritin levels can’t be explained by my diet or by blood loss. I don’t have endometriosis or a bowel bleed. I eat tons of meat (including beef), 3-4 eggs/day, at least 4 daily servings of leafy greens, dried fruits, etc. All super iron rich food. To my doctor, that sends up red flags. For some reason, my small intestine isn’t absorbing the iron or storing it properly. That signals damage.
The other devastating part is that during our discussion, she said to me, “As long as you’ve been eating gluten containing meals for 8 weeks…” I immediately explained that the doctor who ordered these tests for me told me that 2 weeks would be enough, but that I had done the challenge for 6 after doing my own personal research. She was quiet and then again explained that my test results are not 100 % reliable for determining whether or not I actually have Celiac’s Disease.
How I’m Moving Forward
As I mentioned earlier, I have a follow-up appointment with the doctor in the middle of May. Until then, I’m in a bit of a holding pattern. I imagine that they are going to re-test my iron and ferritin levels now that I’m off gluten again. The hope is that as my gut heals from the challenge, my levels will rise. I won’t be starting any iron supplementation until after this appointment and these tests to ensure accurate results.
The really great news it that my digestion has actually been okay since finishing the challenge. I’ve been supplementing with probiotics and eating lots of fibre rich foods. Jet lag and a terrible case of bronchitis have meant that tracking the pattern of my other symptoms (like muscle aches, fatigue, etc.) isn’t really realistic at the moment. I’m actually trying not to hyper-focus on my health or my body at the moment + just live in a way that makes me feel the best that I can today.
But I can promise you one thing, I don’t think that I will ever do another Gluten Challenge – even if this is what my doctor recommends. It was incredibly valuable, but also incredibly challenging. I think that I have learned what I needed to + will be avoiding gluten in my future diet.
Thank you all so much for your incredible support during this journey.
If you’d like to stay updated on what I’m cooking, eating + how my path towards healing changes (and my doctor’s orders in May), feel free to follow along on instagram.
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Keep your chin up and continue doing what you are doing. Only you know how you feel. 😘 love you sweetheart. Nan.
Love
This is interesting to me. My daughter is 8 and we just started a gluten challenge for her. She has been gluten free for 2 years because we believed that she had a wheat allergy. Not to self, always double check with specialists. All of her symptoms after going gluten free did stop and she started gaining weight. 2 years later when we finally talked to an allergist, she told us that what my daughter had did not appear to be an allergy but instead either gluten intolerance or celiacs disease. So we went to a pedi GI, she recommended a gluten challenge. We started this week and it’s for 12 weeks. She said that at 6 weeks she has had patients who came back negative but at 12 weeks were positive. I hope you got it figured out! I read my daughter your thoughts on food just being food and not poison, and it really resonated with us. Thank you for documenting your journey!
Hi there! My name is also Jessica and my story is very similar to yours, except my gluten challenge is only for two weeks.
I don’t know if you made a post about it (this particular content is very hard to find!) but I would live more information about how you switched back to a gluten free diet. Were there any challenges?
A lot of it is mindset and I dunno. I’m just worried now that I’ve been off, the temptation will come back again. Any advice you have would be lovely.
Hi Jessica! Thanks so much for stopping by – honestly? I didn’t really have any challenges at all. Because I know how much better I feel without the stuff, it was much easier going back gluten free than it was staying on gluten! I actually went through a Whole30 as a way to help my body get back into a rhythm of real food after my gluten challenge. There are ALL KINDS of resources on how to do a Whole30 (a basic elimination diet) online, but really just do what works for you. A slow transition back is the best transition if it works for you in the long-term! Remember, it’s your body, so you get to be in control. Hope that helps!
Interesting experience, thank you for sharing.
Malabsorption (iron) could be due to a number of factors including SIBO, not just CD; have you tested for that before going on a GF diet again?
Hi Beatriz! I actually have gone back to gluten free + love living this way! I since have been diagnosed with Endometriosis, which my doctors believe is my reason for iron deficiency due to the heavy monthly bleeding. So sweet of youth check in, though! I’m actually feeling SO WELL these days <3
Thank your for these blog posts! A few months ago I went to a naturopath for a health kick and my gluten antibodies were through the roof even though I’ve been gf for over 8 years. I’m now waiting for celiac gene results from a specialist as to if it’s worth doing a gluten challenge. I’m seriously nervous about what to expect and really dreading the possible challenge. You’re right that there’s almost nothing online from people sharing their experiences. So thank you for sharing yours. It makes it a bit less scary! You can be sure pain au chocolate will be on my ‘to eat list’ too though 😂 always a silver lining I suppose..
Hi Abigail! Thanks so much for this sweet comment – I really do remember how scary it was! I’m so glad that there’s a bit of help found here in my experience + I’m only ever an email away if you need to chat with someone who’s gone through it 🙂 Enjoy the pain au chocolate, ha!
Moving, honest.Thank you. I’m just about to start my gluten challenge and am dreading it, but reading your blog inspired me to redirect my thinking during the process (if I can) and to renin myself it will finish and everyone finds it tough x
Thanks for sharing your journey. Since having Covid I’ve been struggling with major digestive issues and trying many different diets while getting tests done left and right. My celiac test was normal and gluten allergy as well so I tried eating gluten once a day for a few days. I got super nauseous the 4th night and stopped all together now. I can’t stop dropping weight even after going gluten free the last two months.
I want to try gluten again but the forums online on how to reintroduce say it can take hours to weeks to feel symptoms which makes it super confusing. My allergist didn’t give me any direction after saying I wasn’t allergic that I could just try it again either.
The thought of possibly feeling super nauseous gives me so much anxiety but I know gluten will help me gain weight so fast 😩 I’ve been counting calories every so often to see where I’m at and not checking my weight but every few weeks, but I keep dropping a few pounds and I’m trying not to be super active. I’m curious if this was something you struggled with after going gluten free?
Hi love! So sorry to hear that you’re struggling! I have to say – I didn’t struggle with weight loss after going gluten free! I hesitate to recommend something to you since every person is different – but I’ve found eating lots of healthy fats (nuts, avocado, etc.) + complex carbs (g-free oats, sweet potatoes, etc.) helps keep me fueled without any sort of gluten or gluten-free alternatives. Hopefully you’re able to find someone to help you get to the root cause – perhaps a nutritionist? Good luck!
I am 12 been “diagnosed” with celiacs since age 3. My doctor never told us about the gluten challenge. I have not had gluten since age 4. And am told I might soon have to go on the gluten challenge and I am fearful as I have emetophobia (fear of others/yourself being sick). I need advice for if I should to the test as the longest school holidays are 6 weeks and I would have to go for 8 weeks
Thanks
Hi Brianna! Thanks so much for your comment + for sharing some of your journey. I think only you can decide if it’s worth it for you! I guess I would ask, what is the benefit of testing? Are you hoping to find out you AREN’T celiac + then reintroduce gluten all of the time? If not, the treatment for being Celiac is going gluten free, so some people don’t find the testing necessary if they’re happy to stay off of gluten. But no matter what you decide, remember the test is a SHORT time + you will be okay 🙂 Sending you hugs!
Well done you, I really hope you find out what’s really wrong – the not knowing can be such a drain. Just starting out on gluten-free diet (3 months in) and dreading the 6 -8? weeks for celiac testing after feeling so much better. I feel sick after accidentally eating a crub of cereal – very nervous about it!
Thanks do much for sharing.
Thanks for the blog. I have had digestive issues for years but have become a lot worse of the last year or two.
My mum was diagnosed with coeliac about 15-20 years ago. My antibodies have come back negative and the nurse didn’t think coeliac was even an option as I wasn’t “ill” and I’m overweight/obese. I went gluten free myself and my digestive issues cleared up. I went back to the doctor for a 2nd opinion and they agreed with me.
Got an endoscopy booked and another antibody test. I have to start back on gluten now (doctor let me stay gluten free till after my wedding and honeymoon) but I’m not looking forward to it as I start a new job in September (I’m a teacher). My main symptom is diarrhea so really not looking forward to it even though one of my biggest vices is good bread (which I have been missing).
The hospital gastro department say there is a strong suspicion of coeliac because of my history and my mum’s history. All my bloods and stool samples were normal except low platelets and low vitamins B9 and D (pointing to malabsorption).
I am not sure if I should just go back to a normal diet or to make a point of eating extra gluten. Thanks