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I Can Directly Attribute So Much of My Endometriosis Pain to Gluten! Have You Gone Off It Yet?

So I ran a little experiment the other day. It was during my chocolate addiction week and I figured I could get away with it, since the huge amounts of chocolate didn’t seem to have any immediate consequences… Little did I know!

To tell this story, I must however begin with how it all started. About nine months ago, I went into a gluten-free shop, actually looking for some more interesting grains to add to my home-made muesli. Upon talking to the shop owner, she suggested that I displayed many of the symptoms of someone who was gluten intolerant. I didn’t really want to believe it or acknowledge it but a part of me also felt compelled to research the whole idea of gluten intolerance. I did and I was shocked to discover the close connection between gluten intolerance and Endometriosis. You can watch the video on my thoughts way back then…

So it took me a good few months to finally decide to experiment on whether or not I was gluten intolerant. I ate no gluten for two weeks and then had a big bowl of pasta. The reaction was immediate. I got bloated, got a headache and just felt tired. It was decided. I was gluten intolerant! Now I had the laborious task of trying to eat gluten free, when my diet had so many yummy gluten-filled foods in it!

Well, it has been nine months and I have been 98% gluten free. I account for 2% for some sauces and little bits and pieces within what we ate that contained gluten.

I must tell you that the results have been amazing!

One of the main things that has happened is that I have lost that bloaty, spodgy look, you know what I mean, the plump-but-not-fat look? The most impressive thing that I have lost is the little stomach I used to always have. I mean this is huge! I had honestly tried so many things to get rid of it for years; I even bought the Ab Circle Pro! Nothing worked and I just landed up buying shirts to cover my slightly podgy stomach. I just took it as part of my body or part of having Endo.

I also lost heaps of weight, probably because I couldn’t eat biscuits anymore! I also have better digestion and don’t get as tired as easily!

Little did I know, it was the gluten all along!

So, getting back to my story about the chocolate cake. James and I went out for a nice dinner and I ordered a salad, which unfortunately wasn’t quite enough, so I thought I would treat myself and have some dessert, something I have honestly not had in months! Normally I opt for lemon sorbet. So I ordered a piece of chocolate cake for us to share. It was honestly so delicious! It was moist and tasty and rich and sweet and well… I won’t go on too much because some of you are just starting out on the gluten free thing and I don’t want to make it too hard! I really thought it would be okay and that I would maybe feel a little bloated but that I could overcome it.

Well, about thirty minutes later, I honestly felt like absolute crap! Best word to describe it! My stomach swelled up and I looked like I was pregnant! I got this instant feeling like I needed to go to the toilet. Off I went to the toilet but the bloating and full feeling didn’t go away… it only got worse!

I went home and tried everything I could think of—ginger tea, chamomile tea, omega 3 oil and eating dates to encourage movement! Nothing worked. I was bloated, tired, irritated and sore. So sore! I had forgotten what sore felt like… and this was a loud and expressive SORE! Swelling, pulsing and that overly bloated feeling all came back to me!

I really didn’t think I would have such a severe reaction or I wouldn’t have had the cake! It was not worth all this pain!

It took me two whole days to recover from this one piece of cake and I will never doubt the connection between gluten and endometriosis ever again! The two simply don’t mix well!

I know we are not all gluten intolerant but it has been proven that women with Endometriosis are more likely to experience these effects as we suffer from poor digestion.

You can get a blood test to assess if you are gluten intolerant or you can do what I did and follow the two week test; don’t eat it for two weeks and then add a whole heap and test your results. That means: no barley, oats, flour (unless it states gluten free) and avoid soy sauce and sweets (many are made with wheat flour).

I know it is hard initially and there are many things to tempt us. Biscuits at work were the hardest for me! Thing is, the results I have experienced have been amazing! Unbelievable, in fact! I will never go back to gluten—that piece of chocolate cake proved how important sticking to gluten free for Endo is.

What is your experience with gluten and endo? Do you recognise the response in your body? Does it affect you? Love to hear your thoughts!

Hugs, Melissa x
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This Post Has 19 Comments

  1. ZandraJoi

    I have several food intolerances & am very limited to what I can eat. I can’t eat most fruits & vegetables, especially raw. If I didn’t eat bread, I’d really be limited. Could gluten cause these food intolerances (going on 10 years) & could NOT eating gluten CURE it? I’ve always been into health & fitness & past several years organic & holistic. But it’s hard when I can’t eat apples, cucumbers, watermelon, leafy greens (exception iceberg), list goes on… without getting distended. Even if it’s by themselves or with other foods, doesn’t matter, it hurts. Cooked onions, broccoli, cauliflower, squash… all hurt me as well. Ironically, eating bread (& organic meat on occasion) doesn’t bloat me. But eating half a grapefruit & I get doubled over in pain. I can & do eat bananas, potatoes, & tomatoes with no pains so I get fiber. I go like clockwork. Not constipated nor diarrhea. Unless I eat an ‘unsafe’ food (i.e. an apple).

  2. Melissa

    I am happy to hear that it has helped you and that you could see the connection with food and inflammation too 🙂

  3. surita

    hi mel..i tried on gluten free diet for 3 weeks. yes i didnt experience my endo pain. Yesterday i ate a pizza for dinner and then my endo pain recurred. The whole night i suffered with pain bloatedness and low grade fever. thank you Mel for sharing with us about this gluten thing. I will never eat gluten anymore

  4. surita

    Gluten free diet

  5. Teresa

    Hi Ladies! – I just recently decided to take my condition (endometriosis) seriously after having my second major surgery last Thursday. I’m new to this so I’m unsure if I’m gluten intolerant or not. I value all the information you’ve all provided. I hope to start my gluten free diet along with my endo diet soon.

    Best Regards,

    Teresa Adams

  6. Melissa

    Hi Kerry and welcome 🙂
    I know my love for pizza and pasta was hard to give up at first too but it got easier and now, I barely remember those old loves – guess like a childhood sweetheart.
    Well done in figuring out your own pain and the connection with gluten. It took me years and years of eating them and someone else pointing them out that made me finally realise!

  7. Kerry

    Hi Mel

    Where do I start. I have had a few surgeries over the years for endo, last year being the recent one. About 4 months ago I was suffering that “dreaded” pain and couldn’t emotional stand having another surgery. By almost coincidence I was keeping a mental food diary and being more aware of when I was feeling that horrid stabbing pain as well as couch ridden headaches. Well blow me down, it was ALWAYS after bread/pasta. I jumped on google and read for hours, basically everything you have mentioned on your blog. I’m on a term break at the moment and thought I could handle 2 bits of pizza. It has taken me nearly 2 days to recover, countless pain killers and hours curled up on the couch. Without talking to any professional, I know my body, I know what foods I can handle. I am still learning about quantities/portions and how much my body can handle. As like Emma and LOVE my carbs and find I can tolerate very low amounts of gluten products and loads of water.
    Thank u for sharing your journey and for the others above me for sharing too.

    Continuing my love hate relationship with Carbs
    : )

  8. Cris

    Hi Melissa! Hi girls! I´m from Brazil, I’m a doctor here and I am deeply upset about the researches in endometriosis. I´m a “endo victim” and I just discover it trying to get pregnant. During 4 years of my life I felt miserable with lots of unsucessful pregnancy treatments, surgerys and so on, when I decided research by myself. I discovered, the same like you did, I´m a gluten intolerant! This information change my life. I´m 40 y old now, but I believe, after my gluten free diet that maybe I can try again. I’m no doubts anymore that my endo was caused by gluten sensivity. Congrats for your website and thank you for your precious history that might help lots of women. (Sorry if my English is not so good ).

  9. Melissa

    Hi Rachel,
    Well done for sticking to the endo diet for 7 weeks already! That is fabulous. I have always debated the oats thing and I am keen to test them again on myself. The only way to know is really to cut them out for a period of time and then add them in and see how your body reacts. Some people seem to be fine on oats while others say they still get a bad reaction. Maybe it is also the way we prepare them. I have heard that soaking them the night before really helps with the digestion part.
    Sugar used to be the same tempter to me too when I first started. I personally think it is actually a sign of Candida overgrowth, that we miss it so much – maybe even an emotional healer of sorts too 🙂
    I think the fuzz balls are fine – even those should only be in small amounts. Promise you won’t miss them nearly as much in a few months 🙂
    I barely eat them now – only on special occasions and then the cravings last for days again afterwards…. better without them 🙂

  10. Rachel Strysik

    I’ve been eating gluten free for about 7 weeks now. I’ve been on the endo diet for the same amount of time. I’m hoping this next period will prove to be less painful! =] I do still eat oats though. Take a look at this link for oat and gluten relation. http://www.livestrong.com/article/366274-do-steel-cut-oats-contain-gluten/
    How often do you eat sugar desserts Mel? I’ve been cutting it out as completely as I can. I even make my own sugar and diary free hot cocoa! =] Also I went to a market close to home called Whole Foods and they had the dates with almonds covered in coconut, I remember you mentioning them and I got so excited when I saw them that I bought them on a whim and boy are they great!

  11. Melissa

    Wow Stacy! That is awesome to hear and that it made such a big difference!

  12. Stacy

    YES! I cut out gluten towards the end of November last year, and I have never ever felt better. I used to take so many painkillers supposedly for endometriosis pain, but now that’s all gone. I haven’t had a single moment of pain since changing my diet, and it used to be almost daily. Incredible 🙂

  13. Melissa

    Hi Tani,
    No hadn’t seen this one! Thanks for sharing! Quite interesting 🙂 Makes sense really!

  14. Emma

    Hiya
    The same applies to me, gluten does me no favours and within 24 hours of cutting it out I have a noticeable improvement. But it is SO hard to stick to. I seem to love all the things which are bad for me 🙂

    I saw an excellent nutritionist in the UK who writes specifically about endo and diet. She recommended I avoid gluten and I was shocked at how much difference it made. Not only did the pain reduce, it felt as though I could think more clearly and I felt ‘lighter’ somehow.

    I had a test for coeliac disease but it came back negative, however my understanding is you can still be gluten intolerant without being coeliac…. all I know is how I feel when I avoid it and that speaks louder than any test result. I just wish endo didn’t mean a lifetime off the baguettes and cakes!!

    Right, this post has prompted me to make a concerted effort to reduce the gluten in my diet again! Good luck to anyone else who tries it.

    Emma

  15. Melissa

    Hi Olga, well that is much more distinctive! At least you will be guaranteed to never go back on gluten! My pleasure 🙂

  16. Melissa

    Totally relate to that one Mary! I totally agree with you – it encourages more fruit and veg cos those seem to be the healthiest and safest options!

  17. Olga

    Hello, I have gluten intolerance as well. My side effects are a little different from yours Mellisa. I have the bloating but the worst part of it I have severe pain in my stomach and a low grade fever as well… I can also have diarrhea and vomiting depending how my body reacts.( sorry for using strong words).

    Does anyone else have these symptoms or others…?

    Thanks for the such great blog Melissa!!! 🙂

    God Bless

  18. Mary D

    Hi Melissa – I have been gluten free for a little over a year now and I will never ever go back! I gave it a try to address my thyroid problems and I’m sure it has helped with the endo too. Like you my bloating/digestion improved but also my MOOD made a dramatic swing for the better. While there are some good GF alternatives you can buy if you really feel the need for something like a pizza or cookie, one of the best things is it forces you into a more whole-foods diet (wheat and barley ingredients seem to be most processed foods – even ones you might not think). I would encourage readers just to give it a try like you did – don’t get caught up in thinking it’s the trendy thing to do and it won’t help. Just give it a go and see if you don’t feel better. Now, if I could only be as disciplined with giving up caffeine and chocolate! 🙂

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