I am curious about other peoples experience of eliminating wheat/gluten from their diets and the effect it has had on endo flare ups. Plus fasting to help the symptoms.
Back story - I have just been diagnosed with endo after 20 years of period pain, largely masked by hormonal birth control until I came off mirena a year ago and had awful symptoms. Period pain, spots, weight gain, fatigue etc. I am going back on mirena soon as it did help but I have recently tried various holistic methods to control the endo. What seems to be working the best is going wheat free and also fasting. Has anyone else benefited from this? I heard it recommended on podcasts and have been listening to Mindy Peltz 'Fast like a Girl' audiobook.
I think the fasting is allowing my body to heal and the wheat is removing the inflammation. Would love to hear other peoples experience - but i feel better than I have after a couple of weeks of this than I have in the last 18 months! Its mad.
Also, has anyone also had positive story of mirena coil helping with endo?
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Fliss1234
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Hi, I find that eating gluten free helps. It’s doesn’t stop my endo pain but helps to bring down inflammation and discomfort. I haven’t tried fasting. In my case diet is important to manage endo but can’t treat the disease on its own. I also take the mini pill/ pain killers. The mini pill has worked very well for me but I don’t have experience with the coil. thanks for sharing your experience 😊
I listened to Mindy Peltz podcast and audiobook - she explains all about fasting around your cycle and when to do it. I try to fast in days 3 - 14 of my cycle then lean in to more food the latter part before my period. Mainly doing 7pm - 1pm fasts at the moment which are making me feel good. Also having Accupuncure too which is also helping.
Diet was a life changer for me. I was on tramadol and post surgery still in pain. I was about to be put on GnRH drugs when I went on a special endometriosis diet instead. Within 6 months I was off my painkillers and pain-free. I removed sugar from my diet as well as gluten and wheat. Sugar is oestrogen feeding and so anything that causes inflammation needs removing. Dairy was also removed. I saw a dietician who oversaw my diet. She's written a book too; How to control your endometriosis by Henrietta Norton. I definitely recommend it if you're more holistic in your approach. It's not for ever either. As I went into menopause and oestrogen dropped I could eat what I liked. I also had the mirena coil fitted during surgery. It took a few months for it to settle my periods down and my first period after surgery was awful, but this stopped my bleeding eventually, so in conjunction with the diet it was a great combination for me. I hope you get the results you're after and all the best!
hi! How did you start a diet like that? i am almost 100% positive that it would help me (i have a wheat intolerance and IBS), but i truly dont know how to start. Do you hva e apremade diet or? thank you so much
I was overseen by Henrietta Norton in her clinic 9 years ago. I went online today and you can still make appointments with her. Google Henrietta Norton Nutrition and her details come up. Or you could follow her diet yourself which requires you to give up wheat, gluten, sugar and dairy. Her book is called Take Control of your Endometriosis. It's an anti inflammatory diet essentially and you are cutting out anything which is oestrogen feeding. And with Endometriosis as we know, oestrogen worsens inflammatory pain. I can attest that in my case it did what surgery couldn't. I was about to be put on GnRH drugs and by following her diet for 6 months got out of pain and off all my painkillers. It takes quite a big shift in thinking about what you can and can't eat, but is ultimately a very healthy way to eat. I hope you manage to get help with this and all the best with the diet!
Fasting for my part would trigger periods and a good pneumothorax! Fasting from my experience is a very bad idea. As I'm taking hormonal pills, it disrupts your body and provokes a hormonal imbalance.
I found taking wheat out of my diet made a big difference to my symptoms - particularly pain and bloating. If I eat it more than a couple of days the symptoms come back again. I'm ok with other types of gluten like rye and barley. but we all react to different things. Wheat can be quite inflammatory in the body.
Good to hear that diet changes are working for you!
I first started getting endo symptoms 4-5 years ago, around the same time I started a new job as well which was a stressful experience. Because I didn't want to take hormonal medication I decided to try out excluding the things that you and other people here have mentioned - sugar, dairy, wheat. I have to say that I did feel a difference in my symptoms but I don't know if it was the new diet or the fact that I was feeling more settled in my new job and maybe wasn't as stressed.
Fast forward to the past year - I have had excision and have been prescribed hormones, but I doing more research on what food is best and so my diet is slightly different to 4 years ago. But it's not a one size fits all thing, everyone reacts to food differently, so what works for me might not work for anyone else in this forum.
I've heard conflicting things about gluten - some scientists and doctors say that people shouldn't avoid it unless they have Coeliac disease or an intolerance, while endo sufferers claim they feel a benefit to cutting it out of their diets. The problem with wheat might be that white flour contains very little fibre which means it could very easily give you a blood sugar spike and subsequently a dip and if that's something that happens constantly in your body it could lead to more inflammation, insulin resistance, and potentially a lot of other problems. (Low fibre also means the beneficial gut bacteria isn't being fed which could lead to issues. An increasingly hot topic is the gut microbiome and its link to diseases like endo which I find fascinating.)
What's even worse is that your average supermarket white bread is also ultra-processed so it will contain a lot of sugar, a huge list of other ingredients that are basically chemicals which you won't find in a supermarket or your kitchen (ie. preservatives, emulsifiers). These chemicals could also be harmful and lead to inflammation and considering how many "foods" in shops are full of them people are probably consuming a lot of these on a daily basis without realising. Brown bread might be no better either as it's probably just white bread + brown dye. It can be difficult to avoid ultra-processed "foods" though because they are cheap and made to make you eat a lot of them. I used to eat gluten-free bread and pasta and those are not great as they're also ultra-processed and low in fibre.
So these days I try to avoid ultra-processed "foods", I eat more whole foods (frozen fruit and veg, tinned beans are good as they're cheaper and last longer), I cook more, I make my own spelt bread if I can be bothered. I eat wheat but I try to pair it some sort of healthy fat - e.v. olive oil, nuts, seeds, and veg/fruit (i.e. fibre) as they slow down the absorption of sugars which could lead to the blood sugar spikes/dips and inflammation I mentioned before. I also hardly eat meat these days. Interestingly, I watched this YouTube podcast where scientists said that dairy can even be anti-inflammatory, though they recommended cheese, kefir, yoghurt as they are fermented and contain good bacteria, and whole milk over low-fat milk and butter.
Finally, I guess it's important to remember and accept that we'll all have times when we slip up and have something that's technically unhealthy and not punish ourselves for that. We've gone through a lot already to give ourselves a hard time too. Sorry about the long reply and btw I'm happy to be challenged on what I've said from someone who knows better as I'm not a scientist. My knowledge is only based on this science podcast I listen to.
parleystopaz0e 100% agree with what you're saying. And also.. let me guess, you're a dedicated listener of Zoe Science and Nutrition 🤩 so so much good and eye opening information there, isn't it 🤩🤩🤩
I've taken so much from there and essentially tweaked my diet without really cutting out any single food group. And already had absolutely amazing results with my endo, as well as my skin, mood, general health and well being 😍
Yes, the Zoe podcast! I’m learning so much from it too. Don’t know if everything they say is 100% true but it makes a lot of sense, and they are scientists actively conducting research and keeping up with others’ research. Some of the facts they share really blow my mind too.
That’s great that their recommendations have had such a positive effect on you, Roxita!
I wish UK endo centres actually were more equipped to give real advice on how to change lifestyle, food, exercise and what other changes to make and how to assess if removing certain foods is helping your symptoms specifically. Other than just saying "eat less & exercise more to lose weight. And then we cut you up to lazer out the lesions + put you in synthetic hormone without any root cause analysis of what caused the whole thing to start with"😖😖😖
I personally have not gone completely gluten free, nor free of anything, but significantly reduced some of those suspected food groups. Especially bearing in mind that not all food items containing gluten equal the same. E.g. sugar glazed highly processed muffins VS wholegrain slow fermented bread. Our bodies don't react same to these, even though both contain gluten. Same can be said about many dairy products - live culture Greek yoghurt VS flavoured yoghurt, even worse if low fat - these are not the same thing for our bodies, even though both contain dairy.
Same can be said about fasting - there is good evidence to show that yes, some type of fasting can be hugely beneficial. But the devil is in the detail!!! Someone here commented as well that fasting for her had horrible results - the question no 1 is - how/what type of fasting did she do? There is clear evidence that indeed some ways of fasting can have negative effect on stress/cortisol levels for women. Whilst at the same time men don't have this reaction and can benefit from fasting. Women just need to approach fasting differently and ideally would have access to trained clinicians who are able to advise HOW to do it so that it's beneficial + able to measure hormonal response to fasting and tweak it to the specific person who they are working with as different people may react to fasting, or removing certain food groups differently.
It's so frustrating to keep reading how women time after time after time get given one or another type of synthetic hormonal treatment, then told to wait and see 3 - 6 months if it works for them.. and if not, then keep trying some other type of synthetic hormone and start it all over again. All the while we are not getting alleviation to period pain, our sex drives are destroyed, vagina dries out, we put on huge amount of weight, skin and hair end up messed up 😖😖😖
I really wish there were clinicians in UK that do actually know how to seriously treat food, exercise and supplements like medicine and monitor and advise women about it. If there are any out there, NHS or private, please do let me know as I'd so keen to reach out to one myself 🙏 But until that day... we have to keep educating ourselves via books, peer reviewed articles on PubMed, podcasts, YouTube...
My own research and self-experimentarion has resulted in reducing pain from 7/10 to about 4/10 which for me makes it bearable to go through period without pain killers (which in itself can have negative effect on our gut microbiome which in turn can make us intolerant of dairy and/or gluten - but that's a rant for another day). All the while my endo specialist private gynaecologist is telling me that nothing other than laparoscopy + synthetic hormones will help me 🤦♀️🤦♀️🤦♀️
so interesting. I am due to have mirena coil iud fitted next week but as I feel so much better now changing diet, I am worried it will mess up my hormones again and I will have all the side effects. Debating what to do as it does massively help my pain but clearly is masking it.
Fliss1234 let us know what you decide and how you get on, please 🙏 my gynaecologist is also pushing for mirena. I'm not as close to having it fitted yet as you are, but it's clearly where the gynaecologist is going with his recommendation. I'd be keen to hear also what your Dr's response is if you should decide to not go for it, or ask for alternatives.
The more I'm researching the topic, the less I feel I want mirena, or any other synthetic hormones. Especially if diet, exercise, supplementation, acupuncture & pelvic floor physio are all non surgical & non synthetic-hormone options that could be given a chance first...
Heyy, I’m really interested in fasting to help with my endo but I’m unsure of which type of fasting to do, I know the 16:8 method is popular but I can’t seem to find research on which fasting method is best for endo. Which method did you use? Xx
I listened to Mindy Peltz podcast and audiobook ‘Fast like a Girl’ - she explains all about fasting around your cycle and when to do it. I try to fast in days 3 - 14 of my cycle then lean in to more food the latter part before my period. Mainly doing 7pm - 1pm fasts at the moment which are making me feel good. Also having Accupuncure too which is also helping.
Fliss1234 Can I please ask how did you find an acupuncturist who you could trust to know what they're doing? I'm super keen to explore this a bit more as well, but not quite sure where to start and how to ensure that I don't end up finding someone who is actually clueless but claims to know what they're doing.
Livylou1112 it's probably also worth searching on YouTube for Dr Sara Gottfried. She's also been on Mindy Peltz's podcast, bur has featured on other talks & podcasts as well and is also into female fasting and how this differs from men's hormonal reaction. And how some type of fasting could cause problems for women and make things worse. I came across Dr Gottfried on Andrew Hubermann podcast which is another brilliant one to explore for more about hormones, gut health, stress management etc. Not endo specific per se, and often a bit men-centric, but a ton of good information there nonetheless. And Sara Gottfried also has some brilliant books about female hormones like "The Hormone Cure" - I've learnt so so sooooo much from her book about my body and what might be going wrong with it, as well as got super helpful starting points how to adjust my diet, what supplements to add. And even how to stand up for myself and ask doctors for things thay I want. Really worth checking her book out.
Amazing! I’m definitely gonna look into them and maybe get a few books as I’m really interested in having a better understanding of my body. I’m also curious about the mirena coil as I’m having surgery in a couple weeks and having one fitted during, will this alter how I fast? Can I fast whenever as I hopefully won’t have a period and my cycle will be synthetic? So many questions haha!xx
yes I’m also curious about fasting and the mirena coil in terms of when to fast as it’s not a natural cycle! Hopefully we can find out more and share after listening to these podcasts
8Definitely look into those books and podcasts recommended. Mirena is a progesterone only local IUD, but getting fasting wrong (or right) for you as a female could affect more than just your sex hormones (estrogen and progesterone). Fasting can become a stress to your body and this is affecting your cortisol levels which yeah, will affect progesterone as well and mirena could affect it. But heightened cortisol can have other negative effects on the body as well.
And of course, worth brining it up with the gynaecologist as well and if they have no knowledge on the topic then to ask for a referral for a endocrinologist and/or dietitian. Probably won't result in success.. but who knows always worth to ask. Or at least as the gynaecologist to explain what they do know and understand the effects of fasting whilst on mirena and potential effects on hormones. As well as to ask what their understanding is based on, and if they could refer you to studies that they are basing their recommendation on so you can read it yourself.
Absolutely! I’m sure there are resources out there which discuss fasting on birth control but I’m yet to find any. Would love Mindy Pelz to do a podcast on fasting with endometriosis where she talks about exactly the right times to be fasting and how birth control can interfere, would make life so much easier! And yes I will definitely ask my gynaecologist to see if they have any knowledge on it! Thank you xx
Hi Fliss1234, I am on an anti-inflammatory diet (no gluten, wheat, dairy, caffine, alcohol, sugar, processed foods). Have been for the last month. Just finished my most recent period and it was A LOT better! The pain was more of an ache and was managable with heat and normal painkillers. I had tried fasting before, but found it badly affected my pain so stopped. I am also receiving accupunture. I was advised to eat cooked foods and avoid cold, raw foods and drinks. Its harder for the body to digest, apparently! Also to make sure I have some form of protein in each meal to stop gluccose from spiking. Give this podcast a listen. I found it very helpful! drchatterjee.com/how-to-con...
Wow - super interesting thank you! At the moment I would say going wheat/dairy/caffeine and sugar free has been the best thing for my endo so far. Plus acupuncure and no more intense exercise the week before my period. But time will tell. In two minds about going back on Mirena coil as if I can manage it naturally i would love to. So hard to know what the next month is going to bring though in terms of flare ups.
Hi, changing my diet to gluten free has been the most effective treatment for me so far. It started working within a few days. Before I struggled with Endo-belly, bowel, and endo pain during menstruation so strong that I came very close to fainting breaking down in public unable to speak from pain and weakness. Later my bowel issues got permanent and often triggered endo outside of my menstruation. I'm still far away from being pain free, but do not have bowel issues, which is a big relieve.
Based on my own experiences I'd recommend to start cutting wheat first time 7 days before your menstruation starts until the last day of it. Document what happened. Then wait until a week before your next menstuation starts. Now you switch to gluten free diet until the last day of your menstruation. Again document what happened. If one of these trials has a notable effect on your symptoms push for diagnostic at your GP.
Hi, I feel your pain, I have stage 4 endo with it affecting my bowel, I’ve been suffering for years with bowel symptoms affecting my daily life, my gynie sent me over to gastro and believe I have IBS and they are working together, gastro has referred me to a specialist gastro dietitian and I’m currently on the FODMAP diet, I’m 3 weeks in, to my surprise I feel so much better, a lot less symptoms (just got to find out my trigger food) due my next appointments soon, I still struggle with bowel symptoms around my period and ovulation time, but compared to before when it was 24/7 I take that as a win, pain with endo hasn’t changed much but it’s early days, time will tell.
The diet is hard but when you feel the benefits it keeps you going hope you find something that helps, good luck
I thought my endo belly was a wheat intolerance and read it can come on after menopause, so started a wheat free diet. I immediately felt the benefit, so either way it helped. I have done intermittent fasting in the past for general health, but it can't harm again for this. I started feeling chronically bloated about 3 months ago and have since found out I have endometriosis and an ovarian cyst. I'm so desperate to help me feel less bloated, I'm going to go back on a gluten free diet.
Hi all, i just wanted to update on this. I had the Mirena coil fitted in July via hysterscope as i have a unusually shaped uterus. Since having it fitted I have had pain free periods and the inflammation in my tummy has calmed a lot. I have also had amazing results after having a DUTCH test and micribiome test and working with naturopath Bridgit. She tested me and found I had excess oestrogen, cortisol was out of whack, vitamin D deficiency and glutathione was low. She prescribed me lots of strong (and expensive..) supplements and i am doing a gut healing protocol. It has been amazing - she has helped me so much and these changes are healing my hormone imbalance caused by endometriosis. I wanted to recommend her to all, shes not cheap but its worth the money I promise: bridgetbnaturopathy.com/
Hi, so glad to hear you’re doing well! Just wondered where you were at with fasting? If you’re still doing it or if you’ve found other methods as I know we spoke earlier about how we were both unsure if we should do hormone fasting with a mirena coil x
I have stopped fasting after my naturopath said to stop as it was stressing out my body. Managing stress and cortisol is really important for endo. I always have breakfast within an hour of waking and three solid meals a day, this has stablised my blood sugars and is better than fasting. Just make sure breakfast is high in protein! I think the mirena has massively helped me too, so I would still recomend that
Ah I see, I got the coil a few months ago now during a laparoscopy and it has been good so far, my last period was hardly there! As for fasting it’s the only this that has helped with my bloating so I think going to still try and keep it up, I’ve been doing 16:8 everyday but I’m going to tap into hormone cycling more as I feel it will be more beneficial for weight loss. Oh and I’m going to consume more protein!x
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