endo diet

[serendipity6954]

Is anyone following the endo diet and noticed much improvement? I am unable to have hormone treatment so am willing to try anything, even giving up my beloved coffee.

[worth71]

I haven't tried it, yet, but I'm researching it, and I'm going to try removing one type of food at a time for about a month and see if there is an improvement, as to remove all the suggested food groups I wouldn't know what to eat lol, but I also think that not all of them may cause issues so that's hwy I thought one at a time, and I'm pretty sure already that wheat is one of my demons - and is decaf coffee allowed I wonder? I've cut out Pepsi max, I used to drink loads but the last two weeks I haven't touched it, tried some tonight and it tasted awful, how weird is that lol xx

[Jessicaseven]

Hey, I have been following a wheat and gluten free diet for the past 3 months. It's been hard finding thing to eat/not and craving foods you can't have but it's definitely helped me! I can't manage to go the full hog and cut out dairy as think I would fade away!

Hope you have success in trying the diet! Xx

[niamhnimhaolain]

Hey there. I am lucky/unlucky enough to have been diagnosed with Coeliac disease in 2007, but was still having problems a year on so went dairy free. I was only diagnosed with Endo in January after 5years of random, gradually worsening pain and a lifetime of awful periods that I assumed were normal until I discussed it with my friends. I am fortunate enough to already have been on the recommended diet but I had no choice in the matter of cutting every last thing completely. If you're having trouble with the whole knowing what you can eat and what you can substitute foods with, use the Coeliac Uk website as a reference: coeliac.org.uk. It's all about doing it slowly otherwise you will get the cravings and withdrawal headaches and friendliness. Making things from scratch like sauces and gravy, avoiding things that you wouldn't necessarily think like crisps and soy sauce is all part and parcel to it. Most major supermarkets have "Free From" sections with bread, pasta and biscuits etc, that are decent enough if you're a person with little other choice. Meats and vegetables generally are naturally gluten free. There are plenty of websites giving you recipes and food guides and if you're in doubt you can always pm me, I can advise you if you want and send you the recipe for my double chocolate fudge cake (which by the way is gluten free and dairy free :-D) which will make you feel a little better with chocolate overload.

[Emhunter]

Hi there, from all I've read and experienced it's slightly different for everyone but for me cutting out gluten (particularly), processed foods and caffeine has made a radical difference, although it took me a while to figure it out!! Initially I didn't cut out gluten as it seemed such a big step but I've easily gotten used to it, especially as it's meant the difference between being unbearably bloated and painful after eating even a small amount of food, to not really having any digestive problems at all. I've also reduced egg, soy & dairy though not eliminated them completely, and all this seems to work for me - but it may be different for you so it's definitely best to try a process of elimination. I'd say it took about 4 weeks (once I'd finally got it right) before I started to feel a real difference, 4 months in and I've really felt the benefit - and also some reduction in extreme period pain/cramps which is a very welcome relief!! (Normally I'm bed-bound and at the verge of passing out for at least the first 2 days). I'd say if you're choosing one thing to eliminate first start with gluten - it most commonly seems to make the biggest difference (don't do what I did & leave it til last)! Good luck, really hope it helps XxX

[kellykeloggs]

Hi I'm researching the diet at the mo but my 2 main concerns is 1. What the heck CAN i eat! lol but the other is on my 2nd out of 6 lots of prostrap so if i start the endo diet now how can tell if the injections are making the difference or the endo diet or is it better to wait til the end of the course of injections? Any advice ladies?x

[cjb-75 in reply to kellykeloggs]

From what I've been told, it'd be better to start sooner, it takes time for the nutrition to kick in, and in a way does it matter what makes the difference? See below, but I've just finished the prostap and I'm trying to conceive and wish I'd started the diet months ago!

[cjb-75]

I've been on the diet for 3-4 weeks now, and have just finished a course of prostap and had a 2nd lap where they couldn't remove everything. I've stage 4 endo, am desperately trying to conceive a 2nd child and would love to be pain free for me. (My consultant had given me 6 months to conceive and then recomends pelvic clearance!!!!)

I used a nutritionist called Dian - details found endometriosis.co.uk/ she did a skype appointment for me, and I used her on recomendation from a friend studying nutrition and another who also used Dian and followed the diet for years for endo and also adenomyosis.

For me personally, I've not found it that hard,

I've gone wheat and cows diary free, am limiting soya and cut out orange/grapefruit and am buying organic as much as possible. I'm also taking a multivitamin, fish & evening primrose oils, vitamin e, magnesium malate and probiotic capsules! I'm rattling around like a pill cupboard!

I've substituted bread and pasta for gluten free varieties, I bake and experiment a lot at home as well. A friend bought me the "guilt free gourmet" cookbook and the chocolate (avocado) tart recipe is to die for! It's much harder when out and about, but if at restaurants I go for the fish and salad (as I have to increase my fish intake). I also now use sheep yoghurt and cheese (as I don't like the taste of goat) and I've been using almond and coconut milk on cereal for a while as my little girl is allergic to cows diary. I think it is more expensive and does take a while, but if it works it's a hell of a lot cheaper than IVF, and it can't do me any harm.

I've got my first period today, and so far I've got intense aching and nausea, but none of the debilitating cramps that left me flat on the floor.

If you're going to do it. I'd strongly recommend using a qualified nutritionist and one who specialises in endo, you'll get a personal report, support and recipe suggestions but most importantly reasons why to cut out certain foods....

[kellykeloggs]

Thank you for your reply. That's very useful advice. The one thing I am learning is that endo is one very steep learning curve. But somehow it feels much better the more knowledge and understanding I have of it! Thanks again!

[serendipity6954]

Oooh thank you everyone for your help. I am trying to reduce caffiene by going decaf and using green tea. I have also substituted cows milk for hazelnut which is lovely in coffee. Strangely enough in a bid to lose weight I have swapped my usual breakfast of whole meal toast or a bagel to Greek yoghurt with forest fruits which are both recommended for us. I don't really like brown rice so will try wild. After the pain I had this week I am willing to cut it all out. I am hoping it was only as bad as it is my first since being sterilized and that is when they found the endo. So fingers crossed this will help as I am already dreading my nextperiod as it is due 2 days after I am going Manchester for gig and staying over. It has an uncanny habit of appearing late or early to spoil myplans xxx

[thesecretlifeoffeet]

Hi,

This is all very interesting information! I wonder if you can help me clear up a bit of confusion for me though.

My family and I decided to start following the Paleo diet in about August last year. It sounds very similar to the main principles you have mentioned above - no gluten or dairy. In addition to this, it cuts out sugar, soya, potatoes, rice, oats/cereal and legumes. Although I found this quite a severe diet to follow to start with, we worked together and managed to find lots of lovely alternatives. I lost 2.5 stone and felt much better after a while. However, as I lost the weight and got better at eating the right things, my endo got progressively worse until around December when I couldn't cope with it any more. I was given a book 'take control of your endometriosis' by Henrietta Norton by my step-mother who also suffers with severe endo, which suggests that eating things like soya can actually help to reduce the symptoms of endo. I re-introduced soya into my diet and the pain was much better during my cycle that month. I'm not sure if this is a total coincidence, or if removing all of those foods really had a big impact. Another factor confusing the issue is that I fell pregnant at the start of January. I don't know how the different foods really affected me, but the reduction in my pain and conception right at the time I abandoned the paleo diet seems like a massive coincidence if it is one.

Interestingly, when I asked my doctor about how diet could affect endo, she claimed not to know anything about any links between endo and nutrition.

I would be very interested to know what foods you ladies think helped (eating or avoiding) and in any links to information you have found particularly useful.

Thanks.