Hi, I'm new here

I'm a 50 year old female Canadian, I have not been diagnosed as celiac or coeliac as you say in the UK with a gluten sensitivity officially. I recently began eliminating gluten on account it is recommended as a helpful guideline for endometriosis sufferers. And I know it works. I tried this once before about 14 years ago but it was much more difficult to follow back then as items weren't as readily available as they are today. I noticed then a lot less inflammation and since I seem to be getting nowhere with the medical community for help with my pain and because I am intolerant of artificial hormones and pain killers don't mask my pain I'm choosing the only options I have the power to follow.

I have also recently been told I have to lower my triglycerides and cholesterol levels as well and because my exercise has been reduced due to pain, lowering my body fat by way of eating right will also help.

I have also chose to eliminate meat due to the likelihood of added steroids or antibiotics, eggs because they may contain the chemical residue of dioxin, fats because they stimulate inflammation, caffeine because it may increase estrogen levels, refined sugar and honey I've replaced with Xylitol because artificial sweeteners are so bad for you and in me they cause depression due to the phenylalanine. Plus they just makes you feel hungrier. And none of them are pleasant tasting including stevia. This is much less noticable as an alternative in the decaf coffee I refuse to give up, as it is one of the few enjoyments I have left.

This is not how I want to live my life. I am sorry to say, I know the politically correct me is supposed to say only positive things about this lifestyle change but I enjoy a slab of ribs covered in BBQ sauce from the grill. I love theater popcorn, I know these things do my body no good and can stimulate sites of endometriosis , increase cholesterol and triglyceride levels but food is a passion for me and tofu really turns me off. As a wife and mother it has been my calling card to serve delicious meals to keep the family happy I'm still preparing my husbands meals that I can't eat and sitting beside him at the movies while he enjoys the popcorn, it seems unfair that I get to satisfy my quest for crunchies with carrots and celery when what I really want are nachos with melted cheese or potatoe chips.

Is life really worth living without the foods that I have grown accustomed to my entire life. It is practically the only remaining friend I have left after having no career outside of the home due to endometriosis. My husband works away from home, my son has found a girl there in the UK and is living there and getting married next year, luckily i still have my daughter at home whom is also following the gluten free diet as she suffers horrendous gastrointestinal pain. So she's helping me with some inventive new recipes but honestly I'm just not happy with the cost of these foods and I get stuck in a rut due to all the other eliminations I've had to make.

I'm sorry for venting but surely I am not alone!?

13 Replies

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  • Hello there

    I will ask a simple question: can you have a hysterectomy? Would this not solve the endometriosis problem? I had endometriosis really badly too, and it caused infertility. Following laser ablation surgery I had Prostap injections which stopped the production of hormones and put me into a chemical menopause, can you ask about that? Or is that an issue with your sensitivity? What helped me in the end was going into the (proper) menopause!! It was a relief I can tell you.

    The diet you're following seems to be making you miserable, is it the right choice? Can you can buy organic meats that are not filled with steroids, use coconut oil, organic free range eggs? I ask as I don't know the answer.

    I hope someone on here can provide an answer for you, what a terrible situation to be in.

    sdm x

  • Thanks for your response sallydogsmom,

    I already had a hysterectomy in 2003 for adenomyosis. I was good for close to 11 years practically w/o pain. But it seems to have returned with bilateral ovarian cysts and I am doing everything in my power to lower my estrogen levels naturally. It isn't actually just the added steroids and antibiotics but also the fat in animal meat that contains estrogen as well. As long as we have estrogen in our bodies be it produced by our ovaries, stored in our body fat or from our pituitary glands endometriosis can still be possible even after a hysterectomy.

    I'm not always miserable, yesterday I just needed to rant. Thanks for reading. But you're right! And I will eventually start reintroducing things gradually once I get those blood levels down, and am pain free enouph to pick up my exercising like I had been doing. That is the hope anyway. I'm seeing a specialist Dec. 11 for a second opinion because, yes I am too sensitive to the options the other gyne gave me of GNRH or Visanne. Plus I have been diagnosed with osteopenia so I don't want to jeopardize my bones any further. Also the prostrap you mentioned which is Gnrh will only be administered for up to six months in most cases, that won't get me to natural menopause so that is only a temporary solution. It is also risky because what it does from my understanding is not only cease your hormone production but completely shut down the pituatary and there is a chance with that that one may never fully come back from that. It's not explained well to patients recieving it hat the risks are. I'm glad you never suffered from it, there are many who take it successfully. I couldn't even take birth control pills because of the side effects. I am very weary and they made me more depressed. Plus I got sore breasts, stabbing pains in the legs and chest, headaches, back pain, and they never helped for the pain of menstration which was the reason for taking them.

    Sorry for going on so long, I hope I'm as lucky as you with the transition to menopause cause to be honest I was a holy terror with PMS and it caused a lot of stress in my marriage, I'm afraid menopause will be like that. I've witnessed women become like that through it. And I've warned my husband to be on alert. Haha.

  • Don't worry about ranting! I felt much the same yesterday, and was sobbing because I'd eaten some chocolate and it had gone through me in record time - who knew osmotic diarrhoea was soooooo quick?!! I Know, I know, I'm not supposed to eat chocolate, but I was miserable and wanted to be normal...........won't do that again.

    I think many people on here feel at their wit's end, having suffered over the years. I've had a never ending series of illnesses from the age of 23 when I developed rheumatoid arthritis, then endometriosis, thousands of gynae issues, infertility, numerous arthritis related things, coeliac disease, then to cap it all last year an allergy to bees. That one's terrifying.

    I hope the menopause is good for you. I was lucky I think as I'd already had 3 chemical ones (for IVF then to treat the endo), so I knew what was in store and was prepared to knock back as much HRT as I could. However, it sort of fizzled out in a couple of years. The hot flushes were horrible at the time, but giving up alcohol and gluten (developing coeliac happened as i went into menopause) stopped them too!!

    You're right about the Prostap, it worked for me, and I did get through it okay even having been on it for a year!!!! the final time. Some people don't ever recover. But, obviously you'd never be able to take it with osteopenia.

    All the best,

    Sdm x

  • Thanks Sdm,

    I really have it pretty good, my husband likes that I am at home rather than working, I know it sounds 1950 ish but I did the retail thing for many years throughout my two pregnancies and then my adenomyosis and endometriosis and found the public to be quite cruel. Not all but there were a number of clients, I worked in a cosmetic department and they were very judgmental. Being that you suffered with endometriosis as well I figure you know what I mean. They would constantly question if I was pregnant again. I weighed 115- 120 lbs. then, ridiculous. But the body does look bloated with endo and since I did carry out the two pregnancies in the same place they thought they were being jovial I guess but i was undiagnosed figuring I had ovarian cancer or something through most of it. I don't miss work and I keep to myself apart from my husband and kids, so having this forum to vent helps. I met an interesting woman in Costco later yesterday who told me all about her experience with cervical cancer. It all started by looking at the lighted deers on display. It's nice to talk to people who can understand suffering. Getting your and the others reply was nice too.

  • Hi

    I also had endometriosis as a younger woman and luckily enough a hysterectomy did cure the problem, although I know that this may not always be the case.

    I agree with Sally about the problems with food. You should be able to buy pastured meat over the internet if you do not have a local supplier or farmers market. I would regard olive oil and butter as healthy natural fats, that raise the healthy cholesterol in our bodies. Damaging LDL is raised by processed/refined carbs. Do you think you would be able to have just a little of your favourite foods to stop you feeling so deprived? I can manage one filter coffee a day, with cream, to satisfy my needs.

    I don't buy ready made gf products, because of the additives and the cost. If cooking has been your passion, perhaps have a look at cuisine from other cultures that is naturally gluten free?

    I hope you can resolve your problems. Perhaps have a look at the Autoimmune Protocol. It may be that after a period of elimination, you will be able to re-introduce your favourite foods.

  • Thank you Penel,

    You gave me a lot of good information there to look into. As I told sallydogsmom, I have had a hysterectomy back in 2003 and was pretty good for a long time. But recently I had an mri for my hip and pelvic pain that showed bilateral ovarian cysts. Once has burst since, excruciating but I went to the hospital and they gave me a torodol shot, amazing! I wish I had known about that for all of the other ovarian cyst ruptures I had endured int he past with the lingering pain. This stopped the pain dead in it's tracks even after it wore off no more pain from the cyst rupture.

    I also showed bilateral bursitis and they tried corticosteroid injections but it did nothing. Then later a physiotherapist diagnosed me with sacroiliac joint dysfunction and i went and got corticosteroid injection by fluoroscope and that didn't work either.

    This is all typical for an endometriosis sufferer, they say on average you will receive 11 misdiagnoses and it will generally take nine years for proper diagnoses. Thing is I've already been diagnosed and I told the GP from the start I knew it was endo again but they insist on taking the long way around it. So frustrating. Then they tell you I can't send you for anymore tests, which makes you feel like they've given up on you and they think you're a hypochondriac or something.

    I'm of Ukrainian ancestry, wheat is practically our mantra! Ha ha . I don't know of other cultures that are gluten free I can bake g/f but at this time I am just purifying my system to see if it helps I imagine by the time the holidays roll around I will have to give in to some indulgences and yes I'd rather make it myself then I know what's in it doesn't have some long word I can't pronounce.

    Where do I get this autoimmune protocol you mentioned?

  • Sorry to hear you've had such a tough time.

    Have a look at Paleomom for the autoimmune protocol. I bought it in Kindle form to see if it was relevant to me. I found that I needed to cut down on food from the nightshade family.

    thepaleomom.com

    I was thinking of Indian or Latin American styles of cooking, as being naturally gluten free. It's difficult to change the type of food you have been used to for years. I have discovered buckwheat flour and groats, which has been a useful addition to meals.

    Good luck with purifying your system. Hang on in there.

  • There are safer sources of protein - you can google your location and "grass-fed beef" and will find lots of options. You can choose nest laid eggs, or eggs from chickens not fed antibiotics. I live in Canada too, and am able to find higher quality protein sources like that. Unpasteurized honey is an excellent and natural source of sweet, as is pure maple syrup. They still need to be consumed sparingly, but provide you with other options besides xlitol. You can also find some great recipes to sub for the foods you miss. Try againstallgrain.com, elanaspantry.com, nomnompaleo.com, everydaypaleo.com. Let Google be your comfort and remember that it's much easier to be a great mom and wife when you feel good on the inside.

    I don't have any experience with endometriosis so you can listen to the other ladies about that :) Best of luck.

  • Thanks Karen77, my fellow Canadian!

    I have a freezer full of meat from my husbands hunting trip a year ago. You probably understand being Canadian. I know it's much safer than store bought but it still has the animal fat that I should avoid at this time. The other stuff we had processed into jerky and sausage would be too high in salt for me. When I am ready to start reintroducing eggs and such I will do as you say and look for a farmers supply of such. Good idea.

    On the endo resolved diet site there is a long article about why it is not safe for us to use honey, apparently a lot are claiming to be certified organic, there is a possibility that they may be pollinated by GM crops. Gee what's this world coming to!

    Even when you eat well you can still be harming yourself due to pesticide sprays and waxes on the skins of fruits and vegetables. It all seems a little too anal, would you agree?

    I'm not that bad, I know I came off a little bitter yesterday, it was just one of those days but I assure you my kids and my husband love me even if I am a Debbie Downer at times. Normally I enjoy a good laugh and being a goof ball.

    Thanks for replying, I'm in Alberta now but formerly I grew up in Manitoba BTW.

  • Hi Giveme!

    I'm in Ottawa, grew up in Southwestern Ontario. I'm quite jealous of your freezer and have been quietly encouraging my hubby to take up hunting with a friend of his :D I didn't know that about the honey, but I guess I'm not surprised. We bought into a CSA this year, so the majority of our produce has been local and organic. I definitely feel better eating this way. We also go to a butcher for grass-fed / pasture-raised and antiobiotic-free pork, poultry and beef.

    We're allowed to be Debbie Downers by times, especially dealing with these types of pains. I definitely think you need to do what you can to make your food situation tolerable and take care of yourself. Best of luck.

  • We live in a small town and in summer and fall there is a garden market every Wednesday here, I guess I'll be taking advantage of it next year.

    I looked up Community Shared Agriculture and there were a few listings around here, so thanks for that information, I'd never heard of it before.

    I sure miss the lakes of Manitoba for catching fish. Hope you are taking advantage of your lakes out there. Not much here for bodies of water in comparison and to buy say pickerel in the store is a occasional extravagance.

  • Hiya...

    I hear you :) I'm allergic to tonnes of stuff, and I pop on here from time to time and I fully respect all the comments and incredible efforts of other users.

    However I approach it differently... 90% of the time I'm good and don't eat what I know my body hates - and the other 10% I share out, over a period of a year, and treat myself with little bits here and there.

    I know what the effects will be and I make sure I'm prepared to cope and oh boy, imo it's worth it.

    I say: balance all things

    :)

  • thanks for responding lisa2906,

    seems there aren't too ,any people reading posts lately, probably busy putting up Christmas tree's and shopping. It's nice to get feedback. I'm not sure if this is true but with gluten I've heard it takes 4 months to clean out your system once you've switched to gluten free, but i don't know if ingesting a little bit after that would also take another 4 months or not. I've only been doing this for 7 weeks but it feels a lot longer, I have however lost 9 pounds not just from eliminating gluten but also meat, eggs, all processed foods. This is to relieve pain due to endometriosis, so far it's not working but i am having some less painful days so I keep plugging. It's going to be a challenge through the holidays though. Good luck to you.

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