This topic contains 16 replies, has 2 voices, and was last updated by Roberta Bylski Roberta Bylski 6 years, 10 months ago.

Viewing 15 posts - 1 through 15 (of 17 total)
  • Author
    Posts
  • #8433

    Greetings,

    Welcome here. Are you gluten free, I guess I expect you are trying? I had celiac symptoms for 30 years and find myself intolerant of many foods as you are. Removing all gluten from the diet is a tremendous advantage if you have some problem with it.

    I use mango in recipes calling for tomato sauce. I use coconut or nut milk instead of dairy. I use eggs in place of cheese on pizza. You can still have good food. Your body may need extra caution for some time to recover. Usually for every food I remove from my diet, I gain several substitutes. Thus, I think my diet is more varied than ever. Yours can be too with time and effort.

    You will heal as fast as possible if you:

    Avoid gluten in your diet.
    Find out what your intolerances are and avoid things you are intolerant to, or rotate diet if it is impossible as it is for me.
    Find out what supplements will help and take them.
    Get excercise and sunshine.
    Find a health care provider that is supportive and natural minded.

    You might take a while to get going on all of these things. Just keep walking down the road and learning as you do.

    Oh, to make a post. Click on the category you want. You could have clicked on, “Introduce yourself” for your first post. You might still want to do that. Then click on Add new topic. After those it is as easy as what you have done by making a reply. For nearly all posts I pick the category of gluten free all of the time. If you want to give us your secret recipes, it would go in the recipe section.
    Get well, get well,
    Diana

    #10188

    Diana,
    Thank you so much for responding. I have such a long story regarding all of this, but in short, I went gluten free 4 yrs ago when my daughter was having issues and was told to stay off gluten. My fibromyalgia had been so painful and made me so sick for the past 20 + yrs (I thought) that I was willing to try anything. So I went on the diet with my daughter and to much of my surprise, within 36 hrs my horrible pain and feeling ill (including severe vertigo) had basically disappeared. It was like someone had given me a muscle relaxant and a nerve suppressant, without drugs. Nothing any doctor or treatment had ever been able to accomplish. I have never been able to take drugs so I just relied on massage therapy and chiropractic every 4 weeks to keep toxins flowing through and keep me out of bed. I developed severe candida after a yr on the GF diet. Bottom line is I was diagnosed through an LEAP-MRT blood test (130 foods, 20 chemicals) with Multiple food and chemical sensitivities in Sept ’12, I also forgot to mention at that point I was diagnosed with systemic candida/leaky gut. I am also a 11-1/2yr breast cancer survivor (with all the surgeries, chemo etc. I believe it made everything worse). Have been avoiding all foods and chemicals sensitive to which ends up being like 80 out of 150. I have to watch a lot of foods because of the chemicals found in the food I am sensitive to, eg. I can’t have egg yolks, soy or corn which have lecithin (which I react to) also sunflower, peanuts have it too. Any form of MSG etc. There is a long list. I can’t have nut milk unless I make my own from scratch (along with everything else) due to the other ingredients. I use almonds for everything needing nuts, but have to buy organic raw, soak them in reverse osmosis water to detoxify them, take the skins off each individual one before grinding them for flour or eating them. Things on my list of non reactive foods (which is not much) most of them set off my candida (this is getting slightly better though). I can’t have any form of sugar (even natural, fruits etc.), rice,corn, chicken, pork, turkey,lamb (have to eat grass fed beef), egg yolks, dairy, legumes, beans. I can’t even drink anything besides reverse osmosis water. I can’t even add lemon or anything into my water for a different taste. I don’t know what else I could try at this point. When I have tried or try different foods, not on the list, I just react. It is crazy. As far as suppliments go, I have not had luck finding any without some form of chemical/additive in it that I am sensitive to. I research every day for natural foods for digestion and healing candida/leaky gut. This has been my life, consuming it, for the past yr. My husband doesn’t help, since he believes that “a couple of crumbs won’t kill me”. Of course I know I am more than likely getting cross-contaminated by him. I can’t get him to realize that I am doing the best I can but that he could be keeping me sick. I have told him that I don’t know if it is what I am eating or what I am being cross-contaminated with that is keeping me sick. He doesn’t want to hear it, if it means he has to change anything. Stress is a huge factor in all this, which I have been to counseling to learn to reduce this.

    Now that I have talked your ear off with just a portion of my history, going back to the foods, I am running out of options for food substitutes, since there always seems to be something in the substitute I can’t either tolerate or it sets my candida off. I am trying to gain weight or maintain what I have, but it is hard to due when all u basically can eat is greens and things without many calories.

    Thank you so much for listening and if you have anymore suggestions, please feel free to let me know them. Also, thank you sooo much for telling me how to post on this forum. Again, I am not even on facebook and it took me forever to even figure out how to respond to your posting. I guess we all live and learn. Thanks again and have a wonderful day.

    To a Happy and Healthy New Year,
    Roberta

    #10194

    “This has been my life, consuming it, for the past yr. My husband doesn’t help, since he believes that “a couple of crumbs won’t kill me”. Of course I know I am more than likely getting cross-contaminated by him. I can’t get him to realize that I am doing the best I can but that he could be keeping me sick. I have told him that I don’t know if it is what I am eating or what I am being cross-contaminated with that is keeping me sick. He doesn’t want to hear it, if it means he has to change anything. Stress is a huge factor in all this, which I have been to counseling to learn to reduce this.”

    Oh, so sorry. My husband doesn’t seem to really get it either. He isn’t unloving just uninformed and unwilling to study it for himself. He did accept that I have a problem with gluten. We don’t cook it in the house anymore. He tolerates allowances for it, but he is not happy about it. I am not the gladdest “volunteer” in the world either. I feel like I need a guy doctor to call him up and instruct him. Sometimes he decides to really support me emotionally and then I can soar. Hopefully, it will all work out. The Celiac diagnosis wasn’t on the marriage contract it was a surprise!

    Your life “consuming you” for the last year. I hope you are going to fly now! I have been at the “health race” for much longer. There are so many things to try. Keep on keeping on. I just quit buying grains since I do most of the shopping. I was reacting to stuff airborne, so what choice did I have?

    I guess I need to check this forum more often, I am working my way up with my number of posts and only need 16 more to catch the next highest poster!

    Diana

    #10196

    I think I didn’t really explain how long I have been working at this, but since the gluten issue was figured out 4 yrs ago I thought I had it pinned down. Obviously I didn’t and these other issues were diagnosed. I have struggled with being “sick” my whole life. It has just been in the past yr that I have had allergens removed from my diet/airbourne, as much as I can humanly help. I have always “eatten to survive” instead of people who “survive to eat”, if you know what I mean. I truly believe that my cancer and cancer treatments really did me in with my gut etc. I have 3 other sisters with issues, my oldest with a lot like mine, but not as severe, because I am the only one who has been through cancer (runs in our family, BRCA1 mutation, breast/ovarion cancer gene). My grandmother, mother and one aunt passed away from this and my other aunt, cousin and myself are survivors, so far.

    You are lucky to have a husband who allows you not to have gluten in your home (even if he isn’t happy about it). Mine tells me it is my problem not his so he shouldn’t have to do anything about it. I have been told several times that he is tired of having to deal with my allergy/sensitivity issues. He has been told by the health profession what needs to be done, but again, I believe he doesn’t care since he won’t do what I need to protect myself. He will tell the professionals that he is all on board, he will try for maybe 2 weeks then goes right back to what he was doing (which is cross-contaminating me). By the way my 18 month old granddaughter has just as many issues as I have. I feel so sorry for her because her doctors/allergist and not even my daughter (her mother) will listen to me about leaky gut, so she will never get better. I just wish I could get my husband to fully support me like I did when he had stroke level blood pressure 6 yrs ago and I got it down with diet and exercise (because meds weren’t helping it, it was the sodium and stimulants including alcohol abuse). Anyway, I do have my down days because I feel like I am so drained (24/7) trying to find things to eat that don’t feed my candida or make the leaky gut worse and also hoping I don’t become allergic to any more foods or chemicals. Sometimes I feel like I need to be in a bubble, if you know what I mean.

    Thank you for your support. It is comforting to know that I am not the only one going through this (which I already knew) but sometimes I just feel like I am in this by myself. I worry so much for my granddaughter though since no one will listen to me and they think I am crazy. This monster is being passed from generation to generation and it has got to stop, just like our breast/ovarian cancer in the family.

    If there is any time you need someone to talk to even if just to vent, please I am here for you and thank you for being there for me also.

    Hope you have a great weekend and as always, please feel better.

    Thanks so much,
    Roberta

    #10197

    One lady told me that she set up herself a seperate kitchen. This can be done with skillets, crock pot, and hot plates. “Counters” can be made from folding tables. A small refrigerator can be placed there. A large pot can be used for washing dishes. I set up in many different hotel rooms and make it work. Maybe you can buy the peace this way and help keep yourself healthy.

    I started bloating 30 or so years back when I was 19 after a bout with Mono. I thought maybe I was just putting on some weight.

    I also have family who won’t listen inspite of symptoms and the genetic tests. However, I was told to hang in there, if they see improvement in you, they may begin to listen.

    Thanks, I am feeling very well–very well.

    I also ha

    #10198

    Thank you for your information. I have already been doing those things. I have a separate fridge/freezer (but have to walk stairs up and down every time I need something). We have a very small kitchen with hardly any counter space. There is no room for any folding tables as well. I have separate cupboard space, but there is only one space for silverware and utensils etc. He always seems to get his hands into my space, then acts like he didn’t (he won’t take responsibility for his own actions, which is very frustrating, even if I watch him do these things he will deny it then get mad). I have to always watch what he is doing and have to cook everything myself, without his help because of fear of cross-contamination. I also have to put all clean dishes away after going through the dishwasher because he has a tendency to put things down on his side of the counter and then pick them up and put them away. So, I have done everything I could think of to protect my self, including getting my own toaster and electric can opener etc.

    Regarding weight, I have never been able to gain any weight until I had cancer and ended up with a total hysterectomy (as a preventative for ovarian cancer and because my cancer grew strictly off of estrogen). I had gained 20 lbs then. Went on a diet, when my husband had to lose weight, to support him and lost 15 lbs. That was like 6 yrs ago and lost the rest when I went gluten free and have yet to gain any weight back. I might gain a couple of pounds, but that is only when my candida flares up and I feel horrible again.

    My husband says he sees improvements but that it comes and goes. I told him that is because “when it goes” there is an issue and he isn’t helping it. I don’t know if it is what I ate or something I have come into contact with. But of course he doesn’t get it.

    Because of your encouragement, I am not giving up, like I felt like doing a couple of days ago. I went to the store yesterday and am going to try new things. Thank you for your support and encouragement, it means a great deal, again since I don’t feel like I am going through all of this by myself. I had no support after the initial cancer surgeries (from my husband), so this should be no surprise that he doesn’t support me through any of this too. My husband just doesn’t understand that I was diagnosed with my cancer exactly 3 yrs after my mother passed way from hers (and I took care of her at the end). He said the cancer treatment was done so now forget about it. I was gutted like a fish (have no female parts left in me). By the way, we have been to counseling a few times, but he won’t follow through with it. We have been married for almost 30 yrs now so there is a lot of time and energy invested here.

    Well I need to try eat something right now, but thanks again for everything.

    I forgot, if you already told me, but how long ago did you go gluten free and how long did it take your husband to climb on board?

    Thank you so much, again and you have yourself a great day!

    I am so glad you are feeling very-very well! You deserve it!

    #10199

    I am glad you aren’t going to give up. I am glad to be able to help.

    I have been trying to fix my health for 30 years. My main symptom was fatigue, but looking back I realize it was much more. 20 years back I was home schooling from the couch. I got rescued by chiro’s supplements, but later quit. Five years back I would fall asleep between words on a spelling test!

    Actually, Five years back, I was dying. I got on supplements (Chiropractor recommended) that lowered my high blood presure and stopped my pulse from dropping into the basement when I stood up. I think these supplements helped me to tread water. BUT we didn’t know about the celiac. I have no family history of celiac, so it was a surprise.

    My chiro asked a couple of times if I was still eating gluten. Then I looked into gluten stuff. Gasp, maybe this is it! I thought. I went traditional gluten free and soon realized I was reacting with dizziness and bloating when barley was in the room. I went through withdrawl symptoms which included fatigue, depression, and irritabitlity. I thought it would be good to have some testing, but discovered you can’t be on a gluten free diet when you have a blood test. I decided the genetic test was for me. My positive results came back with helpful information about Grain free, (About 6 months back) so decided to go that stringent for a while. I began a new batch of withdrawl. I found myself reacting to airborne rice being cooked on the stove. I am not planning to go back to grain anymore.

    My husband supports me financially. He has allowed me to change diet over the years. He has started our organic farm and gardening. He still can’t relate to my lack of physical energy. The guy feels invigorated after weeding the raspberries for hours! He just excerts himself as much as desired. I plan things like how to get my refrig at a level that I can reach it easy. How to reduce the number of steps in any physcial activity. When I say my husband is on board to some degree he is. I still long for extra support because of the hardships I am going through. A mother has to do her job even when she is sick.

    ONe does have to keep in mind what the husband does, do, rather than what they are not doing. I have trouble with that. It was atleast a couple of months after gluten free before he told me he now believed that I had a gluten problem. He admitted that he didn’t know really how serious it was. He doesn’t understand that yet. For my part I wouldn’t want to live with me.

    I have 6 children living at home. Most are genetically related and they certainly have the genetics for celiac. Some are starting to notice that acne occurs when they eat out. My youngest children help care for me. They ask if I should be eating this or that today. Caution me from mistakes! They also don’t mind my gluten free cooking and actually like it. My eldest daughter recently helped me to make a rotational diet schedule. At first I didn’t think most of my family could eat gluten free foods. Now, I get some help with it. I would insert smiley, but I can’t.

    Okay, Roberta, this isn’t the most private contact method, but it has the potential to help others at the same time! Anyone is welcome to have their say if they wish.

    Diana

    #10200

    Diana,
    I totally hear what you’re saying. I too am a mother and a grandmother who has always looked out for everyone else but myself. That seems to be the most frustrating thing. I don’t know if this is an issue for you but sometimes we just have to find time for ourselves to do what we need to do in order to make ourselves better. Every time I turn around (having grown children myself and when they were growing up) someone always needed something. Even when all I could do was to crawl around because I was so exhausted or dizzy, I would just put up a front, being a mom, and keep pushing forward. We just have to learn that it is ok to let people know we have to balance our day, in order to get through it. My children too have issues with gluten/leaky gut, but since my husband made it out to be a joke (at the beginning when I discovered the gluten) now my children don’t take it seriously, even though I see the same symptoms they are having that I had at their age. It is so sad to watch, when they won’t listen to me. I don’t want any of them to get as bad as I am. I know how hard it is to deal with all of these issues, when u still have children you are caring for, at home. As they get older, it will get easier, but it is still tiring trying to get through day to day when you are responsible for caring for other people and trying to get yourself better. Trying to get ourselves better takes 24/7 commitment. We need to take a deep breath, clear our heads and take a minute at a time, if that is what it takes to get us through this. Stress is a major culprit for not being able to totally heal, in any illness, especially this one.

    I am so glad to hear that you have support from your children (even though as a mother we don’t want to put that burden onto them). I am so glad they enjoy your gluten free cooking. It is so much healthier for them and they will thank you later in life. Even if our husbands don’t understand this or don’t support us all the way, we still have to focus on ourselves. As I was always told, if you don’t take care of yourself, then you won’t be around to help anyone else. That is so true. It has taken me so many years to start taking care of myself.

    I hope that it will get easier for you (with 6 children still home) and that you will be able to recover fully from this beast (or keep it under control).

    Have a great afternoon and thank you again for everything.

    Roberta

    #10201

    Diana,
    I forgot to ask…I don’t want to pry but did u actually get allergy/sensitivity tested (blood or otherwise) or did u just do the elimination diet to figure out your sensitivities/allergies?

    The reason I ask is because even though I did get tested, through my blood, I am confused as to whether this is as accurate as you can get or not.

    #10202

    I did a blood test for intolerances. It was an Elisa test. I already knew that I should avoid dairy, wheat, and fermented things. In brief I was intolerant to 49/60 things tested. 11 things I didn’t have antibodies for. I couldn’t avoid all of those foods and began a rotational diet. This diet really did seem to help. It was hard to get into it, but now I have a 2 month plan which I can use over and over.

    My chiro and I could not answer my questions about the test. Maybe if I get a celiac specialist on my case, they will be able to explain it. Meanwhile, I am feeling like I am improving, so I can wait for the next cliff fall off before consulting a specialist.

    #10203

    I would assume that the blood tests are the most accurate then. Did you get help with beginning a rotational diet and do you just stick with what you were tested for? Cutting out my moderate to severe reactive foods has helped me out tremendously, but I can not even handle my mild reactive ones either, which cuts a lot more out of my diet.

    It sounds like you have a great chiro. I have one also along with a massage therapist, who by the way, nailed the candida a long time ago (but doctors didn’t) go figure.

    If you don’t mind me asking, what kinds of foods do you usually have for breakfast. Breakfast has always been my favorite meal, but this one is so challenging since I do not like to eat left-over dinner for breakfast. Was wondering if you had any ideas or what you might do. Any help would be appreciated!

    As with you, I do feel myself improving, but it is a slow process! All we can do is keep our chinns up and keep plucking away forward.

    Hope you have a great day!

    Roberta

    #10204

    My current breakfast plan is poached eggs daily. Egg antibodies were not detected on my tests, although I have been eating them for 5 years daily. My back up plan, if eggs becme a problem, is boiled fish. I would vary the kind of fish.

    Along with this I have either a wrap, muffin, or pancake, abd a small amount of fresh fruit. The muffins are made with either buckwheat, almond, cocunut, hazlenut, or bean flour. I try to have good fat with that, either butter (ghee), coconut oil, or olive oil.

    I eat things that I have intolerances to. I did not have allergies to them, I guess. I have them only once every four days. I try to not eat anything more frequently, but things I had been eating freely, and had no antibodies for, I am freer with.

    #10205

    I can not have eggs due to the lecithin in the yolks and I tested with a mild reaction to the whole egg. I do try to make foods using just the egg whites, but then again I have to limit it. There were only a couple of fish that I wasn’t considered reactive to (generally safe with), but I eat those for lunch and dinners. Have had a few for breakfast, but not my cup of tea.

    I am severely reactive to buckwheat (which I had never had), mildly reactive to coconut (strong anti-fungal, get die-off pretty bad from the candida, so I really can’t have much coconut anything) and all bean and legumes I either have a mild to moderate reaction to, so I have to stay away from them also. I also have organic extra virgin olive oil daily (hoping not to become sensitive to this also) but I really have no choice on the oils.

    When I say I react to a food or chemical, I mean it is very hard for me to function (thinking, moving or sometimes even short of breath) it is horrible. So I try to stay in the safe zone, which isn’t much, if I stick with the list of things I was tested for. When I try to venture off, even trying to keep foods I try in the same food family of my safe foods, I eventually start going backwards and get very depressed. When I mean I am safe with these foods, I mean I don’t react, as they put it, high green (non-reactive), yellow (moderately reactive, or red (severely reactive). Also I was tested for 22 varieties of fruits, reactive to 13 of them and the rest feed my candida, so every time I try to eat a non-reactive fruit, I have some sort of a reaction. I just read up on the benefits of raw organic honey and I decided to give this a shot since it has a natural anti-fungal property. Hope this works out!

    Do you just work with the foods you were tested for or do you try to venture off to ones that you weren’t tested for? If you venture off, how does that work for you?

    #10206

    I have bites of fruit rather than a whole bunch. I hope I can get by that way. I would pick another protein at breafast then. Maybe beef, I would maybe get a really little crock pot and turn it on overnight. If you can tolerate them you could put in Basil, fennel, and/or oregano for a sausage like product. I am a firm believer in protein for every meal. One could have cheese or yougart, but I mention it last since I cannot tolerate them. I suspect you cannot either.

    I try to get as much variety as I can. Therefore I eat veges and fruit which I wasn’t tested on as much as possible. When I go to the store I search out and eat an unusal one for me. Then I can eat it for 24 hours and not worry about the 4 day rotation of it. I am considering if I haven’t eaten it, or its family, I don’t have antibodies for it.

    Buckwheat was my most reactive food. I found out it is the same family as rhubarb, so you would not have to eat it specifically to have antibodies. I was eating cross contaminated buckwheat, quite frequently, at the time. I have since found some to grind my own. Since I am much improved, I think it is working.

    I had only low level of antibodies to everything in my diet. The exception buckwheat at the time. My scoring system was between 1-5. 5 being the harshest. My top, buckwheat, was 3. Crab was 2 and everything else in my diet was 1.
    The rotational diet allows me all of these things, but only every forth day.

    Did you get a rotational diet plan with your testing? It might have some ideas. I know I had to make substitutions with mine, because they didn’t know what I was not eating . For example wheat was suggested every forth day. (OOPS) I knew better anyway.

    I am very careful with all sweeteners. I don’t know that I have yeast problems now, but when I went grain free I smelled a yeast smell on my skin, I use small amounts of honey or agave in my baking. I tend toward hypoglycemia, so have been careful with sugar a very long time. I used liquid stevia until I learned mine was contaminated with wheat. I am surely losing pleasure in anything processed without me.

    I only have to make 9 more posts to top Jackie, the 2nd highest poster. Where are all these people?

    All better, I hope.

    Diana

    #10207

    The only protein I tested ok for was beef, since I hardly ate it. I also can only eat 100% grass fed meat. My egg is somewhat high green and the rest, turkey, lamb moderately reactive and pork and chicken severly reactive.I was tested for 20 different veggies and am reactive to 8 of them. The ones I am not are either greens or they feed my candida like sweet potatoes and tomatoes (due to the acidity). I can’t gain weight on greens! I react to whey and curds so I have to stay away from dairy as well. I am even high green on oregano, garlic, mint, dill, basil, coconut, ginger,paprkia, cinnamon, yellow on turmeric, cane sugar and red on maple and cocoa. Those are just the flavor enhancers they tested for. They also told me I could eat wheat, but just like you, I knew better. But spelt, barley, quinoa are all very high greens almost touching yellow and I never have eatten these. My doctor told me that anything yellow or red is considered as an allergy and to watch out for he high greens, they could cause a problem also. Also even if I tested ok for a food, if it had a chemical in it that I was allergic to I would just have to watch for reactions. In the chemical area, between the sorbic acid, caffeine, lecithin all being very yellow, almost red and MSG being red, it takes a lot of foods out of the equation.

    To answer your question, I did get a rotational planning, but they didn’t take into consideration my candida problem, which again took a lot more foods off my list. It is almost impossible to get rid of the candida (even though I was on meds for a while) and then be able to eat right to heal the gut. I, too, try to have a protein with every meal and I need to eat at least 4 meals a day to feel decent. To get enough variety of foods with such a short list is almost impossible. I really don’t have any other proteins besides salmon, tuna and beef that I can have for meals. I am really afraid to keep trying other foods that I haven’t been tested for, because I haven’t had much luck with that. I get tired of backsliding, if you know what I mean.

    Since I am basically allergic to cane sugar (can’t have other sugars because of the candida) I tried stevia again (which I used a lot, in the past, but wasn’t tested for it) and seem to be having an issue with that as well.

    My registered dietician and my doctor were both surprised that I was reactive to so many things. I was told to just keep trying and stay away from things that bother me. So another words, it is hit or miss with my diet, as it has always been for me. The only thing different is that I have the test to help me figure out what to stay away from.

    I hope you continue to heal and incorporate more foods back into your diet without sliding backwards.

    Thank you for giving me your advice. Hope you have a great night!

    Roberta

Viewing 15 posts - 1 through 15 (of 17 total)

You must be logged in to reply to this topic.