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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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Celiacs, please weigh in ......

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by IntuneJune, Apr 5, 2010.

  1. Victoria

    Victoria Senior Member

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    Girlinthesnow,

    I might have missed a few symptoms, but the lethargy & muscle weakness are the main ones. I find the ability to fall asleep (as though heavily drugged) an interesting side effect.

    People don't believe me, either.

    A colleague walked into my office one day, & quite literally caught me before I fell off my office chair. I could barely keep my eyes open, and certainly couldn't sit up properly.

    It's not all grains & even happens with gluten free breads occasionally. Seems to last almost exactly 4 hours.

    I wonder if it's more than just grains. I think it could be grains, dairy, additives, preservatives, food colourings, fertilizers, growth hormones, etc. Could be contamination on the machinery or picker"s hands.

    Could be on the crates or boxes or trucks that bring the produce to market.

    I keep an open mind & imagination. Could be cross pollination by the bees or insects. Could be strong winds bringing chemicals or pesticides from properties in another vallery or area of the country.

    Sometimes I get fed up with trying to eat a "clean" diet & just have to go "off the wagon" for a while until I get so dopey & lethargic that I pull myself together & start eating properly again.

    None of us are perfect.

    I haven't quite worked out exactly how many foods have that "falling asleep" lethargy & muscle weakness.

    Instead of trying to work out what foods disagreed with me all those years ago, I decided it was much easier to work out what I COULD eat safely & kept away from the worst, or if I couldn't avoid them, try to keep unsafe foods to a minimum.

    Over the last 25 years, I have had changing symptoms to various foods, but I must say since I have gone back to organic fruit & vegetables, I can see a definite improvement. And if I can't get organic, I try to make sure it's fresh food cooked as simply as possible. I try to avoid any condiments of any kind, especially those with food colourings or msg.

    But I think we have to be realistic in our diets. There are going to be times when we can't afford, obtain or even have the energy to cook good, fresh simple food.

    If you're eating a good diet most of the time, then an occasional treat or diversion from your diet is not a problem, says Victoria who has just arrived home from the Melbourne Healthy Food & LIfestyle Show - an annual event held over 3 days, with a couple of hundred food & lifestyle stalls & a couple of stages for demonstrations.

    This morning has to be one of the few times, if not the only time, I have had the energy to actually look at every single stall in the show/exhibition. I did have 2 sit down rests evenly spaced over the 2 1/2 hours I was there, though.

    My advice to the members from Melbourne, Australia.......save your $18, don't bother going unless you are clueless about diet & food. I found it very disappointing, but maybe I was expecting too much.
  2. brenda

    brenda Senior Member

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    When we have a leaky gut, which is very common, the immune system will attack the food molecules that get through the gut wall, and any scrap at all will trigger it and cause many symptoms. The only way is complete exclusion and for many people with this problem that means no gluten or dairy and it can take a while before the symptoms subside. Some say 6 months. Other illness like autism have the same problem and parents find that strict exclusion, which these parents are fully motivated to impliment, brings about a drastic improvement in time.

    I have had to eliminate all grains recently, very strictly and also other foods like potatoes eggs tomatoes and apples, which I am testing myself for with kinesiology ie if the muscle you are using weakens in the presence of the food and am finding it very reliable. If I eat any food with which I am having a problem, and it is changing often, then I get certain symptoms and one of them is overwhelming sleepiness and chills. Anything I eat daily is triggering this but a few things seem safe like chicken. The rest of the diet is mainly raw fruit and salad veg with raw beets, carrots, celeriac and nuts and seeds that is aramanth buckwheat and quinoa, cooked. I did go 100% raw but was feeling colder so hace stepped back to about 85%.

    This regime has really made a big diffrerence. The most noticable is with bowel function, and without giving tmi there is barely any odour whereas before for a long long time, it was very odorous and constipated. My skin feels lovely and soft and a much better tone. I am staying awake all day and active much longer. If I eat an allergen I am finished by 6pm despite 2 naps. My hair is feeling softer and the best thing for me is that the pain and stiffness in my hands caused by the Lyme bacteria invading the tendons is much less. This really is astounding to me that doing something so simple has helped so much and without a doctor!! The last one I consulted gave up on me after seeing recent tests and hearing my medical history.

    It has taken me some time to get my diet sorted out and I knw that I will have to keep fine tuning it but I really feel that I am recovering my health most definitely but it has taken some time to get this far and some mistakes on the way but this is someone who is very sick indeed, having ME before the tick bite and having been poisoned with mercury and damaged in childhood from that. Surely anyone can do it if I can.

    Although my costs are raised through eating organic, the nourishment from a raw diet means that you need to eat less especially with highly concentrated foods like nuts and seeds which I sprout on the windowsill. I am taking no supplements at present but experimenting with Pau Darco tea in small amounts as it has such a good reputation but it is easy to get a medically inactive supply.

    The only thing I wish is that I had not let myself descend into such a low state before I took such strong action. It is really not worth putting up with ill health because fo the possibility of getting so much worse. We tend to think that we cannot get worse but we always can and if our immune systems are allowed to continue to disfunction, we never know what will bring us down one day perhaps to a point when we cannot get up again. For me now the challenge is that I have the ageing process to contend with too being 60 years old.. It is so much easier to heal when we are younger but I am not going to give up. Life is precious and health is opur biggest asset and it is worth moving the earth to get ourselves into recovery.
  3. girlinthesnow

    girlinthesnow Senior Member

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    Addiction is the elephant in the room, I've see-sawed the past 20 odd years between excluding this and that and getting down to 3 foods and then eating absolutely everything again.
    Lectins might be the key.

    It's insidious. The opioid/ brain connection is fascinating. There is the same connection in autism and plenty of stories of autistic children who will peel wallpaper off the walls to eat the glue starch on the back of the paper.

    I love it, I crave it and it wrecks my health.

    It isn't ME/CFS though, it just makes everything worse.

    IT IS A HUGE COMFORT TO KNOW YOU PEOPLE ARE OUT THERE.

    :hug:
  4. anne_likes_red

    anne_likes_red Senior Member

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    Grain free here :)

    I'm not coeliac as far as I know but I'm grain-free, and pretty much free of all starches.

    I eliminated wheat first (years ago) and didn't notice any immediate difference - then after several months wheat free I ate some organic wheat mountain bread and it hit me like a freight train! I had a severe headache for 48 hours, bloating, stomach pain, increased brain fog and joint pains.
    I tried gluten-free then went grain-free when I started following the specific carbohydrate diet. I get less headaches and much less inflammatory pain in general by avoiding grains. Diet's not a cure...but in my case I'm certain it makes a difference.

    These days I eat meat, eggs, fish, some soaked & dehydrated or sprouted seeds and nuts, low starch veges, bone broth and ferments. I like things quite spicy sometimes and I use lots of fresh ginger, garlic, chillis, black pepper, fresh herbs etc without any problem. I don't seem to do well with too much animal fat but I have plenty of coconut and olive oil and avocados. I'm OK with the occasional cup of coffee and I use manuka honey when I need something sweeter.
    I eat as much as possible organic. If I had more energy I'd grow more vegetables in my garden. :)

    There are lots of good sites online for grain free recipes and inspiration.
  5. IntuneJune

    IntuneJune Senior Member

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    From Victoria: Sometimes I get fed up with trying to eat a "clean" diet & just have to go "off the wagon" for a while until I get so dopey & lethargic that I pull myself together & start eating properly again.

    None of us are perfect.


    :ashamed:

    Yes, and pulling ourselves together..... that takes energy. :eek:

    I belong to a few groups whose major socialization is centered around eating. It simply is no fun for me as I have to interrogate the folks about the food and most just do not know if the ingredients they used are gluten free. The obvious is not the problem, but gluten is in so many food items. Just one example, vinegar. Could be OK, or NOT. But the cook may not remember. When I initially started in GF, there was a learning curve. And it was very frustrating at first. So I do not expect anyone who does not have celiac to know. But, it has made attending these "meetings" a little uncomfortable.

    I am uncomfortable not participating in the sharing of the food. If it is a pot luck, I'm all set. I have gone to restaurants who have GF menues, made a point to the wait staff I need GF, only to have my salad served with wheat croutons, another time, was served wheat pasta. Then, I must say to these servers that they must not simply take the pasta off the plate, I need a new meal because of the contamination. Now, everyone else at the table has their meals and I ask them to start eating while their food is hot. It simply should not be so hard. This frequently happens.

    These situations remind me how limited I am, and I don't like being reminded. There is a lot I can eat, I am OK around the house, but out in the community.. that takes time and planning. And that gets tiring. Traveling is a whole other thing. We will be doing quite a bit this year. My husband has wanted to visit a number of places for sometime. We better do it now. I am trying to perk up about this, but it is not just about the food that makes traveling labor intensive, there is the cpap machine, having to go out for the water for the cpap machine after we arrive, the masks to wear on the plane, the hand sanitizers and the anitbiotics to get filled before we leave, the timing around my infusions. Geeeezzzzz. I just want to throw stuff in a suitcase and go.

    June
  6. girlinthesnow

    girlinthesnow Senior Member

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    I really understand this June,

    'breaking bread together' - it's hard to overcome this one.

    If we are going out to a restaurant (rare) I vote for the fish place and eat oysters :D

    I've bought some tiffin tins for travelling, Indian ones in two and four stacking kinds. So now I've got an instant picnic, and can go off to the seaside. Family has fish and chips and I have a tasty safe lunch. You can get neat little backpack sets too. I love my tiffins.
  7. IntuneJune

    IntuneJune Senior Member

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    Girlinthesnow,

    Tiffin tins? I am not familiar with these? Should I google?


    anne_likes_red,

    Do you have favorite sites you could share?
  8. IntuneJune

    IntuneJune Senior Member

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    Brenda and diet

    You have done a lot of work Brenda. I feel this whole thing, sometimes, is a maze. But if grains are the connection to some of the general population's health problems as stated in the Paleo Diet book, well, I really would like to know. As I read the book, it makes sense, but as I said some place else, I am learning not to "buy the farm" until I do further investigating.

    Whether or not his "findngs" in the book hold true for everyone, I am willing to try this as it is a very healthy way of eating. And, of course, I am hoping I feel better along the way.

    Fruits, veggies, almonds, really, no prep when eaten raw....

    June
  9. IntuneJune

    IntuneJune Senior Member

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    Tiffin Tins

    Found them, they are cute. :Retro redface:

    I use containers such as tupperware.... and put in an insulated bag and add an ice pack if the food needs to be kept cold.

    Do the tins really keep food cold or hot?? Is there a better manufacturer than another. One review I read stated the tops were flimsy... said these were only good for dry foods?

    June
  10. girlinthesnow

    girlinthesnow Senior Member

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    Sorry June I went outside to sit in the sun, really warm and springy.

    Did the ones you found look like this?

    [​IMG]

    or this

    http://media.toast.co.uk/stormsites/toast/images/products/thumbnail/68VD3_1.jpg

    for doing this

    [​IMG]

    These are from a UK company but they are also imported direct from India here. No I don't think they keep food hot, but they do snap together tight so no leaks.

    Rather sweetly wives in India traditionally send these by train each day to where their husbands work where they are collected and delivered hot!
    No such service here.....
  11. brenda

    brenda Senior Member

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    June

    I was pretty motivated as I did not think I would see another year but yes, it has been hard work but worth it. The more we hour our bodies with good food the more they will communicate to us and the guesswork is done.

    Brenda
  12. IntuneJune

    IntuneJune Senior Member

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    girlinthesnow and tins

    What I saw looked more like the little picture in your post. Saw the stackables to carry a meal Also there was a lunch box style.

    Thanks for the info.

    I envy you your sunshine. After a severe flood that devastated our State, we are getting heavy rains again. Many folks are far from cleaning up and repairing from the last storm.

    We still have roads closed from the flooding, the pavement was torn up and bridges ruined.

    Would love some sun.

    June
  13. girlinthesnow

    girlinthesnow Senior Member

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    I'm sorry to hear about the terrible weather you've been having.

    I hope the heavy rains stop soon and people can get on with repairing their homes and yards.

    Did you have any damage?
  14. IntuneJune

    IntuneJune Senior Member

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    Thanks Michelle, I got the sunshine!

    Almost afraid to watch the local news to see and hear how folks are handling more rain. Our property did fine, we live on a pond, the pond did rise, but the house was never a concern. Of course we had considerable less land for four days or so.

    Many folks lost homes and buinesses. I pray they recover.

    Thank you again.

    June
  15. Victoria

    Victoria Senior Member

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    June,

    Sorry to hear about "more rain".

    You must be feeling like it will never end.

    As to travelling, I do sympathise. And restaurants.........well, I so rarely go out - maybe 3-4 times a year & a couple of times to family.

    I can look at this lack of socialising in 2 ways. Sad to think I never go out - but then happy that I don't have to endure too many episodes of side effects from the meal.

    When I do go out, I usually have fish & vegetables (or salad). The few times we went out to a celebratory lunchs (when working), we went to the same Italian restaurant. They served wonderful home made anti-pasta (marinated food, olives, smoked salmon, eggplant -things with fresh herbs & olive oil) & I usually had fish or veal as a main course. I don't remember this restaurant serving dishes in butter or cream. It was wonderful. They served lovely dinner bread rolls & small pats of butter, but you didn't have to eat these.

    Since my friends are vegetarian or dairy intolerant, generally I can eat well on those rare times out.

    If I had the money to travel overseas again, don't know what I'd do. I am so used to my own cooking & fresh filtered water. But on the other hand, since my lower back won't tolerate long plane trips, I suppose I will never travel overseas again anyway.

    I agree with Brenda, the right diet does make a difference.

    I am just so lucky in where I live & lifestyle, I have choices.
  16. anne_likes_red

    anne_likes_red Senior Member

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    Grain free recipes...

    Hi June,

    http://grainfreefoodie.blogspot.com/is a blog I follow, and I use lots of their recipes. Links to other blogs there too...there's quite a network of grain free people.
    (NB When bloggers refer to SCD they mean Specific Carbohydrate Diet and GAPS diet they're talking about Dr Campbell-McBride's Gut and Psychology Syndrome diet. Both are grain and starch free.)

    Here is a good collection of SCD compliant recipes.
    http://www.scdiet.org/2recipes/indexa.html

    These folks have a couple of great recipe books and there are also some recipes available on their website...
    http://www.grainfreegourmet.com/sample.html

    Just a few links there. Hope they'll give you some ideas :)

    Anne.
  17. IntuneJune

    IntuneJune Senior Member

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    Eating out and eating in

    anne_likes_red

    Thank you for the links, I will go and visit for awhile. I am looking forward to new menues.

    Victoria

    We live in a very, very small state, but we have wonderful restaurants. A good many will cook to order as they serve fresh, and not prepared meals. We usually have a bounty of fresh fish as that is part of our industry in the state. Our nickname "The Ocean State" came about because of the miles and miles of shore line.

    It is unfortunate I have had these problems when I go out and it is the cross-contamination that is the biggest concern because we never know. So to go out to eat at a restaurant that does not have a GF menue is increasing your chance of being exposed. When going to a restaurant with a GF menue, the customer knows there is a level of awareness on the staff's part. But mistakes are made. The episode with being served the croutons, the waiter was new, and just did not get it; the being served wheat spagetti, the cook in the kitchen slipped up. My father used to say, "If something bad is going to happen, it will happen to you." Friends cannot believe my luck. They have taken up my father's mantra.

    Our state is famous, though, for its food, especially sea food. Our fruits during off season might not be as fresh as Melbourne's. I am thinking we could have a "Cook Off" :) to brag whose food is better.

    June
  18. Victoria

    Victoria Senior Member

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    June,

    I envy you to have all that shoreline & seafood. I love fish.

    It is a shame to have restaurant staff unable to appreciate the importance of specific dietary limitations.

    As to a "cook off" ? Who determines what's good or bad? LOL

    We all have such different taste.

    Many years ago, when I used to dine out, I loved mainly Indian food (not even Australian fare).
  19. IntuneJune

    IntuneJune Senior Member

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    Eating GF

    In the case of the chef, when the error was calmly pointed out by me, (I was there socially and was trying not to make a scene), the manager arrived shortly at our table and apologized to no end. Whether it is the wait staff or chef's error, it is the owner/manager's responsibility to train their employee's properly.

    I belong to the Celiac Support group in Rhode Island and we go out to eat occasionally and we also have meetings with guest speakers, usually either nutritionists or GI doctors. We support the restaurants who have GF menues, and try to raise awareness.

    They found a restaurant in Fall River Massachusetts who serve GF foods and does a "Fish and Chips." This is a favorite in our area, it is deep fried fish with a crusty coating and french fries." I have not had french fries in two years. That used to be my favorite treat when we did go out. Fall River also has a big fishing industry, so the fish is fresh.

    The Celiac Group got together and ate, as a group, at the restaurant. The fish and chips did not disappoint. Oh my gosh, hot, delicious, worth the drive, I wanted to climb out of my chair, hop up on the table and roll around on my plate. It was the absolute best fish and chips I have ever, ever eaten. :tongue:

    Hummm, we have great Italian restaurants here also. The city of Providence held a "cook off" with Boston, (I think it was Boston), a lot of good natured rivalary. ;)

    When my husband and I were working, we ate out a lot. (more money) And is was easy BEFORE I was diagnosed with celiac disease. Alas.

    So, Victoria, thank you for walking me down memory lane, I have rambled on, don't remember the direction I started in when first began this post, but nothing matters now, my mouth is watering for that fish.
    :tongue:
    June
  20. Victoria

    Victoria Senior Member

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    Oh, I would love some really good fish & chips. I adore nice, fat, crisp chips (with lots of rock salt).

    I am getting so hungry just thinking about it.

    On the rare occasions I buy potatoes, I cut them into chip size & drizzle olive oil, rock salt & fresh, finely cut herbs over them (as an alternative to deep fried). They're really yummy, but definitely not as good as deep fried, crispy ones.

    I like parsnips made into chips also.

    I don't eat fried food (if I can help it). With no gall bladder, I tend to think my poor liver has to work too hard on fried food, but I do miss it.

    I never fry my fish either - just poach it in the oven with a little olive oil, lemon juice & depending on the type of fish, I might lay it on a bed of lemon thyme.

    I stopped cooking fish on top of the stove because the smell wafts right through my small flat & lingers for a couple of days.

    (I'll have to get off this thread before I get any hungrier - I might be tempted to walk down the street to get some takeaway & that just wouldn't do at all. I'm trying to stick to my self imposed diet).

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