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Celiacs, please weigh in ......

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

  1. IntuneJune

    IntuneJune Senior Member

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    For those of you who have been diagnosed with celiac disease (or those who are very certain you have celiac disease) and have been on a full gluten-free diet, please weigh in.

    No, not on the scale.

    How have you been feeling after being GF for some time? I have been GF for two years, and lately have noticed I am having symptoms to other grains. This of course is not good news, I feel deprived of many of my goodies, although, have learned to cook just about anything now. I also have allergies to yeast, corn and soy. So that upped the challenge. We have made breads yeast and wheat free, also pizza crust, etc.

    Now, I am finding I am reacting to the breads, rice, rice pasta, other grains.

    Recently have been looking in to the paleo-style of eating, and this "diet" has similarities to the "carbohydrate specific diet" namely eliminating all grains and eliminating some specific carbs.

    Off to a gradual start, I thought I had more energy yesterday and woke up a little more clear-headed this morning.

    I am wondering if anyone else who already has been GF, has moved onto eliminating all grains and if so, how did you feel.

    Or has anyone eliminated all grains found improvement in their symptoms.

    Thanks, June
     
  2. George

    George Guest

    Yeah, first it was just added gluten, then wheat products, now rice. Not brown, wild, organic or hand washed. No rice for me anymore. I can still handle rye, and oats. But hey an all protein diet for a dog like me sounds pretty good. (grin)

    I can't say that I've had any improvement based on the elimination of grains. I found the biggest improvement was when I added potassium and magnesium. After that the Co Q10 seemed to start working and my cholesterol finally started to go down as well as my blood pressure. But it's so different for each of us.

    Just give me a bone to gnaw on and I'll be fine.
     
  3. IntuneJune

    IntuneJune Senior Member

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    George and gluten

    I am reading the Paleo Diet book and it mentioned that some celiacs come to the realization that not just the wheat bothers them.

    Well, that is why I am reading the book.

    I bought the COQ10 and it is sitting on the shelf in my cabinet. Have not started it yet. But I am glad to hear it helped you. Hummmm, maybe this is the kick I need. I take magnesium.

    Bones, do you prefer beef, pork, lamb???? :D


    June
     
  4. George

    George Guest

    (Sitting up very Pretty) All of them, Please!
     
  5. IntuneJune

    IntuneJune Senior Member

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    Ohh, Good Boy!
     
  6. Misfit Toy

    Misfit Toy Senior Member

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    I am not celiac but have a wheat allergy. Once I stopped eating wheat, I ate the other grains. Now, I am allergic to oats, rye, corn, rice....so basically all grains. But I am also allergic to so many foods in general. Maybe giving up carbs is the way to go. I am allergic to potato too and soy, tomatoes, oranges, turkey, beef, chicken, peanuts, almonds, air, water....KIDDING. It's awful. I will have to look into the paleo diet. Know nothing about it.
     
  7. Don Wiss

    Don Wiss Guest

    I have been gluten-free for 20 years. I have been dairy-free for 15. And I have been paleo for 14. I never felt bad even when an undiagnosed celiac. The reason for going paleo is it is the best chance we have to avoid all the diseases of civilization that now plague us. And the dairy-free reduces airborne allergies and helps with the autism spectrum.

    The only cheating is when traveling I will eat potatoes and rice to fill up.

    The Spitfire. When someone has so many "allergies" you probably have a leaky gut. Going paleo is best bet to cure it. Then less food problems. But nightshade vegetables are not good for many people. Orange juice is liquid fructose and many celiacs will also be fructose intolerant. And fruit juice isn't paleo.

    Here's a page to get you started on paleo: http://paleodiet.com/definition.htm
     
  8. Victoria

    Victoria Senior Member

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    I did a (very basic) Blog on the Paleo Diet Sept 2009 on the forum (go back to the beginning of my Blogs).

    Loren Cordain's book The Paleo Diet is as good as any around.

    I was 100% dairy/grain free diet for about 3 months July-Sept 2005 (I think it was) - this included rice & white potatoes. (Sweet potatoes have twice the nutrition of white potatoes).

    I was 100% well for that whole 3 months. I mean 100% (which may have been co-incidence of course). Tried to get back to it early 2009 & once again started to get much, much better, & then I think it was Easter (those damn chocolate easter eggs get me every time :D), that my will power melted away again.

    But you do need to be careful on the type of protein you're eating. Paleolithic man ate mainly wild game which is very low in fat. He also did alot of exercise & got plenty of sun (vit D). The exercise & type of foods would have increased his calcium intake.

    I have taken a complete calcium/magn. supplement for something like 25 years (ever since I gave up dairy - well, I eat a tiny bit occasionally). When I had a bone density test in 2002, I had a bone density of 94% which is excellent for a middle aged Caucasian female.

    Normally by the age of 45, female bone density has declined to about 85%.

    And while my diet has a few naughty foods creeping in every now & then, I credit my diet (& basic supplements) to my good health today.

    In 2004, I was only well the first 3 weeks in April for the whole year.

    That does not mean I am without pain, but alot of my pain is related to lumbar disc disease. I also have damage to both front plates of my feet (from overuse when I used to do power walking every day). If I overdo it these days, I can get exhausted the next day or two after that excess activity.

    But sometimes I do too much & have no adverse repercussions at all - so, figure that one out.

    But now that I'm not working, I can manage my activities, sleep & diet much better. (except for those Easter eggs every year).

    I wish I had better will power (sigh...).
     
  9. IntuneJune

    IntuneJune Senior Member

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    About 30 years ago, when I was first diagnosed with the wheat allergy, I substituted rice for everything..... then follow up testing showed I had a "new allergy" to rice. The doctor however said, it was probably a false positive, due to the fact I was eating so much rice. The advice was to rotate more.

    So I did, but now it seems grains are affecting me despite rotating. I also have "allergies" to many things but you have me beat Spitfire. :eek:

    And sometimes I respond to the question "Do you have any allergies" I reply "Life." I have many environmental allergies also."

    June
     
  10. IntuneJune

    IntuneJune Senior Member

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    WELCOME TO THE FORUM, DON

    So, do I understand correctly you chose to go Paleo through readings as apposed to seeking out a "diet" because you were having problems. Or an interest in autism?

    Do you have any consequences when you eat the potatoes or rice?

    Thank you for replying, and again, welcome!

    June
     
  11. IntuneJune

    IntuneJune Senior Member

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    Chocolate will get you everytime!!!



    Thanks Victoria: Found your blog, thank you for sending me there. I am reading Cordain's "The Paleo Diet" now and thought it very interesting even to the the bone loss connection. The book makes a lot of sense to me, just about finished, but I tend to "buy the farm" when I read a new (to me) theory and have learned to take a step back before leaping in.

    I buy hormone-free, antibiotic-free meats... can't say I have been good about the fat content in the meat just happy to find this meat in our local supermarket. Am looking for the turkey and have only found the "regular." Eggs I buy from the local farm where the chickens run around. I thought I felt better with these changes, a little, but I will take that.

    But as I mentioned in this thread, I have become suspicious of other grains besides wheat/gluten. The wheat/gluten/celiac thing was horrendous. I lost 30 pounds in 2 months.. because I lived in the bathroom. If I had a doctor's appt or needed to be out, I had to stop eating the day before, it was serious stuff. That all cleared up on the GF diet and the weight came back on.

    Now, after I have grains, it's light's out time, severe muscle heaviness, aching, overwhelming exhaustion. And out I go. However, when I wake up, I am not refreshed.

    You mentioned you felt 100% better, but are there specific symptoms you could mention?

    This year I escaped the chocolate bunny... my husband usually picks up a treat for me but did not. For the eight weeks since surgery, I have not been going into any stores so I do not see the chocolate. And in this past year, I have not indulged in it any way.

    I need to be careful also about carbs.... the Paleo way is low carb by the American/many other countries way of eating, but higher in carbs than the other low-carb diets out there.

    Too much mental work for my overly-taxed brain.

    Thank you again.

    June
     
  12. dannybex

    dannybex Senior Member

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    Interesting thread here, thanks to all for posting.

    I'm wondering if I've been eating too many carbs (virtually no refined sugars, but some molasses), but also oatmeal, rice, sweet potatoes and other veggies -- and not enough protein. I'm underweight as it is (and take hydrochloric acid caps plus digestive enzymes) so in the past when I ate more protein, fat and less carbs, I LOST MORE WEIGHT...not a good thing. I tend to not be able to use protein or fat for 'fuel' very well...(although taking l-carnitine helps somewhat). I also wonder if I'm eating too much fiber...something that Dr. Logan said may be causing elevated d-lactate and hydrogen sulfide levels in PWC's?

    So...just wondering what percentage of protein, fat, carbs are people finding helpful...especially SKINNY folks? :)

    And/or how many grams of protein should one eat to help rebuild muscle?

    thanks in advance,

    Dan

    p.s. I know I could gain weight eating sweets, but I pay the price with mood swings, and huge energy fluctuations...also more pain. Dammit! :)

    p.s.p.s. I probably eat the equivalent of 1 chicken breast a day? Half or so with lunch, and then the rest at dinner. Also have a scoop of whey protein at breakfast, before the oatmeal slop... :)
     
  13. Victoria

    Victoria Senior Member

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    The Paleo Diet - low carb, high protein??

    June, I'm a bit the same (or was).

    I've spent something like 25 years looking at different diets all round the world (including the Hunzas, the Japanese Okinawans, Amercian Indians, the original diet of Australian Aborigines, & many other indigenos races, & then selecting different aspects that applied to my health issues.

    Cordain's book made alot of sense to me, as I too, get lethargic, fall asleep, feel weighed down, bloated, stomach/bowel pain with grains. I used to stick to rye sourdough which had the least effect. Now I keep rye sourdough to a very rare treat.

    I think you've got to have some fat in your diet, just not too much fat & not necessarily from red meat. You could go for avocadoes & olive oil (if you can eat these - seems some members can't tolerate olive oil). Turkey breast is good, wild rabbit & other game meats are good. If you can get them organic or bio-dynamic even better. It's hard to get real wild game here. I think we import venison from NZ. I've never bought it here - too expensive. I ate venison in the UK when I lived there, though.

    I only buy fresh "regular" turkey from the fresh food market. But as it is 100% meat with the bone & skin removed, I feel like I am getting pretty good protein. My other meat is always organic. And just recently, I have been able to buy organic salmon (instead of farmed salmon).

    Also, turkey breast for me to buy is very, very cheap. I eat 2 meals of organic scotch fillet steak, 2 meals of organic fresh salmon, 1-2 meals of turkey breast & one meal of organic, free range eggs perhaps or maybe a meatless meal. The I follow this up with 3X1000gr of pure salmon oil capsule twice a day with meals (ie 6000mg all together).

    I believe in a little bit of everything. Not too much white meat, not too much red meat, not too many eggs & so on.

    I usually eat at least 2 green vegetable each night & sometimes even have broccoli or steamed spinach with poached eggs for breakfast (now I'm not working & have more time to make breakfast).


    I tested negative to celiac but as I react to all grains to some degree I believe I may be borderline. Besides, I am so reactive to additives/preservatives & food colourings, I even suspect it's something else in the bread, not just the gluten.


    June, I am the same with bread. If I eat white sliced supermarket bread, I can fall asleep within about 15-20mins. The affect lasts about 4 hours. I can barely move if I eat the wrong thing. (sort of like some ME/CFS sufferers experience), but since it happens straight after eating the wrong food & wears off, I know it is the food (not my health condition).
    Lethargy, fatigue, irritability, manic, irrational, itching, rash, brain fog (yes, brain fog not related to FM or CFS), unco-ordinated, bumping into furniture, dizziness, IBS, stomach bloating, fat pockets (on my old skinny frame - I'm not fat all over), stomach pain, bowel pain, inflammation, muscle fatigue, painful wrists/knees/feet/hips/shoulders/neck.

    Sounds like I'm describing CFS or ME?

    Alot of this stuff actually can be directly related to what food I eat. These "symptoms" last about 4 hours & as soon as the food has gone through my digestive system, I seem to be fine.

    Sometimes the intermitent brain fog & pain doesn't seem to be related to any meal, so I assume that is my FM.

    When I was 100% symptom free, I was planning an introductory trek in Nepal. I got my passport renewed, bought new luggage & day backpack. I started serious training on steep hills & slopes. Was doing about 600 repetitions of 32 simple toning, back strengthening exercises. I started walking briskly up & down 3 flights of stairs in my block of flats as many times as possible. In other words, for 3 months I was like a fit, healthy person in their '20's. I was like a superfit athlete.

    Alright, I am boasting here, but I REALLY was feeling good, strong & fit & very flexible.

    I think you've got to have a some vegetable carbs to balance the acid load of the high protein. Eat too much protein on it's own & your liver & kidneys can't handle it & go downhill very quickly.

    You've got to get the balance right (FOR YOU).


    I did the bulk of my research when I had better brain function. Nowadays, I don't feel the need for as much research. I just need to get back on the "wagon" & do the diet regime I worked out all those years ago.

    It's not easy when you don't have a car (to transport all that extra meat, fruit & vegetables too). I was shopping about every 3 days to buy the freshest greens too. My lumbar back is not stable enough after the surgery in 2008 to carry much now.

    I'm sure you will find everything you need to know in Cordain's book, but if you're going to follow the Paleo diet, you need to switch over slowly until your body gets used to the change of eating routine. Secondly, you may find you can't eat everything Cordain recommends. I mean some people don't do well on chicken. Some people are allergic to seafoods for example. It may take a lot of trial & error before you can find the right selection of foods to make up your version of the Paleo Diet.
     
  14. Victoria

    Victoria Senior Member

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    Dan,

    I think everyone is different. It's pretty hard to suggest that "X" grams of protein will be good for you. I've honestly never looked at the number of grams of protein I eat.

    I just eat organic meat (red & white), fish (mainly salmon), fruit (mainly low sugar), vegetables (mainly low carb), organice free range eggs (a dozen per month, so 3-4 per week), nuts (mainly walnuts & macademia), & seeds (not so often now, seem to have gone off them). I also eat almonds occasionally, organic raisins, dried Goji berries& a few other bits & pieces (like chocolate easter eggs).

    I don't eat sugar, molasses, treacle, golden syrup or any those type of processed foods. If I want something sweet, I would eat some organic raisins, some dried apricots or a banana. But I eat bananas with other food to spread the sugar load as we have diabetes in our family & my own blood sugar is a little higher than it should be.

    You need to get the acid/alkaline balance right. It's supposed to be 80% alkaline & 20% acid. When I eat too much acid food, I get more muscle/joint pain.

    My parents were over for lunch today, so I bought some rye sourdough bread, some chedder cheese (for my Dad). My Mother bought over some fruit cake (which I ate, but don't normally eat).

    I do eat plain water crackers (which don't seem to affect me even though they're made of wheat).

    So if you eat the right food most of the time, then every now & then you can have a treat. But if you're a celiac like June, you should never, ever eat grains (with gluten).

    Same with Crohn's disease or ulcerative colitis, you have to be very strict with your diet.

    I'm not 100% Paleo Diet.

    Dan, I'd try for a variety of proteins. Can you eat fish & shellfish? Can you afford to buy whatever you like or do you have a strict budget? Many members have a limited budget & couldn't possibly eat the way I do. But then I don't buy clothes, have holidays, have regular haircuts, go out etc. All my money goes on good organic food & supplements.

    I don't go to the doctor as often as when I worked, which is a saving - don't seem to need as much medical attention these days.

    I daresay I will have to cut down soon, but I'd rather cut down on the variety of food, than the quality of organic food I eat. Most days I eat only 2 meals since I quit work - I'm trying to learn to eat less, so I can still afford expensive organic food.
     
  15. dannybex

    dannybex Senior Member

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    Thanks Victoria...

    ...for your reply and balanced advice. I really appreciate it.

    I do try to eat a variety of meats, and do eat fish once a week, sometimes twice. But yeah, I'm on an extremely strict budget unfortunately. Only $674 a month...and that doesn't include rent.

    :(

    Anyway, will experiment...and see if eating a little more protein will help. There's just so much conflicting advice on the web, as we all know.

    d.
     
  16. IntuneJune

    IntuneJune Senior Member

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    Dan,

    Since I am reading the Paleo Diet book presently, I can give you an pass on the percentages of protein/carbs/fat.

    Diet % protein % carbohydrate % fat

    Paleo 19-35 22-40 28-47
    Typical US 15.5 49 34
    Low carb "fad" 18-23 4-26 51-78

    I am a little surprise the carbohydrates are as close as they are on the typical US diet, but the book explains choose carbs wisely, steering away from high glycemic types like the grains. That's what makes the difference.

    You certainly want to keep your carlorie intake up, if you were to make this slight change, I would think you would have to eat more food.

    I am missing my rice, but certainly will "treat" myself occasionally. For me, gluten is completely out, being a celiac.

    Edit: The chart did not come out in the post the way I set it up, so I put in bold the carb values. I week or so ago, I started tracking calories as I am having a problem with my weight...too much... and I wanted to track exactly what I was taking in... the website I am using also figures out the fats, protein and carbs. I am approaching this "softly" I don't need another stressor. But I am keeping the calories down.


    June
     
  17. Victoria

    Victoria Senior Member

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    Dan,

    you're SO right about conflicting advice on the web.

    I find US sites are very different to Australian sites (on the same subject).

    I have tried to read as many internet sites & books as possible, so I can get a sort of...average....type of advice.

    I am a big fan of some of the earlier nutritionists from the '70's. While modern nutritionist have access to better scientific research & knowledge, I'm not really sure that they are broadminded enough in their interpretation of the most up to date research.

    I'm a big fan of Dr Bernard Jensen's work & have several of his books (amongst many others). I like his book called Foods that Heal (which has some good acid/akaline food charts. I refer to it often.

    I like being able to read lots of different interpretations of diet & food, then trial & test on myself & my own food sensitivities, & then form a diet regime that suits me.

    I'm not keen on nutritionists or any other therapist who states that their way is the best & only way to eat.

    Dan, in another 6 weeks or so my own money budget will be more limited, so we'll see how I go then (trying to eat well on limited money). Unfortunately, I can no longer eat the lentils & beans which are much cheaper than meat & fish.

    In the meantime, keep up the varied protein approach. Sounds like you are making a great effort considering your limited budget. Perhaps (if you can) try eating more avocadoes & bananas to see if that will pack on a few calories. As long as you are eating the best you can for your dollar, then I think you are doing very well. I wish I had trouble putting on weight.

    Was reading some interesting research on waistline fat & lack of restful sleep. Interesting because since I have stopped work & am getting more rest (& more sleep), I have lost a quite a bit of fat around my stomach. I am certainly not walking as much, just resting better.
     
  18. IntuneJune

    IntuneJune Senior Member

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    Victoria stated: Was reading some interesting research on waistline fat & lack of restful sleep. Interesting because since I have stopped work & am getting more rest (& more sleep), I have lost a quite a bit of fat around my stomach. I am certainly not walking as much, just resting better.

    I have suspected this might be a little of my weight problem. Since I take in less than 1500 calories a day and gain weight, 1200 maintain weight, 1000 to lose weight, and hungry most of the time, I have tried to figure out why, worked with a nutritionist, this is years ago, and she simply recommended to continue eating the same but add protein as I was not getting enough.

    Now I read sleeping burns more calories than watching tv. (Body busy repairing itself). Sleep for weight loss, I love it!!! Alas, I am a very poor sleeper. It might be though sleep has improved with Rooibus tea before bedtime. Too early to tell.

    The scale has nudged down a wee bit since staying away from the high glycemic carbs, (or is it the tea) I am eating more vegetables, but the net result is probably less calories. One day I did do the website calorie/nutrition count and my intake was 1000 calories, I was not hungry though but was craving more starch. I will follow this more closely. However, I had a big slump after lunch again. Humph, this is the reason I took a look at the rice carbs in the first place.

    It is ashame legumes are not "goodies" I loved cooking with them, make big pots of soup with beans and veggies, would freeze in individual portions and freeze. Going to the freezer to pull out a serving.... as good as money in the bank. Well, guess I could do the same with the naturally low fat turkey.

    Dan, good luck to you in feeling better, we all must find our own way, but I find it helps to read what others are doing. Victoria is so sensible, grounded, and can articulate well, this helps me.

    June
     
  19. girlinthesnow

    girlinthesnow Senior Member

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    Hi Victoria,

    This is my experience exactly. Have you tried to explain these symptoms to a GP? I tried once but she clearly thought I was A) a hypochondriac or B) insane. I have told friends that when I eat gluten I run into things, fall asleep, etc., but no-one has ever really understood what I was talking about. It is so amazing that you have exactly the same physiological response to these foods that I do, it's a huge relief too. I wish we could find out what was REALLY going on, why we have these responses to food.

    Thanks for putting it so clearly and concisely.
     
  20. IntuneJune

    IntuneJune Senior Member

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    Gluten

    Girlinthesnow,

    On my initial visit to the allergist about 30 years ago, I complained about everything Victoria spoke and you highlighted except for the dizziness and bumping into things.

    On that visit he said, "I can tell you right now you have an allergy to wheat and yeast, at least" but we will first test you completely.

    My symptoms improved greatly (not completely) some improved more than others. I still had all the classic symptoms of fibromyalgia, they never went away, still had fatigue, but that was better. I don't believe allergies, sensitivies are the cause of our illnesses. But maybe because our immune system is under assault with these diseases, they are less able to handle allergies or sensitivities.

    I also had a severe dizzy spell maybe six years ago, could not sit up without the room spinning which went on for weeks, long story short it was an inflamed inner ear.

    We are mysteries that need unraveling. Every little bit helps.

    We need good medical people to help us.

    June
     

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