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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Preliminary Results From My Elimination Diet
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33 posts in this topic

I started doing an elimination diet a week and a half ago, eliminating... what, everything? Seriously, I was eating potatoes, sweet potatoes, carrots, onions, beets (whoo, there was a mistake), beef/lamb/turkey, peeled apples and pears, watermelon, olive oil, and salt. Only took five days for me to break down and go bonkers! I mellowed out the test a bit after that, but have so far tested rice, peanuts, soy, and dairy.

Fortunately, I'm looking good on most of these, but dairy is right out. I didn't think the response would be that obvious for dairy, but I definitely felt dizzy/lightheaded/fuzzyheaded/odd (I can't describe it, but we all probably have our own versions of this fun little thing). If I ever questioned the whole "derivatives of gluten/casein proteins can act like opiates in the brain" issue, well I don't any more!

I still need to check on olive oil, because I think it was giving me a headache, but I've decided to abbreviate the rest of the test, and while I'll phase the rest of the fruits and vegetables back in slowly, I'm not going to be strictly testing them as before.

I'm not thrilled about going casein free. I _like_ cheese. Of course, as I don't expect that my reaction is actually harming my body, I need to find out if my casein reaction is "dosage dependent", as it were. And decide if there are times that I wish to go ahead and have the funny-headed feel for the gain of tasting that fresh mozzerella. (Mmmm... mozzerella... drooool....) Of course, I say this based on the fact that I do NOT think - and have found no evidence to suggest - that casein is damaging my body the way gluten does.

So there are the results so far. I think doing the elimination diet has been worth it. It's hard. And I wasn't able to do as much as I would have liked, but I feel confident in my findings (tested milk twice), and that helps a lot.

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Keep up the good work, Tiffany! :D

Gretchen

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Yeah, that's good to have run all those tests..........if I hit the one year mark and I'm not better, I'm cutting it down to a few staple foods and doing a HUGE elimination diet..........I know I'll go crazy, but I'll just try to hold out as long as I can, test a few things, try to see if there's any improvement. I do have my biopsy Sept. 13, which I'm hoping can clear things up........ulcers or the gluten-free diet not helping my intestines as much as it should......what then, refractory? Anyway, good job.

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i feel for you about the cheese issue. i am also doing the elemination diet, just with dairy. i bought almond cheese yesterday and it tasted a bit odd but enough like cheese to fill the void, and then low and behold, i check the ingredients and casein is listed.

do all cheese substutes add casein?? it would be terrible if you could'nt even have fake chees!! :angry:

also. keep going with your diet!! i think its a really great idea!!

lilliexx

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yep, almost all fake cheeses are not actually dairy free. bother! there's another thread on this, and someone listed a vegan cheese (and I remember seeing one at the store, but could have sworn it had casein... makes no sense, of course), but I can learn to cook around this one too. :-)

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Hey Tiffany:

I've been casein free for 2 months now (gluten-free over 4 months) since receiving my Enterolab test results and soy free for over a month (after experiencing similar symptoms when I tried to substitute soy for dairy products). Learning to cook without dairy or soy is challenging, but definitely doable. ;) My gluten/casein/soy symptoms are both bloating and intense pain, so I'm highly motivated to avoid those. One cookbook which really helped me, not only has recipes, but also has lists of what ingredients contained casein or soy and how to substitute for each. That cookbook entitled "Recipes for Special Diets" Connie Sarros is available through this website.

I believe many of those opiate peptide studies with gluten or casein digests also suggested that people who don't tolerate gluten or casein feel VERY reluctant to abstain from those, since gluten/casein digests stimulate the opiate brain receptors just like morphine. I didn't have much problem eliminating gluten, since I could substitute so many great gluten-free products. However, because I can't substitute soy products for dairy (and don't like rice or almond milks) I REALLY MISSED dairy at first. I must have been REALLY addicted to casein! :lol:

BURDEE

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lol... it's funny, I read the same thing too about the "addictive" properties, and I don't know what it is about me, but I rather dislike the feeling of those sorts of drugs. I remember getting demerol in the emergency room once, and while I've heard of people loving the experience and getting hooked on the stuff, I thought the disorientation and "swimming, multiplying fluorescent lightbulbs in the sky" was ... unpleasant. :-) (Of course, my psych suggests I just didn't like the feeling of losing some control. ;-) )

I had gotten rid of most dairy for a while, just not eating it because I wasn't sure, and it wasn't that hard to _mostly_ eliminate it, but I enjoy cooking with mozerrella every now and again. I still haven't decided if I'll totally eliminate it... I don't particularly get much in the way of digestive symptoms, just the mental ones, and those pass within three or four hours. (So, if I have a few glasses of wine with the cheese, will I ever notice? :-D)

I do definitely think you're right though - it's doable. :-) I feel VERY lucky that soy wasn't causing me problems, and I will try to stay moderate on it so that I am less likely to DEVELOP problems. I'll have to look into the book you suggested, as I'm good with gluten substitutions, but not dairy yet. BTW, I don't know what your stance on the issue is, but I've decided to go ahead and use ghee. Since it's clarified butter, ALL protein (and water) has been removed, so there is no detectable casein (or lactose) in it. Have you tried it?

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Tiffany: My Enterolab test results interpretation said I'm 'immunologically sensitive to foods containing cow's milk', so I avoid lactose, whey, casein and any other dairy proteins. I get really BAD cramping pains, excessive sinus mucous, bloating, acid reflux and constipation from any amount of dairy, so I won't try anything with dairy ingredients. Soy just gives me cramping and bloating, but with equally small amounts. I had rarely used soy before I had to eliminate dairy, so I know my symptoms were soy related.

Instead of butter I use olive or canola oil for cooking, peanut or almond butters with jam on bread and mayonnaise on bread for unsweet things like sandwiches, burgers and even with eggs on toast. I missed milk with cereal for breakfast at first, until I discovered peanut butter and jam on gluten-free breads. That satisfies me longer than cereal and milk ever did! I missed lattes (I'm from Seattle, a HUGE latte city), but I don't need the acid from coffee, even decaf, so that's a plus. Instead of fruit yogurts or ice cream I enjoy sorbets. However, I have to really plan to eat enough calcium, since I don't want to entirely depend on supplements which often lack all the other synergistic vitamins and minerals which naturally aid calcium absorption.

BURDEE

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Tiffany -

This may be a stupid question, but how, exactly, do you do an elimination diet? Obviously, by definition, you 'eliminate' things, but I guess I'm wondering how long you eliminate them for and then do you just track your symptoms once you add the food back in? My youngest daughter seems to have trouble with dairy sometimes, but then sometimes, it seems ok. We've kind of half-way had her eliminate it for periods of time, but we usually go back to some dairy products. It *seems* like when she has a glass of milk (like with dinner) then she'll have complaints that her tummy hurts later, but then with Lactaid, she has seemed to do better. Since she is in school now, it is really hard to track symptoms because she is gone most of the day. We have a four-day weekend now, so I was thinking of trying to eliminate it then to see what happens. What do you think?

Lisa in NC

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There are a couple different ways to do it. I did the hard core elimination diet where you remove EVERYTHING from your diet, aside from a few (in my case, 12, including salt and olive oil for cooking) items that have a very low chance of causing a reaction in humans. It's hard. H A R D. No candy, gum, juice, tea, grains, etc.) It's hard physically, and psychologically. The the point is that, if you've got more than one food sensitivity, it's going to be hard to tell if food A bothers you, if you're still eating food B which bothers you as well. Ideally, this strict diet is followed for a week (and you may well feel WORSE on day two or three as your body goes through withdrawl of all those things that it had been used to getting, but not everyone feels worse), and then you add things back in one item per day, but getting it done within three weeks or so. (If you wait too long, you get to a point where your body may be able to tolerate a bit of the substance again, and it will be harder to notice a reaction to it.)

I could hardly handle it, and heck, technically dropped out of doing it completely. I can't imagine putting a kid through something like that.

You can do an elimination diet where you simply remove the offending foods, and leave all other foods that you are not supsicious of in the diet for a week or so, then try having plenty of one of the suspicious foods one day. You must be very strict about eliminating, in this case, ALL dairy (no butter! check for sodium caseinates and other hidden casein names and the like in ANY packaged product) for that week though. I found dairy to be a slightly trickier one, because you have to worry about both the casein and the lactose. So the first test I did was on Lactaid milk as my ONLY source of dairy. (And I drank 3/4 of the half gallon that one day! Ugh!) It was a little tricky, because I never liked the sweetness taste of Lactaid, but I ended up feeling dizzy/woozy/fuzzy-headed (not really so much of the stomach/intestinal pain for the most part) almost exactly two hours after having it. Because of the two issues - casein and lactose - I'd definitely test them separately, and, of course, the casein first, since you can get lactose-free and casein-full, but not casein-free and lactose-full. :-)

I don't really think a four day weekend is enough to pull it off, but if you could start cutting out all milk now, and test her with Lactaid on, maybe, the day right after the vacation? I hope it's just lactose for her, 'cause that's an easier one to deal with. :-) (Though I did find a very tasty vegan, gluten-free, soy-pudding... :-) )

Almost forgot:

Yep, detailed food diary, and tracking every symptom. (I walked around with post-its and a pen. :-) I put something in my mouth, I write it down. I feel something (head, stomach, anything), I write it down. I have a bowel movement, I write it down (in more detail than any passerby would want to read if they picked up the post-it! ;-) ). Kinda time consuming, but VERY important.

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Tiffany,

It was very interesting to read your account of how you did your elimination diet and also the way you kept such a strict diary of every little thing. It sounds like something that would be good to start doing.......elimination diet will come if I get over a year with symptoms and absolutely fed up.......no matter how hard it is for me to give those things up I'll try to do it........actually, I'm thinking it would be hard to do this during the school year, cause the chef at school chooses what gluten-free meal is made for me so I don't have control over it........and doing a detailed tracking of bowel movements and every potato chip or piece of candy or drink that goes in my mouth during the school year might be a pain........during the summer I could really concentrate on it........so, I guess if it goes......1 year, 5 months then I'll do that......wow........I can't imagine it going that long! Anyway, it was very interesting to read about what you did. If I choose to do something like this I might make a post on exactly what to test for........what are commonly problematic foods I could try.

Sue,

I had heard about that.......that somehow because you get sick from it you....crave it and want it more and get addicted to it.......it's actually quite interesting, cause one might think that your body would realize this and would actually show an aversion to those foods, but I think I'm a good example of this theory. Every day for years, I'd have a large NYC bagel (or two) for breakfast.......EVERY DAY.......I was constantly eating breads and bagels and all this gluten. I constantly craved pizza, in particular, when my symptoms began to get worse.....I did notice, however, that every night I ate pizza for dinner, I'd be keeled over with cramping and vomiting hours later........but I didn't do that when I had my morning bagel......strange. Anyway, also very interesting.

-celiac3270

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Tiffany -

Thanks for the info on the elimination diet!! I agree....it would definitely be tough on a child!!! Luckily, at this point, I'm only seeing one thing (dairy) that my 6-yr-old seems to be having trouble with. It's weird, too, because the times she has been affected the worst have usually been after she's had a stomach virus - it will take her sometimes a whole month before she can eat dairy without saying she has a tummy ache. The confusing thing is that then she'll seem fine for a while when it is re-introduced, then something will trigger it again. Maybe it is what you were saying about not waiting longer than 3 weeks to add it back in...that would make sense as to what happens with her. I think it would be much easier for me to do it because I already have such a limited diet, there's not much left to test...ha...ha...ha!!! Hopefully, one day, I'll be able to add some things back, although, I must say, as long as my symptoms keep improving, that is motivation to keep eating the way I am!! Thanks, again for the explanation!!

celiac3270 -

Interesting observation about the pizza causing the vomiting, but not the bagel. I can't help but wonder if the fat in the pizza was a trigger. I believe I read in another post that your gallbladder had already been checked. When I had an ultrasound in Feb 03, it showed no stones, so they said I didn't have gallbladder trouble. By May, I was so bad off and they did a HIDA scan to check the functioning of my gallbladder and it was only functioning 1%, so out it came. I always wondered what had happened, and now, after being diagnosed almost a full year after that with Celiac, I have to wonder if the damage caused by Celiac is what caused my gallbladder to go or if my gallbladder went and the delay in removing it triggered Celiac. I suppose I'll never know, but I wish you the best of luck in your recovery!!

Lisa in NC

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i am starting a mild version of the elemination diet. i'm sticking to fruit,veggies,meat,nuts,& small doses of corn, rice & soy until my symptoms go away. i dont think i could ever do what tiffany is doing!! even on my version of the elimenation diet i find myself constantly starving during the day. i can eat tons of fruit,veggies & meat and it just doesnt fill me up the way dairy products do :unsure: i did find that avacados fill the cheese void a little.

Burdee: i am in seattle too....i'm not sure where you shop but larry's market has tons of gluten free products. i just wanted to let you know that incase you didnt know!

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if you find your symptoms not going away, you might want to take out the soy, and then the corn. soy is a fairly common problem, and corn can be too, depending on your particular system. good luck! I hope you find what's bothering you!

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I've been doing the soy free and casein free diet (in addition to gluten-free) for 6 days now. I wouldn't be able to make it without the goat cheese. It doesn't have the bad casein like cow's milk does. It's still hard though, I miss my cottage cheese but already I feel a whole lot better. I should have done this 5 months ago when I went gluten-free, but it was hard enough just doing the gluten-free diet! I want to do this for a few months and then see if I can introduce the dairy back. Hopefully the intestines will be healed enough by then.

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Terri:

Do you or members of your family have any diabetes history? According to Ron Hoggan's "Dangerous Grains" book, gluten, casein and soy are diabetogenic foods. He speculates that consumption of those 3 ingredients has influenced the epidemic of diabetes during the past several decades. My father, his mother, grandmother and greatgrandmother all had and died from diabetes complications.

I am gluten/casein/soy intolerant. Not having soy to substitute for dairy was TERRIBLY DIFFICULT at first :angry: but I eventually adjusted and found many new favorite foods. My initial desperation and dairy cravings just told me how 'addicted' (ala casein digests and opiate peptide theory) I was to dairy. However, excruciatingly painful symptoms from those 3 ingredients motivated me to find substitutes. I'll take feeling healthy and painfree over my former dairy, soy and gluten 'favorites' any day! :D

BURDEE

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Terri -

Can a person handle goat cheese if their villi are damaged? That is something that is confusing me!!! I desperately would like a substitute for cheese and have tried some goat's milk as an alternative for cow's milk when cooking, but haven't been brave enough to drink a glass or try goat's cheese. Also, do you know if the fat content is as high in goat's cheese as it is in cow's cheese? I hope you are doing well with the substitution!!!

Burdee -

I bought the book "Dangerous Grains" but haven't read it yet since I bought a whole bunch of other books at the same time and have been glued to cookbooks and these Celiac forums. I suppose I should break down and read it since it is fascinating to me what you said about gluten, casein, and soy being diabetogenic foods. Diabetes runs in my family and I had gestational diabetes and am being tested for Type II in November since I have had some elevated fasting blood sugars. When I was in the process of trying to figure out what the heck I was eating that was causing me so much trouble, I was able to figure out without a doubt, that soy messes me up big-time. I get really foggy-headed and feel like my blood pressure is dropping. I've been off dairy for a long time because of the stomach pain it was causing me (I assume from the damaged villi), but I used to eat a lot of it. I'm glad you mentioned that about the book, because now I am going to actually read it instead of just walking past it!!!

Lisa in NC

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i dont think i will need to bother introducing dairy back into my diet. I am 1 week dairy free and i havnt felt this good in a long long time. i have been using a non dairy creamer and fake cheese with milk proten and they havnt bothered me. i will officialy go to the doctor this week and have a test to see if i am lactose intolerent. but until then i wont be consuming any dairy!

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If you're just lactose intolerant, you can try adding dairy back in after a few months (so your intestines have time to heal, and the villia (the tips of which produce lactase) can do their thing again), or try using lactaid - a supplement of lactase that allows you to digest the milk sugar. (Unfortunately, there isn't any such thing for the milk protein. :-/ )

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Hi,

Sorry I took so long to reply but 3 days off will do that! :) No one in my family has ever had diabetes so that's a relief! Goat cheese has casein also but not the alpha casein that cow's milk has. Goat milk is far closer to human milk than cow's milk is. I have had zero reaction to the goat cheese and I've been eating a lot of it! Someone mentioned on another board that feta cheese was okay. Not sure about it but I bought crumbled goat cheese to use on my salads. For some very interesting reading about the ills of cow's milk you might want to check out www.dogtorj.com He's a vetrinarian with Celiac that has done a tremendous amount of research into what makes us sick. I felt wonderful by Saturday and then we had company and she brought a dip and there we go! But, I'm back on the elimination diet again and will have more willpower this time! I think the fat content is only 5 grams with the goat cheese and 10 grams with regular cheese. I am now not eating gluten, casein, soy or corn for the next four days. Then I'll introduce one thing back and measure my reactions. I found Smart Beat mayo has no soybean oil or dairy and only 10 calories, so I used that in my chicken salad today. Good luck everybody!!

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Terri -

Thanks for the info!! I'm definitely going to buy some goat's cheese and see how my daughter and I like it. I tried to buy some more goat's milk over the weekend and the store only had two cartons that had both expired. ARGH!! I'll have to go back tomorrow and see if they received their shipment yet. I made a gluten-free pizza crust using the Chebe mix on Friday - it was kind of crunchy, but had a neat flavor - we both liked it (although if my older daughter had been here, she would have hated it), but I was so worried about trying cheese that I only ate a little bit and then pulled the cheese off the remaining pieces to eat the next day more like bread sticks. I'd like to just be able to enjoy the pizza and not worry about what the cheese is doing to me. I will definitely check out the website you mentioned. I've still been using Hellman's mayo...let me know if the Smart Beat tasted any good and I'll have to be on the lookout for that. I really should get myself motivated to do an elimination diet with eggs, but I avoided them for so many years, I've been enjoying having them back in my diet, but I am noticing some problems again, just not as severe. I haven't been doing any dairy and I know soy bothers me, so I've already been avoiding that for the most part, but it is also hidden in things like the veggie broth in tuna packed in water and the salmon packed in water. I've been eating those little bits occasionally and have been fine.

As an off topic thing, I noticed you are from NOVA. I grew up in Vienna, VA and moved here to NC in 1998 for my husbands work. I miss VA!!! Do you live close to Vienna? My parents still live there and my brother lives in Chantilly.

LISA in NC

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Hi Lisa,

Yep! I work in Tysons Corner and as you know, Vienna couldn't get any closer. My husband works in Chantilly. Small world. I think that six degrees of separation theory really works! My husband probably knows your brother, ha ha. I read some more on the goat milk cow milk thing. A lot of people who are allegic to cow's milk are also allegic to goat milk. However, if it's the casein you're allergic to, then goat's milk will not be a problem. So, the best thing to do is to test it. I didn't know about the soy in tuna. All tuna? I love tuna. I'll just wash it before I mix in the mayo. That should take care of it! The Smart Beat worked fine. I made chicken salad with grapes and walnuts and craisins and used the Smart Beat. It was delicious. See, we can find lots of yummy foods to eat. Like you, I'm a pizza nut, so will be trying one soon with goat cheese, or just mozzerella and suffer the consequences. I figure we can cheat sometimes with the dairy unlike with gluten. I mean, we wouldn't damage our intestines with dairy right? We just get some nasty reactions. I don't know, this is still so confusing.

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The last thing I read on cross reactivity between cows milk and goats milk suggested that, since there is some of all forms of casein in both (albeit at decidedly different proportions), some people may not tolerate either - even if it's the primary cows milk casein that's bothering them. But some people may tolerate goats milk where they won't tolerate cows, so it's certainly worth a shot! (I should try it out soon!)

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Terri: Thanks for that website www.dogterj.com. He wrote soooo much about the three ingredients that zap me (gluten, dairy and soy). I understand much better how I will probably never be able to consume any of those without bad reactions. I kept reading posts about how intolerances other than gluten would disappear after my intestines healed. After reading his website I don't think I want to ever consume soy, dairy or gluten again. :o

BURDEE

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You're right Burdee! I don't either. It helps a lot to read it. And what he said about Menopause was so true in my case! He said soy, dairy and grains produce too much estrogen in our bodies which can cause hot flashes (in a nutshell, he goes into a much more expansive explanation) and by eliminating those foods the hot flashes, etc. should be vastly reduced. Works for me! I'm sleeping like a baby now too. This is all listed under his appetizer section if you want to read more. I also got Dr. Mercola's book and he advises giving up all grains including rice and all starches. That's not very easy. I lasted 36 hours. ;)

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