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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.

Intro And Need Some Help And Advice
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7 posts in this topic

Hello, I'm new here and new to this food intolerance thing. I've suffered with chronic migraines, headaches, insomnia, fatigue, and muscle problems for years. Have been through the traditional dr. route with pills and more pills, and being told it's my imagination etc. So after reading some interesting stuff about gluten problems I decided to get tested. Just found out a few weeks ago that I have problems with gluten, casein, soy, walnuts, and cashews. So, since I found out I've tried to eliminate them from my diet (man that's hard) I'm just starting week 4, and if anything I feel worse instead of better. I've tried my best to be strict about what I eat, but I haven't prepared everything myself so I suppose it's possible something slipped in. I'm really anxious to move on to the trial and error phase of adding little bits back in, hoping that perhaps I'll be able to have a little in my diet, but am thinking that perhaps 4 weeks isn't enough.

So I'm looking for recommendations,

How much longer before I should start to feel a difference?

Should I be more strict and prepare everything myself?

If I get way more strict should I do another 4 weeks, or would I be able to go for a shorter time since I have already cut most if not all of it out all ready?

How long should I wait before I add things back in?

I will admit I haven't been eating that great, it's been allergy free, but not exactly healthy, could this still be a problem?

I haven't been watching sugar intake at all since it didn't come up as an allergy in testing and I've been eating things like corn chips and allergy free hot dogs

Do you have any suggestions for diets I could follow to make this easier. I live alone so I'm only cooking for one which makes things hard, plus with the fatigue etc as I'm sure all of you know cooking and cleaning up after is almost impossible. Any help and advice any of you can give me would be appreciated

Thanks

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Hello, I'm new here and new to this food intolerance thing. I've suffered with chronic migraines, headaches, insomnia, fatigue, and muscle problems for years. Have been through the traditional dr. route with pills and more pills, and being told it's my imagination etc. So after reading some interesting stuff about gluten problems I decided to get tested. Just found out a few weeks ago that I have problems with gluten, casein, soy, walnuts, and cashews. So, since I found out I've tried to eliminate them from my diet (man that's hard) I'm just starting week 4, and if anything I feel worse instead of better. I've tried my best to be strict about what I eat, but I haven't prepared everything myself so I suppose it's possible something slipped in. I'm really anxious to move on to the trial and error phase of adding little bits back in, hoping that perhaps I'll be able to have a little in my diet, but am thinking that perhaps 4 weeks isn't enough.

So I'm looking for recommendations,

How much longer before I should start to feel a difference?

Should I be more strict and prepare everything myself?

If I get way more strict should I do another 4 weeks, or would I be able to go for a shorter time since I have already cut most if not all of it out all ready?

How long should I wait before I add things back in?

I will admit I haven't been eating that great, it's been allergy free, but not exactly healthy, could this still be a problem?

I haven't been watching sugar intake at all since it didn't come up as an allergy in testing and I've been eating things like corn chips and allergy free hot dogs

Do you have any suggestions for diets I could follow to make this easier. I live alone so I'm only cooking for one which makes things hard, plus with the fatigue etc as I'm sure all of you know cooking and cleaning up after is almost impossible. Any help and advice any of you can give me would be appreciated

Thanks

I'm a little reluctant to respond because you're not going to like what I have to say.

First, your life just changed. You have found out what has been making you feel bad, but I think maybe you're still doubting that this is a long-term thing. You can get to feeling better, but it will take a TOTAL commitment on your part, not just kinda sorta half-way thinking about doing what you should. Sorry to sound harsh. But, you do need to accept that things are different, or you won't get to feeling better. Yes, you need to be more strict and prepare everything yourself. Don't even consider adding things back until you have been feeling GOOD for a long time - and, maybe not even then. This is probably going to take much longer than 4 weeks to really see a big difference. I don't know where you live, but I live in a good-sized city and it's still impossible to find ANYPLACE that is truly safe to eat, except at home in my safe-zone kitchen.

Second, you need a lot more information. Read, read, read. Learn all you possibly can. Books, online, magazines, there is a lot of info out there. I doubt that what you have been eating is truly "allergy free". Soy is almost impossible to avoid in anything that has been prepared. I think it's harder to avoid than gluten. Did you go through your kitchen and do a huge purge, throwing out anything and everything that you can't eat? Do you know about cross-contamination? Do you read EVERY label, EVERY time?

Third, you CAN do this. I live alone, too. And I have problems with everything you do (except the nuts) and also cannot eat eggs, turkey, peppers, lots of spices. So, I understand. You need to take care of you and that means finding out how to feed your body safety and to help you start feeling better. Go shopping and only buy from the outside aisles at the store - fresh fruits and veggies and very plain raw meat (with no added soy). This is what you need to base your meals on. There are some good cookbooks available. Give yourself permission to get at least one of them. Plan ahead and don't be without safe food.

I wish you the best. This is a hard road we are on, but it's not impossible.

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Hey! And welcome. A lot of advise would be determined by the testing that you have had. Have you been tested specifically for gluten or Celiac Disease?

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I had tests done myself by Enterolab. I've never been tested for celiac. I'm with Kaiser and they have been extremely reluctant to do much testing, all they want to do is give me pills so at the moment I'm steering clear of the drs. I do see a chiropractor who deals with natural supplements and alternative healing methods.

Yes I suppose I am still in a bit of denial. I have thrown out the majority of food that has a problem the exception being a bunch of stuff in my freezer from a company called Dream Dinners. It's a place where you go that has all the ingredient available for you and you prepare the food yourself. Then all you have to do is cook it. These are high quality meals that weren't cheap, but they do have some ingredients in them that I shouldn't eat. Not a lot, we're talking a bit of soy sauce in a marinade or 1 tbsp of butter, so I have hopes that while I'll never be able to eat a grilled cheese sandwich, a little bit of butter won't hurt. Perhaps I'm dreaming. Perhaps I should just give these meals to family, but I really can't afford that.

When cooking at home I do read the labels completely. I have heard of CC, but don't really know how strict I need to be. I cleaned my kitchen after I tossed everything, have no wood cutting boards or utensils, and so far haven't used my toaster. Those were the things I heard about the most, do I need to be even more strict. I've heard some people talk about shampoo and lotion etc. but that seems crazy.

I know unless I cook it myself I can't know 100% that it's safe, but how do you possibly cook all your meals. What about when you're out and about? What about when you're someplace that is hard to bring your own food to (Disneyland, football stadium)? What about going out to eat with family and friends? I know I'm probably reaching for excuses, but these situations do come up. Plus I have a tough time cooking for myself a few times a week, I can't even imagine doing it for every meal.

You mentioned reading and cookbooks...do you have any good recommendations? I've been scouring the internet for info since I started to suspect this might be a problem, but a lot of it seems to contradict itself. As far as cookbooks, I've found some that were gluten free, but haven't found one that is gluten, casein, and soy free. I do have the grocery guide from Cecelia's marketplace, but most of the products I've never heard or and so far haven't been able to find.

Thanks for the input so far and I'd appreciate any help anyone else can give me. It is nice to be able to talk to someone who understands. My family doesn't really get it, and thinks I'm just being difficult. I know part of it is that they are frustrated with more poor health and are tired of helping me support myself since I can't really work, and they can't imagine that food is going to help where drs. couldn't. And since I can't guarantee that this will solve my health problems I think they think it's a waste of time and a inconvenience.

P.S. What do you guys do for Thanksgiving? I'm pretty sure I can manage the gluten and soy, but how do you avoid the dairy? Butter seems to be in everything, I mean it's even put on the turkey.

Thanks

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Hi, again, Shayori.

Two cookbooks (for multiple food intolerances) that work well for me: Free for All Cooking by Jules E Shepard has lots of good information and fairly easy recipes, the other is Cooking for Isaiah by Silvana Nardone. It's gluten-free and dairy free. Another good book for information is the gluten-free bible, but the recipes do have dairy, so you would need to substitute.

Do you have a good health food store nearby? What about a library that might have books you can check out to learn more? A good bookstore?

One way to avoid having to cook EVERY meal, but yet still cook everything you eat so you know it's safe, is to deliberately cook more than you need for a meal and have leftovers. That works well for me. It's also a way to have safe food to take with you when you go out. Planning ahead is a huge help. It's almost impossible for us with multiple food intolerances to just "wing it". The chances of safe food being available are very slim.

Will you be going to someone else's house for Thanksgiving? Is it possible you could have ham, instead of turkey (with butter)? Hormel Cure 81 ham is gluten free and dairy free and soy free. Maybe you could take the ham yourself? Then you could be careful that it didn't get cross-contaminated.

Soy is pretty easy to avoid if you are cooking from scratch. But, LOTS of ready-to-eat foods have soy in it someplace. I found some gluten-free crackers that I love. Oops. Didn't see that soy on the label.

It can be overwhelming. But, the more careful you are, the sooner you will feel better. We all overlook something or take a chance, and wind up paying for it. Hang in there. :)

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The thing about the intolerances you have mentioned is they could always be an issue. It's hard to say if you will be able to introduce them back into your diet with having issues. There's a lot of factors involved when it comes to getting better....how much damage has been done, what damage has been done, what you are doing to correct any damage, I too believe age and sex makes a difference, and then being persistant will also determine your recovery time.

As far as Thanksgiving is concerned, if I were invited to someone else's house I would be taking my own little meal with me, possibly take a gluten-free dessert to share. If going out, be very very careful! If staying home, you can make your own wonderful gluten-free recipes!!

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Sorry to hear about your intolerances. I know it is difficult to work with multiple ones.

I would have to agree with the other posters that encouraged you to shop the "outside" of the store. At this point you're wanting to be very gentle to your digestive system. Try to go a little bland, and let things work out slowly. I would steer clear of the processed foods for now.

I totally understand being tired. I'm single, cook my own food etc. I've found that making extra when I cook and freezing portions works nicely for those days when I don't have time or energy to cook. I have a baby crockpot that I use almost every day in the winter. You can get pretty creative with it, throw everything in the pot the night before and let it simmer while you're at work. Hopefully your fatigue will slowly work itself out, but be kind to yourself as you're healing.

As far as thanksgiving goes, I am planning on bringing some of everything over to my folks. Milk and dairy is hard to avoid at stuff like this. I make mashed potatoes with broth (yummy!) I don't put butter on turkey, try rubbing it in olive oil. It is going to be hard to get your mind wrapped around all the modifications you will need to do and try and have a normal holiday season, but it can be done! Good luck, I promise it gets easier. As you start feeling better and getting used to your new lifestyle everything will start running smoother.

Good luck!

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