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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I'm Having A Break Down.. I Need Help Please
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Skittles    3

I feel like I am losing it :( I don’t know what to do.. my dietary issues are consuming my life. Due to stomach issues I have eliminated gluten (diagnosed celiac), cannot eat gluten free products either as they give me issues, eliminated fructose (which eliminates many fruits and veggies), nightshades, corn, and dairy. I hate eggs but I have been trying to force myself to eat them so that I would have another food in my diet. I had been eating rice which was going okay but I think I am having an issue with that as well.. maybe I am eating too much of it? But I literally don’t have anything else to eat. Meat seems to be the only thing I don’t have an issue with. My stomach is literally growing bigger and bigger by the day. Not fatter, but bloating.. the more I try, I am actually getting worse. My doctor doesn’t help me. I feel like I am going to have a panic attack just thinking about what to eat today. I don’t know what to eat?? I just want to starve myself. I may seem dramatic but I can’t do this anymore. I don’t know what to do. How am I going to survive when everything I eat bloats out my stomach and causes me to be in pain. I am starving. I am freaking out :( I am losing all hope.. i need help

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ciamarie    23

Hang in there! It does get terribly frustrating sometimes, but you'll get through it. My non-expert suggestion would be to eat what you can, and if that means only eating meat and possibly rice for a few days, then do that. When you say you may have problems with rice, is that brown rice, white rice or both? Brown might be a bit harder to digest, however if you're also reacting to corn products you may want to try rinsing white rice before you cook it. That will remove the added nutrients, because apparently they're applied by way of something derived from corn. Dextrose perhaps?

Also, try very well cooked veggies such as carrots, green beans, squash and possibly peas. I'm not sure how any of those would fit with the fructose issues, though.

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L.J.    6

Hi Skittles! Hang in there...I totally understand about freaking out about what to eat! :rolleyes: I too am very limited on foods as well. Like Ciamarie said, white rice versus brown rice affects me differently! White rice, chicken, and beef are my safe foods. A little broth (home made if possible) is great with the white rice.

When I had my freeeeeeeek out--I sat down and made a list of my "safe foods"--I too was starving and have lost alot of weight that I didn't really need to lose. The bloating happens for me when I eat something that I call "poison for my body". A bit dramatic to call it that, but it was how I felt! :lol: Once I could see the "safe foods" I could eat--I felt a bit calmer. I had a little more sanity knowing that there are foods I can eat--I just have to find them!

Do you have anyone close that can help you figure out (in person) the foods you can eat? None of us make it through all of this alone! This forum has been a great place for me--at times when I felt hopeless too! Don't give up! Try to not panic. And keep talking here!!! Seriously, I am concerned about you! Just remember, you are surrounded by people who truly understand the panic that eating foods can cause us! Protein in the meat helps my hunger attacks! I seriously get ravenous and *have* to eat...But I try to eat small amounts more often--which may sound scarey to you :( Just keep talking, OK??? :D

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Em314    7

If you're having this much upset about the dietary changes on a regular basis, and if this board isn't adequate to help with that upset (you'd be the best judge of that), joining a support group IRL, or seeing a counselor for a bit might help with the adjustment and the upset. It sounds like it would be very difficult to be that restricted, and extra support might help you deal with the emotional side of it. Even meetup.com might have something in your area, depending where you live. Getting help on the internet is useful, but there's nothing quite the same as having a supportive fellow human being in the room with you when you're feeling awful.

I was going to ask if there were any nuts you could eat, but a cursory search tells me that many of them fall under the "fructose" category.

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Skittles    3

Thanks guys for the support and help. I am just going through a very tough adjustment period. I am finding ti very difficult. I do have an appointment to talk to a psychologist on the 18th of this month so I hope that he can help me with some coping mechanisms. In the mean time I just have to figure out my safe foods. It just seems like everything right now is making me feel awful :/

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Ahh,

I could have wrote this about foods myself. I can't eat grains, dairy, or store bought flours recently in my refrigerater. However, I now have a two month plan with a 4 day rotational diet plan. I don't think I will be starving.

Tonight I had:

zucchini

sweet potato

carrots

fennel bulb

Buffalo patty

butter

olive oil.

WOW. I don't usually eat that many vegetables, but I thought my husband (the cook on Sunday nights) gave up on cooking for me. Meanwhile, he made zucchine. I had forgotten I put the sweet potato, that I had waited for atleast 4 days to be able to have, in the oven. Thus I had many veges tonight!

Meats also are very good for me.

I hope this is just a temperary frustration and you will feel more able to cope soon.

Diana

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red island    6

I definitely had horrible digestive issues when I ate brown rice, early on when i went gluten free my reactions were alot worse than they are now - I have not been glutened in the last several months but I have recently become lactose intolerant and possibly corn as well. And the bloated stomach is the first thing that happens - I know how awful that feels. On my bloaty days I try to eat less and drink Boost meal replacements, they are gluten-free and lactose free so OK for me. That seems to help my stomach as its easier to digest. The one thing that has saved me over the years (I went undiagnosed for 8 yrs) was acupuncture. It relieves my digestive system, and it relaxes me and takes me to my Zen place which is exactly where I need to be on those bad days.

Hang in there...

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gatita    32

Aw (((skittles)))

So sorry you're going through all this... and I can so relate. I went through about four months of feeling like ANYTHING I ate was going to make me nauseous and sick. And it usually did. I even went through days last month of eating almost nothing because I was so dang tired of it all!!!

Finally, in month five, things at last seem to be settling down and the bloating is going away.

I hope this is temporary for you, too... I don't have any smart advice, but am hoping this is just a phase that will pass quickly for you.

(((hugs)))

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Highflyer    2

What helped me at that stage of things was sticking with meats, fish and poultry (the most nutrient dense foods) and well cooked veggies (the ones you can tolerate). Make sure to get some healthy oil in your diet as well for calories which means energy (ie. cold pressed olive and coconut oil). If your energy is low adding more oil will increase energy. Start with smaller amounts of the oil and build up to a couple ounces per meal. Ripe bananas (with spots on them) are usually well tolerated. Take bone broths (homemade) as much as you can with sea salt. Keep a food diary and record your symptoms to see what works and what doesn't work for you, stick with it and it gets better.

Also, I have taken whey isolate with no reaction (best to take the ones without sweeteners and excess flavorings and cold processed). Boost and Ensure etc all have dairy in them so those were never an option for me. Whey isolate is lactose and casein free and is normally tolerated by people who have problems with dairy...gives you some calories and protein as well as a bunch of amino acids.

I feel for you...it will get better.

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Chaff    9

Skittles -- I couldn't eat (white) rice without problems until I soaked it for 24 hours first. It's worth a try. I've also heard this can help with nuts, but I haven't had the courage to try just yet (I can't eat any human quantity of even safe fruits and vegetables -- just doll quantities. Anything over an 1/8th a cup at a time and I get dizzy.) I can't handle almonds, but almond milk is OK, for example.

Have you tried digestive enzymes and probiotics? Might help, might not.

My stomach is also bloated and I'm having C. It's not my favorite. Just to comiserate -- I am eating the same few foods over and over, and don't have enough options to have any variety at all. BUT if you can stick with it, it will almost certainly get better and you can start adding new foods.

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Coryad    1

Skittles I feel your pain (literally). I have celiac, food mold allergies and a host of other food issues.... It is overwhelming!!! I had to take my diet down to 3 foods, broiled chicken, white rice (not minute rice) and green beans. I ate this way for 1 week to get my system back in balance.... it was hard, it was boring but it helped me tremendously. I slowly added other foods back in and noted when something didn't agree with me. It's a total PITA but you'll get there... maybe seeing a nutritionist would help? I've never been to one but maybe someone else could chime in.

{{{hugs}}}

Cory

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GottaSki    459

Hi skittles!

I coulld have written your post myself too many times to count.

Here's what I can tell you...it will get better. Once you figure out a safe diet and start to feel a bit better it all becomes much easier to deal with. Never easy, but much much easier.

One thing that has helped me with my most recentt improvements was to remove all supplements - they were just too harsh on my gut that was reacting to everything. I will be adding them back in one at a time - very slowly.

Hang in there :)

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Skittles    3

Do you, or anyone else, have a recipe for home made broth?

Hi Skittles! Hang in there...I totally understand about freaking out about what to eat! :rolleyes: I too am very limited on foods as well. Like Ciamarie said, white rice versus brown rice affects me differently! White rice, chicken, and beef are my safe foods. A little broth (home made if possible) is great with the white rice.

When I had my freeeeeeeek out--I sat down and made a list of my "safe foods"--I too was starving and have lost alot of weight that I didn't really need to lose. The bloating happens for me when I eat something that I call "poison for my body". A bit dramatic to call it that, but it was how I felt! :lol: Once I could see the "safe foods" I could eat--I felt a bit calmer. I had a little more sanity knowing that there are foods I can eat--I just have to find them!

Do you have anyone close that can help you figure out (in person) the foods you can eat? None of us make it through all of this alone! This forum has been a great place for me--at times when I felt hopeless too! Don't give up! Try to not panic. And keep talking here!!! Seriously, I am concerned about you! Just remember, you are surrounded by people who truly understand the panic that eating foods can cause us! Protein in the meat helps my hunger attacks! I seriously get ravenous and *have* to eat...But I try to eat small amounts more often--which may sound scarey to you :( Just keep talking, OK??? :D

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Skittles    3

I never realized that the boost meal replacers were lactose free.. maybe I will try them.. thanks!

I definitely had horrible digestive issues when I ate brown rice, early on when i went gluten free my reactions were alot worse than they are now - I have not been glutened in the last several months but I have recently become lactose intolerant and possibly corn as well. And the bloated stomach is the first thing that happens - I know how awful that feels. On my bloaty days I try to eat less and drink Boost meal replacements, they are gluten-free and lactose free so OK for me. That seems to help my stomach as its easier to digest. The one thing that has saved me over the years (I went undiagnosed for 8 yrs) was acupuncture. It relieves my digestive system, and it relaxes me and takes me to my Zen place which is exactly where I need to be on those bad days.

Hang in there...

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GottaSki    459

Simmer chicken or turkey with salt and onion for a couple hours - longer is fine.

I usually use the carcass of a roasted bird leftover from previos nights dinner, but you can start with fresh meat too.

Make in the largest pot you've got or two! Keeps for a few days in frig and freezes well :)

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Highflyer    2

I never realized that the boost meal replacers were lactose free.. maybe I will try them.. thanks!

I hope that works for you. There is also product called Absorb Plus that is very good, tolerated well and more nutritious than boost.

I add celery, carrots, garlic, as well to my broth and strain them out to drink it. Sea salt adds minerals.

I also made pureed soup out of the things I could tolerate to make it easier for my system to digest until things were functioning better.

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L.J.    6

Gotta Ski gave you a great easy recipe for homemade broth! I usually buy my favorite parts of the chicken (for me, thighs)--and I buy the family pack! I can cook some of the chicken for that night the way I like--in the oven, grilled, etc. and have some extra for the next days... :P

The same night, I will take some of the thighs, breasts, or the carcass (your choice)--and simmer for several hours until the chicken is done and the broth is yummy. (Add plenty of water to the big pot--it cooks down while it is simmering!). I do not presently use any onions, seasoning, (not even salt)! Many of us react to those yummy spices--but many make our tums go craaazzzzyyy! :lol:

So, the *best* thing--is you have "snacks" of healthy food and you know they are Non Gluten!!! and non allergenic--because *you* made it! :D

Second best thing--you have an ample supply of food stocked in your fridge for those "starving right this second" moments that we have! If you feel like it--and want to try it--cook some rice (either with your homemade broth or with water)--again, no seasonings for me! (OK, I have found through slooowwww experimentation that I can eat pepper--that's it!) But to start with--I would just stick to the basics!!! And, you will LOVE having yummy foods available that you can eat.

I too have used "Boost" -- no lactose, no chocolate, no strawberry-- the plain version...(fewer ingredients at first is better). One small bottle of Boost gives you @270 calories--but I tried it in sips at first too....Everything slow and easy! To this day, I have not drank an entire bottle of it. I am *that* careful about adding new foods--especially processed ones! Happy cooking and Eating! :P It does get better! ^_^:D:lol:

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eers03    20

Skittles,

Hey you! If you or someone you know has an iPhone, check out Foodily. It's an app that you can set up to give you recommendations for dinner, lunch, or breakfast recipes based on the dietary restrictions you input. Its a free app.

One thing I would keep in mind is that ones nerves, or anxiety can do funny things to our appetite and stomach. I've had foods that I thought I may be reacting to that I tried again later and was fine. (except gluten) Maybe you could try going back to square one on certain items and take a balanced approach to eating that eliminates gluten.

Try changing your meals up... Its hard to be excited about eating if nothing sounds appetizing. Take the eggs... Instead of just having eggs for breakfast, get out an extra pan and saute some onion, green pepper, and a little ham. As your eggs take form in the other skillet add your sides and make an omelette! Or, scramble your egg, toast some Udi's gluten free bread, butter it, throw a slice of bacon in the microwave in a paper towel to absorb the grease and have an egg sandwich.

Rice noodles are easy for spaghetti with sauce or alfredo (gluten-free of course). You could add some chicken to the alfredo or shrimp--or brown some hamburger to add in with the sauce. Its usually tasty as a leftover too in case you aren't in the mood to cook.

You can always load up a baked potato! A little sour cream, cheese, bacon...

I know they say to stay away from processed foods but if you want a few Ruffles with your sandwich, do it! Try an Izze soda! It's fruit juice and sparkling water. I use it as a treat instead of some of the other soft drinks. Keep some different teas around, I've been drinking more green tea. I try to limit my coffee intake to the morning hours and usually drink a light roast. Its a nice pick me up but if I have too much or a dark roast, my stomach tells me.

I'm sure some of this won't work for you but hopefully some will. I think a balanced approach of some meat, some carbs, a pinch of veggies, and a pinch of some frozen blueberry's or frozen raspberry's and staying hydrated helps me considerably.

Also, go to the mainpage and look up one of the Celiac support groups. I did this and talking to someone live in my community helped me alot. We shared ideas, tricks, restaurants we trust, stores we love, and some symptoms we don't care for! It takes away the feeling of isolation and anxiety for me. Reality is, good people get down sometimes. You can do this. I promise there is someone with worse symptoms than us that was able to shake them and is living a happy life right now. I want that to be me and it can certainly be you.

Good luck!!! Keep being proactive but I wouldn't write off all your dietary options unless you absolutely know you have to sans gluten.

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