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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.

Worried About Starvation
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21 posts in this topic

Hi, I'm 26 years old and I was diagnosed with celiac yesterday by intestinal biopsy. I have stopped eating gluten since then. However I'm concerned about being malnourished. I'm very thin and also anemic. I'm barely eating right now, I have no appetite at all and it seems like *anything* I put into my stomach sits in there like rocks. I'm 5,5 and 114 pounds. What do we do in the meantime before our intestines heal to get nutrients?

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As your intestinal tract heals you will be more healthy as you will be actually absorbing te nutrients from the gluten-free food you eat... before going gluten-free your body was not getting any nutrients from the food you ate, so in turn your thin & not wanting to eat anything...

It can be quick in recovery time ( some notice a difference quickly others its can take several years) So give yourself time to begin the healing process....

Start out with basic simple foods ......ie: plain naked foods......don't jump into hot & spicy!

There is alot of knowledge that you need to learn & you can't do it over night. It is a learning process that grows with you. I've benn gluten-free for ten years & still research & learn daily.....

PLEASE< never cheat or you will never find good health...

It can be quite over whelming in the beginning. This is a good place to find answers, look for a good support group in your area & hook onto a very strict older celiac who plays by the rules & keeps updated......

You will also need to look out for cross-contamination in your house. ie: pots & pans , teflon with scratches, plastic or wooden utensils, double dipping into jars, get a new toaster, gluten is a very tiny particle so it can hide anywhere...& possibly make you sick....

Kisses from a gluten eating spouse can make some ill....

Get some probiotics & digestive enzymes to help the healing ....

Force yourself to eat daily even if you have to graze all day long insead of three big meals a day....

Become a label reader...

gluten can be hidden in malt products, beer, soy sauce & so on....

There are alternatives to almost anything that is wheat products.....

If you are missing a food just ask & we can give you a gluten-free one to replace it with.......

Gotta run for now....hth

mamaw

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I think a lot of people with Celiac are naturally drawn to sugary foods because they get into the blood stream so easily. I'm not saying this is a good idea for long-term and it's not great for energy levels/health, but if you are too thin, it's just getting all the calories in you can. I would try to drink a lot of calories. That's what I do with my under-weight 4yo. Smoothies with chocolate soy milk, peanut butter and banana, puddings, juices. You could even try baby puree if it gets the job done. Just make yourself eat or drink something.

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Thanks for the replies. I did make myself eat real basic foods today, chicken breast I cooked myself, blueberries, things like that. I'm just worried about snapping a bone or not getting enough electrolytes or something related to malabsorption. My stomach and intestines still feel like they're full of play-do ... how long until I get my appetite back?

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Everyone is different so no one can answer your appetite question...Just give yourself time....if you feel dehyrated you can drink some electrolyte drink..... snapping a bone? Have you done a full physical & a routine blood work? If not you should have that done to see what you need in the way of VitD, vits & mins. Vit A & such...

I hate to be the bearer of bad news but many develope more autoimmune disorders once they get one.....as you grow & learn you will become more in tune with what your body is trying to tell you......you may even find other foods not gluten related troubles your intestinal tract, ie: corn, soy, MSG, dairy...

Take some time & read many of the posts in all the topics, you will learn so much.....

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Today I got into meat broth of the day. It is cold in MN and since I feel cool whether I am in or out warm broth seemed to hit the spot. I had boiled pork roast for dinner last evening. I left the broth cooking all night. In the morning I had concentrated broth as good as I have ever tasted. For supper tonight I made some chicken stew. The scraps and bones went into the crock pot. Tomorrow, I expect, I will again have scrumptious warm broth ready anytime I want it. It also tastes better the longer it stays on. I think this broth is nutritious as well as convenient. I have heard that meat cooked in water is easiest to tolerate and I really feel that, that is what I need now.

You are doing all you can not to starve now, right? Keep on doing it and get better soon.

Diana

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Yep, the GI doctor ordered a ton of blood work. I didn't ask him what he was looking for in addition to celiac, I was so surprised by the news I didn't ask that many questions.

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Boiled chicken is one of my sick go to foods. Nothing added to it, just boil'd for a hour or so, just till it falls apart.

Keep it simple. Sweet potatos are good for nutrients and were another go to food for me. apples too.

You'll learn. It takes time. Just take it slow and steady.

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I just started with a medical powder to put into water, made specially for leaky gut. It's basically Ensure without the soy and other icky stuff. People have talked about these all over the forum, but PM me if you want to know more about what I'm using (and the list I've gathered here of others to try). Broth doesn't seem to agree with me, even though I'm making it myself.

It's a struggle to gain weight for me, too. I'm not getting enough calories every day but I would love to. I'm 5'2" and 101 Lbs. It's tough because I typically get the business from people on diets to lose weight -- they have no idea how much it sucks to try to gain it. :(

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Can you eat quinoa? It is supposedly rich in protein, calcium, iron, fiber, and potassium, and a good source of B vitamins and vitamin E. And provides a balance of all 8 essential amino acids.

For starters you could try quinoa flakes as a hot cereal. It is easily digestible. And is quick and easy to make in the microwave or in a pot on the stove. I put maple syrup and brown sugar on it. I buy Ancient Harvest organic Quinoa Flakes which are marked gluten free.

If you can tolerate the flakes you could move on to trying the regular quinoa which is small and which is similiar in size to a mustard seed. It needs to be rinsed first in a mesh strainer but then cooks in 15 minutes in a pot on the stove. It will keep for a week in the refrigerator and you can add a bit of water to it and heat it in the microwave when you want some. I put a bit of butter and salt on it. It has a mild flavor.

I can comprehend your concerns. I am 5'3 and was 98 lb. I still sruggle with trying to gain weight and not feeling hungry some days. Sometimes I will eat the quinoa flakes hot cereal twice in one day. I also make my own applesauce (just peeled and cut up apples with some water in the crockpot) and I put it in the refrigerator for the week and take a few spoonfuls at a time. I also make a bunch of mashed potatoes and store them in the refrigerator also and then put some in a bowl and heat them in the microwave to eat some at times during the day.

The nutritionist had told me to eat small amounts several times a day. She also told me to eat almond butter. I do make my own bread in the bread machine and I will toast it and put a bit of almond butter on it. And I make shakes in a little blender I have...I use So Delicious brand coconut milk or Lactaid Milk and put either cocoa powder or strawberries in it.

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I like applesauce as well. And plain chicken is usually okay though sometimes I don't want to eat meat. Quinoa sounds good, I used to like hot cereal like oatmeal especially Cream of Wheat. >.> But I'm going to avoid all of them for now...

Thanks for the replies everyone. I'm feeling really bad, I'm having some anxiety episode right now, I'm really worried and obsessing about Candida possibly being in my intestine and causing sepsis. I don't know if this is from the anemia or the celiac or what but it's happened to me before, I turn into a hypochondriac when I get anxious.

I'm so tired of being sick. I blamed everything on anemia and thought it would all be fine when I got my iron back up, but now I have a wider problem going on and I have no idea when I'll be able to think clearly and function again. I'm afraid of what else they'll find wrong with me when I get the blood test back.

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Hi Wheresthebeef,

They should be testing you for vitamin and mineral deficiencies, like A, D, K, B, copper, zinc, etc. Those test results will let you know if you need to supplement any of them. In untreated celiac the ability to absorb nutrients is degraded from damage to the gut, resulting in malabsorption. So you can take vitamins but may not really absorb them much. After you heal awhile though you should start absorbing them better. As well as nutrients from the foods you eat. You can try taking sub-lingual vitamins at first, they may absorb better.

Sometimes people are not hungry at first but develop a big hunger later on. Possibly because the healing gut/body needs lots of nutrition to build new tissue. You may also suffer some withdrawal symptoms from gluten, it happens to some people.

You can try home made guacamole with real avocados to gain with. Mix some canned salmon or tuna in it. You can eat it with veggies like a dip or on sandwiches (gluten-free bread). Some people are known to eat a lot of peanuts and peanut butter. Eating smaller meals may help, and space them out thru the day like small snacks. Digestive enzymes and pro-biotics are also good. Betaine HCL may help also.

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You have just been told you have Celiacs and it is perfectly normal and natural to feel overwhelmed and anxious. You are under a doctors care and you have bloodwork results coming back. Understandable too that you were so surprised (overwhelmed) that you didn't get to ask questions of the doctor. For now try to just keep calm and carry on. :) And there are many supportive and understanding people on this board who will try to be of assistance and help to you.

What else do you like to eat? Do you currently have any other dietary restrictions or foods you can't eat besides those related to Celiacs and having to be gluten free?

I posted about what I do to give you some suggestions and hopefully you will get your own ideas on how to manage eating enough. And sometimes eating small amounts at a time can help stimulate your appetite. I am thinking it is a little difficult for you to think straight right now but it will improve.

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I am still making myself eat, today was a little bit better, even though I'm not always hungry. I was feeling really good for most of today but then bam, night falls and I'm in another one of my anxiety moods. I'm worried about electrolytes and vitamin/mineral deficiencies again. I'm really not too upset about the diet itself but I'm always worried about complications of celiac disease. I can't wait for them to get my bloodwork done!

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You mentioned oatmeal & cream of wheat... How about cream of rice or cream of buckwheat?Both gluten-free... Teff also can be made into a nice hot cereal.There are several other hot gluten-free cereals available as well....

And we do have gluten-free oatmeal but I suggest you not try that for a year or more until you heal...

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Stop worrying about getting enough vitamins, minerals, electrolytes --- stop! When your blood work comes back the doc can tell you what you need. Stressing yourself out is not going to do you any good & it will just use up those things you're worried about.

Read this:

You can't get well in a day. You didn't get sick in a day. And you will not die in a day. Just eat. At this point cooked fruits & veggies will be much easier for you to digest than raw ones. There is excellent info. in the link I gave you.

You are young. You will most likely heal a whole lot faster than those of us who didn't find out we were celiac until our 50's & 60's. I will bet that 1 or 2 weeks from now you will be posting on here that you can't get enough to eat --- that you're a virtual eating machine --- that you're constantly stuffing your face. Most of us get ravenous & have insatiable hunger after a week or 2 gluten free.

Calm down & try to relax. I know this is all new & scary but it's really not that bad once you get the hang of it.

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I know I am way too anxious and thinking crazy. I just have alot of anxiety. My mood improved alot today.

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it's natural that you're worried, but as others have said, nothing is going to happen to you overnight. i'm in my 50's and just got the diagnosis, and i'm certain i've had this since i was a teenager.

my best advice for you is to eat the simple foods and go out and buy some digestive enzymes and lactase enzymes or probiotics to help your gut cope while it is healing. i've been taking them for years, although not knowing i had celiac disease, they allowed me to eat with whatever it was that was causing me to have so many digestive problems. i bought the Digest that is mentioned in that newbie 101 post you were given. i googled to find the manufacturer and they had an option to find a store - there were 2 stores in my town that sold them. i take one every time i eat. the newbie 101 post suggested Digest Gold, which is the strongest level of their Digestive brand - there is also Digest (medium strength) and Digest Basic (least strong.) I bought the Digestive Gold and it was too strong, upsetting my tummy - so i bought the lesser strengths and am trying them. just something for you to be aware of. with the digestive enzymes i can eat most foods, except those i'm allergic to. it's worth a try for you. somewhere online i saw there was some research going on to see if digestive enzymes would help in celiac disease - speculating that they might break down the gluten strand. the study wasn't done yet, i don't think.

i also take the Schiff's Digestive Advantage Lactose therapy - you take one or two capsules a day and they deal with the lactose you encounter that day. i can have ice cream with them. i think you can do the same thing with probiotics. i buy them at a drug store.

these things will "prop" you up while you heal. in the meantime, try the bananas, applesauce, chicken, rice type of foods - most simple and easy to digest, to help yourself out.

oh - and anxiety can be associated with malabsorption. do you have any insomnia? that can be caused by a malabsorption issue, caused by damage to your small intestine, from not absorbing enough tryptophan. tryptophan is the chemical your brain uses to make serotonin and melatonin.

my understanding is that 5 HTP is a source of tryptophan that provides you with what you need to make serotonin and melatonin. Think of it like making bread (seratonin/melatonin) - if you don't have enough flour (tryptophan) you can't make bread. without enough tryptophan, your brain can't make seratonin and melatonin. Seratonin is your happy hormone - without enough you can also feel anxious and/or depressed. melatonin lets you sleep. i also have been taking 5HTP for several years - my son is 24 and he takes it too. He had terrible anxiety attacks while in college and he also had trouble falling asleep. when he started taking the 5 HTP it resolved. you can buy it at any health food section in the vitamin area. I order it from pureformulas.com and get the one by Thorne Research Labs because my chiropractor sells that brand & recommended it to me. i thought getting from the research lab might be good in terms of purity of the supplement. buy an established brand - supplements aren't regulated. so you want to be confident in what you buy.

here's a link to a discussion about the tryptophan connection: http://glutenfreern.com/fibromyalgia/ this website is run by a nurse who has celiac disease, who left her ER job to do full-time celiac education and counseling. she speaks internationally and really knows her stuff. i know her personally, and she spoke a few weeks ago to a mental health professionals conference about the connection between celiac disease and mental health.

and i'm just a stranger on the internet - and while i am a trustworthy person, just cuz i said so, you should still do more research and make sure these things are ok for you. ;):) they keep me going, though, and i do recommend them.

breathe. this is a marathon, not a sprint. don't get yourself worried about things that may never happen. for today, you're ok. it really helped me to think "i know what i'm going to eat for my next meal. then i will deal with the one after." hang in there! you'll get the hang of it before long.

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Yes I have major insomnia and I'm so tired. I'm going to try to find those things at my drugstore if I can (I have probiotics already). Thanks for the ideas.

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Here's specific links if you can't find them locally:

http://www.pureformulas.com/5hydroxytryptophan-90-vegetarian-capsules-by-thorne-research.html they say you can take up to 3/day, but i find that they make me sleepy so i take one at night. that's enough. you can take more at once, but maybe try one first to make sure you can get up in the morning. if you aren't deficient in tryptophan, you'll find it doesn't do anything. when i discovered them i gave some to several friends to try out - they weren't deficient and it didn't really do anything for them. but for both my son and i, they're incredibly helpful to both mood and sleep.

http://www.enzymedica.com/products/Digest_Gold i'm prefering the Digest (medium strength) and Digest Basic (least strength) better.

http://www.digestiveadvantage.com/lactose_defense_formula.asp

if you can't find them locally, you can get all of these online fairly quickly. let us know how you do with them! i'll be curious!

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Here's specific links if you can't find them locally:

http://www.pureformu...e-research.html they say you can take up to 3/day, but i find that they make me sleepy so i take one at night. that's enough. you can take more at once, but maybe try one first to make sure you can get up in the morning. if you aren't deficient in tryptophan, you'll find it doesn't do anything. when i discovered them i gave some to several friends to try out - they weren't deficient and it didn't really do anything for them. but for both my son and i, they're incredibly helpful to both mood and sleep.

http://www.enzymedic...cts/Digest_Gold i'm prefering the Digest (medium strength) and Digest Basic (least strength) better.

http://www.digestive...nse_formula.asp

if you can't find them locally, you can get all of these online fairly quickly. let us know how you do with them! i'll be curious!

I got the regular Digest kind. I think they are helping, but I think I am specifically having a problem digesting fat now. I'm going to try to get one specifically for fat digestion next time, because I take alot of these with a fatty meal. Also I was fortunate to find all kinds of Enzymedica enzymes at my Whole Foods.
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