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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.

Struggling :(
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38 posts in this topic

I had been celiac for 8 and a half years and it never bothered me much I just got on with it . But lately I can't deal with it . I hate the gluten free diet it's destroying my head For the1st time I am struggling badly :( I'm bored of celiac disease I have lots of extra health problems caused most probably by being celiac , I hate it . I drink a lot of alcohol to feel happy , i'm depressed , anxious , angry , frustrated , I don't know what to do ?

I have had friend's recently who don't have celiac disease but tried gluten free food tell me gluten free food is disgusting and it's not a serious disease and it's not bad at all etc I even had one friend who put beer on my food on purpose to try and gluten me :( It angers me so much . I sometimes wish I could pass celiac disease on too some people.

I just don't know what I can do to start enjoying life again and stop letting celiac disease ruining everything for me it's in my brain 24/7 I can't stop it :(

Any advice please ? :)

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Could you try some counseling? It sounds like you have a lot going on that isn't good and having someone to talk about it all with might help. The gluten free lifestyle isn't always easy and it doesn't sound like some of your 'freinds' are helping any. While drinking may seem like it is helping while you are doing it in the long run it can harm more than help. You need to find a different way of coping or you risk making yourself an alcoholic.

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Quit hanging around with such losers for "friends" .

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Hi there,

Listen, it's not easy living the gluten-free lifestyle and I think its ok for us to have a little pity party every once in a while. It sounds like it's getting to you though. I agree with raven, you should talk to someone. Maybe quit drinking for a couple weeks, it isn't helping with the sadness and it might help you clear your head a bit. Keep your chin up, it's going to be ok. Oh and as far as the person who tried to poison you goes? Never speak to them again! Sorry you are having a rough time. This too shall pass.

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Quit hanging around with such losers for "friends" .

I'll second that....

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Perhaps some counseling would be your best route right now; be sure you give it a chance and then be discerning in terms of getting a good "match". (It can take SOME trial and error to find a counselor who's right for you.)

I am a super sensitive celiac who has lived gluten (AND soy, and corn and egg and nightshade and legume and dairy...blah, blah, blah...) free for several years before being able to put most foods (NOT gluten) back in my diet and who also feels strongly that, while this disease CAN be inconvenient and occasionally a freaking pain in the butt, it is not cancer- which is what I was sure I had when very sick- or a host of other diseases which one cannot really mitigate- hence, I try to be thankful that it's one where what I do makes a difference. It can take a while to come to this point of view, of course, and I do realize that some people's travails with celiac seem to be more far-reaching than others but, after 35 years sick and undiagnosed, I was happy to learn I could make some changes and feel better.

On the other hand, occasional venting can be helpful, too!

Hope you get some support and feel better very soon!

lisa

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I am sorry you are feeling down in the dumps. I am recently diagnosed so we are on opposites ends but I am looking forward to the gluten free diet.

Maybe you could start learning to cook some awesome food for your friends. What can be less boring then grilled steaks with some spices and a side of baked potatoes? I made baby back ribs last night with Ken Davis BBQ. Salmon? Grilled Chicken? I am not really thinking of making the pre-made gluten-free food part of my diet. I am thinking of more of a fresh food diet. For snacks there's nuts, hard boiled eggs and Cheetos's (not fresh food but... nothing boring about Cheetos's!!!)

I agree giving up drinking for a month or 2 might help get you out of your funk, it can be a major depressive. If you are using it to make yourself feel better, it's not going to work.

Good luck and hope you feel better.

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I'll second that....

I'll third it.

Friends may not always be as supportive as you wish, but they certainly don't try to harm.

Would they purposefully add sugar to a diabetic's food?

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I'll add another voice to that call for new friends.

Even one good friend would be better than a whole bunch of "friends" who don't respect you.

My advice to you in no specific order would be:

1. Counselling to deal with both the depression surrounding your celiac and the drinking.

2. Possibly treatment for the alcohol abuse, if you are drinking a lot because it's the only thing that makes you happy then you have a problem. This piece of advice comes from 8 1/2 years of sobriety. Life without drugs and alcohol is great. I did it and you can too.

3. New friends. It's hard to make new friends but perhaps a Celiac support group, a sports club, dance/language/art/fitness classes at the rec centre would be a good place to start.

4. Find ways to make yourself happy that don't involve food or booze. Hobbies are therapeutic and satisfying. I knit, spin, kayak, read, garden, take care of my chickens and bake.

5. Make a plan. Get online and get on the phone and find restaurants in your area that either have gluten free menus or have confirmed with you online that they can come up with gluten free foods. It's nice to walk into a restaurant with friends and be able to order a good meal.

6. Find at least one supportive person in your life and lean on them. Whether it's your wife, child, parent, grandparent, friend, neighbour, counselor... everyone needs someone who really understands them.

Good luck, we're all behind you. Hope things get better soon.

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Tennisman,

Where do you live? I think you need an intervention! If you're nearby, I'm willing to come by and discuss how to make your life happy...or at least bearable. Eating Gluten free can be wonderful! People who say gluten-free food is disgusting haven't eaten a great, home-cooked, gluten-free meal. Processed foods don't need to be eaten at all--whether they are gluten free or contain wheat.

So....how can we help you?

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(((hugs))) it's rough sometimes! it's ok to come on here and vent - nobody understands like we do, trust me. but if you need to get help to get over this bump in the road then get somebody to counsel you. NOT your "friends" - jeez... who the krap would do that... :mad:

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Your description of your "friends" is frightening. I cannot fathom the absurdity of their trying to force you to consume gluten! That is NOT normal.

Others have offered excellent advice. I echo the notion that gluten-free food can be absolutely amazing. Many of the best dishes one can enjoy are naturally gluten free, anyway. It is true that there are some products out there that are absolutely deplorable. Do not feel that is all that is available! This is an entirely new opportunity to take care of yourself physically, mentally, spiritually, etc. It sure would help if you had support, though. Do NOT give up hope.

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If you read you will realize there are thousands of people giving up gluten and grains for health reasons and they are empowered by their decisions. Maybe if you looked at it as a personal decision instead of a disease it might help. You could think of it as Paleo eaters do as an empowering personal choice instead of constantly thinking of it as Celiac disease that it is destroying your life. Lot's of people eat as if they are Celiac because they choose to. There are Carnivores, Paleo's, Cave Men, Low Carb, No Carb, who mainly eat meat and vegetables by choice. Granted you would have to watch cross contamination and they do not. But I think it is very empowering to read that some people are beginning to realize that a healthy diet isn't what we used to think it was. Dangerous Grains...indeed. I personally like to read Marks Daily Apple.com. I'm not perfectly paleo...but I do like to think I will get there someday soon.

I am not rcommending the Paleo/Cave man diet so much as I am recommending taking control of the personal choice to eat gluten free. Drop the alcohol, you need some good friends and a new commitment to yourself.

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I'll second that....

I would have to agree too. That is just cruel. At least whoever did it could have offered you $1K-10K. Then you may have been in a position to 'gluten' yourself for their entertainment. ;)

All the best though. I, thankfully, have really understanding friends who I'm sure would never do such a thing. :angry:

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I think a lot of people that have a chronic disease or condition suffer with a bit of depression? It's also normal to greive the loss of some foods or activities...BUT it sounds like you self medicating with alcohol? That's not good!

I wonder if the "friend" who poured gluten on your food was "under the influence" or just an XXX? A person like that is not your friend!

You could start a new hobby..cooking fresh and wonderful foods. Maybe take a cooking class? Look for a celiac support group?

Some of the gluten-free versions of prepared foods are awful..so don't use them! Make your own. :D

It would be a good idea to seek some counseling or see your Dr about the depression...and we are here if you have questions, answers, or need to vent.

Good luck!

(((hugs)))

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I can completely sympathize with you. I fight this almost daily.

What keeps me going? Basic desire to live I guess.

After being diagnosed in March and the rest of the crap I've been through this year I can say I will be stronger now.

I also offer my help. If you ever need to talk or live close, Message me or anything. Anytime.

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I agree with the idea of taking a break from the alcohol for a while. Maybe a month or two to see how it affects you. It may have negative effects you won't recognize unless you go off it for a while and see the difference.

I'd be spittin' nails at a "friend" who tried to poison me. They wouldn't get the chance to do it again that's for sure.

There are plenty of different symptoms and reactions that food intolerances can cause in us. Our bodies are complicated things and there are a lot of interactions between stuff inside us. If you look at my signature you can see most of the things that I have learned to avoid to keep from feeling sick. You may have a similar list but haven't identified the bad foods yet. As long as you are eating a food that your body reacts to you will feel the negative affects. I keep my diet pretty simple for the most part so I don't have to spend a lot of time worrying about ingredients. Simpler is better for me at least. That means very little processed gluten-free foods, mostly home cooked meals from whole ingredients. And not eating out at restraunts much.

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I would like to add that alcohol can definitely cause digestive distress, and that isn't something that you need to have in your life right now. After initially going gluten free, I dropped my nightly habit for drinking wine so that my small intestine could begin healing. Also, vitamins such as folic acid, which celiacs can become deficient in, can be lowered by drinking alcohol. Your body needs to heal...and it will heal faster without the alcohol. You can always add it back in later when you're feeling better.

I live in the San Francisco Bay Area, and we have very supportive organizations and casual groups that get together at restaurants and coffee shops on a regular basis. If you're in my area, let me know...and maybe we can hook you up with some support.

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Could you try some counseling? It sounds like you have a lot going on that isn't good and having someone to talk about it all with might help. The gluten free lifestyle isn't always easy and it doesn't sound like some of your 'freinds' are helping any. While drinking may seem like it is helping while you are doing it in the long run it can harm more than help. You need to find a different way of coping or you risk making yourself an alcoholic.

Thanks for the reply . I did counseling last september , I had 9 sessions and after 8 things seem to be improving but a week after the 9th session I went back to square 1 :( I was allowed 3 more sessions in january they didn't really help . I also am having family counseling at the moment because my sister has epilepsy and it's been difficult to see her ill :( I will find it difficult to give up alcohol , it helps my stomach pain and back pain a lot :P

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Hi there,

Listen, it's not easy living the gluten-free lifestyle and I think its ok for us to have a little pity party every once in a while. It sounds like it's getting to you though. I agree with raven, you should talk to someone. Maybe quit drinking for a couple weeks, it isn't helping with the sadness and it might help you clear your head a bit. Keep your chin up, it's going to be ok. Oh and as far as the person who tried to poison you goes? Never speak to them again! Sorry you are having a rough time. This too shall pass.

Thanks for the advice :)

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Perhaps some counseling would be your best route right now; be sure you give it a chance and then be discerning in terms of getting a good "match". (It can take SOME trial and error to find a counselor who's right for you.)

I am a super sensitive celiac who has lived gluten (AND soy, and corn and egg and nightshade and legume and dairy...blah, blah, blah...) free for several years before being able to put most foods (NOT gluten) back in my diet and who also feels strongly that, while this disease CAN be inconvenient and occasionally a freaking pain in the butt, it is not cancer- which is what I was sure I had when very sick- or a host of other diseases which one cannot really mitigate- hence, I try to be thankful that it's one where what I do makes a difference. It can take a while to come to this point of view, of course, and I do realize that some people's travails with celiac seem to be more far-reaching than others but, after 35 years sick and undiagnosed, I was happy to learn I could make some changes and feel better.

On the other hand, occasional venting can be helpful, too!

Hope you get some support and feel better very soon!

lisa

I mentioned above about counseling it helped a little . But after my sessions finished I went back to normal :( Part of my counseling was talking about celiac disease and it helped me I think maybe it wasn't a good idea though , because my councillor said it made more unique but really that didn't help for long . It's true though celiac disease isn't as bad as some serious illnesses.

Thanks :)

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I am sorry you are feeling down in the dumps. I am recently diagnosed so we are on opposites ends but I am looking forward to the gluten free diet.

Maybe you could start learning to cook some awesome food for your friends. What can be less boring then grilled steaks with some spices and a side of baked potatoes? I made baby back ribs last night with Ken Davis BBQ. Salmon? Grilled Chicken? I am not really thinking of making the pre-made gluten-free food part of my diet. I am thinking of more of a fresh food diet. For snacks there's nuts, hard boiled eggs and Cheetos's (not fresh food but... nothing boring about Cheetos's!!!)

I agree giving up drinking for a month or 2 might help get you out of your funk, it can be a major depressive. If you are using it to make yourself feel better, it's not going to work.

Good luck and hope you feel better.

I hope the gluten free diet helps you :)

I am quite bored of steak now it's basically all I have been able to eat when going out for the last 8 years lol . But it's a good idea trying to cook more . I do already cook some things , and my Mum also has celiac disease so we eat a lot of fresh food , meats , vegetables etc . I just want to eat chinese food but my local chinese restaurants don't understand the word gluten :(

I will have to try giving up alcohol , I remember I had to give up alcohol a few years ago because I had to take some tablets , it wasn't too bad but now I drink alcohol to help forget problems and also to calm my stomach and back pain down.

Thanks :)

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I'll third it.

Friends may not always be as supportive as you wish, but they certainly don't try to harm.

Would they purposefully add sugar to a diabetic's food?

No , it's a really bad thing to do . Especially when I had just minutes before explaining that I was a celiac and what eating gluten does to the body .

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I'll add another voice to that call for new friends.

Even one good friend would be better than a whole bunch of "friends" who don't respect you.

My advice to you in no specific order would be:

1. Counselling to deal with both the depression surrounding your celiac and the drinking.

2. Possibly treatment for the alcohol abuse, if you are drinking a lot because it's the only thing that makes you happy then you have a problem. This piece of advice comes from 8 1/2 years of sobriety. Life without drugs and alcohol is great. I did it and you can too.

3. New friends. It's hard to make new friends but perhaps a Celiac support group, a sports club, dance/language/art/fitness classes at the rec centre would be a good place to start.

4. Find ways to make yourself happy that don't involve food or booze. Hobbies are therapeutic and satisfying. I knit, spin, kayak, read, garden, take care of my chickens and bake.

5. Make a plan. Get online and get on the phone and find restaurants in your area that either have gluten free menus or have confirmed with you online that they can come up with gluten free foods. It's nice to walk into a restaurant with friends and be able to order a good meal.

6. Find at least one supportive person in your life and lean on them. Whether it's your wife, child, parent, grandparent, friend, neighbour, counselor... everyone needs someone who really understands them.

Good luck, we're all behind you. Hope things get better soon.

I agree 1 good friend who understands celiac disease would be great .

As mentioned above I tried counseling it helped me a little . Alcohol I use to help my back pain and stomach pain as well as too feel more happy . Also I think I drink alcohol because I like it and find it helps have I can something nice while missing out on foods .

I don't have a local celiac group , I hoped to join my local tennis club to meet new friends but I can't join due to stomach and back problems , I will look into the other places you suggested .

Cool , I have tried to find some hobbies , I am a magician so that's kinda hobby / job but reading magic books and practicing doesn't interest me anymore unless I have been drinking . Basically everything I used to enjoy I don't enjoy anymore . I enjoy baking cakes but my back doesn't so I hardly make any cakes anymore :(

Some local restaurants do some gluten free but i'm usually ill after I don't trust them anymore . It's kinda frustrating I always doubt what they tell me .

I usually talk to my Mum the most she is also a celiac .

Thanks again for the advice :)

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Tennisman,

Where do you live? I think you need an intervention! If you're nearby, I'm willing to come by and discuss how to make your life happy...or at least bearable. Eating Gluten free can be wonderful! People who say gluten-free food is disgusting haven't eaten a great, home-cooked, gluten-free meal. Processed foods don't need to be eaten at all--whether they are gluten free or contain wheat.

So....how can we help you?

I am from England . Thanks for the offer that's very nice :) I know gluten free foods are nice my Mum is also celiac so we always eat home cooked gluten free foods :) I'm just bored of most foods these days even my favourite foods I don't find exciting , all I think about is foods I can't have :(

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