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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.

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TTNOGluten    0

I am sure not going to cast stones, because much of how you have felt about this celiac issue is the same for me. It is frustrating as hell, I am angry as well, and question it everyday. I am not sure there is an answer for that, I am still waiting for my relief from the diet sacrifices I have made and yet nothing, I still feel lousy. I guess the best advice I could give you, that I try, is that if you are struggling to find the strength right now, then call on your friends and family to help you out. Someday I am sure you will be repaying the favor to them, that is what I have had to do, don't know if it is your answer, but may be worth a try. I just keep thinking sooner or later I gotta start feeling better, and if I fall back on my support group to get me through then it will pay off?? who knows

Don't be upset about unleashing your feelings on this blog, I do it, I think many of us do it. Somehow it seems to make feel a bit better to vent. sometimes when I am at my alltime low, I try to get pissed off instead and angry, and like my 8 y/o daughter tells me, stress your anger on the disease and your belly pain, it does seem to help

Best of luck to you, with whatever you feel is the best for you, because at the end of the day, that is all that matters!!!

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Debbie48    0

Your posting made me cry. Please, please do not give up hope!

I just started the diet so I cannot say that I know how difficult it is over the long haul. However, I have been very, very sick for the last 7 months and doctors can't figure out what's wrong. Two things that did come back were positive blood work for celiac and I do carry the gene. However, so many of my symptoms don't seem like celiac disease.

If this diet can truly make my symptoms go away, then I am so grateful for the opportunity to get better without meds.

Please give it another try! I'm not a very good cook, but even I have made some really tasty meals. I don't feel deprived, just impatient about wanting to get well.

You are in a very dark place right now and I know that is scary! There is a light at the end of the tunnel. Please keep looking for it and you'll find it!

Many hugs to you,

Debbie

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GFinDC    609

Hi Zus,

I hope you feel better soon. I can understand your feelings about gluten free and the limits it puts on your life. I had similar feelings when I started the gluten-free diet. I got kind of emotional about being around food I couldn't eat anymore. Or shopping at the grocery store. There were whole aisles of food where I couldn't eat any of it. It all seemed kind of sucky for a while. I prayed about it every day though and after a while it started getting better. It just stopped bothering me eventually. Now I don't feel that way at all. Not eating gluten is better for me physically and mentally. Being around people eating gluten doesn't bother me anymore either. I just eat before I go out so I am not hungry. I think a lot of it is just habit. We get so used to eating certain foods anytime we want, that we just expect to be able to. But we can change our habits, including what we eat. And once our new habits are learned it is easy to eat gluten-free.

Eating gluten-free and whole foods could be very good for your liver also. Think of all the preservatives, food colorings, emulsifiers and additives etc that are in processed foods. That is all un-natutural stuff that your liver has to detoxify and remove. It's not food, it's junk they put in processed foods. So not eating that junk can lower the strain on your liver.

I read that they don't know what causes sclerosing cholangitis but think it is auto-immune. There was a woman on the board a while back who had an auto-immune liver disease also. Celiac can cause symptoms and damage throughout our bodies, so there is no reason to think it cannot be the cause of your liver issues. So while you think you have no symptoms, that liver issue could be a symptom. There are lots of posts on the board from people who were surprised when symptoms they had cleared up after going gluten-free that they had no idea were related to celiac. Some people could barely walk when eating gluten, but can get around fine now. Celiac is not just a disease of the intestines, it can have affects on any body system.

You have probably read about Hashimoto's thyroiditis and dermatitis herpetiformis right? They are two well known auto-immune diseases related to celiac disease but they don't involve the gut at all Except that people with those conditions often have worse symptoms when they eat gluten.

Just because you don't feel ill in your gut doesn't mean it isn't hurting you elsewhere.

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srall    112

I feel so bad that you feel this hopeless. I understand the grief and the loss...especially the loss of convenience, and feeling left out. 2 years in I am still dealing with those feelings. I guess I am "lucky" because I felt 100% better on the diet and never questioned its importance. Then I had a 7 year old who was also so so sick and it was an enormous relief to find out she "just" needed to eat gluten free. So...I felt lucky. Maybe it's just perspective.

My 40 year old brother is like you. He knows he needs to be gluten free but refuses to "live like that" So he lives with chronic pain, depression and diabetes (diagnosed at age 39). And he's not overweight. It leaves me baffled.

I don't understand that you feel imprisoned by the diet, but I really feel bad that you are dealing with all these health problems and depression. I hope you choose your health. I know we eat healthier than ever before and I love finding new foods and recipes...but again, I guess it's perspective. I hope you find a good therapist to help you through this tough time. It makes me so sad that you would give up this fight...especially if you're a mom.

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bartfull    565

Add my voice to those who wish they could help. I just started a thread the other day about how much I hate this diet because I hate to cook. I never used to cook! Restaurants, frozen pizza, and grocery store fried chicken were mainstays. Now I have to cook every day. I have to think about everything I put in my mouth. I HATE it! And New Years Eve, a friend asked me to stop by to see their Christmas lights before they take them down. I went in the house for a few minutes and Lisa was cooking and I could tell they were getting ready for a party at their house. I wasn't invited. I KNOW that the reason is that I can't eat anything and it makes them feel funny. It hurt, let me tell you.

And yet I just finished my lunch of brown rice, grilled chicken and broccoli, and I said to a friend, "You know, if they told me I don't have gluten and corn intolerances, I think I'd still keep eating this way. This lunch I just finished tasted SO much better than the junk food I used to live on." Some days I feel like giving up and buying a big loaf of bread and eating the whole thing. Other days I barely think about it. And I never know when I get up in the morning, which type of day it is going to be.

So I don't really have any advice, but I want you to know that you're not alone in feeling crappy about the whole thing. And even though we are all different, we all have autoimmune disease in common, so we DO understand.

I don't know what your religious beliefs are, but it can't hurt to know people are praying for you, so be advised - I am praying for you.

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IrishHeart    1,634

I have been reading your posts for a long time and at first, I felt enormous compassion for your plight and gave you my best advice and some cyber- hugs of support and when I did not see you around for a while, I thought "Great, this beautiful girl with the beautiful children has made peace with this and is off happily living her life!" :)

Yet, here you are--and if possible, you are even angrier than you were before. This makes me very sad for you because honey, I think you make it harder for yourself than it has to be.

Everyone has given you some pretty solid advice, in the past ---and right now on this thread---but you told us up front that you know what we are going to say and it won't matter....so why ask, then, I wonder?

Because if you really have given up, you would not come on here hoping we would talk you out of this path of self-destruction you are going down.

People have given their empathy and their best thoughts to you once again--as this is the compassionate nature of the majority of the people on this forum----but I would like to add another perspective.

However, my usual "mother hen" approach has been put aside. Some people may be surprised by what I will say, but frankly, I think sometimes it is best to reflect back to the person what she has said so she can get a simple reality check.

You said:

"I don't know why I'm even writing any of this. I know exactly what you all are going to say. But I can't say it will matter. All I can say right now is that I have decided to not make a decision right now. Which means, I'm off the diet indefinitely. I'm living for today. And that may kill me tomorrow. But tomorrow isn't guaranteed, is it?"

But that's not true. You HAVE already decided. So,what else CAN we say???

You are choosing to eat gluten-filled foods because you say you are "living for today and it may kill you tomorrow and tomorrow isn't guaranteed."

Nope, you are right---it isn't. For ANYONE.

But that doesn't mean we should purposefully throw ourselves in front of buses to see if we can tempt fate either. :blink:

You said:

You were dealt a s$#&ty hand.

Yes, in some ways, you were.

Many of us could say the same thing; hell, I could say the same the thing.

But you can run. (I can barely walk without agony)

You have children. (I had multiple miscarriages and no children and enormous heartache over it)

Celiac caused me IMMEASURABLE pain and I lost 4 years of my life, my brain function and nearly died and I developed dozens of other various autoimmune/neuro symptoms. I am rebuilding my muscles and strength so I can efficiently use my arms and legs again. I cannot even lay down without agonizing pain. I burn 24/7 with nerve pain and I cannot take any medications to stop it. Like you, I once thought death would be easier than the pain I lived in. But I would not give up and I will take years to rehab, if I recover completely at all.

Yes, it sucks. Big time.

But I can let it kill me emotionally and psychologically ---or I can choose to say "Screw you, celiac!"....I choose LIFE. And I know what needs to be done to DEAL with the s$#& sandwich life sometimes is.

This is what you need to come to terms with as well.

This isn't a death sentence. It's a dietary change and adaptation.It's just ONE FOOD PROTEIN for heaven's sake. It's a chance to OVERCOME the s$#& hand we have been dealt.

Now that I CAN swallow food again and keep it in me, I celebrate the food I can eat and there are no real limitations once you learn to bake with gluten-free flours.

And one way to stop the progression of most AI diseases is to stop the underlying factor--the inflammatory process in the body.

I know you are scared about the Liver disease--and I read all about PCS-- before I posted here ---so I could try to understand your fears.

If celiac is part of the mix in your health problems (and you can deny that all you want, kiddo---but I suspect your blunted villi is from celiac) and you CHOOSE NOT to treat it, then you are unwisely contributing to your own early demise by perpetuating that inflammation in your body.

To tolerate the liver transplant when the time comes, your body needs to be in optimal health, right? Well, then you need to remove gluten from your diet.

Honey, if you were my daughter and you were standing in front of me right now, I'd give you a big hug, have a good cleansing "poor us" cry with you, wipe your tears.... and then, quite frankly, I'd boot you in the arse for being selfish.

WHAT ABOUT YOUR CHILDREN????? They need their mother to be around for as long as she can.

What about YOUR HUSBAND??--who must be suffering as he watches you harm yourself. The ONE thing that kept me fighting for my life for 4 years--was my devoted husband. I had to fight--for him, for us.

Get help NOW with your anger and grief (do not tell me there are no available therapists---you are making excuses here, honey)

and learn to bake gluten free goodies like the rest of us and live your life joyfully each day as if it were your last.

That's how we all should live anyway. Einstein said “There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle.”

I do not judge anyone EVER---because as I often gently remind others in my life--you do not walk in my shoes, so you cannot possibly know how I feel.

So I am NOT judging nor am I being critical. I WANT you to be HAPPY.

But you come on here looking for SOMETHING--and I am not sure what--because NONE of us are going to tell you to go ahead and kill yourself with gluten--because we know that is NOT the answer.

But I will tell you that what you are doing right now, eating gluteny foods--and wallowing in this bottomless anger and self-pity?--well, THAT approach is NOT working for you. It is eating you alive.

And yes, I have been in that pit myself--but I climbed out as fast as possible because living in anger and fear is WORSE than anything in the world--even worse than the dreaded gluten free diet.

And no gluteny cinnamon roll is going to help you get your head on straight. If anything, it may distort your thinking even further. Gluten is a neurotoxin and even if you have no overt gastro symptoms, I bet anything it is affecting your brain and creating anxiety and depression.

This is all IMHO and said sincerely with as much compassion and concern as I have in my heart. I feel for you, I really do--yet YOU NEED to get a grip, get some professional help and stop this nonsense. Take charge of your health right now.

I see that medal around your neck :) --you are rightfully proud of your accomplishment--now, take it one step further!

Go & Live wisely, eat wisely and play with your children. And be happy, kiddo--for each day and for all the gifts in your life. Jump one hurdle at a time.

Best wishes,

IH

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Monael    9

I think you are trying to work things out for yourself, just by being here and being so honest. I think that is what struck me the most about your post. That even though on the one hand you are in major denial, at the same time you are saying exactly how you feel.

I don't have the same problem as you regarding the anger at what I can't eat. I think you might be looking at things the wrong way because eating gluten free is not the end of the world. But while celiac is no picnic, your liver disease is much more serious, and I was glad to see that you are acknowledging that perhaps some of your anger and anxiety is from that.

Since this is stressing you out so much, I agree with several other posters who said to just eat gluten and retest later. And concentrate on coming to terms with your liver disease. I am sorry you are going through this. I hope that you find a therapist to help you. I had great success going to one when I had overwhelming anxiety and panic attacks a few years back. I also hope that you continue to let us know how you are doing. Best wishes :)

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zus888    37

I have to admit that I'm surprised that many of the responses are not what I expected to hear. So, I have been proven wrong in assuming I knew what all of you would say.

I've been given a lot of food for thought. Not just from you all, but also from friends.

I'm just trying to make some sense of my feelings. I know, rationally, what the correct thing to do is. I also know what I would tell my children. I know I need a new perspective, and, really, that's what it all boils down to. I am capable of doing the diet and sticking to it stringently. It's a matter of having the will to do it. It makes no sense that I'm doing so much to try to temper the one disease I have absolutely no control over and give in to the one I have full control over. It's not logical in the least.

I talked to a friend today who cried about her frustration and sadness about two people in her life that are making choices that only hurt them in the long run. And I could see my husband in her tears. She wasn't even talking about me. But the theme was the same nonetheless. I'm not one to believe in signs or fate or the intervention from a God. But I found it uncanny the running theme of our discussion. I felt horrible for her pain, yet could not come up with a way to make her feel better since I was that person she was describing. I am the one making a choice to cause harm to myself in the long run.

I just need this to be a choice I make for myself, I guess. I need to look at the food, not at something that I can't have, but as something I don't want. There is a difference between the two. And, yes, it's a matter of perspective. It's going to take me a while to get there. Months, maybe. But I'm feeling more hopeful that I can be in a mental place to make a healthy choice for my body.

I truly appreciate all the responses because it has really helped me to think through this.

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mushroom    1,205

I am so glad that you are going to evaluate things in a new light, hon - even if you end up coming to the same decision in the end. Yes, perspective does make a world of difference in decision-making, but sometimes we are so busy fighting our way through the tall grass that we can't see the rainbow in the sky.

You may have seen that many of us on here refer to gluten as rat poison :D - that is the way we have come to look at it. It holds no temptation for us because we know its ramifications. It is the siren song, luring us...... but if we take the perspective that it is not yummy stuff at all, but the equivalent of rat poison to our bodies, it quickly loses its appeal. I truly feel revulsion when I see some of the Ihop commercials or see people scarfing down huge quantities of gluten in the food courts at the malls - but that is just my perspective. Most of us have found it helpful to make lists - not of the foods we can't eat, but of the foods we can. Several people have asked me, "But what DO you eat?" and I start with the letter A and say asparagus, artichokes, avocado, apples....., and I generally don't even have to bother going to the b's because they see that I can enjoy yummy foods despite the restrictions.

I gave up gluten not because of a diagnosis of celiac - indeed I was not even aware of celiac at the time and had never been tested, but simply because I was attempting to control my RA symptoms, another autoimmune disease by the way. I have not been entirely successful in doing that, but they are much better, as is my psoriasis, although I still do take medications for them both. So I was in control of my life at that time and it was strictly my choice. It was strange to me that my GI symptoms disappeared when I quit gluten, and then I learned about celiac. Perhaps if I had learned about it sooner my symptoms would not have been so severe. If you are predisposed to autoimmune diseases I believe you are at much greater risk from continuing to eat gluten... just one more thing to consider in your evaluation of your circumstances. The timing of your conversation with your friend was an amazing coincidence in enabling you to see the other side of the coin, that it is really not just yourself you are harming but also those who love you.

I wish you much love and wisdom in making the right choice for you. :)

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Aly1    23

You know someone will look after your kids?? Wow. That may be the most stunningly selfish thing I have ever heard. I guarantee they will not see it quite the same way.

I've spent years in pain and in a wheelchair, with no diagnosis, and was only able to work two days a week, totally isolated other than my guy at the end of the day (Thank God for him.) I was so ill I had to decide which kitchen counter I would clean that day - IF I could manage it - and doing so would leave me exhausted and too sick to do anything but lie down with my eyes closed. I lost my thirties entirely. Was I depressed? Damn straight I was depressed. But I was never so selfish about it that I stopped considering the effect I had on other people.

You have kids. It's time to step up to the plate regardless of how you feel. YOU HAVE EVERY RIGHT TO BE ANGRY. But you do not have the right to wallow indefinitely. Pick yourself off, give the finger to the universe for doing this to you, then do what you need to do to get as healthy as you can for your kids. You decided to be a parent, it means putting them first. Keep trying to find a therapist until you do. Block out the feelings of helplessness and depression, you've already spent enough time on those. It's time to do what you have to do as an adult - which means taking care of yourself even if you don't want to.

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Aly1    23

Ok. I just went off on you and as soon as I hit Post I regretted the intensity of it. My apologies, but your post really hit a nerve due to my own experience and having to fight off an intense depression myself. Reading further down I see you write again in a different tone. I should have read before I went off on you. You really can do this you know. I get it that you don't want to, but you can.

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Aly1    23

By the way (still thinking about you here, you struck a chord). I have an incredibly strong sweet tooth and was told I'd have to give up all sweetners at age 16. I was aghast. What I have learned over the years is this: Like anything you don't want to do - don't let yourself think too much about it. Just do it. No one wants to clean the toilet but it needs doing so we just do it. The more you think about the things you want to eat but can't, the harder it is to stand firm. Just shut off those thoughts. The second thing I learned is that like any muscle, the more you do it and the more consistent you are, the easier it is to stay on your diet. Good luck.

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upwitht21    3

I'm new to being gluten free but I recognize grief when I see it. At 19 years old I had a child with down syndrome and everybody wanted to tell me how to handle my pain but you have to grieve however you need to grieve. I commend you on your honesty and hope that it may be a step towards healing for you. It's a hard thing to feel broken inside but please know that there are many people here to lean on emotionally and we all wish you the best.

Jess

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I just need this to be a choice I make for myself, I guess. I need to look at the food, not at something that I can't have, but as something I don't want. There is a difference between the two. And, yes, it's a matter of perspective. It's going to take me a while to get there. Months, maybe. But I'm feeling more hopeful that I can be in a mental place to make a healthy choice for my body.

Your post brought tears to my eyes. You are on the path and you will get to the place where you can make the best possible choices for your physical health and mental health. You are absolutely right - this is not something you "can't" have. It is your CHOICE. You are being very honest with yourself, and that will take you far, faster than you imagine, I think.

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IrishHeart    1,634

I'm not one to believe in signs or fate or the intervention from a God. But I found it uncanny the running theme of our discussion. I felt horrible for her pain, yet could not come up with a way to make her feel better since I was that person she was describing. I am the one making a choice to cause harm to myself in the long run.

There are no coincidences, hon.... ;)

A sign, fate, divine intervention, the universe speaking? whatever! ....makes no matter what we call such things; you can call it "an awakening", perhaps?

In any case, I am glad to see you are "listening".

You are right; some things are Thrust upon us we did not ask for and we feel helpless ---but those things we can control??--well, that's completely up to us to do just that!

Be well.

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Maybe I am just talking crazy, but have you ever thought of trying something like Overeaters Anonymous or some kind of eating issue related therapy? OA is not just for the overweight, but for anyone with an unhealthy relationship to food. I had an eating disorder and so much of what you said reminded me of others I've known with disordered eating.

I would ask yourself these two questions (not asking you to post the answers, just ask them of yourself)- who are you rebelling against and what in yourself are you trying to destroy?

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cyberprof    62

Zus, I truly feel you.

Watching other people (even my daughter or other relatives) eat my favorite Pagliacci Pizza - unbearably painful.

Walking into a PTO meeting, wedding, business event, Christmas party and watching every.single.person.there eat what they want, without thinking about it - excruciating.

Knowing that I'll never be able to travel to France or Italy or China and eat with abandon like others travelling - too sad to think about.

Walking through an airport or food court and not want to take a risk and being so hungry - annnoying.

Missing the care-free way of eating that 90% of people have - frustrating.

But...

Being at peace with it - priceless.

It is grief and it is something that all of us have to deal with at some time. Alcohol, cigarettes, too much sugar, too much fat. Or the reverse - too poor to obtain good, sufficient food. Many humans have some limitations. But celiacs have more grief than others because it is a wheat-full society. And the poster above that said if she was alergic to peanuts, she bets that most hosts/hostesses wouldn't serve PBJ or have peanuts on the table during the party - so true. What an interesting statement. Wheat is different and we are expected to suck it up. Now the above statements are/were true, but I have achieved peace with it. I carry nuts, LARA bars, fruit and though I hate missing out on party foods, it doesn't end up ruining my night anymore but it is a mental effort.

Others have good ideas about counseling but I think the best would be a support group for people with potentially fatal diseases - your liver grief and your celiac grief are intertwined IMHO.

Best wishes to you.

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Googles    27

I was thinking more about your post. When I was first diagnosed I was so mad. I felt like my body had betrayed me, again. While I had come to accept that I suffered from depression and ptsd, I had accepted that my mental health was screwed up. But accepting that my physical body was damaged and had something wrong with it was a hard thing to accept. I was so angry with my body. I hated it. I wanted to punish it for what it had brought me to. That I would have to change my life because it couldn't keep itself healthy. It couldn't do it's simple job of being able to move me around and make it so I could do things. If it couldn't do those basic things, why should I care about it? It took me time to be able to forgive it, and myself for the new challenges I was going to have to face. I was wondering if you were feeling anything similar with your liver problems and possible celiac. When I was able to realize this it was easier to deal with. It was still hard, but easier.

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I have been reading your posts for a long time and at first, I felt enormous compassion for your plight and gave you my best advice and some cyber- hugs of support and when I did not see you around for a while, I thought "Great, this beautiful girl with the beautiful children has made peace with this and is off happily living her life!" :)

Yet, here you are--and if possible, you are even angrier than you were before. This makes me very sad for you because honey, I think you make it harder for yourself than it has to be.

Everyone has given you some pretty solid advice, in the past ---and right now on this thread---but you told us up front that you know what we are going to say and it won't matter....so why ask, then, I wonder?

Because if you really have given up, you would not come on here hoping we would talk you out of this path of self-destruction you are going down.

People have given their empathy and their best thoughts to you once again--as this is the compassionate nature of the majority of the people on this forum----but I would like to add another perspective.

However, my usual "mother hen" approach has been put aside. Some people may be surprised by what I will say, but frankly, I think sometimes it is best to reflect back to the person what she has said so she can get a simple reality check.

You said:

"I don't know why I'm even writing any of this. I know exactly what you all are going to say. But I can't say it will matter. All I can say right now is that I have decided to not make a decision right now. Which means, I'm off the diet indefinitely. I'm living for today. And that may kill me tomorrow. But tomorrow isn't guaranteed, is it?"

But that's not true. You HAVE already decided. So,what else CAN we say???

You are choosing to eat gluten-filled foods because you say you are "living for today and it may kill you tomorrow and tomorrow isn't guaranteed."

Nope, you are right---it isn't. For ANYONE.

But that doesn't mean we should purposefully throw ourselves in front of buses to see if we can tempt fate either. :blink:

You said:

You were dealt a s$#&ty hand.

Yes, in some ways, you were.

Many of us could say the same thing; hell, I could say the same the thing.

But you can run. (I can barely walk without agony)

You have children. (I had multiple miscarriages and no children and enormous heartache over it)

Celiac caused me IMMEASURABLE pain and I lost 4 years of my life, my brain function and nearly died and I developed dozens of other various autoimmune/neuro symptoms. I am rebuilding my muscles and strength so I can efficiently use my arms and legs again. I cannot even lay down without agonizing pain. I burn 24/7 with nerve pain and I cannot take any medications to stop it. Like you, I once thought death would be easier than the pain I lived in. But I would not give up and I will take years to rehab, if I recover completely at all.

Yes, it sucks. Big time.

But I can let it kill me emotionally and psychologically ---or I can choose to say "Screw you, celiac!"....I choose LIFE. And I know what needs to be done to DEAL with the s$#& sandwich life sometimes is.

This is what you need to come to terms with as well.

This isn't a death sentence. It's a dietary change and adaptation.It's just ONE FOOD PROTEIN for heaven's sake. It's a chance to OVERCOME the s$#& hand we have been dealt.

Now that I CAN swallow food again and keep it in me, I celebrate the food I can eat and there are no real limitations once you learn to bake with gluten-free flours.

And one way to stop the progression of most AI diseases is to stop the underlying factor--the inflammatory process in the body.

I know you are scared about the Liver disease--and I read all about PCS-- before I posted here ---so I could try to understand your fears.

If celiac is part of the mix in your health problems (and you can deny that all you want, kiddo---but I suspect your blunted villi is from celiac) and you CHOOSE NOT to treat it, then you are unwisely contributing to your own early demise by perpetuating that inflammation in your body.

To tolerate the liver transplant when the time comes, your body needs to be in optimal health, right? Well, then you need to remove gluten from your diet.

Honey, if you were my daughter and you were standing in front of me right now, I'd give you a big hug, have a good cleansing "poor us" cry with you, wipe your tears.... and then, quite frankly, I'd boot you in the arse for being selfish.

WHAT ABOUT YOUR CHILDREN????? They need their mother to be around for as long as she can.

What about YOUR HUSBAND??--who must be suffering as he watches you harm yourself. The ONE thing that kept me fighting for my life for 4 years--was my devoted husband. I had to fight--for him, for us.

Get help NOW with your anger and grief (do not tell me there are no available therapists---you are making excuses here, honey)

and learn to bake gluten free goodies like the rest of us and live your life joyfully each day as if it were your last.

That's how we all should live anyway. Einstein said There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle.

I do not judge anyone EVER---because as I often gently remind others in my life--you do not walk in my shoes, so you cannot possibly know how I feel.

So I am NOT judging nor am I being critical. I WANT you to be HAPPY.

But you come on here looking for SOMETHING--and I am not sure what--because NONE of us are going to tell you to go ahead and kill yourself with gluten--because we know that is NOT the answer.

But I will tell you that what you are doing right now, eating gluteny foods--and wallowing in this bottomless anger and self-pity?--well, THAT approach is NOT working for you. It is eating you alive.

And yes, I have been in that pit myself--but I climbed out as fast as possible because living in anger and fear is WORSE than anything in the world--even worse than the dreaded gluten free diet.

And no gluteny cinnamon roll is going to help you get your head on straight. If anything, it may distort your thinking even further. Gluten is a neurotoxin and even if you have no overt gastro symptoms, I bet anything it is affecting your brain and creating anxiety and depression.

This is all IMHO and said sincerely with as much compassion and concern as I have in my heart. I feel for you, I really do--yet YOU NEED to get a grip, get some professional help and stop this nonsense. Take charge of your health right now.

I see that medal around your neck :) --you are rightfully proud of your accomplishment--now, take it one step further!

Go & Live wisely, eat wisely and play with your children. And be happy, kiddo--for each day and for all the gifts in your life. Jump one hurdle at a time.

Best wishes,

IH

This, exactly. Every. Single. Word.

Also, you have no right to deny your kids a mother over a freaking dinner roll. Once you choose to bring childen into this world, it's not about you anymore. Your kids need to have a mom, who is as healthy as she can be! You need to fight this demon that is keeping you from accepting your dx, and move on with it. If you can't do it for yourself, then fight for your life for them....

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zus888    37

I was thinking more about your post. When I was first diagnosed I was so mad. I felt like my body had betrayed me, again. While I had come to accept that I suffered from depression and ptsd, I had accepted that my mental health was screwed up. But accepting that my physical body was damaged and had something wrong with it was a hard thing to accept. I was so angry with my body. I hated it. I wanted to punish it for what it had brought me to. That I would have to change my life because it couldn't keep itself healthy. It couldn't do it's simple job of being able to move me around and make it so I could do things. If it couldn't do those basic things, why should I care about it? It took me time to be able to forgive it, and myself for the new challenges I was going to have to face. I was wondering if you were feeling anything similar with your liver problems and possible celiac. When I was able to realize this it was easier to deal with. It was still hard, but easier.

Funny you mention this. Right after my diagnosis of celiac, I wrote hate mail to my body. On facebook. I won't write what I posted on here because there's a lot of "colorful" language.

And, I feel terrible for airing my trials when I KNOW so many of you here have been through a much more nasty hell than I've ever experienced. But...it's my journey, I suppose. And I can only draw from my own experiences and, hopefully, learn from others.

I cannot tell you how much I appreciate all who have responded. I've been in a mentally dark place, and I don't wish to go back. I'm not fully out of it, but at least, I'm now in a place where I can hear what people are telling me without having it fall on deaf ears (which was the state I was in last week).

Thank you, again, everyone, for caring and taking the time to write.

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MitziG    94

Suzanna,

You don't need the approval of anyone here to make your decision. You are here because you feel guilty about making the wrong choice, and you are hoping that we will either persuade you to be gluten free, or validate your decision not to be.

Honey, this isn't really about food.

What I am hearing is that you hate the loss of control. You are held hostage by your body to make your own choice, so you are rebelling. Everything you are saying resonates with me. For 20 years I struggled with an eating disorder. It was NEVER about food, or weight. It was about being in control of something.

My guess is your liver disease is the root of the problem- you are helpless against that, so you are fighting the celiac. Deep down, you know there are worse things then having to plan a meal, give up processed foods, and pass on a dinner roll. What you hate is that it isn't your decision.

My advice? Make it your decision. I too, was a "silent celiac" or so I thought. I went gluten free the day of my biopsy because my kids were both celiac, and I had to set the example. But...I decided, since I didn't get sick from gluten, that I could cheat when they werent around. For 4 months, I didn't cheat...but it didn't bother me, because I told myself I COULD, anytime I wanted to. One day, I did. Had a nice fried chicken sandwich. A few weeks later, I had a doughnut. Next time, a Twix bar. Never got so much as a gas pain. A few more months went by before my next "decision" to cheat. Crab Rangoons. Guess what? An hour later I was puking my guts out! For me, that clinched it. I didn't WANT to cheat anymore. Now, when I get accidentally glutened, I get very sick, almost instantly. Chances are, the longer you are on the diet, and the more your immune system heals, you WILL have a response to gluten. The fact that you don't get sick NOW only means that your immune system is too weak to muster a visible response.

You have children. Very likely that at some point, they will be diagnosed with Celiac. How will you impress upon them the importance of adhering to the diet, if they know you blew it off?

You can do this, and you have to do this. But you don't have to do it all or nothing, today. Take it one day at a time. If you tell yourself you can cheat when you want, and occasionally make the decision as to when those cheats will be, you will feel more in control. When the control issue is gone, you will likely find you never really cared all that much about the food after all.

I strongly recommend therapy- someone who specializes in eating disorders would be very helpful for you. They will recognize what is really going on here.

You can do this, and I suspect, you really want to be able to.

Practice makes perfect- don't give up just yet. :)

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Skylark    935

Funny you mention this. Right after my diagnosis of celiac, I wrote hate mail to my body. On facebook. I won't write what I posted on here because there's a lot of "colorful" language.

And, I feel terrible for airing my trials when I KNOW so many of you here have been through a much more nasty hell than I've ever experienced. But...it's my journey, I suppose. And I can only draw from my own experiences and, hopefully, learn from others.

I cannot tell you how much I appreciate all who have responded. I've been in a mentally dark place, and I don't wish to go back. I'm not fully out of it, but at least, I'm now in a place where I can hear what people are telling me without having it fall on deaf ears (which was the state I was in last week).

Thank you, again, everyone, for caring and taking the time to write.

Heh. I never though of mail to my body but I sure know the feeling. I really wish I could get my misguided immune system to stop attacking my thyroid. I needed that gland, dammit!

Please, please, please don't ever feel bad for coming here to ask for help. We are all here on the board to reach out a hand when a fellow celiac is in need, no matter how large or small the request. Everybody falls into that pit sometimes, and we all need help to get back out. I am overjoyed to hear that you are coming out of what sounded like a very painful and dark place. You know how this works, you pay it forward and help someone else who needs a hand when it's time. :)

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tarnalberry    314

Suz, much of what I would have said, both supportive and slap-upside-the-head, has already been said more eloquently than I would have managed. So I have something slightly different.

I am going to suggest that you consider studying yoga, seriously, for at least a few months. Not just the physical practice of poses (asana), but pranayama (breathing practices), and meditation. Heck, study the Yoga Sutras if you can. There a a couple of studies out that suggest that it is a very useful practice/tool for fighting depression, and for helping you gain perspective. I can also personally attest to how much it has made a difference for me battliing chronic dysthymia for years, with depression rarely rearing its head these days.

I could go on and on about how the mental practices could help you in this situation, but you won't believe or understand until you try it (hey, how about for nine months, like youdid with the gluten free diet? ;) ) and see for yourself.

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mushroom    1,205

Heh. I never though of mail to my body but I sure know the feeling.

I never thought of sending my body mail either, whether snail or e-mail, but I have disowned my legs :blink: Just pretend that they belong to someone else, not mine, no way those legs are part of me :ph34r::rolleyes:, no sireee, them legs belong to someone else entirely because they sure ain't mine..... are they??

:lol:

I am a Woman of de Nile when it comes to my legs!!

Ya see, we do all have something that we don't normally let loose on this here forum. Bit by bit our secrets come out.:rolleyes: A couple of glasses of wine and we confess.

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AVR1962    88

I have to admit that I'm surprised that many of the responses are not what I expected to hear. So, I have been proven wrong in assuming I knew what all of you would say.

I've been given a lot of food for thought. Not just from you all, but also from friends.

I'm just trying to make some sense of my feelings. I know, rationally, what the correct thing to do is. I also know what I would tell my children. I know I need a new perspective, and, really, that's what it all boils down to. I am capable of doing the diet and sticking to it stringently. It's a matter of having the will to do it. It makes no sense that I'm doing so much to try to temper the one disease I have absolutely no control over and give in to the one I have full control over. It's not logical in the least.

I talked to a friend today who cried about her frustration and sadness about two people in her life that are making choices that only hurt them in the long run. And I could see my husband in her tears. She wasn't even talking about me. But the theme was the same nonetheless. I'm not one to believe in signs or fate or the intervention from a God. But I found it uncanny the running theme of our discussion. I felt horrible for her pain, yet could not come up with a way to make her feel better since I was that person she was describing. I am the one making a choice to cause harm to myself in the long run.

I just need this to be a choice I make for myself, I guess. I need to look at the food, not at something that I can't have, but as something I don't want. There is a difference between the two. And, yes, it's a matter of perspective. It's going to take me a while to get there. Months, maybe. But I'm feeling more hopeful that I can be in a mental place to make a healthy choice for my body.

I truly appreciate all the responses because it has really helped me to think through this.

Suzanne, life can be quite overwhelming at times and it is hard to understand what someone is delaing with unless they have traveled in your shoes. However, I think you see here that many of us have been where you are. One thing I did that helped me alot was I went into counseling. Everything with my body was over my head as far s comprehension and after so many years even my family was questioning which made it all the harder. I just needed someone to talk to that would listen and understand. It wa the best thing I could ahve done for myself. You will be fine, hang in there!

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