I Had Hoped To Never Return To This Place

[zus888]

Some of you probably remember me from my rantings of being on the God-forsaken gluten-free diet. You may also remember that I was having a lot of trouble coping. Well, I'm off the diet. Here's the story.

First, I have a number of autoimmune diseases. The worst one is Primary Sclerosing Cholangitis, which, my doc tells me, will likely require me to have a liver transplant 10-12 years after diagnosis (which, by the way was in 2007). After a 6 month depression trying to deal with that diagnosis (I'm not going to go into all the statistics and crap I read about because it's depressing), I decided to ignore it and live my life like I never heard the words, "primary sclerosing cholangitis."

This past January, a routine biopsy (endoscopy) for Crohns discovered crypt hyperplasia, blunted villi and other stuff indicative of celiac. Blood tests were done at my insistence, with the only "mild positive" result being the IgG Gliadin. I think I was just a few points above the upper limit. Everything else was negative. Doc "strongly recommended" going on the gluten-free diet and directed me to a dietician who has celiac himself.

Due to my other autoimmune issues, I have a lot of blood tests and other diagnostic tests. They discovered inflamed lymph nodes in my abdomen that they are keeping tabs on. With this information, and the fact that villi *could* be blunted due to other conditions like soy or dairy intolerance, lymphoma, intestinal cancer, and a few bacterial infections, I wasn't wholly convinced that I actually HAD celiac. In fact, I realize now, I was in FULL DENIAL of it. Even when discussing it with people, I would say, "I've been diagnosed with celiac" not "I have celiac." Unfortunately, the ONLY way to rule out celiac was to go on the diet and then redo the endoscopy.

It took a little cajoling to get my doc to do a follow-up endoscopy. At this point, my depression had gotten so bad I went on prozac to try to control it. The ONLY REASON I was depressed was because of the diet, which I LOATHED, and made note of here on more than one occasion.

The endoscopy was the Thursday before Christmas. Friday, I had my first gluten-filled meal and ate it with much enthusiasm. Those four days after the endoscopy were pure bliss. No worries about what was going into my mouth or what they had been in contact with. It. Was. Awesome. Then, Tuesday, I received the call from the nurse that changed everything. There was NO note of blunted villi. The duodenal biopsies (he only took 2) came back NORMAL. All I can say was that I felt like I had been shot just as I was making flight toward freedom. I tried to rationalize that maybe he didn't get the right spots. I mean, he only took TWO biopsies. He could have MISSED the area. Don't they say that all the time - that it's a crapshoot on whether you'll find the blunted villi??? But I KNEW what it meant. It meant that the 9 months I spent on the diet healed my villi, and the blunting was, indeed, due to gluten. I was (and still am) devastated.

For 2 days, I cried. I debated whether it was worth living. I couldn't go back to my gluten-free prison again. Couldn't do it. The mere thought made me want to vomit. I had visions of escaping this life. I couldn't decide whether it was better to live a short happy life where I'm essentially killing myself, OR to live a long life filled with bitterness and misery and wishing I could kill myself. Because, I'll be honest, I'm not sure it is possible for me to be happy on a gluten-free diet. I have suffered NOT ONE ill consequence from going off the diet. NOT. ONE. Additionally, I never tangibly benefited from the diet either. I didn't get more energy. I didn't feel any better. And, if anything, I feel better after going OFF the diet. Mainly, because the stress of it is gone.

And, really, it's not just the diet. It's what the diet represents. I KNOW my health is precarious at best. After the liver disease diagnosis, I had to dig myself out of the trenches and DECIDE to IGNORE it. I could live a happy life pretending that I wasn't sick because I didn't FEEL SICK. The gluten-free diet reminds me EVERY DAY that I'm sick. EVERY DAY, several times a day, I have to think about what's in my food, what it came in contact with, and will it make me sick. Every day, every time I eat, every time I see someone else eat, every time I see a commercial, pass by a restaurant or just get hungry, I am reminded that I AM SICK and I WORRY and STRESS and HATE IT. I cannot live my life like that. I can't live my life in constant worry about my future. Waiting for the other shoe to drop. Waiting for more bad news.

I don't know if I can go back to that prison. I know I'm killing myself by eating gluten, but I'm not sure I care. I KNOW people will bring up my kids, but it's no good if I'm doing what's physically responsible, and then turning into a shell of a person who is emotionally unavailable as a result of it. I don't want to live my life dependent on an antidepressant merely because I can't handle being on a gluten-free diet.

I NEVER imagined myself being in this position. I Never understood addiction. I could not comprehend how someone would choose drugs, alcohol, or whatever the addiction is, over their friends, family, children, even their own life. Yet, here I am, making the same damn choice without the excuse of a physical or chemical addiction. I don't know what to say for myself. There is no defense. It really doesn't make any sense especially considering how much I've been fighting to maintain the health of my liver and my overall physical health. I took up running to increase my chances of putting off a transplant. Yet, a dinner roll has managed to undermine it all. It has a hold on me greater than the value of my own life.

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?

[kareng]

I'm not going to give you the nice, encouraging reply. To be quite honest, you make me very mad. You insist, repeatedly, that I am living a wretched and sad life, not worth living. Just because there are a few items I can't eat? I don't obsess about my food in my own home. I barely think about it because I have safe foods to cook & eat. I don't eat out much, but that's not so bad. We make wonderful food at home. My glutenous husband is finishing off the gluten-free focaccia because " it's a shame to waste such good bread.".

It's OK to be a bit sad and worried in the beginning. However, you have decided, like a stubborn 2 year old, that you will not make it work. You will not like it.

Are you misplacing the anger at your liver disease onto Celiac? You can't do much about the liver disease but you can fight against the Celiac Disease by not eating gluten-free.

[Skylark]

(((hug)))

You poor thing. I'm so sorry to read that you are going through all this. It sounds to me like you need some help working through your feelings about the gluten-free diet. I'm not sure you ever gave yourself a chance to get through the grief of a lifelong dietary change. It seems like you've fought and denied and fought some more, which is all totally normal, but you've got to move past the fighting.

I'd suggest finding a minister, a counselor, or someone who is good helping people with grief. I know it sounds strange but it seems to me that you have to somehow mourn the loss of that dinner roll and the impact of having another "diagnosis" to move past this.

Also, you have only been trying this for nine months. It took me a couple years to really get used to the diet. You mention worrying when you are hungry; my kitchen doesn't have a single unsafe food in it. Yours probably needs to be the same. I can reach for anything in the house that looks good. I have to pay a little attention when I shop but I mostly eat fruits, vegetables, meats, and nuts, all of which are naturally gluten-free. With the restaurants, again it's the grief. You are having a natural grief reaction when you pass a place you can't eat. It's like running across a picture of a grandparent you miss before you've gotten used to the idea that they are gone. Once you get through the grief, it won't be nearly as painful.

I hope this helps a little, so you can do what you know you need for your health.

[Dana Ward]

You get the liver transplant one day, you do good on the diet, and in ten years, you are still around, seeing your kids grow up and I must say that by then, being gluten free will be MUCH easier!

[Lisa]

Some of you probably remember me from my rantings of being on the God-forsaken gluten-free diet. You may also remember that I was having a lot of trouble coping. Well, I'm off the diet. Here's the story.

First, I have a number of autoimmune diseases. The worst one is Primary Sclerosing Cholangitis, which, my doc tells me, will likely require me to have a liver transplant 10-12 years after diagnosis (which, by the way was in 2007). After a 6 month depression trying to deal with that diagnosis (I'm not going to go into all the statistics and crap I read about because it's depressing), I decided to ignore it and live my life like I never heard the words, "primary sclerosing cholangitis."

This past January, a routine biopsy (endoscopy) for Crohns discovered crypt hyperplasia, blunted villi and other stuff indicative of celiac. Blood tests were done at my insistence, with the only "mild positive" result being the IgG Gliadin. I think I was just a few points above the upper limit. Everything else was negative. Doc "strongly recommended" going on the gluten-free diet and directed me to a dietician who has celiac himself.

Due to my other autoimmune issues, I have a lot of blood tests and other diagnostic tests. They discovered inflamed lymph nodes in my abdomen that they are keeping tabs on. With this information, and the fact that villi *could* be blunted due to other conditions like soy or dairy intolerance, lymphoma, intestinal cancer, and a few bacterial infections, I wasn't wholly convinced that I actually HAD celiac. In fact, I realize now, I was in FULL DENIAL of it. Even when discussing it with people, I would say, "I've been diagnosed with celiac" not "I have celiac." Unfortunately, the ONLY way to rule out celiac was to go on the diet and then redo the endoscopy.

It took a little cajoling to get my doc to do a follow-up endoscopy. At this point, my depression had gotten so bad I went on prozac to try to control it. The ONLY REASON I was depressed was because of the diet, which I LOATHED, and made note of here on more than one occasion.

The endoscopy was the Thursday before Christmas. Friday, I had my first gluten-filled meal and ate it with much enthusiasm. Those four days after the endoscopy were pure bliss. No worries about what was going into my mouth or what they had been in contact with. It. Was. Awesome. Then, Tuesday, I received the call from the nurse that changed everything. There was NO note of blunted villi. The duodenal biopsies (he only took 2) came back NORMAL. All I can say was that I felt like I had been shot just as I was making flight toward freedom. I tried to rationalize that maybe he didn't get the right spots. I mean, he only took TWO biopsies. He could have MISSED the area. Don't they say that all the time - that it's a crapshoot on whether you'll find the blunted villi??? But I KNEW what it meant. It meant that the 9 months I spent on the diet healed my villi, and the blunting was, indeed, due to gluten. I was (and still am) devastated.

For 2 days, I cried. I debated whether it was worth living. I couldn't go back to my gluten-free prison again. Couldn't do it. The mere thought made me want to vomit. I had visions of escaping this life. I couldn't decide whether it was better to live a short happy life where I'm essentially killing myself, OR to live a long life filled with bitterness and misery and wishing I could kill myself. Because, I'll be honest, I'm not sure it is possible for me to be happy on a gluten-free diet. I have suffered NOT ONE ill consequence from going off the diet. NOT. ONE. Additionally, I never tangibly benefited from the diet either. I didn't get more energy. I didn't feel any better. And, if anything, I feel better after going OFF the diet. Mainly, because the stress of it is gone.

And, really, it's not just the diet. It's what the diet represents. I KNOW my health is precarious at best. After the liver disease diagnosis, I had to dig myself out of the trenches and DECIDE to IGNORE it. I could live a happy life pretending that I wasn't sick because I didn't FEEL SICK. The gluten-free diet reminds me EVERY DAY that I'm sick. EVERY DAY, several times a day, I have to think about what's in my food, what it came in contact with, and will it make me sick. Every day, every time I eat, every time I see someone else eat, every time I see a commercial, pass by a restaurant or just get hungry, I am reminded that I AM SICK and I WORRY and STRESS and HATE IT. I cannot live my life like that. I can't live my life in constant worry about my future. Waiting for the other shoe to drop. Waiting for more bad news.

I don't know if I can go back to that prison. I know I'm killing myself by eating gluten, but I'm not sure I care. I KNOW people will bring up my kids, but it's no good if I'm doing what's physically responsible, and then turning into a shell of a person who is emotionally unavailable as a result of it. I don't want to live my life dependent on an antidepressant merely because I can't handle being on a gluten-free diet.

I NEVER imagined myself being in this position. I Never understood addiction. I could not comprehend how someone would choose drugs, alcohol, or whatever the addiction is, over their friends, family, children, even their own life. Yet, here I am, making the same damn choice without the excuse of a physical or chemical addiction. I don't know what to say for myself. There is no defense. It really doesn't make any sense especially considering how much I've been fighting to maintain the health of my liver and my overall physical health. I took up running to increase my chances of putting off a transplant. Yet, a dinner roll has managed to undermine it all. It has a hold on me greater than the value of my own life.

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?

And it's not such a dreadful place to come back too! A BIG hug to you Suz! Life can be really sucky at times and the people who post here are truly a testimonial of that. I can point you to over a dozen people on this site that have recovered from the deepest, darkest places (both physically and emotional) and came out on the other side with a love of life and a renewed appreciation of good health.

Life carried no guarantees. Walking across the street has no guarantees. Waking up in the morning is not a guarantee. But life is a gift. Family and friends are a gift.

And how did you ever come to realize that a life long gluten free diet is the kiss of death! It's just real life with slight tweek...that's all.

If you struggle with it, we can help. Just ask

2012 is a new beginning. Make a wish! Make a plan!

[zus888]

To be quite honest, you make me very mad. You insist, repeatedly, that I am living a wretched and sad life, not worth living. Just because there are a few items I can't eat? I don't obsess about my food in my own home. I barely think about it because I have safe foods to cook & eat.

Are you misplacing the anger at your liver disease onto Celiac? You can't do much about the liver disease but you can fight against the Celiac Disease by not eating gluten-free.

I don't think I ever once mentioned how I think you feel on the diet. I only mentioned how I feel on the diet. I don't transfer my feelings onto any other people who face this disease. In fact, I find it unnerving that I seem to be the only one who felt and continues to feel this way. I cannot say why I am having these feelings. But it's not something I've taken lightly. It's not something I want!

And, yes, I think that is what I'm saying. I don't think I've acknowledged my liver disease. My doctor was actually somewhat surprised (and noted that during my office visit with him) that I didn't break down in tears at my liver diagnosis. I want to live in ignorance. And the celiac does not allow me to do so because it is constantly on my mind. I adhered strictly to the diet. I always had something available for me to eat. Nevertheless, I always felt "without."

[Lisa]

I don't think I ever once mentioned how I think you feel on the diet. I only mentioned how I feel on the diet. I don't transfer my feelings onto any other people who face this disease. In fact, I find it unnerving that I seem to be the only one who felt and continues to feel this way. I cannot say why I am having these feelings. But it's not something I've taken lightly. It's not something I want!

Nevertheless, I always felt "without."

Sooo, what missing?

[kareng]

. I don't think I've acknowledged my liver disease.

There you go! Now you are getting somewhere! this is what I hope you will think about.

Hospital or Cancer center Social Work Depts should be able to refer you to a counselor who deals with chronic illness. You need to grieve and learn to deal with the liver disease. Celiac is really minor after that.

[zus888]

Sooo, what missing?

Mainly, the freedom. The freedom to just eat whatever is available. I have 3 young kids, so picnics, family gatherings, PTO meetings, etc are frequent. I stayed home all summer because I cannot mentally handle being around food I LOVE, but cannot HAVE. I have no desire to bring my own food in a bag while others are enjoying a buffet of food. I skipped DH's company party because of celiac. I skipped too many picnics to count. I skipped too many club meetings because cake was being served. I became a hermit because I cannot pretend to be happy and I cannot "suck it up."

I walked into MIL's house for dinner and there were dinner rolls on the table. (I think I wrote about this before.) I about near had a mental freaking breakdown. It was that incident that got me on prozac because I had visions of cutting my arms and taking oxycodone to cope with being in the same room as a dinner roll, let alone watching people eat my most favorite of foods in my presence. It was a horrible experience and really set the stage for a great deal of fear when it comes to food. I feel like I cannot trust myself any more because I don't know how well I'll handle surprises like that. I wasn't expecting to have such a strong and psychotic reaction to being in the presence of dinner rolls. And this was only a few months ago. August or September maybe? As a result, I don't trust myself to go anywhere that I'm unfamiliar with and certainly won't be going back to MIL's house for any sort of dinner while gluten-free. I miss dinner rolls. I miss cinnamon rolls. I miss being able to walk up to a buffet and just eat. I miss the ease of eating out. I miss feeling like a normal healthy human being.

There you go! Now you are getting somewhere! this is what I hope you will think about.

Hospital or Cancer center Social Work Depts should be able to refer you to a counselor who deals with chronic illness. You need to grieve and learn to deal with the liver disease. Celiac is really minor after that.

yes. I know. I've called 3 different therapists and have reached dead ends. One wasn't accepting new patients. The other isn't a participating provider. Another hasn't called me back.

I really DON'T want to deal, though. I don't WANT to face my uncertain future. I don't want to focus on the s$#&ty hand I've been dealt. I can't imagine any good coming from it. Nothing but feeling impotent. And fear. I don't want to face my fear.

[domesticactivist]

Welcome back, Suzanna,

What I noticed about your post is how you are really being honest with yourself here. Where that will lead you I can't say, but I think it's a good first step to eventually finding some peace with yourself. It seems like you need to do a lot of processing - talking it out from many angles. I'm like that, too. I'm glad you came back and found the space to do that.

Your post made me think of one of my favorite bloggers, The Fat Nutritionist. In her Open Original Shared Link post she says:

"Even if you have a disease or an allergy, it is your choice to either follow the therapeutic dietary recommendations for your condition, or not."

You seem to feel defensive about the choice you are making, and I can see why you would. Everyone around you at least on this forum is going to tell you that with your situation a gluten-free diet is necessary.

But you don't have to defend the choice not to do it. It's already yours, and no one has any business taking that fundamental right to decide what goes in your own mouth away from you.

You are an informed adult, and you have the right to make choices that are destructive to your body. You are the only one who has to live in your body and in your emotional landscape.

You know which kind of pain you can stand. At this moment, from my reading of what you have written, it seems you are choosing the eventual pain of a progressing disease and potential early death over the pain of facing that emotions that come with accepting the disease and your mortality now.

Do I hope you will choose to be gluten-free and find a way to enjoy the diet? Of course I do, because I want you to be well, and I want you to be happy. But that has nothing to do with the fact that it is your choice, and no one has to understand and live with that choice but you.

Even though the people around you will be profoundly affected by your choices, that is a knife that cuts both ways. The limits you have are your limits, and the people who love you can't change that for you.

[rosetapper23]

Zus,

I actually think differently than the other posters with regard to your predicament. First, I'm not 100% convinced that your negative biopsy means anything at all. Your formerly blunted villi might have been blunted for a reason other than celiac, and they've returned to healthy status for reasons having nothing to do with a gluten-free diet. Also, I have a real problem with the fact that the surgeon only took two samples--that's not even close to adequate. Also, were any of the biopsies taken of your small intestine? Or just your duodenum? If just the duodenum, I wouldn't look at the biopsies as meaning much of anything with regard to celiac. Therefore, perhaps you should eat gluten to your heart's content and then have a TRUE endoscopic biopsy (of at least eight samples) after six months' time. If, in fact, there's damage at that time...or if you begin to feel ill prior to the end of the six-month period, THEN you can return to the gluten-free diet. Because your mental health is at stake here, I am siding on a less conservative response than I would normally make. Everyone may not disagree with me....but the facts that you presented simply do NOT support a diagnosis of celiac to me.

[psawyer]

You need to grieve and learn to deal with the liver disease. Celiac is really minor after that.

True dat!

It is normal to grieve when faced with a life-changing situation.

You may want to look into the "five stages of grief," as described by Elisabeth K

[kareng]

yes. I know. I've called 3 different therapists and have reached dead ends. One wasn't accepting new patients. The other isn't a participating provider. Another hasn't called me back.

I really DON'T want to deal, though. I don't WANT to face my uncertain future. I don't want to focus on the s$#&ty hand I've been dealt. I can't imagine any good coming from it. Nothing but feeling impotent. And fear. I don't want to face my fear.

The Celiac stuff, doesn't really matter. That's just an easy excuse and a place to put your anger.

As for the therapists.... Have you tried churches in your area? We have one with a big group for people with terminal/ chronic illnesses. You don't have to belong to the church or the religion. Call the hospital or cancer centers. Ask your doc. Call every ilisting in the phone book ( if you really want to get help ).

You won't really enjoy life by denying your illnesses. Sure, it might work for a few months or years, but you will face them. Your hub and kids might need some help with this, too.

[domesticactivist]

I really DON'T want to deal, though. I don't WANT to face my uncertain future. I don't want to focus on the s$#&ty hand I've been dealt. I can't imagine any good coming from it. Nothing but feeling impotent. And fear. I don't want to face my fear.

Then don't deal with it. Enjoying each day you have now without delving into these issues is a valid choice.

But if you feel like delving into it a bit:

It interests me that you say that you can imagine that it would make you feel impotent if you faced the hand you've been dealt. With celiac disease, there is a way to take power over it - and that is to remove gluten from your diet. With the liver disease, there is a way to take power - have the transplant.

It seems like you may feel that being forced into those choices is in fact impotence - the course of action is decided for you.

I wonder if part of the fear is that taking action won't solve anything. Maybe it feels safer to avoid it than to take action and face the potential that your health will not improve?

It is true - no matter what power we take in life, we all have uncertain futures. You have some of the risks you face laid out before you, along with a road map for how to avoid some of the potential danger, but there is no guarantee. Even if these health issues are healed, there are other potential dangers out there. I faced my mortality many years ago when I walked away from a car accident you would not believe. Every day I wake up feeling blessed to be alive, and knowing that this day may be my last.

You say you don't want to face the fears, yet here you are, discussing them. Somewhere inside you know that if you face them you will be able to take steps that may prolong your life and make it healthier and happier... actually helping you avoid the outcomes that you most fear experiencing.

[kareng]

Read some of the posts from when I was posting at the same time.

I wanted to add:

I can respect you not treating an illness ( Celiac, liver disease, cancer, etc). But , only if you have accepted the diagnosis, symptoms, treatment options, etc. and are comfortable with your choices.

Honey, that's what I really hope for you - the ability to make and accept informed decisions. Then to go on with whatever life you have left. We could all get hit by a car or a meteor at anytime. There are no guarantees for any of us.

[psawyer]

Also, were any of the biopsies taken of your small intestine? Or just your duodenum?

The Open Original Shared Link IS the uppermost part of the small intestine.

[Sarah P]

I think it's good you are voicing your anger and utter hatred of this diet. It's ok to be mad and it's ok to make bad choices. Someone once told me, "it's okay to wallow in the mud pit,everyone does, but it's not okay to stay there. God wants you to learn to climb out." We each deal with what life gives us differently. I know a lot of people on this sight are really mentally healthy and strong, but you don't have to be. I know I'm not. You have a lot on your plate, way more than most of us, and you will figure out a way to push through.

I can sympathize with your feelings about being gluten free. Being Gluten Free has not made me feel better and no one can tell me what is going on. It's had to feel like this is the best choice when I still feel awful and hurt all the time.

I have found a lot of wonderful Gluten free food but, I hate this diet and I feel like people are constantly not considering me and what I have to live with. Now I know it's not their job to go out of thier way to make sure the pot luck is gluten free, but if I had a sever peanut allergy and someone invited me I bet there wouldn't be any peanuts!!!

[rosetapper23]

Oops! I guess I've read a lot of literature indicating that it's the jejunum that's usually involved. So much for my biology! But, still, only two biopsies....

Since her all of her bloodwork was negative except for one that was mildly positive, I'm still leaning towards the possibility that she does not have celiac. The only way she can find out is to eat gluten again and demand an endoscopy with many more samples. She could also have her bloodwork re-done at that time. I personally wouldn't wish to face a lifetime of eating gluten free if I really didn't have a medical need to do so.

[mushroom]

Suzanna, no one can make you do anything you choose not to do. You have all the facts, you are a grown woman, you can make your own decisions about what is important to you. Many people have taken the choice of live fast, die young, and leave a good-looking corpse. You can reject the chains and the boundaries and do what makes you happy in the now. Although I sense that your presence back here is because you are not entirely happy with this decision.

In this sense I am inclined to agree with rosetapper -- eat your fill of gluten for six months, repeat the endoscopy, and then make your decision as to whether living life is worth giving up gluten for, if seeing your children grow up is worth giving up gluten for. No guarantees (just as there aren't for any of us) but just the chance of doing so. Liver transplants take place successfully all the time; people successfully give up gluten (and longing for it) all the time. It is possible, but you obviously need some help in working you way through this. But you don't have to do it for another six months when you can confirm or discount your celiac diagnosis, and maybe only have to deal with your liver, or maybe have to deal with the whole thing as you are now. But at least you would know for sure what you are dealing with.

[Skylark]

I really DON'T want to deal, though. I don't WANT to face my uncertain future. I don't want to focus on the s$#&ty hand I've been dealt. I can't imagine any good coming from it. Nothing but feeling impotent. And fear. I don't want to face my fear.

But the only way to live is to face your fear. To do otherwise is the path to madness, which you are experiencing.

You can be free, but freedom isn't what you think it is. Freedom has nothing to do with eating what you want. If you think about it, you were never "free" to eat just anything - for example you can't live on only your favorite cookies. You are simply accustomed to exercising a little self control to balance your diet. It doesn't feel like a loss of "freedom" because you have adjusted your mind to expect to eat a healthy variety of foods. Gluten-free is no different. Freedom does not come from controlling your circumstances; it comes from controlling your mind to suit the circumstances.

You are creating a world of deprivation and fear. It sounds truly awful to live in and you have been there for so long, you can't see anything else. You might start changing your mindset by somehow digging up a feeling of gratitude that you have anything to eat at all. It can be forced, false gratitude to start. What you will find is that gratitude for a warm meal that fills your belly, even when you force it (think of starving children if you must), feels much better than worrying about what you can't eat. Once the gratitude for a warm bowl of rice or a nice piece of chicken becomes genuine it's one of the best feelings in the world.

I'm going to second Karen's suggestion that you look to a church. Religion can be a source of strength and a place of refuge. Until you relinquish the idea that you have some sort of control over your life rather than over yourself, face your fears, and learn to look for the positive within difficult circumstances, you will continue to suffer.

[Skylark]

Oops! I guess I've read a lot of literature indicating that it's the jejunum that's usually involved. So much for my biology! But, still, only two biopsies....

Since her all of her bloodwork was negative except for one that was mildly positive, I'm still leaning towards the possibility that she does not have celiac. The only way she can find out is to eat gluten again and demand an endoscopy with many more samples. She could also have her bloodwork re-done at that time. I personally wouldn't wish to face a lifetime of eating gluten free if I really didn't have a medical need to do so.

Suzanna has multiple autoimmune diseases. I know you're trying to offer hope, but I think the chance that the villous damage and recovery isn't celiac disease is slim. It's not what her doctor who did the endoscopies is saying. Also, there are growing reasons to stay off gluten (and casein) with autoimmune diseases because of the bad effects the opiate-like peptides from gluten and casein have on the immune system.

Speaking of opiates, Suzanna, has anyone talked to you about low dose naltrexone? With the seriousness of your liver autoimmunity you should really look into it.

Open Original Shared Link

[pricklypear1971]

I don't think I ever once mentioned how I think you feel on the diet. I only mentioned how I feel on the diet. I don't transfer my feelings onto any other people who face this disease. In fact, I find it unnerving that I seem to be the only one who felt and continues to feel this way. I cannot say why I am having these feelings. But it's not something I've taken lightly. It's not something I want!

And, yes, I think that is what I'm saying. I don't think I've acknowledged my liver disease. My doctor was actually somewhat surprised (and noted that during my office visit with him) that I didn't break down in tears at my liver diagnosis. I want to live in ignorance. And the celiac does not allow me to do so because it is constantly on my mind. I adhered strictly to the diet. I always had something available for me to eat. Nevertheless, I always felt "without."

I think your Celiac "outted" you, for lack of a better term and you're dealing with two (or more) major life events , and two life-changing medical diagnoses. You could hide the liver disease, but you can't hide the Celiac when people eat around you and expect you to join in, can you?

I'm the Queen of Denial. I get it.

And I know this. If you didn't want help, and didnt want to figure this out you wouldn't be on this board.

If you are still uncomfortable with the Celiac dx do a challenge and retest AND GET 8+ SAMPLES AND REDO THE BLOODWORK. Do whatever you need to do to convince yourself.

And yes, find a counselor. Find a Celiac group. Go somewhere with people who don't make you feel sick or different in comparison.

And most of all, hang in there.

[Googles]

I am so sorry you are going through this. I know that whenever I got glutened for the first year and a half after going gluten free I would have cravings for bread. Going to the store would make my mouth water. I can't say if you do have celiac or not. It is up to you to decide if you want to go gluten free or not. The only thing that made it so I could make through the transition from getting the diagnosis and going gluten free is that I was already in therapy. I talked about my celiac diagnosis with anyone who would listen. (not about the diagnosis so much as the food that I could no longer eat). Every time I found out a new food that I couldn't eat (for example that most soy sauce had gluten), I was telling everyone around me. I was telling my therapist, and my office roommate, and my house roommates. They were all supportive and allowed me to blather on about it. I don't know how many of them really listened to what I had to say after a while (besides my therapist), but they allowed me to get out my anxiety and frustration about the diagnosis and the life changes. I spent months of therapy session talking about my diagnosis and what was going on. I pretty much spent the first part of every session talking about what I had learned since the last session (and I was going twice a week). This lasted for at least 9 months before I moved and then when I started with a new therapist after I moved (I have other issues besides just the celiac diagnosis) it comes up from time to time again.

Everything below is about finding a therapist and advice on how to go about doing it if you want to.

As to finding a therapist if you want to my suggestion is to check out this resource: Open Original Shared Link and in the upper right hand corner you can put in your zip code and it will bring up a list of therapists in the area. Then you can go to the left side of the screen and select under Issues, chronic pain or illness. This will provide you with a starting place for therapists in your area that have this experience. You can limit the search to specific insurance also. If you live in a small area, this might not be as helpful, but it is a place to start. Then just check with your insurance list to make sure they are still covered by your insurance and the specific policy you have. Your insurance will have a list of covered providers and all you have to do is call and ask for it and they will provide you with it. You may be able to get this list from on-line if your insurance has a website.

Other ideas for fining a therapist if you don't want to use the site above are: contact your doctor and find out if your doctor has any recommendations for therapists. They might have names of people they refer people to when diagnosed with chronic illness. If you work at a business that has an Employee Assistance Program (EAP) contact them. This is how I eventually found my therapist and psychiatrist. They will have lists of people. I met with the EAP person and told them what I was looking for and they did the leg work for me. If this isn't an option, whenever you do make contact with a therapist who does not fit what you need (they don't have the right experience or they aren't taking new patients) ask them for referrals. Tell them what you are looking for and ask them if they know of anyone who might be taking clients. The world of therapists is small. They often know other therapists in the area and refer people to others when they can't provide the services needed. If you live in a city with a hospital contact their psychiatry department. Tell them what you are looking for. If they don't have anyone with the experience you are looking for, they should be able to refer you. Just like looking for a new doctor in a city, looking for a therapist takes time and energy. If you live in a city with a university you can look and see if the psychology department at the university has their own therapy clinic. Often they do and provide low cost therapy. There are therapists who work specifically with people with chronic illness. Even if you don't want to talk about the celiac, it seems like dealing with the liver issue would be a good idea.

If you want to find a therapist and want/need more help let me know and I can provide you with more resources if these do not work out.

[beebs]

I agree with the others who said that it sounds like you are projecting all your stuff onto the celiac diagnosis. And of course that is normal, you HAVE been dealt a really crap hand and I'm sorry to hear it.

I really think that you should go for a therapist - even if you feel you still can't do the diet, at least somewhere to really get all this stuff off your chest ya know?

In the end it is your choice what you decide to do.

I hate this stupid diet - most of us do. I have very severe reactions - so I am different from you in that I am truely too scared to ever eat gluten again. If my reactions weren't severe I think I'd probably be cheating all over the place, I am not very good at living a healthy life (I used to smoke even though I have bad asthma etc etc)

At the end of the day - lots of humans do things that are bad, smoke, drink, drugs, over eat, don't exercise etc etc.

While I would love to hear that you decide to go gluten free - It'd be much better if you felt ok about it..you know?

Please think about the therapy, I think therapy really saved my life a few years back and I will tell anyone who listens how great I think it is!!

[AVR1962]

I have had kidney issues for 20 years and at times am flat on my back sick and will be that way for days. I first started having trouble when I was pg with my second child. Became a single mom to 2 little girls without their father to help out or even pay child support. I was hospitalized due to a severe infection in my kidneys when my youngest was less than 2. I feared I would die and leave my babies behind and that was terribly haunting. I could not focus this way though, I had to keep myself going and I had to do what it took to support my children and give them a life. So, tons of experiments to see what worked and what did not but my focus always remained my kids.....I was going to beat this.

It wasn't a matter of beating anything. It was a matter of learning to live with it, learning to accept it and doing what it took to make my life more pleasant and I am not saying this is a selfish way. Docs tod me that one day I may be on dialysis and you know, I will cross that bridge if it should ever come to pass. So I get what you are dealing with and I understand where you are coming from.

For it it has seemed like one thing after the other and I almost feel like a medical mystery. I too had a hard time, up and down emotionally with the gluten-free diet but for me I was sick sick sick and this was the only thing that made things better. Sure, there were days I wanted to just throw in the towel and go back to my old ways of eating but I knew what was going to happen if I did. If I did not have such a hard reaction to gluten I may have been tempted. Docs never did a scope on me. I never had a blood test. So much was wrong and docs were clueless. For me, deciding to go gluten-free was a last ditch attempt suggested by a family member. I was at a point of deperation. I really did not think this was going to be the answer and was actually surprised when I saw the results. Do I like it? NO! But just like my kidneys, I feel like I have to do what is best for me and keeps me healthy. No way do I want to go back to being sick like I was before.

You have to do what is best for you. I do hope medicine will continue to progress and you will not need that transplant on your liver afterall. Take care of yourself. If you can't do the gluten-free diet, then you cannot. I do wish you the best. It is not easy but it is do-able. I think more than anything it is a person's frame of mind that makes it possible. I too suffered alot of depression and have been on anti-depressants in the past, and more than once thought I could not go on. 8 months now on a gluten-free diet and I can tll for the first time in years my mental state of mind is better, I can speak without stuttering and tripping on my words, my thought processes are clearer and those a little compared to everything else. If I went to a doc today and they told me my scope showed I was not gluten intolerent I still would not go off gluten at ths point just because I know how much I am improved.

Lady, bottom-line, you have to do what is best for you and what you can deal with in your life but don't give up.