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bknutson

Cant Do It Anymore

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I just cant do it, I give up. no matter what I do I hurt. I am either totally and idiot who cant figure it out and cant get rid of the gluten or something. So I might as well just go on the way I was and hurt and just let whatever happens to us Celiacs happen. I am just so lost and confused. Thankyou for all the times I have gotten help from you all. You have been so good. And have any of you ever felt like just giving up? I just cry and hurt and I dont know what to do. I am hitting the wall constantly.

thanks for all you do

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I just wanted to give you a {{{HUG}}}. You just come and sit next to me. We'll figure this out.

This can be a really awful time of year sometimes. Lots of pressure. Lots of food. All the happiness and fa-la-la is so freaking exhausting. I don't have any answers for you, but I really can relate to what you said. December is a bad month for me, so believe me when I say "I get it". Because I really, really do.

Please keep coming back. We can help you figure it all out. Tell us more about what your situation is. (Remember, most of us have brain fog, so its hard to remember from one person to the next.) Are you self-diagnosed, biopsied, genetic testing? Have you looked into the possibility of other food intolerances? Are there cross-contamination concerns (are you living with other, gluten-eating people)? Do you have a job or lifestyle where you eat out a lot?

Nancy

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Never give up--dont let the celiac monster do you in. We are here to help--you can email me anytime--do you have messengers? I am always willing to help other celiacs. I have met some very good friends through these forums. Have you checked out other forums, sometimes just by reading you will find the one little thing you are missing. There is www.clanthompson.com this is a very good site to check out: http://brain.hastypastry.net/forums/forumdisplay.php?f=141 it's braintalk communities and there is also: http://www.celiacforums.com/ They are all good places for info. I recently talked a woman in Indiana to check into celiacs, she was tested and it came back negative--she went gluten-free anyways and has been gluten-free for 2 weeks and feels better then she has in 10 years. Keep chipping away, there is an answer. Deb

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Don't quit! The struggles initally are worth the outcome! Can you give us more specific details in where you are struggling so we can offer some practical help? I really encourage you to stick with it! I have found that the most wise and influencial people in my life are those who have come through great struggles. I know at this moment is doesn't seem worth it...but we don't always see the fruit of our labors initally. Do you have a supportive family, friends or local support group?

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Yes, please don't quit! I know that this time of year, especially is tough (I'm scrambling as we speak to find the source of a setback). Maybe let us know what a typical day is for you. I know we can figure this out if we take it step by step. If you want, you can PM me and we can talk about it. Once you get past the rough spots and get into a "groove" you will begin to feel better. It is worth it.

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I agree, don't give up. Give this a while to really work. I've tried a lot of things in the last 4 years to try to get to the bottom of why I don't feel well...I've tried low carb diets, detox diets, allergy shots, etc. The one thing that all of those things have in common is that it takes a while before you feel the good effects. Almost all of them say you will sometimes feel worse before you feel better, and in some ways that makes a lot of sense. Our bodies are trying to heal themselves and in the process are getting rid of a lot of junk...please don't give up!

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Hi bknutson

What you are going through is NORMAL. I have felt like you do many times. Giving up was never really a plausible option, but I think we all know the feelings of helplessness and frustration.

What frustrates me the most is that I just don't know! Doctors are not much help. They say stick to the gluten-free diet, and you will feel better. News flash....not everyone feels better after going gluten free!

I am also a pain sufferer. Some times I am in so much pain, I am rolling on the ground crying. The thing is, that won't help. I decided that I have to figure this out for myself, by listening to my body.

You might want to start at square one if you think you are getting gllutened at home. Buy new cutting boards, scrub the cabinets and make a total gluten-free area of your kitchen.

If it is the gluten-free diet that isn't working, I would look into the Specific Carbohydrate Diet. It seems that people with no success with the gluten-free diet do very well on the SCD, including myself. It is very strict, but I decided that I would rather eat a strict, no-fun diet than go another month feeling like I did.

Just hang in there. Life could be a lot worse....just know that its not the end of the world. You have the choice whether you want to do everything you can to get better, or want to continue feeling like you do. Be proactive and take control. Our bodies are amazing machines. Listen to what its saying and be smart.

Best wishes!

Heather

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Hi BK,

This post brings back some not to distant memories. Seems like I was where you were not so long ago. The thing that I remember in my worst moments was not physical pain but the impatience I had with trying to get back to doing those active things that I had enjoyed before my Dx. I spent a lot of time reading almost anything and everything. Most of my reading had to do with the disease's effect on the body ( I learned a lot about anatomy), the effect of the mind ( my wife bought the book "The Anxiety and Phobia Workbook " (3rd Edition), and also I read passages in the bible. The point I'm trying to make is to exercise the mind while the body heals. Even though I had a positive biopsy and lost a lot of weight I was not in any physical pain. The mental anguish for a while though was overwhelming. I concentrated on trying to get through each day in segments. After about 2 1/2 months I could see some light at the end of the tunnel. When I first started it seemed like every minute of every day was spent thinking of nothing but this disease. I could not sleep at night . For this I relied on meds. As soon as the body responded to the completely gluten-free diet I started to relax. Sleep returned and the meds went away. I only take a couple of vitamins each day. My personal escape once I was physically able was to play golf each day. I concentrated on the game and forgot about celiac. About the only time I think about this disease is when I eat. I like you went through periods of wanting to give up but fortunately we are given some things in life that promote a resolve to see things through. I know if I can make it so can you. This website is a wonderful source of information and inspiration. I also enjoy talking to people I meet about my recovery and well being. My goal is to try to help someone else with their recovery. Best of luck.

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Please don't quit. I wouldn't want anyone to be where I've been - hurting and sick all the time - even if I don't know you. I agree with the others - let us know your whole situation and maybe we can help. People here really can understand how discouraging this all can be. Let us help you lighten your load. "Shared sorrow is half sorrow, shared joy is double joy."

Liz

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Please, don't give up. It's hard in the beginning. How long have you been gluten-free? It took months for my son and I to figure out all the trigger foods that hurt us! You can do it! You have all our support here! If we could we would all come over and give you a big hug of encouragenent!! This is a tough time of year. It is our first gluten-free xmas. We still are figuring out a lot of things, but with the help of our friends on this forum, we find it easier. Don't feel alone, because your not. :)

Please take care and come talk some more!

Charlene

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Hey B

I think most of us have been there. It took about 3 years for me to feel better and put on some weight. The doctors do just say gluten free and you will feel better but it's not that simple. It takes a lot of time and many of have continuing problems.

It does hurt. Keep talking and we will see each other through the ups and downs.XOXO

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Perhaps you have other food intolerances? I have exactly the same reaction to dairy (casein), soy and yeast as I do to gluten. Gluten is the tip of the iceburg for many of us. Get some tests at enterolab.com.

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Don't give up! I don't know how long you've been doing the diet, but it takes a number of months to get the hang of it. It's a big change, and you're not alone.

When it's hardest, stick to naturaly, unprocessed foods - whole fruits and vegetables and meats and eggs. (I'd lay off the dairy, but I'm sensitive to it, so that's just my opinion.) If you, for your mental health, have to take a break over the holidays and restart with the new year, well... you have to do what you have to do. But don't give up!

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THERE IS NOTHING LIKE BEING WELL ONCE YOU GET THERE AND YOU WILL!! WHAT DOESN'T KILL US JUST MAKES US STRONGER. YES, THIS IS A DAILY BATTLE. YOU CAN'T GET AWAY FROM, FOR MORE THAN 4 HOURS BECAUSE THEN IT'S TIME TO EAT AGAIN! I AM STRUGGLING TODAY AND I HATE IT! WHAT A WASTED DAY. BUT I JUST KEEEP THINKING ABOUT BEING WELL AGAIN. IT ACTUALLY TOOK ME 4 YEARS TO MASTER THE GLUTEN THING! YOU CAN DO THIS. YOU HAVE SO MANY PEOPLE TO TURN TO THAT WANT TO HELP AND PREVENT ONE LESS PERSON FROM BEING SICK AND STRUGGLING WITH THIS DISEASE. UNTIL I FOUND THIS FORUM I FELT LIKE A FREAK. I THOUGHT I WAS CRAZY. JUST READING OTHER PEOPLE SAY THAT ALSO CAN'T HAVE SOY AND ETC. ETC. OH MY GOD I AM NOT CRAZY. SOMETIMES FASTING HELPS SPEED UP RECOVERY. IT'S HARD BECAUSE YOUR HUNGRY AND YOU JUST ATE A DOZEN EGGS. I HAVE SERIOUSLY CONSIDERED HAVING PART OF MY INTESTINES REMOVED JUST SO THERE ISN'T SO MUCH TO GET SICK. MY BOYFREIND INFORMED THAT THERE IS AN ENTIRE GLUTEN FREE AISLE IN THE GROCERY STORE. I SAID "YEA WERE TAKING OVER!" YOU CAN DO IT. WE ALL KNOW BEAUSE WE HAVE FELT YOUR PAIN AND HOPELESSNESS! JUST KEEP COMING BACK HERE FOR YOU DAILY STRENGTH. YOU MAY BE AS SENSITIVE AS I AM. I CANNOT EVEN TOUCH GLUTEN, SOMETIMES I THINK THE SMELL OF TOAST MAKES ME SICK.

I just cant do it, I give up. no matter what I do I hurt. I am either totally and idiot who cant figure it out and cant get rid of the gluten or something. So I might as well just go on the way I was and hurt and just let whatever happens to us Celiacs happen. I am just so lost and confused. Thankyou for all the times I have gotten help from you all. You have been so good. And have any of you ever felt like just giving up? I just cry and hurt and I dont know what to do. I am hitting the wall constantly.

thanks for all you do

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Let me echo the sentiments of everyone else when I say: DON'T GIVE UP. It's a trying time for many of us for a variety of reasons, Celiac Disease and its complications not the least of them, but we all have to press on. There is something to hope for, something bigger than the pain, confusion and fatigue. Hold on. I'm praying for you and everyone else.

With love,

Florence

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Hi BK,

Please don't give up! Everybody is right....you will get there. How long have you been gluten-free? It took me a really long time to not only become 100% gluten-free, but also to be symptom free. It's a mixed feeling when you find out after 6 months that you are still eating something with gluten on a regular basis, but it happens. Keep talking to us! We will all figure this out together! ;)

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Perhaps you have other food intolerances? I have exactly the same reaction to dairy (casein), soy and yeast as I do to gluten. Gluten is the tip of the iceburg for many of us. Get some tests at enterolab.com.

Same here. Eliminating gluten alone isn't the answer for some of us.

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Guest BERNESES

Hey BKnutson- I'm in the same place as you right now- I'm at my wit's end. I just got back from the ER because I was so sick and they don't know what's wrong with me. I may have gotten gloutened but no one seems to know. Don't give up- be patient with yourself. I found this great quote in an article I read and I am going to post it here for you:

Illness does not diminish one's humanity. Mobility and physical comfort decrease with illness. Fear and worry increase. But illness does not diminish humanity. Be humane to yourself. Avoid dwelling on how good things were I the past compared to now. Also avoid distant future fantasies. There is no way to know what will happen some years hence. And you know, there never has been a way to know the future. If you are not stuck in the past or tormented by distant future images of what should be, you have the opportunity to manage this day with awareness. Living in the moment with consciousness, patience, compassion, and appreciation for yourself and others lets you get on in a creative way, in spite of the pain of your losses.

We have to remind ourselves of this daily. I hope you checdk back in, Beverly

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You guys are all so sweet! You are the best. I am sitting here just crying my eyes out..

Thankyou so much. I had a biopsy the end of july. That is why I feel like such an idiot. I should be learning something and knowing and remembering things by now. I should be feeling better by now. I did get feeling somewhat better. I stopped losing weight, infact I feel like I may have gained a few pounds, which I dont want to do cause it didnt hurt me a bit to lose the weight cause I was fat anyway. I started to have more energy, less tiredness, brainfog etc. Then it just started again. Not to the extreme it was before, but still the pain. It is like I just cant get it right. I read the labels and then I have forgotten that I cant have this or that. I am just dumb. I am 48 and I feel like I am 90 as far as memory. ;) I dont want to feel sorry for myself cause there are so many people out there that have so many worse things than this. It is just frustrating that I am so dang stupid. My husband got me a palm pilot for christmas so I could put everthing in there that I need to know. Well ! What makes him think I can ever run the stupid thing. I cant! I have my own jars of stuff marked, my own toaster, and so on. How long does it take befor the pain goes away??? Oh Please where am I going wrong.. I just love you guys thanks so much.. And I am so sorry to Berneses.. Are you feeling better? What was your cause did you ever find out?

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Hi BK! I'm glad you checked in. I totally understand the bad memory thing. I have a horrible memory. So does my husband.

You know how when you go to the store, you're supposed to have a list right? Well, not me. I've tried to make a list, but from the time I have a thought that I need to buy something, to the 10 seconds it takes to just pick up the pen and paper, I have completely forgotten what it was I wanted to write down.

My husband was never able to remember his times tables in school. Couldn't remember dates for history class. Doesn't even know what day Christmas is. (I'm completely serious.) Doesn't know when my birthday is, or our kids' birthdays. He bought those Mega Memory tapes from the infomercial years ago. But forgot where he put them, so he never used them. He also can't spell, and mixes up words like "pheasants" (birds) and "peasants" (poor people). (Made for an interesting sociopolitical conversation one night. -- What do pheasants in the hills of Afghanistan have to do with Taliban control of the area. ??? :lol: ) It sounds like I'm making this all up just to be funny, but I swear on a stack of Bibles that it's all completely true.

What does my husband do for a living? He's head of the computer division of a multi-state company. He has over 20 employees working under him just in his office alone. Add all the computer people in all of the offices around the country, and it's at least 100 people reporting to him. The only person he reports to is the owner.

Lack of memory skills doesn't make you stupid. It just means that memory is a challenge for you. Did you know that there are at least 8 types of intelligence? Memory is only one of them.

Give the palm a try. Maybe you can ask your husband to figure it out for you and then tell you how to use one or two of the most helpful features to get you started. Once you get comfortable with that, learn another feature.

It also can take a couple of years to start feeling better. I've also heard some of the main people on this board, who we all have learned so much from, mention eating something or using something for months at a time, not realizing it was full of gluten. It happens.

My MIL has had a wheat allergy (she's getting tested for celiac now that I found out about it) for over 10 years. She is super-diligent about it. One of the things she has eaten all these years is beef jerky. Beef jerky has soy sauce in it, and most soy sauce is made from wheat. She never had a clue until I found that out. Who would know something like that? It's soy sauce. Wouldn't it be made of soy?

And then there are the stories on here about things that used to be gluten-free all of a sudden changing ingredients and NOT being gluten free.

I can hear how frustrated you are. It's totally normal. I'm guessing you've been sick for years. Being sick for years and not knowing what the heck is going on is exhausting.

You also should know that it doesn't matter if other people have it harder. That doesn't matter one bit. YOU are the only person who can really know the weight of the burden on your shoulders. You have every right to hurt, to be angry, and to be frustrated. That belongs to you.

It sounds like, since you started feeling better, and then started not feeling good again, you might have some source of hidden gluten somewhere. Do you remember anything new that you might have started eating at that point?

Nancy

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bknutson-

can u get more specific with a log of what you are eating and a description of your symptoms?

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Guest BERNESES

B- I'm SO glad you came back. I agree so much with what Nantzie said especially :"You also should know that it doesn't matter if other people have it harder. That doesn't matter one bit. YOU are the only person who can really know the weight of the burden on your shoulders. You have every right to hurt, to be angry, and to be frustrated. That belongs to you. "

She's totally right! As for me, I'm feeling a bit better today. It may have been a reaction to a new medication I started (not gluten) so I'm taking a few days off. I felt like I was going to die but it seems better today. Thank you so much for asking.

It's a rough road, no doubt about it. And you are NOT stupid by any means- you've only been at this since July which isn't very long. The learning curve on this disease is really long- I'm in a doctoral program and I always say that learning about this is much more challenging! And I am NOT kidding. You've got to be patient with yourself. It takes a LONG time to recover. i went through the same thing you did- when I first went gluten free I started to feel so much better and then it got worse. What happened in my case, I think, like many others is that the more you get the big stuff out of your system (bread, pasta, etc) the more sensitive you become to smaller amounts. And of course there's the possibility of other food intolerances.

I'd go see your doctor and if that doesn't pan out, consider getting those enterolab tests done. We're all here for you- don't go away! Beverly

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