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Cant Do It Anymore

bknutson

By bknutson
in Coping with Celiac Disease

Recommended Posts

ravenwoodglass Mentor
ravenwoodglass
Posted
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?

BK, Please don't give up. Also when you feel your worst emotionally try to remember that it may be the gluten that is causing you to feel so hopeless. Even the tiniest amount can make some of us extrememly depressed. But it will lift. It sounds like you are trying to be gluten free in a house that isn't, is there any way you can make the entire house gluten-free for a while to see if it helps? Some of us are soooo sensitive especeally at first. Check all your cosmetics and toiletries also, some doctors pooh-pooh this idea but for some of us we need to have the gluten-free products. Also if you have pets check their food also, I was poisoning myself for a long time by using the same can opener. You have gotten some great advice about checking for other intolerances too. I hope you get some relief soon.

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darkangel Rookie
darkangel
Posted

When I get discouraged and feel like I'm doing something wrong, but can't figure out what... I eat very simply. I take my diet down to a few foods I'm absolutely positive hold no ill effects for me. If you try this, you may be surprised how much better you feel. Once your system's settled down a bit and you've gotten past that panicking, foggy feeling, you can start adding items back in to your diet and will be able to identify the culprit easier.

carriecraig Enthusiast
carriecraig
Posted

BK -

I know exactly how you are feeling. I was dx'd in June, and then started feeling better almost instantly after going gluten-free. Now it's been 6 months and I am still having D every day a couple of times. Come to find out, some the of medicines, hair/face products, foods I was using contain gluten. I've gone back and eliminated all of those things and am starting to feel even better. I also went for my 6 month endoscopy and the results were not good. My doctor said that I am not healing as well as he'd like to see. I too am very frustrated, and then to go to Christmas at 3 houses and have to see all that food, and be good and careful was so hard. I empathize, but I can say that I feel better everyday, so just hang in there...

Ursa Major Collaborator
Ursa Major
Posted

BK, I am 52 years old, and just found out in October that I have Celiac Disease. I also started to feel a ton better right away, and lost 20 lb in two months (my weight was ballooning out of control, for no apparent reason, since I was eating all 'healthy' stuff). But now I am feeling worse again, and actually had to take the codeine I used to take for fibromyalgia yesterday and the day before (and I'm tempted to take it today, but won't), because I got glutened somehow, and was in awful pain.

I was also feeling disheartened, because I am depressed, I haven't lost any more weight in a month, I have very little support here at home (and I am surrounded by gluten-eating people, who won't clean up after themselves in the kitchen), I am sick of having to cook every meal, even breakfast, from scratch if I want to eat, and I guess I started being careless due to too much holiday stress (but I don't ever purposely eat anything with gluten).

You're not stupid at all. It's so hard to get used to this diet, and to figure out all the hidden sources of gluten. The manufacturers hide them in so many things you'd never even think of! Plus, even things that don't even have anything containing gluten in their ingredient list, might have gone over a floured assembly line (to stop it from sticking to each other, like candy or french fries). The doctors are clueless and won't tell you any of that.

My memory is not too good either, I've been glutened for too long! I hope it will improve somewhat in the near future. And the palm pilot.......well, you just need somebody to show you how to use it. As Nancy said, try a couple of features at a time, you'll get the hang of it eventually.

laurelfla Enthusiast
laurelfla
Posted

i just want to say hooray for all of us! you all sound like a bunch of troopers, strong people who are getting through all of this, come what may.

as other people mentioned, this is a tough month for "our kind". :P but it's almost over! and for many of us, we survived our first gluten-free Christmas/holiday season this year! let's drink a toast!

Merika Contributor
Merika
Posted

Hi BK,

I don't know if this will make you feel better or worse :) Initially after going gluten-free i felt fabulously better. Everything got better for several months. Then I started to feel worse. And worse. And worse. I wasn't getting gluten. I don't know what it was. Additional food allergies were probably part of it.

But i have another theory too - at first my body felt so much better not getting gluten dumped into it that by comparison I felt fabulous. But then I adapted to the comparatively extra energy and such I gained from being gluten-free. Also, I *felt* parts of my body that had been almost numb or stiff for years (not that I knew at the time, I only noticed the difference after going gluten-free). I could *feel* how awful I felt, and how wrecked my insides were. Things were like this for about 9 months - I lost weight again, was depressed, had a hard time eating enough, and eventually wigged out and needed major help from family.

THEN :) things started to get better. It's now been one year since my "bottoming out" point, I look better, I am feeling better, and am doing more stuff. I am still not "healthy" or like I was "before celiac". I would have freaked even more if I hadn't witnessed my mom go through the same up-down-up recovery from celiac earlier.

Hope that helps,

Merika

Ursa Major Collaborator
Ursa Major
Posted

Merika, what you say makes so much sense! Besides the fact that I was on strong painkillers 24 hours a day for years, which obviously stopped me from feeling a lot of things. Now that I stopped taking them, I feel every little pain and twinge, that would be unnoticable before.

Also, now my other intolerances seem to make me sicker than before. But when I think about it, they are probably more noticeable, because my bowels are functioning better, and instead of things going right through me, I absorb the bad stuff as well as the good. And react worse to certain things as a result.

I will take that as a positive thing. ;)

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CMCM Rising Star
CMCM
Posted
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?

I think a lot of it has to do with making peace with yourself about embarking on a different way of eating. Rather than focusing on all the things you can/should no longer eat, focus on creating a list of things you love and you CAN eat. For myself, I'm mainly eating fresh fruits and veggies, meats I cook myself, I find chocoate I can eat (big weakness), and the occasional cookies (I just discovered Pamela's spicy ginger cookies, which are fabulous by any standard!), and so on. Sometimes I feel frustrated, but then I figure I'm better off anyway because now I can drop those extra pounds I was sick of carrying around my middle! I've been working on letting go of food/eating as a comfort thing, and this has been positive for me. Food was too important to me before anyway, and now I eat to live rather than live to eat. There are other things in life to get enjoyment from, and besides, there are still a boatload of great things to eat that are gluten free! Just keep in mind that how you perceive all this is entirely within your control, and you can be unhappy about it and miserable, or you can find all the positives you can about it.

:P

jenvan Collaborator
jenvan
Posted
now I eat to live rather than live to eat.

I've also tried to take on the philosophy more--good advice I think! :)

Guest BERNESES
Guest BERNESES
Posted

Merika- My primary care physician (who is wonderful and supportive and believes that I have Celiac's even though the biopsy came back negative) said the exact same thing. You don't realize how awful you are feeling because you feel that way ALL the time. Then when you get the initial large amounts of gluten out of your system, you feel much better. But when you get even a minute amount of gluten in you, it feels that much worse because you actually know what it's like to feel good now. And you start to feel all the other things that were hurting or making you feel sick.

What you said really helped me because I am 10 months into the gluten-free diet and at the meltdown point too because I feel like this is just not going to get any beter. But then there are times of hope when I look back on things that I have been able to do lately that I wasn't able to do a year ago- like not sleep 8 hours DURING the day- and while those things may seem small to the "general population" they really are HUGE for us.

It's good to know that you saw your mom go through this and you went through it too (although I'm sorry that it's happened) because at least it makes me feel like there is a light at the end of the tunnel (and it's not the light of an oncoming train :P ).

BK- I am glad you started this post. Look how much we've all been able to support each other. Here's to health in 2006, Beverly

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