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Hitting The Wall

Avalon451

By Avalon451
in Coping with Celiac Disease

Recommended Posts

Avalon451 Apprentice
Avalon451
Posted

Ugh. So frustrated.

Normally I'm upbeat and I deal with setbacks with a good attitude. Even if I feel bad I hide it so I don't scare my kids. But I'm kind of in a cascade this weekend with the whole celiac/ gluten intolerance/life changing thing.

My GI doc thought I had celiac for sure, after my endoscopy last Tuesday when the cobblestone look to my duodenum was quite pronounced... not to mention the fact that I've had all kinds of lifelong symptoms, and indigestion and diarrhea for over 7 straight years. However, the lab says negative. No "true" villous blunting. They didn't measure my IELs which bugs me. So maybe I'm just gluten intolerant? But my oldest daughter definitely has it (biopsied both skin and intestine) and my other two's bloods are positive. So that's frustrating, because now I feel like I'm a fake. And my extended family won't take me seriously.

That, and then I'm working on cleaning out the kitchen. I went out and spent a crapload of money on new stuff, which makes me feel bad (though hubby is fine with it, he says, "Eh, that colander was old and beat up anyway, and we needed a new pasta pot, and that small frying pan was terrible...") I love to bake. I got a new SilPat rolling mat and a new rolling pin. Then I took my rolling pins out and looked at them and started crying. One belonged to my Norwegian grandmother, the other to HER mother. They're very old and very well-worn (and certainly ingrained with wheat flour) and they've made so many goodies, pies, and Norwegian lefse. I can't use them any more. I'll give them to my sister or just put them up on hooks on the wall or something... but the thought of those dear hands using them, and that I can't pass them on to my daughters...

Ok, now I'm just getting maudlin. It's a pity party, and you're all invited.

BOOOOO HOOOOO! :(

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Lisa Mentor
Lisa
Posted

Ugh. So frustrated.

Normally I'm upbeat and I deal with setbacks with a good attitude. Even if I feel bad I hide it so I don't scare my kids. But I'm kind of in a cascade this weekend with the whole celiac/ gluten intolerance/life changing thing.

My GI doc thought I had celiac for sure, after my endoscopy last Tuesday when the cobblestone look to my duodenum was quite pronounced... not to mention the fact that I've had all kinds of lifelong symptoms, and indigestion and diarrhea for over 7 straight years. However, the lab says negative. No "true" villous blunting. They didn't measure my IELs which bugs me. So maybe I'm just gluten intolerant? But my oldest daughter definitely has it (biopsied both skin and intestine) and my other two's bloods are positive. So that's frustrating, because now I feel like I'm a fake. And my extended family won't take me seriously.

That, and then I'm working on cleaning out the kitchen. I went out and spent a crapload of money on new stuff, which makes me feel bad (though hubby is fine with it, he says, "Eh, that colander was old and beat up anyway, and we needed a new pasta pot, and that small frying pan was terrible...") I love to bake. I got a new SilPat rolling mat and a new rolling pin. Then I took my rolling pins out and looked at them and started crying. One belonged to my Norwegian grandmother, the other to HER mother. They're very old and very well-worn (and certainly ingrained with wheat flour) and they've made so many goodies, pies, and Norwegian lefse. I can't use them any more. I'll give them to my sister or just put them up on hooks on the wall or something... but the thought of those dear hands using them, and that I can't pass them on to my daughters...

Ok, now I'm just getting maudlin. It's a pity party, and you're all invited.

BOOOOO HOOOOO! :(

Avalon, we have all walked in your shoes. ;) First of all, I think that with multiple cleanings, you can save your Grandmothers rolling pin and pass it down to your gluten intolerant daughter. :)

You have had two positive blood panels...well then, you are part of us now! :D No fake about it! :P

Perhaps the GI did not take enough samples from your endoscopy exam. No test is 100% at at this time.

Join us on the gluten free walk toward recovered good health. Good time are ahead! :D

cahill Collaborator
cahill
Posted

It's a pity party, and you're all invited.

BOOOOO HOOOOO! :(

I had a pity party for my self when I first went gluten free,, truth to be know I spent about 8 week vacillating between crying,anger,depression and soooo many other lovey emotions.

Then I came out of the gluten withdraw.

I still have days when this all gets me down but those days are now fewer and further between.

Have your pity party, know that we have all been there at one time or another. When your done dust your self off and move along.Move on to a much healthier, happier you :)

((HUGS))

captaincrab55 Collaborator
captaincrab55
Posted

I spent close to $1000 to go gluten free between the kitchen & pantry... We had just started using a new set of non stick coated pans months before I was diagnosed...

Skylark Collaborator
Skylark
Posted

That's tough. I would try cleaning with rubbing alcohol. Gluten is supposed to be the part of wheat protein that dissolves in about 70% alcohol.

I really didn't replace a lot in my kitchen. Cutting boards that were scratched up, my colander, a few baking pans, my toaster. I kept my nonstick cookware because it was in good shape and I couldn't afford to replace it. I did fine.

BabsV Enthusiast
BabsV
Posted

So maybe I'm just gluten intolerant? But my oldest daughter definitely has it (biopsied both skin and intestine) and my other two's bloods are positive. So that's frustrating, because now I feel like I'm a fake. And my extended family won't take me seriously.

I'm so sorry about how you feel. We've all been there and it isn't fun.

As for your extended family, do they need to be told the results? I mean honestly, if going gluten-free has made you feel better why do they need 'proof'? It really isn't any of their business when it comes down to it. If your kids need to be gluten-free and so do you that is just a fact. As for the biopsy results, I had one that came back negative...5 months later after progressively getting sicker and sicker and dealing with constant and debilitating pain I had a second one and wow, that one was positive!

Avalon451 Apprentice
Avalon451
Posted
  • Author

Thank you so much for your encouraging and comforting comments. I'm feeling better today.

Well, whether or not I am officially diagnosed, I am already seeing some issues resolving, just 5 days into the gluten-free diet. That ought to be good enough for me. And if my daughters are healthy and doing fine on the gluten-free diet, that's all I really need to know.

That's a good idea about salvaging my rolling pins with multiple cleanings and rubbing alcohol. We'll try it and see if we do ok-- who knows how sensitive we will or will not be, in the future.

I'm so grateful for the help and support on these forums!

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hexon Rookie
hexon
Posted

Thank you so much for your encouraging and comforting comments. I'm feeling better today.

Well, whether or not I am officially diagnosed, I am already seeing some issues resolving, just 5 days into the gluten-free diet. That ought to be good enough for me. And if my daughters are healthy and doing fine on the gluten-free diet, that's all I really need to know.

That's a good idea about salvaging my rolling pins with multiple cleanings and rubbing alcohol. We'll try it and see if we do ok-- who knows how sensitive we will or will not be, in the future.

I'm so grateful for the help and support on these forums!

I'm glad you can salvage your mormor's (my gluten-free's family is norwegian) rolling pin. Sometimes you can't wait on science to catch up on what you body is telling you, especially since your daughters are celiac. Good luck!

Carla H Newbie
Carla H
Posted

I'm glad you can salvage your mormor's (my gluten-free's family is norwegian) rolling pin. Sometimes you can't wait on science to catch up on what you body is telling you, especially since your daughters are celiac. Good luck!

Sorry to hear your frustration, I'm newly diagnosed as well with blood results, I saw no reason to put my body through the biopsy just to tell me what my body already told me. The heck with your family, like another person posted, do they really need to know all of your results? They need to accept what you tell them and that you feel better not eating gluten, simple.

Hang in there, we all have to learn a new style of eating. I getting very frustrated and pity myself at times but its our reality with this disease.

kareng Grand Master
kareng
Posted

Enjoy the new kitchen stuff! I always wanted a marble rolling pin, so I got one! Its a nice bonus.

As for the family, you are diagnosed. Your doctor said. That's all they have to know. Blame many things on your doctor, it works for most people.

The small intestine is 16-20 feet long. If they take 10 (most take 2)microscopic samples, it would be easy to miss the damage. The whole thing isn't necessarily damaged, 20% is enough to mess you up.

bartfull Rising Star
bartfull
Posted

Avalon, I am probably the biggest "whiner" on this board, and all I've gotten in return is hugs, encouragment, advice, and friendships. In other words, if you are feeling down, this is the best place to come talk about it.

My advice would be to keep in mind when those days hit, that usually by tomorrow you'll be feeling stronger and more able to cope. And also keep in mind that you WILL have bad days again so they won't take you by surprise. When I am feeling frustrated and depressed about it all, I cry when I need to, kick things when I need to, come here for solace, and just wait for tomorrow. In the meantime, here's a big ((((HUG)))) for you. Remember, you're not alone.

Diane S. Newbie
Diane S.
Posted

Hi Avalon,

I am gluten-free for 10 years. The first year is very hard as we adjust to all the changes at birthdays, holidays, parties--you name it. I felt socially awkward and hated going anywhere. Then, after a few outings I realized how nice it was not to have to bolt from the table to get to the restroom before---well, we all know what happens next. Now, it's just a way of life--I have felt really great until about 6 months ago when it is obvious some new allergies or problems have begun. But, if I need to give up more food, I know now I can do it and life becomes better. I want to feel good and eating the right way does that. In a couple of months, this will just be your routine--keep the rolling pins--and use them. I wonder what would happen if you lightly sanded them to make sure gluten is not hiding. I really think a good clean up will do the trick. There are a lot of good gluten free recipes you can try.

Diane S.

notme Experienced
notme
Posted

I felt socially awkward and hated going anywhere. Then, after a few outings I realized how nice it was not to have to bolt from the table to get to the restroom before---well, we all know what happens next.

yess!! to be able to sit down to dinner and eat!! i have more 'normal' eating habits now than ever, although to the untrained eye, unpacking/fixing my meals may look like more of a hassle: i can sit through a meal and relax and chat - my reputation with family and friends is that no matter what they made, i would eat "later" (which meant "never"... )

yes, maybe you could sand down the rolling pins - or, clean them really well and roll out dough between sheets of wax paper or parchment?

if you feel better (and you will know almost immediately) then who cares what the doc says. and if your kids have tested positive, it has to come from somewhere because it is genetic. if your husband isn't celiac, then you are. i WISH my kids would get tested, but they are old enough not to do what i want them to do anymore lolz <_<

withdrawal sucks. you are probably on that emotional roller coaster. hang in there, it will get better :)

ps - i am 18 months gluten free and now wheat bread smells like alcohol to me. wierd. anybody else notice this? maybe because my sense of smell is finally coming back. also, now i am able to drive at night again :) the benefits continue to amaze me.

magso Newbie
magso
Posted

I

cahill Collaborator
cahill
Posted

Now am I right in thinking that all of this is due to withdrawl symptoms and I am going to get through this. How long do withdrawl symptoms last. It really is a struggle to get out of bed lately, I have no interest in anything then all of a sudden I want to do something when all I really want is to feel

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