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siren's Blog

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I'm Just Not Well..


siren

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I went for the blood test some years ago, after finding celiac.com on the food net work.. I was amazed I had all but one symptom. So I stopped eating wheat glutens for 2 months to see if that would change anything in how I felt. It surly did. I then went to the doctors to let them know my findings since they could not for the life of them figure out what was wrong with me.. 8 doctors and 100,000.00 in tests previous to that. I finally get the blood test and they tell me it is inconclusive.

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I just don't understand why.. I guess I shouldn't have stopped eating gluten to make the test positive. I don't know.. Should I be tested again.. I went back to eating normally and i'm so ill again.

the pain the bloating the constant running to the bathroom with in 3 minutes of eating.. I can't take much more of this.. I am at the point I've pretty much stopped eating.. dairy bothers me anything greasy or gluten related.. even salads bother me now.. I need some help and suggestions.. I'm at my wits end... :(

11 Comments


Recommended Comments

mailmanrol

Posted

[b][/b]Hi Siren, I was just diagnosed with Celiac and before my test I was told that if I was on a gluten free diet that I should get off the diet or it may show a negative diagnosis. So I suggest that if you are now off the gluten free diet that you get re-tested and chances are your diagnosis will be posative for Celiac. Also, I was given an endescopy and the Dr. took biopsies of my small intestine and THAT is what proved I have Celiac. So you may also want to ask your Dr. to do an endoscopy. I hope that after your re-test that you go gluten-free so that you do feel GOOD again! I am lucky that I did not have the major symptoms that you have, but because my sister was just diagnosed with Celiac which is hereditary, and I have had bouts with ulcerative colitis in the past, I decided to be tested and .....well.... here I am, now trying to cope with a major life style change. I know I am rambling, but I hope this will help you. Feel free to contact me if you want to share info. I am very new at this.
GOOD LUCK!!!!
mailmanrol
siren

Posted

Thank you mailmanrol ~

when I can afford it and get insurance again I'm going back in.
I guess my Major fear is that they will say nope its not that and we won't know where to go from there.

I'm so glad you are on a new road to health. I am going to post some soup recipes and some other things that I created that are gluten free and actually taste awesome.. I know the breads can taste like card board..

hugs be well Siren
Giddyatlast

Posted

I, too, diagnosed myself and took myself off gluten. I haven't felt this good in 30 years - since I got my gallbladder out. I thought that is why I was feeling so bad, why I had such stomach trouble after I ate or if I ate after not eatting for awhile. I, too, thought of not eatting at all - I didn't have stomach trouble then but I would get so hungry and then I would eat and the cycle would start all over again. This went on for over thirty years. I became bulimic because my stomach wouldn't hurt after I purged but the next time I ate after purging, I would have stomach problems again. I have not had a medical person diagnose me because I stopped eatting gluten BEFORE having a blood test. I had had an endoscopy and colonoscopy but they came up negative - but, again, I feel so great I don't care what a physician says.....I used to sleep 18 hours a day, I had no energy, I was depressed, my joints hurt, I would spend 20-30 minutes in the bathroom after every meal, I only did enough laundry and cleaning to get by. NOW that I have been off gluten for four months, I sleep normal hours, I feel great, I have wayyyyyyyyyyyyyyyy more energy - sometimes I just get giddy about how good I feel, I am in remission of my bulimia, I haven't been depressed in ages, and all my laundry is done and my bedroom is clean!!!! I guess I am asking you.....what possible difference does it make what a physician thinks or what the test say if you are feeling better when you are off gluten?????? Go back to gluten free, stop spending your money on physicians and tests.
siren

Posted

the only thing I can think of is.. you can write the foods off on taxes so it is cheaper in the end. just like meds.. you can write off gluten free foods. I have learned that in my research. but GOOD FOR YOU!!!! I might have to do it anyway. With all the boneloss I have and the cancer I had and the none stop bathroom stops I can't take it anymore .. for my sanity sake.

hugs and blessings Siren
cheftom

Posted

Siren,

Have to agree with Giddyatlast. Western docs are just starting to get it about food sensitivities and allergies. You kind have to learn to trust your gut, so to speak. If you're feeling better practicing gluten-free eating, then keep going.

I am interested in your comment about writing off gluten-free foods. I specialize in cooking for folks with food sensitivities. This would be a very interesting financial incentive for my customers, for sure. Where did you find out about that? Can you send me somewhere online? I'd be most grateful.

Thanks! Chef Tom
mailmanrol

Posted

Hello again Siren, I totallly agree with cheftom about western medicine and doctors in general. I have always felt they just want to keep you ill so you have to come back to see them, but, they are a necessary evil. Anyway, I agree that if you feel better eating gluten free, then what any physician says doesn't matter, yet I agree that it's nice to KNOW what you have. Tonight I went out and ate my first gluten-free meal at a restaurant. They were very accomodating and it tasted great. I would be very interested in your personal recipies because I did stop at a gluten-free bakery and bought a few brownies and cookies and they are not so good! Yes.... I'm a junkfood junkie....er....WAS a junkfood junkie. And I too would like to know where you found the info on writing off gluten-free foods on my taxes! I imagine you need the doctors records for proof that you need them? We'll all be forever in your debt for that tid-bit of info! It seems that you have been going through some very rough times and I hope that you start feeling well soon. Just know we are all thinking of you and are here to try to help. I'll keep you posted on my progress....it's been only a few days for me so I have a long way to go.
be strong and overcome!
mailmanrol :)

siren

Posted

Good morning..

There are many sites out there on celiac, I found it on Celiac.com about 4 years ago but you do need proof from your doctor that you have it other wise you can not write it off on taxes.. I will find the artical and post it.. :)

I started back on my gluten free yesterday.. I was the first day my stomach didn't feel like it had fire works in it.. now to get my intestines to unswell. I hate looking like i'm 5 months pregnant when I am not. it Hurts darn it LOL.. I will Post a recipe here and there for you as I write them in :) hugs to all
you all are wonderful support.

Siren aka Betsy

siren

Posted

here is the Link for taxes.. not all will qualify.. so read the whole conversation and give it to whom you will.. hugs Siren :)
[url="https://www.celiac.com/forums/lofiversion/index.php/t7936.html"]https://www.celiac.com/forums/lofivers....php/t7936.html[/url]

mailmanrol

Posted

Thanks! Think I'll scan all my receipts and keep them in a seperate file. You're a sweetheart Siren! ;)

siren

Posted

awe ty Mailman :) hugs

LCEllis

Posted

I would really appreciate the recipes for soups and breads - everything I've bought pre-made is awful unless toasted and I usually eat bread (sandwiches) at work and don't have access to a safe toaster, so yuck!

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