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luckygfme

Feeling bad (what Else Is New)

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This is a bit of a redundant post, but I've been feeling so bad lately and i'm not sure how to cope wit hit. I don't mind the gluten free diet, dairy free, soy free diet very much at all. I think i've had a fairly easy time coping with it, actually. But as i posted earlier, i started having reactions to Bob's Red Mills stuff, and then afterwards i would retrun to normal for a few days and then have another reaction to the most random things. LIke for instance, Tuna salad. There was nothing in there and no chance of cross contamination. The tuna didn't have any soy added to it. Or a chocolate cake (kosher for passove,no soy) that was made out of potato starch and cocoa. No tapioca, no anything, andi ate it 2 weeks ago and was fine and now all of a sudden a reaction. It's really starting to depress me majorly.

On top of the gastro stuff, i'm having these unpleasant tingling sensations in my hands and resless leg syndrome. My latest blood test showed that my TSH is 6.43 on a scale where the normal range ended at 4. Lovely, this just feels like the last straw. In september, My TSH level was at 7, where the normal range ended at 4, so i went to the endo doctor and he redid my blood twice and both times it dropped back down to the normal range despite the fact that there were antibodies present, so he wouldn't give me medicine. He said that the first test was a mistake, but now the tSh jumped back up,so i guess it wasn't. I know this sounds terribly vain in light of everything, but i don't want to gain weight and lose my hair (which lately has been falling out more than i would consider normal) which i heard happens with the whole thyroid thing. :( i know it's horrible, but that scares me the most. Having to be overweight and bald before my time. Like i said, i don't mind the gluten thing, but this is too much .

i've just been feeling so bad lately, and everyone around me thinks i'm just an awful hypochondriac and that i'm making myself sick, which i'm not since everday i tell myself everything is going to be fine (although it never is). I've really found myself contemplating suicide a couple of times. I'm only 19 and everyone around me is out partying and living life, and i'm going around doctor hopping to a bunch of useless doctors.

sorry for the rant.

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A whole bunch of people here react to Bob's Red Mill and other and other processed or prepared gluten-free food, so you're not alone there, even though I know it's really frustrating. I'm really sorry you are having such a hard time coping. :( Do you have people you can talk to about how bad you're feeling? At least you can know that people here sympthize with your situation. I wish I had better advice, but all I can really do is send a positive hopeful vibe in your direction. Keep coming back to update us on your situation, or rant some more if you feel like it.

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Don't be sorry for letting off steam here, where else can you do that and be understood?

You absolutely need thyroid medication, no wonder you are sick! Find a new doctor who actually has a clue about thyroid. Check this website for more information: www.stopthethyroidmadness.com

And why would you like the idea of gaining weight and losing your hair because of ignorant doctors? That is not vain at all. You are young and should be having fun. I know what it is like to never feel good. I don't know what it feels like to be well, I have had no energy and feeling awful ever since I was three years old. I don't wish that on anybody.

You know what is causing you to feel so terrible. Don't give up, you need to fight until you get the medication you need to get better!

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Oh my goodness - another Endo that doesn't understand Thyroid !!!!!! No wonder you feel ill. You need Thyroid meds and many find that Armour Thyroid is the best med for them. This link explains Hashimotos, and may help you understand that the TSH is a USELESS test for treating Hashis. You need Thyroid meds to suppress the TSH and also suppress the Thyroid Antibodies. Because if you don't they will attack and kill your Thyroid.

http://www.stopthethyroidmadness.com/hashimotos/

If you go to http://www.stopthethyroidmadness.com/community/

you will find Forums you can read and even join and post. I know its hard to do when you feel brain foggy but don't feel embarrassed - as these Mods have helped 1000s of people like you and fully understand what you are going through right now.

And they can help you find a Dr that understands Thyroid - as its pretty obvious that your Dr has not got a CLUE ! Run - run from him and find a good Dr.

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A whole bunch of people here react to Bob's Red Mill and other and other processed or prepared gluten-free food, so you're not alone there, even though I know it's really frustrating. I'm really sorry you are having such a hard time coping. :( Do you have people you can talk to about how bad you're feeling? At least you can know that people here sympthize with your situation. I wish I had better advice, but all I can really do is send a positive hopeful vibe in your direction. Keep coming back to update us on your situation, or rant some more if you feel like it.

HI ya..

I have problems with anything from gluten free range as is all packed with sugar and yeast and I have candida..so it feeds the yeasties..Obvisouly whole foods are okay but I cant eat the gluten-free bread or anything defo cant eat coco powder..

Good luck we will get there in the end ...My dad said to me this morning some of it may be state of mind as when it goes on for so long and it restricts your life you get down and when you get down you can cause problems like I get constipated when I get down...

Take care matey..x

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A whole bunch of people here react to Bob's Red Mill and other and other processed or prepared gluten-free food, so you're not alone there, even though I know it's really frustrating. I'm really sorry you are having such a hard time coping. :( Do you have people you can talk to about how bad you're feeling? At least you can know that people here sympthize with your situation. I wish I had better advice, but all I can really do is send a positive hopeful vibe in your direction. Keep coming back to update us on your situation, or rant some more if you feel like it.

Thanks so much for the good vibes :), it really is nice that there's a place like this because i don't really have that many people to talk to who understand. My friends and parents are pretty understanding, but they can neverfully understand. Especially my parents, who think i'm making myself ill by reading things on the internet. i guess it's hard for them to process that their healthy little girl is actually sick even though i have been for quite awhile.

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Don't be sorry for letting off steam here, where else can you do that and be understood?

You absolutely need thyroid medication, no wonder you are sick! Find a new doctor who actually has a clue about thyroid. Check this website for more information: www.stopthethyroidmadness.com

And why would you like the idea of gaining weight and losing your hair because of ignorant doctors? That is not vain at all. You are young and should be having fun. I know what it is like to never feel good. I don't know what it feels like to be well, I have had no energy and feeling awful ever since I was three years old. I don't wish that on anybody.

You know what is causing you to feel so terrible. Don't give up, you need to fight until you get the medication you need to get better!

thanks a ton for the link and support, you guys are so nice and helpful, it's awesome :). i'm really sorry you've been ill your whole life, that is terrible. are you feeling better now, though? I got sick after having mono when i was 10 years old. The gluten attacks came on really gradually and pretty much everyone thought i was just a hormonal girl. My doctor actually said to my mother after i complained that i was always nauseas "Ugh these young girls, they're always nauseas."

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Oh my goodness - another Endo that doesn't understand Thyroid !!!!!! No wonder you feel ill. You need Thyroid meds and many find that Armour Thyroid is the best med for them. This link explains Hashimotos, and may help you understand that the TSH is a USELESS test for treating Hashis. You need Thyroid meds to suppress the TSH and also suppress the Thyroid Antibodies. Because if you don't they will attack and kill your Thyroid.

http://www.stopthethyroidmadness.com/hashimotos/

If you go to http://www.stopthethyroidmadness.com/community/

you will find Forums you can read and even join and post. I know its hard to do when you feel brain foggy but don't feel embarrassed - as these Mods have helped 1000s of people like you and fully understand what you are going through right now.

And they can help you find a Dr that understands Thyroid - as its pretty obvious that your Dr has not got a CLUE ! Run - run from him and find a good Dr.

thanks for the links :)!. i'm definately going to find a good one, i'm thinking of going to columbia university where they do reserch on autoimmune diseases and see patients. i'm so fed up with these idiotic doctors..i've been feeling bad since i was about 10, and it got really bad around 16, and i started going to doctors who kept tellingme and my mother (who believed them) its all in my head until a family friend doctor who isn't covered by my insurance wrote out the blood work i should have done and told me to have my doctor send me to those tests. and when they came back,some idiot looked at them and said they were absolutely fine even though my TSH was high. so i went online and read all those google sites about thyroid problems and autoimmune thyroid diseases and went to the endo doctor and talked to him about everything i knew and he laughed it off and said i didn't go to med school so what do i know. And i asked him for medication and he said it was all in range and there weren't enough antibodies to warrant medication. What an idiot, it makes me so mad. isn't it better to start meds when there isn't a lot of antibodies and before your thyroid is destroyed?UGHHH :angry: i practically begged him for medication and he just laughed it off :/

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HI ya..

I have problems with anything from gluten free range as is all packed with sugar and yeast and I have candida..so it feeds the yeasties..Obvisouly whole foods are okay but I cant eat the gluten-free bread or anything defo cant eat coco powder..

Good luck we will get there in the end ...My dad said to me this morning some of it may be state of mind as when it goes on for so long and it restricts your life you get down and when you get down you can cause problems like I get constipated when I get down...

Take care matey..x

Thanks i hope we do get there. I know mind power and staying positive is a huge part of it and we should try our best to stay up, but its so hard. especially when you're young and you have the health problems that my 92 year old great grandmother doesn't have :( blech. but we will manage it somehow. Btw, have you tried the gluten free bread without yeast? I had some before, it was mostly like rice flour and tapioca and something else. i dont' remember the brand right now though.

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. isn't it better to start meds when there isn't a lot of antibodies and before your thyroid is destroyed?UGHHH

Umm. YES !!

You don't really need research Universities. You just need a Dr that understands Thyroid. My Dr has Hashis herself and did all her training AFTER med school for herself to start with, and now her patients. She did this training from the internet and conferences. Have you seen Hertoghe's conferences ? He works tirelessly to train Drs and save us Thyroid people. He is the great grandson of the original pioneer that discovered Armour - 4th generation Endo.

http://www.hertoghe.info/home_uk.html

Check out his Conference schedule.

A good place to start looking for a good Thyroid Dr is to ask Compounding Chemists. They know Drs that prescribe Armour, and these are often Drs that understand the old Drs like Broda Barnes, and Hertoghe. You will make it - you are reading and asking questions. You know in your own mind that what you are being told isn't right, and that's a start.

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Thanks i hope we do get there. I know mind power and staying positive is a huge part of it and we should try our best to stay up, but its so hard. especially when you're young and you have the health problems that my 92 year old great grandmother doesn't have :( blech. but we will manage it somehow. Btw, have you tried the gluten free bread without yeast? I had some before, it was mostly like rice flour and tapioca and something else. i dont' remember the brand right now though.

Dear Luckygfme

I use Energ-y yeast free brown rice or white rice loaf. It is good for toast only. I hope this helps and you start feeling better.

Susan

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Dear luckygfme,

I have thought about killing myself due to things going so badly as well. However, one thing keeps me going. I know I do not really want to die, just for the suffering to stop. Besides, if I tried pills, knowing my luck, I would end up living through them pumping my stomach, and then be placed in a mental ward. I refuse to prove those doctors who all said I was crazy to be right! :angry:

I am too stubborn for that! Also, I know I will never get to accomplish any of the things I want to if I die.

Part of this severe depression is due to your Thyroid, the Celiac, and possibly yeast. I have the Candida issue as well. I may also have Lyme disease, Babesia, Leaky-Gut, Malabsorption, Nutritional Deficiencies, etc. the list goes on and on. My Thyroid is messed up, too. It is always to pokey or too fast. Even worse, I have a body that seems to get fat either way! You know only 10 percent of people with an overactive thyroid gain weight? I would be in that percentage! :angry:

When my Thyroid is slow, I cannot tolerate the side effects of the medication. Even worse, I did not lose any weight! :( Well, I decided to go herbal and make some dietary changes. It worked!

Within a couple of weeks, I was feeling better and losing weight! Basically, what I did was a ton of research and then followed suit. I found out certain foods slow down thyroid function. I had to avoid peaches, peanuts/peanut butter/oil, broccoli, refined carbohydrates and sugars, and add some healthy substitutions. Two herbs I began taking only once a day really did the trick. Solaray is the only manufacturer that makes Rosemary Leaf Extract, so they are who you need to get it from. You take one capsule daily. Ashwaghanda (Indian Ginseng) coupled with it (one capsule daily) really was great.

I also added one serving of beans or fish daily, plus 2 - 3 Tablespoons Virgin Coconut Oil. The difference really was amazing. Walking is the best exercise for this. It is a natural movement, and less difficult than other regimens. 20 minutes a day in front of the television will do! Also, adding iodized salt (sea salt is best, but if you cannot get that, make sure it is iodized) to food encourages Thyroid function.

When my Thyroid is too active, the Levothyroxine does help. Eventually, it flips the other way, though. You have to go get your bloodwork monitored pretty frequently. That is the best indicator of what is going on with your Thyroid. I have Thyroid tissue that swells up on my neck when it is hyper, though.

Sincerely,

NoGluGirl

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Thanks i hope we do get there. I know mind power and staying positive is a huge part of it and we should try our best to stay up, but its so hard. especially when you're young and you have the health problems that my 92 year old great grandmother doesn't have :( blech. but we will manage it somehow. Btw, have you tried the gluten free bread without yeast? I had some before, it was mostly like rice flour and tapioca and something else. i dont' remember the brand right now though.

Hi lucky, I just have to say that you may have the best attitude I've seen out there. You've decided to help yourself and learn everything you have to to make yourself better. Just because you need to vent sometimes (and this is the BEST place to do it!) doesn't mean you have a bad attitude. I think you're taking far better care of yourself than most people, and don't worry, you're not alone. I was 19 when I figured it out too. It's a good thing you figured it out so young, now you can do your best to be healthy and enjoy life (just don't drink any beer at those college parties!) And remember, it's a long road to recovery. I'm 23 and I only really felt good starting last year. It took me over two years to get my diet healthy, not just gluten free. I read a book that may apply to you, called The Diet Cure. It's all about a clinic that treats people through the use of amino acids, which can help repair your thryoid as well. I really recommend it, in fact, if you like the book and it makes sense to you, I'd get in touch with the clinic and see if they might be willing to treat you. I don't know much about thyroid disease but the book talked about it a lot, and if nothing else you'll learn a lot from it.

And be proud of yourself! Look what you've already accomplished!

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Dear luckgfme,

I so feel for you!! When everything is going well with my gluten free life, I think hey this is not such a big deal. But when I get glutened, or have a gluten-like-reaction to something else I get in the darkest of dark moods (fyi - my worst non-gluten glutening reaction was to tuna salad and I haven't touched tuna since - maybe it's the high protein or it's just too strong for our sensitive tummies). I can't speak to the thyriod issues that you're having but I can say this: there is nothing worse than the feeling that you have to be scared of everything that you are putting in your mouth. There have been weeks where I get nervous every time I eat, and convinced that something bad is going to happen. Eating is a fundamental thing and to not have it work is the worst!! So don't feel bad about how you are feeling - let yourself feel how you are feeling, and know that whatever goes through your head is a passing thing, and it's all ok. When I get sick I go back to the absolute basics, rice and chicken for lunch and dinner, an apple with peanut butter or something for a snack - no mixes, no boxed stuff... I'm sure you know this but once you have a few regular days everything will be much more maneagable. And try to give yourself some comfort from non-food sources, relax, paint your nails, take a bath, that little stuff can go a long way.

We're here for you! It'll be ok, I promise. It might take a while, and more than a few doctors, but it will be ok.

-sanglutengrl

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Luckygfme, which country do you live in? I am in Canada, and here they don't have Armour thyroid at all, my doctor had never heard of it. In the USA you can buy desiccated thyroid in the health food stores, but here in Canada, a doctor has to prescribe it. It was very hard to convince my doctor, who didn't have a clue, to allow me to have it.

I believe they don't have Armour in Australia and New Zealand, either.

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In Australia and NZ, Armour is called Natural Thyroid Hormone USP and is made to a Drs script at a Compounding Chemist.I believe in Canada it is called 'Thyroid'. I have just been to an Endo and he told me that NTH is made from cows :blink: , and is very inconsistent and unreliable. Luckily I knew that his was a RIDICULOUS statement and was able to tell him this.Armour is made from pigs. Armour is made to USP standards. If any Dr tries to tell you its inconsistent - they are telling you that the United States of America Pharmacopia standards are inconsistent and unreliable. Poppycock !

Once you get onto Armour, and titrate the dose up slowly - you reach a spot that is YOUR dose. Your own personal dose that works for you. Symptoms of Hypo disappear. Hyper never comes. Hypo never comes. You reach Thyroid utopia :P And also - you stop the Antibodies , and that stops any further damage. Synthetics don't seem to have this effect. They may change your blood chemistry - but they don't work as well on the Antibodies attacks and symptoms. And this is why your labs go up and down , and why you need to keep adjusting your ( synthetic ) dose. This is not a new science. Its an old and forgotten science. And sadly - the drug companies want it kept that way :(

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Umm. YES !!

You don't really need research Universities. You just need a Dr that understands Thyroid. My Dr has Hashis herself and did all her training AFTER med school for herself to start with, and now her patients. She did this training from the internet and conferences. Have you seen Hertoghe's conferences ? He works tirelessly to train Drs and save us Thyroid people. He is the great grandson of the original pioneer that discovered Armour - 4th generation Endo.

http://www.hertoghe.info/home_uk.html

Check out his Conference schedule.

A good place to start looking for a good Thyroid Dr is to ask Compounding Chemists. They know Drs that prescribe Armour, and these are often Drs that understand the old Drs like Broda Barnes, and Hertoghe. You will make it - you are reading and asking questions. You know in your own mind that what you are being told isn't right, and that's a start.

thanks again for the link, i'll definately check it out. That link you guys gave me had a directory of good thyroid doctors, though unfortunately most of them aren't covered by my insurance but there were afew i'm gonna check out. Armour sounds excellent, i'm gonna force them to give it to me, and if not there's a place i can buy it online although i'm not quite sure about dosing. That's awesome about your doctor, thanks so much for the links :)

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Dear Luckygfme

I use Energ-y yeast free brown rice or white rice loaf. It is good for toast only. I hope this helps and you start feeling better.

Susan

thanks so much :) and thanks a ton for the recommendation <3

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Hi lucky, I just have to say that you may have the best attitude I've seen out there. You've decided to help yourself and learn everything you have to to make yourself better. Just because you need to vent sometimes (and this is the BEST place to do it!) doesn't mean you have a bad attitude. I think you're taking far better care of yourself than most people, and don't worry, you're not alone. I was 19 when I figured it out too. It's a good thing you figured it out so young, now you can do your best to be healthy and enjoy life (just don't drink any beer at those college parties!) And remember, it's a long road to recovery. I'm 23 and I only really felt good starting last year. It took me over two years to get my diet healthy, not just gluten free. I read a book that may apply to you, called The Diet Cure. It's all about a clinic that treats people through the use of amino acids, which can help repair your thryoid as well. I really recommend it, in fact, if you like the book and it makes sense to you, I'd get in touch with the clinic and see if they might be willing to treat you. I don't know much about thyroid disease but the book talked about it a lot, and if nothing else you'll learn a lot from it.

And be proud of yourself! Look what you've already accomplished!

THanks so much. I'm glad you're feeling better!! & I'll definately find the book. I'm pretty desperate to start feeling betterfast. i'm trying to stop smoking too, which is hard right now (when i'm hungry and my stomach hurts so i can't eat i just smoke instead..terrible,i'm trying desperately to quit) but anyway, no beer for me. That's actually the thing that prompted me finding out about everything, I got really really really sick last summer after drinking.

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Dear georgie,

That Armour Thyroid sounds really helpful! I never know what it is doing until I get bloodwork.

It would be nice not to worry about that anymore. Is it called the same thing in the states? I am tired of playing Thyroid roulette!

Sincerely,

NoGluGirl

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Dear luckgfme,

I so feel for you!! When everything is going well with my gluten free life, I think hey this is not such a big deal. But when I get glutened, or have a gluten-like-reaction to something else I get in the darkest of dark moods (fyi - my worst non-gluten glutening reaction was to tuna salad and I haven't touched tuna since - maybe it's the high protein or it's just too strong for our sensitive tummies). I can't speak to the thyriod issues that you're having but I can say this: there is nothing worse than the feeling that you have to be scared of everything that you are putting in your mouth. There have been weeks where I get nervous every time I eat, and convinced that something bad is going to happen. Eating is a fundamental thing and to not have it work is the worst!! So don't feel bad about how you are feeling - let yourself feel how you are feeling, and know that whatever goes through your head is a passing thing, and it's all ok. When I get sick I go back to the absolute basics, rice and chicken for lunch and dinner, an apple with peanut butter or something for a snack - no mixes, no boxed stuff... I'm sure you know this but once you have a few regular days everything will be much more maneagable. And try to give yourself some comfort from non-food sources, relax, paint your nails, take a bath, that little stuff can go a long way.

We're here for you! It'll be ok, I promise. It might take a while, and more than a few doctors, but it will be ok.

-sanglutengrl

you're sweet <3. That's exactly how i feel. I was actually doing pretty good for like a month or so. I was in the best of moods and then BAAAAM. it's just such a downer and i do feel awfully helpless.

I am glad for this board though, otherwise i'd be seriously lost.

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Dear georgie,

That Armour Thyroid sounds really helpful! I never know what it is doing until I get bloodwork.

It would be nice not to worry about that anymore. Is it called the same thing in the states? I am tired of playing Thyroid roulette!

Sincerely,

NoGluGirl

It is actually!

http://www.inhousepharmacy.com/general/armour-thyroid.html :)

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Luckygfme, which country do you live in? I am in Canada, and here they don't have Armour thyroid at all, my doctor had never heard of it. In the USA you can buy desiccated thyroid in the health food stores, but here in Canada, a doctor has to prescribe it. It was very hard to convince my doctor, who didn't have a clue, to allow me to have it.

I believe they don't have Armour in Australia and New Zealand, either.

I live in the States so thankfully i can get it. I'm pretty sure i'll have to argue wit hthe doctor to get it but hopefully it won't be too hard. Doctors are so dense <_< IF anything, are you able to order it from the above link?

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I live in the States so thankfully i can get it. I'm pretty sure i'll have to argue wit hthe doctor to get it but hopefully it won't be too hard. Doctors are so dense <_< IF anything, are you able to order it from the above link?

Dear luckygfme,

Yay! Thanks for finding this! It is not as expensive as I expected, either! I hate having Thyroid disease. It is up, it down, either way I get fat. It is not fair! :( My doctor may not like that either. Anything that could make your life easier or help you seems to not be on their allowed list.

Sincerely,

NoGluGirl

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Dear luckygfme,

Yay! Thanks for finding this! It is not as expensive as I expected, either! I hate having Thyroid disease. It is up, it down, either way I get fat. It is not fair! :( My doctor may not like that either. Anything that could make your life easier or help you seems to not be on their allowed list.

Sincerely,

NoGluGirl

LOL true. well i'm not leaving him alone till he gives me it, and if anything i'll just order it and the hell with him. The thing about your weight, i see that you had your gallbladder removed. I know that it's especially difficult to lose weight when you don't have a gall bladder so that might also be the cause.

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