My celiac story...please send me courage!
#162953 - 03/22/05 08:19 AM
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Hi!
So...I added wheat back in last week in VERY small amounts. I had been eating barley oncee a week and doing seemingly ok with it. But I added the wheat, and then spelt bread, and my gas is smelly, I have hemms, a horrible taste in my mouth, etc., and I know it's the wheat but I think it's the gluten too? I ate oatmeal and felt AWFUL! Then I did something totaly dumb......I decided I would prob never have bread again so I ate a ton of french bread (couldn't resist!) Now I feel slugish and my tush hurts! 
I KNOW, I KNOW, my tests came back neg for celiac. But it sounds like I shouldn't eat the stuff regardless doesn't it? I know I'm always telling people to trust their gut. And I think I already have the answers....but it would help to hear your opinions.
no sugar, citrus, meat, (chicken even makes me sick!) tofu upsets my tummy....every day it is something else I can't digest properly. Who knows...maybe it's the barley I had every week keeping me from getting better?
Sorry to post about celiac on the IBS board....hope no one minds 
Thanks for reading! Feel good everyone *hugs*
P.S. Feeling low right now...any cheer-me-ups for being sick from gluten/wheat? How do you cope? Do you do something extra nice for yourself? I think I need to...I jut feel so yuck right now
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Formerly known as Ruchie
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I don't have advice - very unusual for me! - but I wanted to let you know I read your post and I'm so sorry to hear you're suffering so. Please don't beat yourself up about eating French bread - it's not dumb, just human. Frustration is a b**ch.
As for what I do when I'm feeling yuck, I curl up in a corner of the couch with a cup of herbal tea and a good trashy novel and disappear the world for an hour or so.
Hang in there - you're not alone.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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{{{Hugs}}}
#162961 - 03/22/05 08:55 AM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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Can you have a teeny bit of super-duper chocolate? A square of green and blacks always cheers me up! 
Keep in mind that the fibro might be messing up your food tolerances...Jen thought she was gs for ages and then wasn't.
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No, no chocolate for me. It's not worth feeling worse for...
I know it's wheat for sure...gluten not as sure. I DO know I've been taking this stuff in and out of my diet for 2.5 years and I seem to do better without it.
i just tried going to Trader Joe's but I couldn't find it I am going to get hubby to go with me tonight so I know what I'm lookin for next time.
In the meantime I need to go to WalMart and to Whole Foods. I just feel so down I don't want to go anywhere  BUT i will go anyway! If there's one thing you ladies have taught me...it's to get out evev if I don't feel like it. GREAT lesson!
Not easy right now! We're testing my adrenals with a spit test AND my gluten antibodies. I am HOPEFUL that things WILL get better. And that we will get to the bottom of this. The natropath isn't so sure I have fibro. He thinks it may be hypothyroidism. My thyroid is 3 CENTMETERS! It's HUGE! He said (as Dr. Jacob Teitelbaum mentions in From Fatigued to Fantastic), that hypothyroidism often mimmicks the symptoms of fibro. So we will see. it doesn't matter so much what I "have" as it does that I am able to treat it and live my life happily!
I feel in my bones I am on my way to wellness. But the path there is DIFFICULT, full of challenges, lonely times, etc. i'm so glad I have all of you on the boards to cheer me on...cause I sure need it!
Thanks Linz...you're the best! *big hugs* I hope you are feeling GREAT these days? Love, Ruchie
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Formerly known as Ruchie
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Ruchie!!
#163112 - 03/22/05 05:27 PM
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Taylahmai
Reged: 11/03/04
Posts: 257
Loc: Western Australia
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You poor little possum. I can hear your frusturation loud and clear!! We're in the same boat, negative tests for coeliac (for some reason in Aus we put an 'o' in before the 'e'.....) but still very sensitive to gluten. I went strictly GF for 6 weeks last year and so much energy returned. I've been predominantly GF since then (7 months) but have felt crappy ever since I started being only 'predominantly' as opposed to 'strictly'. But its confusing because I've also brought a few other foods back in since my strict 6 week diet of no meat, sugar, gluten, dairy, soy, alcohol etc etc. So its hard to know what my food intolerances/ sensitivities are. Hence why I'm going stop all the wondering, frusturation and confusion, and am doing my detection diet.
Anyway, as for gluten: wheat, oats and rye are all terrible me (bloat, C and horrible gas), I can't remember the last time I had barley, so I'm not sure how I react to it. Spelt I think I handle better, but its so hard when you have delayed onset of symptoms.
Anyway I'm determined that my detection diet is going to finally give me the answers that I need. I'll let you know how I go with my strict quest of GF. BTW, the pharmaliv (liver tonic) I was taking didn't do much, unfortunately I started eating gluten again at the same time and I became so fatigued, bloated and C that I stopped taking the supplement, and started focusing on my digestion again.
Maybe one day I'll clear my IBS and be able to focus on looking after my liver to see if that gives me some improvement!
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~ Live life, don't let life live you ~
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BIG *hugs* from down under, I'm feeling really down at the moment as well. So have decided that because I'm doing so well with my detection diet, I'm going to treat myself to a new pair of sunnies, and a trip to the beautician. I'm hoping that will make me feel a bit better bout myself.
Perhaps you can treat yourself to a facial or a massage? Or a new bag!! All girls need a little something to cheer them up when they're feeling really down 
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~ Live life, don't let life live you ~
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And how are you managing the constipation without magnesium or SFS? What are you eating? Brown rice, millet, fruits with peels?
What is your diet like, Chrissy?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Which I could make it better for you! But I can't even help myself. I too am down and feel beaten and defeated tonight. I am so confused and in so much physical pain. I have given up so many foods, yet get no relief. It is not fair.
I wish we could all just get together and laugh and hug. We must keep each other going. I know I couldn't handle this without you guys.
Ruchie, have you thought about going back on the lexepro? I know you want to be med free, but maybe your brain needs it? I'm not trying to push pills, No way. But thought I'd bring it up.
Many hugs to you, sweetie. 
Love,
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Hey Beth,
I replyed to your thread about detecting trigger foods when you have C a little while ago: check it out
As for managing my C, well I'm hoping to do it mostly with food alone - ie eating the right things (once I work out what they are!!). Plus I take a multivitamin which contains a little bit of magnesium, hopefully its enough to keep me ticking along. And the main thing for me is WATER WATER WATER and MORE WATER! Plus lots of tea and exercise.
I haven't eaten brown rice, millet or buckwheat for a while now, but am planning on bringing those into my diet once my bloat settles down a bit. For me, food consists of steamed/ roasted veges, GF bread, tuna & chicken at the moment. Not very exciting but my tummy is in real turmoil - oucch
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~ Live life, don't let life live you ~
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You don't do any grains at all? Not even white rice? No baked potato or sweet potato:
Is your GF bread white rice or brown rice?
What veggies are you roasting?
I am very interested in this! Are you doing this all on your own?
I'm surprised you took out the magnesium. Even in a vitamin there cannot be that much.
I am impressed that you are still able to go even without the fiber of grains!
No fruits either?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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PS
#163138 - 03/22/05 07:44 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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Did you stop your digestive enzyme and probiotic as well?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Whoops sorry Beth, I think I rushed that answer a bit. I do have white rice, and am about to start trying brown rice again (not a big fan of white). But mainly, I eat a lot of potato, pumpkin and sweet potato - can't get enough of the stuff! My GF bread is white rice flour I think, but its multigrain so am eating seeds okay (I think!).
I'm a bit iffy about fruit at the moment, but yep I do eat that too. Mainly bananas, nectarines & plums, skin on. I'm traditionally the one who ate whatever she liked, but my tummy has been reaaallly sensitive lately, so have decided to eat mainly SF foods to try and calm it a bit.
I'm umming and aaring about trying a mag/ cal supplement again, but with my detection diet I don't want to be masking the symptoms of food with supplements. I want to do this cold turkey and see if I can have normal BMs and no bloat without the need for mag, digestive enzymes, aloe etc to make me go.
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~ Live life, don't let life live you ~
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Re: PS
#163144 - 03/22/05 07:59 PM
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Taylahmai
Reged: 11/03/04
Posts: 257
Loc: Western Australia
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Yep have stopped everything, except for my probiotic and a multi-v.
It could be why my tummy is feeling so ick at the moment, but I imagine my dependence on supplements will pass once I'm eating only the foods it can digest well (on its own!).
I don't want to be popping pills for the rest of my life, I want to manage my IBS will food alone (plus a probiotic seems as I don't eat yoghurt). Plus, it just became too damn expensive. We'll see how I go
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~ Live life, don't let life live you ~
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would make you more C. That's why I am trying brown, and I prefer the taste of white!! Too bad we can't switch taste buds!
Bananas I thought would be more constipating too. But I guess people have had different results from these, from what I've read.
Have you tried brown rice or white rice pasta yet? I would think those would be okay.
I'm also surprised you can do seeds in the bread!! These are so hard to digest. Are you sure it's not your problem, Chrissy? Can you try a brand without the seeds? What brand are you eating? I recommend Kinikinnick, but that one does contain eggs.
Are you doing this all on your own without guidance? I wish you lots of luck. You are so determined!! Good for you for not giving in. I think I am to the point of being defeated tonight. I'm just so tired of the cramps and the unbarable pain. I just want to cry.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Thanx Beth. I am wondering whether the seeds are giving me grief, but I've never had a problem with them before. Its not the BMs I'm having trouble with lately its the bloat and pain, urghhh.
As for the detection diet, I'm doing it through a web site, so I have email support, they're really good actually. I'm also still roughly following my allergy diet (ie no tomatoes, no melons, no acidic fruits) but I'm not going back from another testing till I've got my GI problems sorted out myself. Sick of relying on other people!
I think my problem at the moment is I was eating gluten last week, as part of the detection diet, so apart from the discomfort I now know 100 % that gluten is a problem for me!! And no doubt stopping my enzymes and mag will cause a bit of a tummy upset till things get back into routine.
I'll get there Am eating so safe at the moment that I'll be better again before I know it!
Thank you for the good luck Beth. You hang in there sweety, we'll all get there one day. BTW Have you noticed ANY improvements this year?? You poor soul, it sounds like you've tried everything, my thoughts are with you xxxxxxx
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~ Live life, don't let life live you ~
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~ Live life, don't let life live you ~
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Thanks Taly!
I bought myself Prevention mag at WalMart today. That was my big splurge
We will do this together, ok? *big hugs* It;'s sooooo mport. to be healthy!
I don't what stage in life you're in,...but it occured to me that if I eat gluten/wheat/sugar, whatever I don't tolerate proplerly...I am not only huting myself but a potential fetus as well! That thinking sure set me straight!
Went to the HFS and bought myself some gluten free things. It's toug being GF AND kosher at the same time! Sooo many products are not Kosher so I miss out. Oh well....more time in the kitchen for me!
Thanks again for the love and support....sening lotsyour way as well
Love, Ruchie
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Formerly known as Ruchie
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Thanks beth *big hugs*
I have a gut feeling that it is my adrenals causing my depression...as does my naturopath. I WILL NOT take pills...to me it is a bandaid. I need to know WHY I am depressed 1st and foremost. Once we know what is causing it (most likely hypothyroid), we can treat the CASUSE not just the symptoms.
This i how I live my life...it is how I am most comfortable.
I hope you feel better soon *big hgs* Btw, did you get my response about bown rice?
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Formerly known as Ruchie
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Hey Ruch,
Well I'm certainly in a stage of my life where I'm soon to be thinking of children, and I know that gluten intolerance can increase chances of infertility and miscarriage. I'd never forgive myself if eating GF now meant such torment in my future, so not worth it! Not to mention the torment gluten causes now to my health, so there's no ifs or buts at the moment, I'm strictly GF for as long as it takes. And if I find that means forever then so be it. What seems really hard now will probably become second nature in a few months/ years time.
Plus I've had some non IBS related health scares lately (incl my latest pap showed abnormal cells), so I truly believe that with my health out of balance, the symptoms of my low immunity and poor digestion will show in all other areas of my body. So I'm even more determined to get my health on track, for my whole bodies sake, not just the bloat and C.
Bugger that Kosher means GF is even harder. I'm not 100 % certain what you can and can't eat, but if you let me know I'll help with some recipe ideas
Take care. I'm off sunglass shopping tomorrow - raaaayy. We're off camping this weekend so have gotta look the part!! I'll send you a pic if I get some
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~ Live life, don't let life live you ~
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pps Ruchie
#163156 - 03/22/05 09:17 PM
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Taylahmai
Reged: 11/03/04
Posts: 257
Loc: Western Australia
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I might have missed something in the boards lately.... or I may have just misread your post....does this mean you might be pregnant??
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~ Live life, don't let life live you ~
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Chrissy I WISH I were that healthy! I have to get my health straightened out still before I can consider pregnancy. But just THINKING about it made me realize that I am not doing this for me alone...but for my future children as well, G-d willing.
It helps me take better of myself knowing I am npt just doing it for me. It pushes me to give things up that I would cry over ENDLESSLY if I was just doing it for me.
Thanks for asking tho...you can pray for me if you like
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Formerly known as Ruchie
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... you are such a sweetheart My hopes and prayers are with you. May we both get well so we can be blessed with BIG families. And I think it really helps to look into the future and put our health in perspective. You are so right, we're not just doing this for ourselves, but for so many others who are dear to us. When I think of it that way, I have such stronger determination.
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~ Live life, don't let life live you ~
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Camping sounds like a BLAST! i've never been 
Lets see. I eat veggies, fruits, brown rice pasta, quinoa, millet, fruit, tomatoes (back in, thank G-d!), soy on occasion, almond milk/hazelnut milk, eggs are ok on occasion, and meat once in a VERY blue moon 
I DO NOT eat citrus fruits (but lemon juice in a recipe is ok), sugar, gluten, wheat, shellfish, cucumbers, and I ca't think of anything else right now.
Yippee, recipes! If you would like some from me as well let me know 
I don't miss sugar. It's true! Everything tastes SO much better without it. Every now and again I'll have a sudden attack for some...but they are rare and pass within 24 hours. So I think that is wise advice....that what is hard now will become 2nd nature. Good to keep in mind, thanks!!!! 
I'm SO thrilled you're on the boards...you're a fab friend. Keep well *biig hugs*
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Formerly known as Ruchie
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Amen! May we both get well so we can have BIG families (I want LOTS of kids too!) and so we can live optimal lives!
You're gonna be such a great mom. You're def. in my thoughts and prayers!!!
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Formerly known as Ruchie
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Well you sound very similar to me, except I don't eat melons, tomatoes or gassy veges like cucumber, cabbage, cauliflower, but I do eat chicken, fish and eggs. I'm trying a bit of soy at the moment, so much better for us then rice milk, but not sure if its making the bloat worse.
Do you have Heathers IBS recipe book? I've got some delicious recipes out of there, will write up a few for you to try
Otherwise do you like savoury muffins? I find the texture of GF flour so much smoother then gluten flour. Have you tried roasted capsicum and sun dried tomato? Or zucchini and carrot? Yummm, savoury muffins, can't beat em!! Yikes, you've got me in the mood, I think I'll cook up a storm to take away camping with me. Sure beats rice crackers!!
And I'M so thrilled you're on the boards. You're such a ray of sunshine, I'm so sorry you feel so badly. Always happens to the nicest of people 
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~ Live life, don't let life live you ~
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Right! No broccoli or cauliflower for me either...unless it's pureed!
I DO have her recipe book. I will have to look it through it again! (When I got it I was still scared of the kitchen...so I didn't use it much)
Honestly...I've never made bread...except once or twice with hubby's help (he lived in Rome and learned how to make AMAZING French bread...mmm). So....PLEASE PLEASE send me recipes. i would like to learn to make bread....I just need to be patient with myself Oh...wht are savoury muffins btw? Sounds delicious!
Hubby and I have plans for a MAJOR road trip when we (hopefully) move in May. It owuld be FABULOUS to have things to take on the road. You ave DEF lifted my spirits!!!!!!
You're very sweet Chrissy! All the folks on this board are WONDERFUl, special people...who do NOT deserve to suffer Thank G-d for Heather and everyone here.... *big hugs*
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Formerly known as Ruchie
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Recipes
#163180 - 03/22/05 10:52 PM
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Taylahmai
Reged: 11/03/04
Posts: 257
Loc: Western Australia
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Hi Ruchie,
Well I love savoury muffins, they're just like your normal sweet muffins, like blueberry or banana, instead using veges
Not sure of the metrics, but basically I make them from GF SR flour, rice milk, eggs (can you use egg replacement? should be able to get it from HFS?) a little bit of oil and then the fun part: the veges. I roast capsicum and tomoatoes and add that to the mix. Or I grate zucchini and carrot and add that. Or even all 4 together would be yummo.
I plan on making some tomorrow so I'll let you know what flavours I come up with. I'm away until Tuesday, but hopefully I'll have time to jump on the net before we head off camping tomorrow.
As for bread, well I usually use GF bread mix. I bake it in the oven rather then a bread machine. Its reaaaallly simple, and I often add herbs or seeds. Basically you just chuck the bread mix in a bowl, add the rice milk, a pinch of oil and whizz it with the cake beaters for a few minutes. Then I pop it in the oven with the door open for about 10 mins while it rises, then I shut the door and wait for it to cook golden brown. Yummmmm when its freshly cooked. It goes stale very quickly, so I usually only eat it toasted.
Take care
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~ Live life, don't let life live you ~
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as I've never heard of this before...how exciting!
Have a fabulous time camping...def take pics!
See ya when you get back
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Formerly known as Ruchie
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Okay, I can NEVER remember which "T" you need to get tested for if the regular blood test comes back fine and it still might be a problem.  Kandee knows! Is it 3T or 2T or am I on the wrong planet? I know it can be an issue with your bod not converting one to the other properly.
And you can have Fibro AND thyroid issues...but then getting the thyroid treatment can help LOADS.
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Wow, you read everything! *hugs* You are just unbelivably good to us Linz!
My naturopath ordered the bloodwork for me. I'm not sure what it is exactly tho. But he plans to look at my numbers and if they are on the low side of thing, I believe his plan is to start me on thyroid pills. I bet that will make a HUGE diff. in my depression, sleep, etc. Everything for that matter!
I def. have to listen to my gut more. And to trust myself! I thought there was a prob with wheat and there clearly is!
Here's to me having confidence in the future....
Thanks Linz....when I DO get all of this figured out one day, G-d willing, I will in a big way have you to thank!
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Formerly known as Ruchie
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Quote:
Okay, I can NEVER remember which "T" you need to get tested for if the regular blood test comes back fine and it still might be a problem. Kandee knows! Is it 3T or 2T or am I on the wrong planet? I know it can be an issue with your bod not converting one to the other properly.
And you can have Fibro AND thyroid issues...but then getting the thyroid treatment can help LOADS.
You can have a more than one autoimmune disease. In fact having just one, sets you up for having more. So yes, you can have fibro and hypothyroidism and Celiac or gluten intolerance or Diabetes...there are over 200 autoimmune diseases that can be connected in one way or another.
If you are hypothyroid you need to watch NOT only the T-4 levels but also the Free T-3 levels. They can make a world of difference in how you feel.
If you tested negative on all your Celiac tests and you still suspect gluten intolerance by the way you feel, get tested again in a year, by a different lab. I'm a first generation hypothyroid, likely caused by being gluten intolerant all my life, but only diagnosed wheat allergic 26 years ago. Now because of a freak viral infection I have chronic thyroidits. Not fun.
Your big nodules (goiter) usually indicate Hashimoto's hypothyroidism, but are rarely cancerous. They usually do not change size, even with medication, unless they happen to get large during a thyroiditis attack in which case your TPO readings will probably be high.
Ruchie, PLEASE stop trusting your doctors and get copies of all your blood work then research it for yourself. You have to learn what is best for you, and work WITH your doc since you know your body best, and he only knows medicine best. Don't rely on him/her to know everything. They can't possibly. You only have to look at what Heather discovered, ON HER OWN to realize that it is up to you to find your own answer. Kandee
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Can you eat white rice everyday and not get the Constipation, Chrissy?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Beth...
#163373 - 03/23/05 12:05 PM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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...I know I don;t get as C as you guys, but remember that SF cannot cause C...too little IF in comparison to SF can tho. Eating brown rice is just a way of getting a higher percentage of IF to SF in your diet.
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Hey Beth, I've never noticed that white rice makes me C..... I think because I eat lots of veges. Plus I don't have white rice itself every day, but I do have things made from white rice pretty much every day.
For example I'd have white rice with lots of cooked veges.
Or a GF roll made from white rice, with lots of salad.
Or my fav at the moment - muffins made with lots of cooked veges.
I have only had a couple of C attacks over the past couple of months, and these were due to eating gluten.
So in a round about way, yep I think I can eat white rice everday, so long as my fruit and veg intake matches the amount of rice I'm eating.
Hope this helps
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~ Live life, don't let life live you ~
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Hey there Ruchie, I too am gluten sensitive, my test came back neg. BUT, without gluten I am one hell of a lot happier! I still have pain, bloating, not every day, but much better than I was. You know if you take out the gluten once you have settled down, you might find the other foods won't upset you. Give it a go. Good luck, Neeta
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