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Hi! I tested negative for both Coeliac and Gluten intolerance both through blood work and through 2 biopsy's and yet (I've only been doing this a week though) have found I feel GREAT GF! I have NO money to speak of (even paying rent is a struggle some weeks) but there are cheaper alternatives out there. The bread is quite heavy so while you pay more you don't eat as much and the rice pasta is the same price as normal pasta (well it is over here). I too couldn't stabilise at all, even on the what to eat when you can't eat anything diet I still had MAJOR cramps and D. I actually got worse on it  I say give it a try, see how you go and you'll know within a few weeks if you are feeling better. I've had NO D since I started and I have pms (I usually get very explosive gastro D when I have PMS so this is amazing). Hope this helps.
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Amy
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Amy
#190773 - 06/30/05 08:19 PM
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jen1013
Reged: 05/06/05
Posts: 1322
Loc: the wabe
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Thanks for the advice. I wonder if I can get safe pre-made GF bread here. I bake my own bread because the only non-HFCS bread I can find here in the stores is sourdough, and I HATE sourdough (it makes my stomach turn, I feel like I am eating something I should have thrown out last week). 
Can you drink herbal tea? I get D from herbal tea. (And I have tried like twenty different kinds/brands -- yes, I was in denial, thanks.) This really frustrated me because it is supposed to be so safe that it's on the what-you-can't-eat[etc] diet, but for me it is an instant trigger. I have had normal evil decaf tea and didn't seem to have a bad reaction from it -- I know it's tough to tell for sure when you're not stable anyway, but it definitely did not affect me like herbal tea does. I miss my sleepytime tea. 
Anyway, it's great that you are feeling better on it. Weren't you taking slippery elm? Are you still taking this? Finding a SFS that I can take is also another challenge of mine.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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when I had my blood work done to test for the gluten antibodies. I have high scores on two of the tests and my doctor (and many others) opinion is that if you score high on the blood test for gluten antibodies, you should remain on a GF diet. Most likely, I have a Gluten Intolerance and IBS.  So, while I may need to eat GF, eating GF will not necessarily help the pain and symptoms of the IBS. If I only had high antibodies and no IBS, the GF diet might be successful. But, I guess I've taken the stance that if I have two problems and I don't treat either I will have symptoms for sure. If I have two problems and I am able to treat one of them (the gluten intolerance by eating GF) it is still gives me a chance to work on the other problem without making the first problem worse. Sort of like killing off one bird, but still needing to kill off the other. Maybe I won't feel relief until I figure out the IBS? 
Before going GF I used to have Diarrhea every day, 6 to 10 times a day and pain. Now, I have constipation and the pain.
I am going to be retested again to see if my antibodies are still high despite being on a gluten free diet. If they are, it could indicate that something else is going on and that my body just produces the antibodies.
No matter how the test comes back, I have decided to try eating gluten again to see how my body reacts...to see if I feel better or if my symptoms change.
As you said, the bread is extremely expensive..like 7 dollars for a loaf of 13 pieces of bread...and 2 dollars for 2 ounce package of pretzels! 4 Bagels cost 6 dollars!
I want to see if maybe some of my GF choices are actually hurting my tummy.
You have a good memory! Yes, I've been at this a long time to, and have yet to feel one bit better. Not one degree of improvement. It's discouraging isn't it? It's hard to understand how this diet can be such a blessing for some, but for us it has not helped. I don't get it.
Are you taking an SFS at all? I'm sorry you are still struggling. It couldn't hurt to try eating Gluten Free. You don't need to do breads everyday. You could do homemade SF soups, potatoes, rice, quino, rice cakes, corn cereals, Baked Kettle Krips, Rice Cereals, Rice Noodles,all the safe proteins, GF rice milk...
Let me know what you decide to do. And for the record, feel free to ask any question you like. I'll try to answer as best I can. 
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I'm glad you are having luck with the GF diet....Maybe you have finally found your answer! That would be wonderful. How long have you been eating GF now?
I just wish I could join you in the "feeling better eating GF" club! I guess I'm all alone now in unstability land!
But I am so very happy if this continues to work for you. I'll keep my fingers crossed for you, sweetie!
Love and hugs!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Re: Amy
#190779 - 06/30/05 09:15 PM
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doubletrouble
Reged: 11/14/04
Posts: 1530
Loc: Canberra, Australia
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I could handle herbal tea's (I think) but to be honest a single cup of coffee in the morning and 1 or 2 decaf coffee's durning the day doesn't seem to make a difference to me either. Neither does milk. I don't react to a lot of the trigger foods but react to things that are supposedly safe. It's weird. I've never tried sourdough bread before. Although here sourdough seems to be another name for "white" bread I'm sure if I can buy GF bread over here you could get it over there (Australia doesn't have a lot of GF variety) but if you can't I do have some recipies for different types of GF bread. I haven't tried them though to be honest. I can't stand the GF bread at all. It makes my belly churn
I'm not on an SFS either. All of them (well except the Acacia, it's the only one I haven't tried) gave me worse D than I had without them. I do take slippery elm. A sample of my day would be (and please excuse the fact I'm not eating enough food, I'm still getting used to what I can and can't eat):
Wake up and have 20mls of inner leaf Aloe Vera Juice and a cup of coffee (disclaimer: this is NOT safe!).
10:00am: a big bowl of rice porridge (rolled rice flakes with milk, also not safe,) and topped with brown sugar.
2 Slippery Elm Capsules straight after.
11:15am: A big handful of Rice crackers (Sakata's are good and come in some yummy GF flavours, even gourmet one's now).
12:30ish: Sometimes I'll brave 2 slices of GF toast but most often I'll have 4 rice crackers (the big sandwhich size one's) with vege spread, lettuce, anything really.
3:15pm: Afternoon tea, sometimes a GF muffin, sometimes more rice sakata's or corn chips and salsa dip.
7:30pm: Dinner. Whatever I cook to be honest. Sometimes fish, rice and veges. Usually some sort of protein, polenta and a vege or 2.
2 slippery elm capsules straight after dinner.
Before bed I take 1 dairy free inner health plus capsule and another 20mls of Aloe Vera juice (this is a very argumentative subject about whether or not it is safe).
And that's about it but it's been the lack of wheat or gluten that has really helped I think.
I kinda use the slippery elm as my SFS as it helps constipation and also diarreah. If you buy the Blackmoore's powder form you can vary the dose to suit either C or D but I find the capsules are working fine for me (and they don't taste revolting like the powder). Hope this helps and if you decide to go ahead with this feel free to ask me any advice amyemadden@hotmail.com . Also you need to give it at least 6 weeks to be sure if it's helping then try reintroducing gluten first and see if there's a reaction. If not then try wheat and see if you get sick again then you'll know for certain. Oh and read jar labels carefully! SO many foods use wheat starches and thickners made from wheat. Even good old candy snakes have this in them
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Amy
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will test for high antibodies? My GP initially did some bloodwork on me and said that included a celiac test, but that's all I know. All I heard was that everything came back normal, with the exception my protein/sodium (I think?) levels were too high.
If going GF switched your D to C, wouldn't that be a sign that you do have a gluten intolerance? Or is it possible that the GF diet is constipating? When you had D all the time before you went GF, were you following Heather's diet? I hope you don't really have gluten intolerance and IBS -- that would suck! It also seems like IBS-C people have a harder time getting it under control than the IBS-D. Good luck with adding gluten back! I really hope that at least it would help with some of the pain. You seem to suffer so much.
I am a D ... and while it isn't exactly severe, it's just ALWAYS THERE. If I stop taking my daily handful of Imodium/Tylenol/Levsin, I'm OK at first, but as a day or two go by, the pain and cramping and loose stools come back, with a full-fledged D attack at least every couple days. With the meds, I get pain and 1-4 BMs each day. If I only take meds in the AM, then by 6-7 PM I'm usually having BMs every 30-45 minutes. Ugh! I'm pretty fanatical about Heather's diet, mainly because I'm so scared of having an attack, so I feel kind of at-wit's-end-ish. I even did the hypno CDs -- no help whatsoever. So that's why I'm starting to think about the whole GF thing.
I have seen a GI several times but he was horrible. So after months of waiting I am finally getting into this digestive diseases clinic with an excellent reputation. This is at the end of July, so in case they do want to do any bloodwork I figure I'd better keep eating gluten until then. I will probably go GF in August.
I can't believe how expensive GF stuff is. What are your "cheap" GF staples?
No, I'm not taking a SFS. Every one I've tried has made me waaay worse. I finally broke down and ordered Acacia yesterday. Maybe that will be my "miracle" SFS.
Thanks for all the advice -- I'm sure I will need more once I finally do take the GF-plunge.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Jen..
#191103 - 07/02/05 04:48 PM
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doubletrouble
Reged: 11/14/04
Posts: 1530
Loc: Canberra, Australia
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The blood test for coeliac disease would have picked up high antibodies. However not all doctors worry about this so it might be worth asking if they were okay too as your worried about being intolerant to gluten. That being said I'm still doing okay on the gf diet and my blood work was all fine
I've found the gf diet to be a little constipating. At first I stopped going altogether (I'm an A mostly D so that was weird!). Now I'm back to going every day but it's no longer D (well except for at the moment darn women's problems, I HATE hormones). Mostly though I've found that the terrible cramping pains and gas have completely disappeared and the fact that I no longer have to carry immodium EVERYWHERE is wonderful.
You should probably stay on gluten like you said until they've finished testing. Blood work doesn't always pick up coeliac disease and if you stop eating it and you have it you'll recover and be misdiagnosed so you're doing the right thing.
Staples (and I'm no expert, Beth can probably help you much better):
Rice
Quinoa-cooked like cous cous
Rice Pasta's (these are great, just throw some GF pasta sauce on top and you have a meal in 10 minutes plus you can add it to main meals with chicken or fish and a vege).
Polenta, polenta, polenta, I just love the stuff and eat it almost every day.
Umm some Sun Rice Risotto's are easy to make, cheap and yummy with a main meal(not sure if they're in the US though they may be an aussie brand)
Rice Cakes also cheap and I use them as bread as I can't make myself eat the GF bread
GF muffins I make them myself out of the Orgran packet mixes and they're great for snacks and not too pricy
Rolled Rice Flakes are cheap and great for making rice porridge with
Finally Sakata's have a yummy gourmet range of Rice Snacks with flavours like honey mustard and lime and cracked pepper (GF, fat free and delicious)
Oh and baked corn chips and tomato salsa are also good for snacks if you can handle the salsa. I'm fine with a little bit but don't dare go overboard
Hope this has helped a little 
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Amy
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Re: Amy
#191108 - 07/02/05 05:12 PM
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jen1013
Reged: 05/06/05
Posts: 1322
Loc: the wabe
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One thing I am curious about -- if you're feeling crummy all the time, how can you truly figure out your triggers? Herbal tea is really the only thing I can say with 100% confidence is a trigger because I always get D right after I drink it. Oh, and cigarette smoke -- if I inhale it more than, oh, say, five seconds, I am sprinting for the nearest bathroom. But I can't honestly say that X doesn't bother me, because I am always D-ish and so I don't know if it's X, Y, Z, or 46 that's killing me. Or all of the above.
Sourdough bread is basically white bread, but instead of using yeast you let water and flour sit until it becomes disgusting and bacteria-filled, and then make it into bread. Sounds yummy, eh?? Actually, a lot of people really like it, but to me it just tastes like something gone horribly wrong.
Where does one usually buy slippery elm? I don't recall seeing that in the supplement section at the usual chain stores. I am finally going to try Acacia, but if that disagrees with me the way other fibers do I will probably try slippery elm. What do you think of this? I found it when I googled for slippery elm: Intestinal/Soothe & Build
Can you take multivitamins? I have never been able to take multivitamins with extra iron in them -- even when I had a normal digestive system the iron gave me horrid cramps. I've tried the 4 or so kinds available w/o iron and they all violently disagree with me.
I'm curious about the aloe vera juice you mentioned -- will do a search on it and see what comes up.
Thanks for the advice!
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Re: Amy
#191130 - 07/02/05 07:22 PM
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doubletrouble
Reged: 11/14/04
Posts: 1530
Loc: Canberra, Australia
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I was feeling crummy all the time too. I've blamed SO many things for causing reactions when in reality I had no idea if it was that food or stress or something else. I was having daily D, had no idea what it meant to feel "well". For me well is not TOO many pains and cramps and not too bad D (going once or twice instead of heaps more). When I found this site I tried the "what to eat when you can't eat anything" diet and I got WORSE, WAY worse. Now it's about 8 months down the track and I finally wondered why that was. It seemed weird that all I was really eating was wheat and water and I was worse. So I thought about what I ate in a day and realised wheat for breakfast, wheat for lunch, wheat based something for dinner so I wondered if all I was eating was a trigger food? So I decided to cut it out. Are you still eating anything other than wheat which MIGHT be triggering a reaction? Have you tried the what to eat when you can't eat anything diet?
I buy my Slippery Elm from the HFS but I can also get a digestive powder which is a combination of slippery elm and peppermint powder from the chemist. If you ask at the HFS for it they might have it. It can be called by a few different names.
The link you gave me looks okay but I'm not sure about some of the ingredients. I'll ask Linz to take a look, she knows a lot more about this sort of stuff than I do.
The only multi I've ever been able to take is one without iron and I couldn't take the full dose or it cramped me up. I'm now on one my naturopath gave me and I take a quarter dose of it every day (it comes in a powder so you can alter the dose to suit) but I'm not sure if it's doing any good at such a low dose.
Here is a link to the aloe vera juice that I take. If you google it, it is available in the US.
Good luck and let me know how you go.
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Amy
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Can you take a look at the link in Jen's post above mine and give some advice on whether or not you think these herbs look safe? I know about one or 2 of them but the others I'm not sure about. Thanks for the help
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Amy
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