Are all GF people STRICTLY GF?
#162805 - 03/21/05 07:15 PM
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Taylahmai
Reged: 11/03/04
Posts: 257
Loc: Western Australia
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Hi all GF people. I just posted a thread in response to Aneeta's post 'help me please', but I wanted to start a new one as I am really confused at the moment.
What I'm wanting to know is, how many of you have had negative test results for coeliac, but are still gluten sensitive (ie your body can't break down the gluten as opposed to the gluten attacking the lining of your intestines)? Do all you GF sensitive people (not coeliac people) eat STRICTLY GF? That means absolutely NOTHING with gluten in it? I'm really struggling to understand at the moment.
I know that going strictly GF for a couple of months or years will be necessary for my system to stabilise, but once I'm 100 % (yep determined to get there!) would I develop a tolerance to small amounts of gluten, the same way someone who has lactose intolerance has a tolerance to small amounts of lactose??
All the info I've been getting is conflicting, my doctor tells me that I won't be gluten sensitive forever, its only temporary while my immunity is so low. Yet the people from foodintol have told me that despite not being coeliac I still HAVE to go GF for life.
I know that if going strictly GF improves my health, then that is all that matters, but I don't want to have to be eliminating all forms of gluten from my diet if it isn't completely necessary.
Is anyone else in this bind???
Thanx for your support
T xx
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~ Live life, don't let life live you ~
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I tested postitive to antibodies in the blood by two different medical doctors, yet biopsy came back negative. I eat TOTALLY GF. Not had any gluten in about 1 1/2 years. Nothing.
I am assuming I will need to eat this way forever. Once antibodies are present, I assume they would just return if I started to eat gluten again. I don't know the exact answer to that though. I doubt the doctors even know. This whole gluten intolerance seems pretty misunderstood.
I would love to eat a bagel again! But I don't think that is likely from what I have learned from Kandee and celiac.com.
What do you think, Chrissy? I am interested in what others have to say on this as well. Abby, any others?
Would like to add that even being strictly GF, I still have gas, bloat, constipation and feel no better. Except I traded D to C when going GF. Nice trade off, huh. 
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Hey Beth! I've missed our chats, how are you doing lately?
Well I'm confused because all my blood tests came back negative (no gluten antibodies), as did the scope, but I know I'm gluten sensitive to large amounts of gluten (eg a couple of times a day for a couple of days) because it makes me bloated and C. So I'm wondering whether I can perhaps still have small amounts of gluten.... like my doctor says..... or whether I have to cut it out STRICTLY like my naturopath says...
I think once my system stabilises I'm going to test small amounts of gluten and see what the effects are. The only way I'll know is by testing it on myself. But I am worried that I may be doing myself damage if I continue to eat GF, even if I don't have symptoms.
But I don't have coeliac, so why am I so worried!!? Because there's a lot of scaremongers out there who have made me very confused.
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~ Live life, don't let life live you ~
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I wa tested negative on the blood tests, the endscopy, etc. I KNOW I have a problem with wheat...with gluten I am uncertain.
the tests are NOt the be-all-end-all deciding facvtor.
I spoke with my allergist last year--gret man! He told me he had a patient that was ALWAYS sick. Gluten tests came back normal. The man had a suspicion it was gluten...took it out...a new man!
I'm sorry if thi makes things more confusing  I say go with your gut (no pun intended!)
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Formerly known as Ruchie
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Thanx Ruchie. I know the tests aren't the be all end all, and I never 100 % trust doctors. I know inside me that I'm gluten sensitive at the moment, but thats just in, perhaps its only at the moment. I've done so much reading about coeliac versus gluten intolerance and the literature suggests I could have a temporary gluten sensitivity because my immune system is so low at the moment. I'm wondering if once I go GF & DF for long enough, my system improves, stabilises, and then I can tolerate small amounts again?
There's probably a lot of you that think I should pull my head out of the sand and accept I should be GF for life, and to stop making excuses (I tell myself this) but GF is really expensive, really antisociable and really hard. I don't want to put myself through this for the rest of my life unless its absolutely necessary!
Time will tell, I have to stabilise first before I can even think about testing my theory. I suppose I just wanted to vent, and to find out how strict everyone else is (for example a pkt of plain potato chips is GF but a pack of flavoured potato chips has gluten in it, the majority of rice crackers still have gluten in them, almost ALL processed sauces have gluten). I don't want to live on a plain vege and rice diet for the rest of my life!
Thanx for listening 
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~ Live life, don't let life live you ~
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Actually, a few days a go I added a tiny amount back in. When I did that I got sick to my tummy. Then yestrday I had a wrap. OWEEEEEEEE! I had spelt bread today and I'm majorly bloated. I KNOW wheat is def a prob and I'm fairly certain gluten is too....
My guess is that I can't have any of it for a LONG time to feel better. Maybe in a year or so (after Passover is over), I will try to add it bac in again. I had eliminated it for 3 mnths this past time (I've been on and off with gluten for like 2.5 years now), and I KNOW right away if it effects me (it DOES). 
I wish I had better news....I think for me gluten free/wheat free is best.
I hope you figure all of this out soon *hugs*
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Formerly known as Ruchie
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Actually, a few days a go I added a tiny amount back in. When I did that I got sick to my tummy. Then yestrday I had a wrap. OWEEEEEEEE! I had spelt bread today and I'm majorly bloated. I KNOW wheat is def a prob and I'm fairly certain gluten is too....
My guess is that I can't have any of it for a LONG time to feel better. Maybe in a year or so (after Passover is over), I will try to add it bac in again. I had eliminated it for 3 mnths this past time (I've been on and off with gluten for like 2.5 years now), and I KNOW right away if it effects me (it DOES).
I wish I had better news....I think for me gluten free/wheat free is best.
I hope you figure all of this out soon *hugs*
P.S. I blive naturopaths know more about this then allopathic docs. But again...PLEASE trust your gut (noy your emotion...at least my emotions tell me to eat it it's fine!) 
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Formerly known as Ruchie
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I agree!
#162824 - 03/21/05 08:50 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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Very expensive, very difficult socially, very restrictive. I am dying for a bagel or some pita bread!!
I too am sick of this plain stuff. EVERYTHING has gluten and I want to be part of the gluten eating world again too. It is very expensive, and seems impossible to go to restaurant or to grandma's or family barbecue and eat GF and IBS safe!
I totally agree with you, Chrissy. I am still fighting this diagnosis as well. With me, I think it will be for life! Because I had tested positive with the blood work. I have higher hopes for you, though.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Hi again Ruchie! My thoughts are that we are probably highly sensitive to gluten at the moment because our digestive systems are in such turmoil. But once we stabilise (not if, once!! LOL) we should be able to tolerate small, controlled amounts of it, and our bodies will be able to tell us just how much? A long drawnout process of elimination, yikes, sounds like fun, not!
I know I can't handle obvious forms of gluten, eg bread, muffins, cake etc etc, but I don't get the same symptoms from when I eat products that contain small amounts, eg potato chips, sauce, gravy.
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I'm usually in bed by now! I am way past bed time!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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