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Things Are Going Down Hill....


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16 replies to this topic

#1 pixiegirl

 
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Posted 11 November 2004 - 04:36 AM

I'm one of those in the gray area, so far all test negative but gluten-free diet really helped me for 4 weeks.... however... for some reason the runs have come back, not as bad as they were pre gluten-free but not good either. I know for sure I have not been glutened. I have only eaten at home and mostly just fresh foods.

I've been eating a lot of spinach and cabbage (don't ask why, i'm not sure, just a yen I guess and making stir frys a lot, using La Choy soy sauce which every list says is gluten-free and the ingrediets appear to be). I also went to Whole Foods Market and bought a gluten-free pound cake, its made by a popular gluten-free company (can't think of the name right now) but I'm pretty sure that is really gluten-free.

I'm not a huge milk drinker, I've always had Lactaid milk in my tea in the morning and thats it.

Sigh, so why did I go down hill? What happened, I'm so disappointed right now, I've been so careful and I was feeling so good and like I had said in a previous post all my symptoms miraculously disappeared. Well now I'm more then halfway back to where I started. My belly is grumbling constantly again. Oh well, was looking for ideas and wanted to vent, I'm so upset.

I received my entrolab stuff in the mail and will do it and send it in on monday but now I'm wondering if I need to do that full food allergy stuff with York. (going to go broke!)

thanks for listening! Susan
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#2 Guest_Lindam_*

 
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Posted 11 November 2004 - 11:03 AM

Please don't get so discouraged. I was diagnosed back in March and have had many problems. At first IBS, then Spastic colon to final diagnosis of Celiac. I was told that once you are off the gluten, you could also find what other food allergies you have. So here I was, no more gluten, trying so hard to be good, still getting so sick. So about 3 weeks ago I had a horrible attack and the doctor just gave me more pills to calm my stomach down. That worked for about a week, until 2 weeks ago another attack came on and this time they found I had a gallbladder problem. So out that came. May I say after all this, I feel like a million dollars. I don't know that my gallbladder wasn't the problem all the time, but the doctors sure seem to think that it was.

Feel better, and keep a stiff upper chin. It will get better!

Linda :)
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#3 Donna F

 
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Posted 11 November 2004 - 01:08 PM

Susan,

I don't know how it affected you before you went gluten-free, but all that cabbage and spinach sure would send me to the bathroom! Perhaps you are not so tolerant of those as you used to be? Maybe smaller portions? Or try eliminating them from your diet for a few days until you get yourself back to normal.

I felt great after I went gluten-free too, but after a while I found myself getting more sensative to other things. And if you have to prepare gluten-containing things for other people in your family, or if someone in your home is contaminating something, there's always that possibility too. Heck, I've gone to Whole Foods and gotten sick when I got home! I think it was the bakery - flour in the air, getting in the lungs, eyes and mouth no doubt! Could be something you were contaminated with days ago that is taking a while to get out of your system. My metabolism is very fast, so, thankfully, when I have a problem, it's over pretty shortly, but other people take longer to get it all out.

Believe it or not, aloe juice may help too. I drink aloe juice every day, but more when I don't feel good. I think it cleans out the system and it's EXCELLENT for healing, inside AND out! You can get it pretty cheap in any health-food store. I pay about $6 for a 32oz bottle and drink at least 2oz every morning, and 2oz every few hours if my system is upset.

Hope you're feeling better!
-donna
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#4 tarnalberry

 
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Posted 11 November 2004 - 01:25 PM

The up in veggies - particularly those two - may be part of the problem. Does the issue subside if you reduce your intake there?
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
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#5 alltourmaline

 
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Posted 11 November 2004 - 01:29 PM

Susan,
I sympathize with you. I felt great the first two weeks on the gluten-free diet and now I seem to have random attacks too. I wonder if we become more sensitive to gluten once we start eliminating it. I wish I could give you some advice, but since I am new to this, I will just offer my support and good wishes.
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#6 pixiegirl

 
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Posted 11 November 2004 - 03:45 PM

Thanks for the support everyone, I really needed it. I'm laying off the spinach and cabbage today, I hope that helps and I understand the 2 steps forward, one step back thing but darn, I was feeling so good. I do feel a bit better today and my belly is quiet so thats good. I actually had an early dinner at Outback Steak house and they seemed very aware of the gluten thing. So far I feel good.

Again, thanks for the support and the ideas!

Susan :unsure:
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#7 tom

 
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Posted 01 December 2004 - 01:52 PM

Susan,
Please try dairy-free for a couple days. It made a world of difference for me.
And that does not mean just lactose-free. Even the alleged "non-dairy" creamers contain casein (a milk derivative). The labels of these alleged "non-dairy" products actually have the words "a milk derivative", yet they somehow are allowed to put non-dairy in BIG letters on the front.
The Silk brand of soymilk works great for me over cereal and in coffee. (the company, White Wave, seems to be renaming/rebranding so it may have a diff name at your local store. Sorry i don't recall the new names right now, but the small print will say mfgd by whitewave)

Upon 1st going 100% gluten-free, i felt a ton better but it wasn't until starting dairy-free that i really felt glad to be alive again.

A good list of ingred to avoid is at http://www.nomilk.com/mri.txt
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#8 Canadian Karen

 
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Posted 01 December 2004 - 05:28 PM

Hi Susan,

Definitely the cabbage. My celiac specialist specifically told me to stay away from cabbage, as it produces gas and abdominal pain.....

Karen
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Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

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#9 wclemens

 
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Posted 02 December 2004 - 11:28 PM

Susan,
I believe we do get more sensitive to everything as we become more gluten free. I first eliminated all grains, then had to eliminate all milk and dairy products as well, then egg whites, and yeast. It's hard to read each and every label before putting any food in my mouth, but that seems to be what it takes. Every person has their own set of intolerances, I know, so I hope that you can soon discover what is causing your distress. The suggestion about avoiding casein is so true! And add whey to that list. They both come from milk. I've found the only way to learn what I can tolerate is to keep my diet simple and add only one new food at a time, then I will feel the effects almost immediately. Good luck in your new adventure at remaining gluten free! Welda
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#10 pixiegirl

 
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Posted 03 December 2004 - 03:19 AM

Thanks for all the info, it was hard enough going gluten-free, I hate the idea of soy, milk, cabbage, yeast.. on and on, but i'm slowly going to eliminate stuff I guess. I had a McCormack spice mix last night on my chicken (Montreal chicken seasoning, I think) and I got really sick last night, the ingredient list looked ok to me but... every thing else I had was totally gluten-free (chicken, broccoli, baked potato) so it had to be the spice. Sigh.

Susan :blink:
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#11 lovegrov

 
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Posted 03 December 2004 - 05:56 AM

McCormick clearly lists any gluten so if it read OK, it was gluten-free. And I'm pretty certain the Montreal seasoning IS gluten-free. But of course with any processed product, contamination can always happen. And my wife, who is allergic only to shellfish, once felt bad after eating that seasoning.

richard
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#12 darlindeb25

 
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Posted 03 December 2004 - 06:04 AM

:( i had broccoli the other night and it tased so good :P but it didnt agree with me, not one little bit :angry: --i have never done well with the broccoli, cauliflower, cabbage, brussel sprouts groups of food--i love them, but just way to gassy for me---burdee told me to try beano or excuseme next time and see if that helps--i may just do that---you may not have glutened yourself, just gassed you up :P deb
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We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#13 ssantori

 
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Posted 08 December 2004 - 01:21 PM

I try to stay away from Soy sauces or spice/seasoning mixes. Some of them even use flour to prepare the mix, to prevent clumping. did you know that some places cut the pepper shakers with flour? I didn't know La Choy Soy Sauce was gluten-free. I use wheat free tamari sauce. This site has a list of condiments, but La Choy Soy Sauce is not on it.

I don't know about the vegetables causing those problems. With everyone, I mean. For many of us, those are the healthiest foods we can eat. My celiac daughter can eat beans endlessly. My family has always eaten cruciferous vegetables and also lots of beans (in the Southwest). Perhaps you have to get used to it, but it has never caused any of us any discomfort. I have heard that you should work up to it if you are not used to it.

I do think that previous damage from years of undiagnosed celiac disease can be hard to manage. Does it heal after awhile?
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#14 lovegrov

 
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Posted 08 December 2004 - 01:42 PM

I've heard this rumor about pepper and flour but don't believe it to be true. I've certainly never found it -- besides, it would gum up the pepper shakers if it got damp. I think people can relax and use the pepper.

richard
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#15 sophie2040

 
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Posted 08 December 2004 - 08:22 PM

i have never done well with the broccoli, cauliflower, cabbage, brussel sprouts groups of food--i love them, but just way to gassy for me---burdee told me to try beano or excuseme next time and see if that helps
:P deb

Just a note about beano....my doctor told me that it's not recommended for people with asthma, as it can bring on or worsen breathing problems.
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