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Back On Gluten


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40 replies to this topic

#31 cdford

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Posted 07 February 2005 - 09:03 PM

To the one who was also having the fibromyalgia symptoms...those will mediate over time as well. How much they mediate will depend on how long and how badly you have had them. Mine were debilitating and now I can actually sit here and write these notes (well, at least until that front comes through here tomorrow anyway). I get into gluten accidentally, and I am miserable again.
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Donna
South Georgia
9 yrs gluten-free
...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

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#32 BamBam

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Posted 08 February 2005 - 09:44 AM

You know what. I just would not do it. I am self diagnosed with celiac. I know my body and what happens if I eat wheat - oats or some kind of preservative that has wheat or gluten in it. I fought all the symptoms for twelve years, horrible pain and diarrhea and many accidents because of the problem. I gave up wheat in 1998 but did not pay attention to preservatives. I still had minor problems, and so this last August 6, 2004 I gave it all up, and I feel so much better. I have my energy back and I still have anxieties to deal with (the wheres the bathroom issue when I travel) but when I went to the doctor and they suggested that I eat wheat for six weeks and spend hundreds on more tests, I said NO WAY! Besides, the test may come back negative, like they do for some people. I'm not gonna feel like crap for six weeks so that a doctor can make a right or wrong decision. I made the right decision and I know how to live with it.

BamBam
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Montana
Self-diagnosed after many tests and no results to feel better
Gluten Free since 8-6-2005
Lactose free for many years
Casein Free since 02/14/06

#33 Guest_Leidenschaft_*

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Posted 21 February 2005 - 06:17 AM

Jennifer... how goes the battle? You still have a few weeks left if I remember correctly. Are you still eating gluten?
Hope your hubby is enjoying my beer! :D
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#34 jknnej

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Posted 21 February 2005 - 08:50 PM

Hi all,
Well, I've been bad..in a good way:( I haven't been eating gluten. I still have time, though. My doc says I need to start 3 weeks before...that's this week.
I don't know if I can do it. I still am having trouble with my tummy, even gluten-free.
I have nausea after eating and still have issues with IBS...having to go to the bathroom a lot. I just don't think I can add gluten on top of those problems. Plus, I still get dizzy and blurry vision.
I am going to call an allergist tomorrow and see about getting food allergy tests done to find out if I'm ingesting something that's still making me sick.
I want to do the endoscopy but just don't know if I can really add gluten on top of all of the stress at work right now. It's very, very busy and if I don't feel well I can't really do my job.
I feel depressed and lost. I thought going gluten-free was going to help so much, and it has in a lot of ways. But I am tired of this nausea and vision/dizziness issue. I'm not as bloated anymore, and I have more energy, but I still feel sick a lot.
Do some people just have to live with this forever? That's what I want to know. Maybe I just haven't been gluten-free long enough. I don't know. Any advice?
My husband has been trying all kinds of new beers...he loves any kind, really. The darker, the better. I'll have him drink them for you!!!
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#35 KaitiUSA

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Posted 22 February 2005 - 05:52 AM

Well for some people with celiac it takes a while to feel better. At first I thought I was doing good but I had stuff I didn't know slipping in. It took me 3 months to really feel a difference. For someone else I know it took her about a year. It varies so hang in there you will feel better. As long as you are on gluten though you probably won't be feeling any better. Good luck with everything :D
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#36 whimsygirl

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Posted 22 February 2005 - 05:07 PM

:( I'm right with you on the depression mark. I started eating gluten again Feb. 10 so that whatever test my docs decide to do the gluten is in my system. And hopefully to prove to my family that all the symptoms come back when I'm on this diet. I have to say that I am feeling like GARBAGE this food is making me soooo sick and I feel AWFUL!!! I hate eating every bite. I am trying to put an up twist on it and eat all the things that used to be my favorite's saying that it is my "Farewell to French Toast" or whatever else I'm eating. It sounds good and gives me a little more gumpsh to try to eat it. Of course I don't end up happy about eating it in the long run but it temporarily helps. I find myself having some downer moments when I think about putting up with all this and worrying that what if they don't find it even after all this? You know the fear that they won't biopsy a damaged section of intestine or the blood test comes out negative again? I'm sorry if I'm adding to your questions, I actually hesitated writing these questions for days, but you sounded just like me. For a moment I thought someone out there is going through the same thing right now and I had to reach out and say something to let you know that I am thinking some the same things you are. I have to actually ask if anyone has experienced just itching as a symptom, since I have gone back on gluten I have been itching like crazy just here and there almost like I'm breaking out in hives but without the whelts. I think that is something new. Well I hope you hang in there with the diet, I'm trying. <_< Let us now how it's going.
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#37 jknnej

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Posted 22 February 2005 - 07:52 PM

Hi Whimsy Girl,
Thanks for your post. It made me feel better and less alone! I still have until Saturday to decide whether I'm going to do this gluten challenge or not. I don't think I can do it. I'm already all messed up and it's taken my body a long time to adjust to the gluten-free diet. I don't think I can handle going backwards.
I need to go talk to my doctor again about alternatives. I just don't think I can do the biospy. It would be OK if you didn't have to eat gluten for 3 weeks beforehand. But man, I just can't do it....so I'll call him tomorrow and find out what he says.
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#38 Ruth UK

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Posted 23 February 2005 - 03:24 AM

Hi everyone,

I'm a newbie from the UK here. Was 'diagnosed' with celiac disease by my haematologist two weeks ago following more than 20 years of refractory iron deficiency anaemia. So far I've only had the blood tests and am waiting to have the biopsy - so have not gone gluten-free yet.

I am SO desparate to have the biopsy come out +ve that I have actually increased my intake of gluten containing foods - and for the first time in my life have begun to experience 'gastro' symptoms, so I do understand where you're coming from!

It is really HARD to be making yourself ill just so a test comes up +ve. (In my case I may have to wait up to 17 weeks before I even see a GE consultant, then probably another wait until the biopsy can be done - a VERY long wait but it's not costing me a penny thanks to the NHS.)

I myself need a +ve biopsy for 2 reasons - 1. If I don't have any damage to my villi why am I anaemic - 2. The NHS only officially diagnose celiac disease if a +ve biopsy is obtained - which means that if I decide to go gluten-free without it I have to pay full cost of all gluten-free food myself - which given the exorbitant cost of gluten-free foods plus the fact I am a fulltine mature student is a no-go (we can get some gluten-free foods on prescription in UK if celiac disease is diagnosed, thus saving a lot of money.)

Whimsygirl, you mentioned itching - over the past few months I have had really bad itching in various parts of my body - sometimes with a slight rash or a few spots, other times with no discernable marks whatsoever. The past few days since I've upped my gluten intake it has been really bad - I just seem to itch all over (also I am so much more fatigued - bad before, but now really extreme) - I can't see that there's any other factor than the gluten that's involved.

I guess I'm going to have to reduce my gluten intake as much as possible until I know when my biopsy is likely to be (I've read that just two slices of bread a day should be enough to ensure +ve biopsy if celiac disease is present) and then up it again. I just can't afford to feel so completely drained as I have an enormous amount of coursework to catch up with plus exams due soon (and a trip to USA in about 4 weeks!).

This post is becoming an essay so I'll just wish you all the best for now.

Ruth
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#39 KaitiUSA

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Posted 23 February 2005 - 05:29 AM

Ruth UK-You may want to look into DH. If you have DH it is caused by a gluten intolerance and is correlated with celiac disease. DH(Dermatitis Herpetiformis) is where you get itchy or severe blistery bumps on your skin. They can occur pretty much anywhere but commonly on the stomach,butt, knees,elbows, and scalp. Mine come and go. They only come when I have gluten and they will itch worse then poison ivy and then go away.They usually come on my elbows but I have got them on my knees, scalp, and lower stomach before. That may be correated to your gluten intake now. Hope everything goes well for you all :D
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#40 jknnej

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Posted 28 February 2005 - 04:52 PM

I've decided: I'm not going to have the test.
I am SO much healthier now than before and I cannot glutenize myself for 3 weeks. If I continue feeling better, than great.
If I get worse, well, it can't hurt to not eat wheat, now can it?
Seriously, can anyone think of a benefit to eating wheat?
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#41 whimsygirl

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Posted 28 February 2005 - 04:57 PM

I can feel the bonding over the airwaves :D . I too am SOOO tired and foggy minded, and let me tell the symptoms are getting worse!!!! :angry: I am on the gluten for the tests too but my Dr. doesn't know much about celiac disease and is learning as we go. She thinks I need to be on the gluten at least 4-6 weeks before doing any tests. I am very discouraged at this point and debating on just going gluten-free without the diagnosis. I understand your point for doing the test though it makes sense. I too was thinking that if I go ahead and try to push through the diagnosis that I might be able to use the Flexable spending account ( like insurance) option we have here to help with the expensive costs of the diet.

Well Good luck whatever you do and getting through it .....

And to Jenny I think you sounded like you have given up the gluten challenge and let me say I DON'T BLAME YOU !!! :P
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