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A Real Pain In The Arse


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10 replies to this topic

#1 Yankee

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Posted 31 August 2004 - 04:00 AM

I am having an endoscopy on Sept 13th to test for Celiacs. They also have done blood work as well (but no results yet).
My symptoms are similair to some of what many of you have written, but they are also very different as well.
I truly hope I don't have Celiacs as I just can't see the quality of life for me being the same without eating wheat products. If it ain't meat, then it is wheat! And I hate vegetables.
Since my stomach has been bothering me fairly constatntly now, I am now wanting to just try to reduce the gluten in my diet now. But, the problem is that i am being tested on the 13th, so should I not stop the gluten as it will screw up my test?
This disease seems like a major, major pain in the arse as almost every food as gluten in it! Also, I am 40, so how can you suddenly develop this overnight?
I am getting really depressed about the prospect of having to eliminate gluten from my diet...it seems worse than a diabetic.
I guess I am venting a bit, and most of these doctors really stink, so I have zero trust level in them as well. The doctors I have ssen give you about 5 seconds to talk and they are out the door (literally)! The next doctor who does that to me, I am gonna raise Cain.

Regards,
Yankee
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#2 lovegrov

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Posted 31 August 2004 - 05:44 AM

You must keep eating gluten until the tests are over.

The diet can be a real pain but it gets much easier as time goes along. I'll take this over diabetes any day because diabetes can have some awful side effects, including loss of vision, amputation and early death. And I'll certainly take celiac over the cancer they THOUGHT I had.

A lot of stuff does have gluten in it but when you start looking you realize an awful lot doesn't have it. You can eat a lot more things than you think.

As for suddenly developing this at age 40 -- it happens to a lot of people. I was 46, although I can also look back at my childhood and see I had minor symptoms then. My father was diagnosed at age 70.

richard
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#3 tarnalberry

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Posted 31 August 2004 - 08:22 AM

Yes, definitely keep eating lots of gluten before your test!

The diet really isn't that bad. Yes, it's hard to start, but once you find foods that you do like that don't have wheat, it will be much easier. It can be hard, it can take time, and it can mean you've got to do a fair amount of cooking on your own. But you can make a lot of very tasty foods, and make them to meet your specific tastes. (Heck, I maintain it's not that hard, and I'm going gluten-free/CF now!)

The diabetic _diet_ is probably a bit easier, but the consequences of diabetes, even with following the diet, are far worse. The low-oxalate diet is harder than the gluten-free diet (for many people), a true corn-allergy caused corn-free diet is REALLY hard because it's in everything, and yada yada... . You know what I'm getting at. ;-)

But you've got a test to get through first, so I'd encourage you to just wait until then - so you don't stress yourself out about the unknown.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#4 celiac3270

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Posted 31 August 2004 - 08:51 AM

No way, Yankee! I'm having an endo. Sept. 13, also.......although mine is to confirm that the diet is working for me and to check for ulcers........anyway, thought that was funny

I'm not so sure if the diabetic diet is that much easier.........sure, you can eat regular foods, but you constantly have to modify what you eat to deal with sugar levels (right?) and we can just eat whatever is gluten-free for the rest of our lives. Additionally, diabetes can have debilitating effects in the end even if you're conscious of your sugar levels all the time........once your off gluten, you're fine and don't need to worry about developing complications because of your celiac disease that much (as long as you start the diet early). Anyway, diebetics constantly have to prick themselves and monitor everything--once you get the hang of the gluten-free diet, it becomes second nature; something you don't need to think too hard about.

Finally, I hate vegetables, too! :D and I'm doing fine with food options.........fruits are a good alternative and I eat a lot........there are meats, potatoes, regular stuff, but there are some quality gluten-free specialty foods.........brownies, pancakes, english muffins, bagels......you just need to ask people what they've tried and liked and do a bit of experimenting on your own.
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#5 Yankee

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Posted 31 August 2004 - 02:03 PM

Would it be okay if I tried a gluten free diet for just a week to relieve my symptoms? With my test being Sept 13th, when should I go back to eating my normal gluten full diet before the test? Is on week okay? All I am trying to do is reduce my suffering until the test.

Thanks to each of you for your replies, it is REALLY, TRULy helping me cope with the prospects of having this disease.

Regards,
Yankee
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#6 Guest_Nukapai_*

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Posted 31 August 2004 - 02:25 PM

Would it be okay if I tried a gluten free diet for just a week to relieve my symptoms? With my test being Sept 13th, when should I go back to eating my normal gluten full diet before the test? Is on week okay? All I am trying to do is reduce my suffering until the test.

Thanks to each of you for your replies, it is REALLY, TRULy helping me cope with the prospects of having this disease.

Regards,
Yankee

Hi, I'm in a similar situation with you - waiting for my test, but feeling so unwell that I don't know if I can eat much of anything that could cause this to continue... of course until I have the test, I don't even know whether gluten is the culprit, so I guess there is no choice.

I've had no gluten for 3 days, then accidentally re-introduced it yesterday, sick as a dog today, not sure what I should be eating tomorrow and Thursday - test on Friday.

Hang in there!
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#7 tarnalberry

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Posted 31 August 2004 - 02:34 PM

For the most accurate results, you really don't want to go off of it before your test. Then again, if you're that confident it's the gluten, maybe you don't need to blood test at all!

The thing is... will one week off and then one week on mess up your results? The answer is ... it depends entirely on YOUR digestive system as it is RIGHT NOW. Maybe it won't. Maybe it will. If it does, you'll have to just keep eating gluten for three months and try another test if you're relying on an objective blood test.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#8 celiac3270

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Posted 31 August 2004 - 02:58 PM

Don't go back......you're supposed to have at least about a month on gluten........eat at least 1-2 meals a day that contain gluten.....it's for the benefit of the test, although eating gluten again is a test in itself..........if you feel good without gluten, I think that's enough to keep you on the diet no matter what any doctor says.
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#9 Yankee

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Posted 31 August 2004 - 03:05 PM

Nukapai and others,

The big question is then "How long does it take to damage your cilli in your intestines?" and "How long does it take to detox yourself of gluten where you don't show any sign sof damage?" and "How long does it take on a gluten free diet for your inetstines to heal?"
Maybe there is no standard time frame and it may vary for each person?
I guess my pain sounds a bit more tolerable than yours and I feel really bad for those that have to do this awaiting their test and are in more distress than myself.
I guess we just need to eat some gluten each day till the test and suffer thru so we can get a diagnosis.

Regards,
Yankee
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#10 celiac3270

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Posted 31 August 2004 - 03:17 PM

It definitely varies for each person, but this is generally what it is:

Doctors have varying opinions on how long it takes for you to get yourself "glutened" up for a test........most usually say 1-3 months......at least one month, though, unless you do a really good job at eating tons of gluten......oh, I should mention, this is 1-3 months eating two gluten-filled meals a day.

Symptoms have no effect on detoxifying yourself of gluten......I was.......maybe three months off gluten when my GI did a test of my gluten levels (too early)......they went down, but not too much, as I was only two months gluten-free......eating gluten-free for short periods of time might still get you a diagnosis, but if you would've been a weak positive and you didn't consume enough gluten, you might get an incorrect and negative diagnosis.

When it comes to healing after gluten, it depends on how long you were on gluten while you had celiac disease. For example, if you were to have been on a gluten-free diet and then you ate a bagel now, it would hurt and you'd get symptoms and it'd do damage, but........within a few weeks, your body should probably have healed. That doesn't mean that you should do this. Anyway, if you had been on gluten for years, not knowing you had celiac disease, it would take much longer. I think I have had celiac disease for.....3-6 years......not sure exactly, but I didn't get a diagnosis until six months ago......I'm 13 1/2 now, so 6 years would be nearly half my life with symptoms. There's no standard time frame, but the longer you had gluten, the longer it will likely take to heal. If you've had an extended period of time with gluten, your intestines might start to heal on the surface within a few weeks, I believe, but it could take many months to completely heal. As you said, it's different with each person.

You're right on your last point, too Yankee....just try to keep going with the gluten cause it should be worth it if you can get a diagnosis.......even if you're tested negative, you might know you have it, but the doctor's only going to go on medical evidence........so if you can get a positive test, he or she can help you recover.......

Anyway, good luck.....with the gluten and the endoscopy....tell me when you find out what time it is.....I'm not sure when mine is, but will let you know or post it here....I'll be thinking of you when I go in for my scope....... :D

-celiac3270
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#11 ryeanddiet

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Posted 03 September 2004 - 05:41 AM

Hi Yankee,
I agree with celiac3270. I was really sick and had positive blood results for antibodies so I went gluten free. The symptoms started to go away immediately but it took 5 months before eveything was cleared up (normal bathroom habits, no migraines or nausea,no cankers, no acid reflux, no psoraisis, increasing iron and b12 level).
I finally got into the GI 9 months later (hard to get an appt to a specialist quickly in Canada) and they are insisting on the biopsy to prove it's celiac. :blink:
(thanks to celiac3270 who suggested enterolab but being a Canuck, I don't have the option)
I'm now back on gluten and it's rough. I'm trying to have gluten at least 2 meals a day but I find I become incapacitated if I eat too much at one meal or have an empty stomach and eat a primarly gluten meal (i.e. bagel and fruit, sandwich).
I couldn't get agreement from GIs on how long you had to be back on gluten for it to show up but consensus from the two who did have a confident answer was 3-6 months.
I've opted for the three months. I'm one month in and have half of all my symptoms back.
Try constant but smaller amounts of gluten...i.e. the odd cracker or cookie throughout the day but do stay on it..if you're like me, you'll feel crappy but not incapacitated.
good luck!
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