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Posted 2/5/2013 12:24 PM (GMT 0)

Hi everyone,

Just want to share this.

After a normal endoscopy in December I gave up wheat and dairy just before Christmas (I won't go into detail as it's all in a previous post I did). I was feeling a lot better but not 100% but then at my follow-up appointment the Gastro doc said he thought from everything I said that it was highly likely that it was Celiac Disease (such a relief to be heard!).

I've now got to do a stool sample, have some blood tests and have a colonoscopy in 4 weeks. I also have to eat 2 slices of bread every day for 4 weeks before I get the blood tests done; I'm on day 4 and I feel completely yuk! Not as ill as I got before but I'd say getting a bit worse each day.

I know I have to do this and will do my absolute best to carry on at work etc during this time but what I don't understand is, if it takes so long to heal after going gluten free and I've only been gluten free for about a month, why do I need to eat bread for a month before the tests? Wouldn't I still have the effects going on inside at this point anyway?

Sorry if that sounds naive but all this is pretty new to me.

By the way - what a great forum!

All the best everyone :-)

Posted 2/5/2013 7:14 PM (GMT 0)
I'm no expert as I just started eliminating wheat and gluten but I was told you can get a negative even when you are intolerant but especially if you have not had any right before. Sounds like a great doc to me.
Posted 2/5/2013 11:00 PM (GMT 0)
Thanks for your reply. Yes I believe he is a good doc and after 52 years of bad health and being labelled hypochondriac, neurotic etc., etc., is is so great to meet someone like him. I feel very lucky and, although this may sound odd, quite excited to see what all the testing brings turn
Posted 2/6/2013 9:50 AM (GMT 0)
The reason they want your colon seriously messed up is because All the test are inaccurate and like a "needle in a haystack" kind of thing. For the colon test they take like 3 samples out of (how long is your upper colon)? Its like 3-5 feet i think, but you see the problem right? Same thing with the stool test, they are just hoping enough bacteria hangs on(that's as not gross as i can make it) in order to get a positive test and of course that's our insurance, no test, no treatment. And please don't worry about asking questions here, that is what this Forum is for. I didn't know anything about half of the things in my diagnosis list when i started logging on here and I still have no medical input as far as my Celiac or my EBV, everything i know about them I learned here and searched the sights they provide. :-) I think i would have lost my mind by now without Healing Well and all of you people, so ask away you may have a question i don't know about. And good luck with your needle smilewinkgrin
Posted 2/6/2013 12:12 PM (GMT 0)

Thankyou :-)

I'm now on here in my lunch break because I'm having such a bad day and trying to hang in there at work.

My stomach has turned to water and I feel as though I'm going to be sick at any minute - on top of that I'm dizzy and exhausted.

I work for a great company and my boss is one in a million but I'm on a temporary contract and so am trying to protect my place here - so hard when all I want to do is curl up in bed!

Sorry to come on and moan but it's either that or burst into tears today - I guess many of you will know exactly the kind of thing I'm going through!
Thanks for reading my grumbling - you help keep me sane! cry

Posted 2/7/2013 7:33 PM (GMT 0)
To clarify, gluten intolerance should be taken just as seriously as celiac, and the inflammation can be caused in a similar fashion as celiac.

It takes a long time for your body to start healing after ridding the body from gluten. I had unexplainable joint pain and other pains in my gut when I was on gluten.

There is a product out there by AST enzymes called "gluten relief" that aids in accidental consumption of gluten by supplying the body with a specific enzyme that would otherwise help the body break down the protein.

I slipped last night and had breaded wings and after eating I took a "gluten relief enzyme" and I believe it may have helped because I seem to be doing okay? Unlike previous events. :/ You can request a free sample pack on their facebook page.

It's trial and error, but don't let anyone give you the final say on your body unless you absolutely feel adjusted to doing so.

Just because there is no inflammation or positive markers on a test doesn't mean there is no intolerance.

I took three different types of tests (standard celiac blood test, stool testing from private lab and saliva test measuring gliadin protein levels -which came back positive- so my doctor and I are going with that positive marker.

It will get better. :)
Posted 2/9/2013 2:01 PM (GMT 0)
First week of the gluten eating done! It's been difficult and I've nearly given up a few times but hanging in there so far. The doc rang me from the hospital yesterday and talked me through why I'm doing it and the need to carry on; how good is that? What a great doctor!
Posted 6/13/2013 2:54 AM (GMT 0)
Hi! I'm curious how your test came out. My doc is fine with me not getting re-tested. I give you so much credit for eating the gluten again. I honestly think I would refuse. Though I'm having a brief fantasy about some of the things I would eat if absolutely forced to. From my point of view, whether I have Celiac or not, I'm going to be gluten free so why do I need to know if I actually have Celiac? I already have a crohns diagnosis and get regular screenings for that so I don't see the point. If yours was beneficial I'd reconsider my stance.
Posted 6/25/2013 2:07 PM (GMT 0)
Hi,

Just replied to a similar thread.

The eating Gluten again diet really messes with your head. "So Gluten makes me ill and your asking me to eat it until my gastroscopy??". Does not seem right.

It does get easier once this stage is over, just hang in there.

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