Just Confused!

[pir8ped]

Hi,

I hope someone can clarify things for me - the doctors don't seem able to.

I went to my doctor originally due to symptoms of exhaustion. After a number of tests for various things, I had 3 blood tests for celiac, and they were all positive. The doctor told me I was 98% likely to be celiac, that I didn't need an entersoscopy, and that I should just go on a gluten-free diet. I did, and felt a lot better, like 10 years younger, no longer having to sleep my afternoons away, much more energy ( and enthusiasm - the exhaustion spells had been accompanied by brief depression which lasted a few hours ).

Two weeks later, I had a letter from the hospital asking me to come in for an entersoscopy. I hadn't been told this was being scheduled for me. The hospital asked that I eat a normal diet for 6 weeks. After 4 weeks, I told them I was surely sick enough ( the tiredness and depression was back ), and they went ahead with the entersoscopy. They took 6 samples, and found no problem at all. When they told me I didn't have celiac, I celebrated with 3 sandwich rolls for lunch. It made me tired, and I slept for the afternoon, but I wasn't as exhausted as I had been before my gluten-free diet, when sometimes I felt as if I was wearing a lead suit.

Since then I have been trying to figure out what is going on. I am still on a gluten-free diet, but I have asked my wife to sneak some wheat into a meal here and there, to see how I react. She has done so once so far, adding a tablespoon full of flour to a curry. I didn't notice.

Maybe I just have wheat intolerance? But I am not sure what the difference is - getting an immune system response, without the damage to the gut that celiacs get? Why didn't I respond to a spoonful of flour in my dinner? Could it be that after a couple of months gluten free, that I am less intolerant of gluten? Could it be that if I generally avoid gluten, and so keep my wheat antibody levels down, that I can occassionally indulge in such low gluten content food as a couple of beers now and again? That would be nice!

Anyway, the hospital has scheduled me for an examination at the other end ( the doctor never mentioned this either! ) - I don't know what they are looking for, but since I am 50, I guess an examination might be useful anyway....

If anyone can clarify what might be going on between me and wheat ( do we have a relationship at all?? - maybe I am in the 2% that gets positive blood tests, but is not celiac ), I would be very grateful.

[ladyx]

I and my children have little or no damage to our intestines either but our blood tests were all positive... in the entersoscopy they take 3-4 small biopsies from different spots in your intestine...if they happen to get 3 or 4 spots that are healthy then your biopsey will come back normal...my son's pediatic gi was very careful to find spots that looked damaged to take a biopsy from because they were hard to find. I think you proabably do have celiac but your body may just react differently to gluten...if your blood says don't eat gluten that would be good enough for me. (an example of peoples bodies reacting differently to gluten...my son who throws up at almost any sign of gluten ate some wheat free oat cookies that promised on the box no cross contamination and he threw up for two days....then he snuck some of his dad's cinnimon rolls made with white bleached flour and barely got sick...probably cause most of the gluten is in the whole wheat flours) My point is your body tells you your being posioned in different ways...and some peoples bodies can take more torture...just like those guys in the mine...they all got sick and died...except one lived even though he should have died...he was posioned just like they were but his body managed to take care of those posions a little better then the other peoples...but he still has a lot of problems...just not the same as theres (ie death) here is another website that I found they do tests to find out what all your toxic foods are so maybe this will help Open Original Shared Link

[Laura]

Hmmm...positive blood tests plus symptoms says stay away from gluten to me! Your intestine just might not be so grievously damaged yet that their biopsies picked up damaged spots.

As for the tablespoon of flour, people's sensitivity varies a lot. Not having an immediate symptom doesn't mean it isn't doing damage, though. You just can't be sure. When I first went gluten-free, I didn't have immediate symptoms if I cheated or screwed up. I've actually gotten more sensitive over time. But the big thing, for me, is that it's worth it not eating gluten because I feel so much better.

(And if you look, there's gluten-free beer. And almost anything else you could want, though you have to work a little harder to find and obtain it.)

[pir8ped]

Thanks for the replies.

I will stay gluten-free! I just wonder what the point of the endoscopy was - if I have positive blood tests plus the symptoms, why bother with the physical examination - whether there was damge visible or not, it looks like I need to be on a gluten-free diet anyway.

I get the impression that some people who have lived with it for years know more about it than my GP. Sharing your experience has been very helpful. Thank you.

[tiffjake]

Thanks for the replies.

I will stay gluten-free! I just wonder what the point of the endoscopy was - if I have positive blood tests plus the symptoms, why bother with the physical examination - whether there was damge visible or not, it looks like I need to be on a gluten-free diet anyway.

I get the impression that some people who have lived with it for years know more about it than my GP. Sharing your experience has been very helpful. Thank you.

I have read that you can go a long time without having damage in the intestines (like, 20 years or something, I can't remember the details though). But that when it hits you, it is REALLY bad. Maybe you are like that.....But I never had the endoscopy because I didn't want to eat gluten for weeks just to do the test. I had "inconclusive" blood work from my doc, but positive tests from Lame Advertisement and from EnteroLab. I have been gluten-free based on that. You need to follow your heart (and your stomach!) and go gluten-free if that is what feels right. I wish you better health!