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eleep

Questions About Testing/biopsy And Low-gluten Diet

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Hi all -- I'm new to this forum and the whole idea of celiac -- I stumbled across the disease when I was researching what appeared to be a bad reaction to holiday eating and, in particular, a white pasta experience that really threw me off.

I'm 36 and have had a lot of the celiac symptoms in somewhat manageable form for most of my life since college (oddly, right around the time I had mono -- which I've seen people discuss on the board). In my 20's my diet was pretty bad -- I was in rebellion from a Type I diabetic father (another indicator) and ate a whole lot of pasta and refined grains. I started to try to deal with the overwhelming brain fogginess and fatigue (which I thought might be depression -- and was also diagnosed as ADD at one point) by really overhauling the way I cared for my body sometime around my 29th birthday -- I made a lot of slow, gradual changes, but basically they amounted to becoming a dedicated yoga/weights/jogging person and really focusing on cutting processed, refined foods out of my diet -- I actually backed off on being a total vegetarian and started to bring some limited amounts of (mostly) fish, poultry and meat into my diet.

Among the changes I made were to really focus on getting most of my carbs from close-to-nature sources -- so for the last 2 1/2 years I've predominantly been getting most of them from beans, whole grains -- including whole wheat bread, that Barilla plus pasta (which is very lentil/flax seed heavy as well as wheat) things like quinoa and sweet potatoes and brown rice, winter squash, etc. However, I'm not a fanatic -- I do eat refined stuff occasionally, I do eat some sugar occasionally -- usually on special occasions or when I'm out at nice restaurants -- or when I really really have to try out the artisanal bread at the new bakery or someone brings an almond cake to a party or something.

Okay -- long intro, here's my question: has anyone else had this experience where their diet was pretty well-regulated and semi-gluten-limited yet they were still able to be diagnosed as celiac? Could the relative mildness of my symptoms (especially the GI stuff -- I have D. or D. like BMs most days of the week, but they're really not a disturbance and it never occured to me that they weren't far from normal) have something to do with the fact that my diet _isn't_ really gluten-heavy?

I have an appointment to see a gastroenterologist next week -- I'm hoping he'll at least be able to definitively make a blood/biopsy diagnosis, but I'm a little concerned that my "healthy" habits over the last few years might make a diagnosis hard -- how paradoxical -- anyone got any experience/advice? If it is celiac, I'd really like to cut out the gluten, but I want a hard diagnosis before making this decision.

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Short answer: You cannot have a "hard diagnosis". The total gluten-free diet is the best test known.

It is often said that a gluten-free diet can make test results show a false negative. In your case, if the gluten has been there even in small amounts, then the immune response should still be detectable. That's my opinion based on all that I've read thus far. However, even those who get a negative on test results see great improvement from a total gluten-free diet anyway.

IMHO, try the diet. Nothing to lose, and so very much to gain. Many feel reluctant to "give up" the foods they have grown to enjoy. However, I know from experience how much better it feels to finally get relief. Try Tinkyada pasta - every bit as good as the wheat stuff, if not better. I'm sure others will have recommendations as well.

I've learned a great deal from this site, so I've no doubt you will too. Hope you feel better soon.

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Hi eleep--It looks to me like you are still eating a fair amount of gluten--not as much as you used to, for sure, but it's still in your diet. If a diagnosis is important to you, you could go ahead and have the blood panel done and then make the decision as to whether or not you want to do the biopsy. It's quite common for Celiac to be triggered by an illness such as Mono. I feel surgery is what triggered mine. It's quite possible that your brain fog, fatigue, depression and digestive issues are due to gluten intolerance. Since you're going to the gastro. next week, you obviously want to stay on the gluten for now. No matter what the tests say, once you have them, you can try going 100% gluten-free and see if your symptoms improve. (of course if you are Celiac, you must do so). Good luck at the Dr--let us know how you do :)

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hhmm, a lot going on here.

you will find most people on this board say if a gluten-free diet makes you feel better, just stay on it. and if it's celiac disease, a low-gluten diet is still harmful. although you may feel you're getting away with eating just a little cuz you don't get symptoms, it is still affecting the villi in your digestive track. it's kind of like getting bruised and not realizing it til the next day when you see the black & blue......no symptoms, but damage was still done.

my story- gluten free for over 6 years, having never been technically dx. Then gastro told me during colonoscopy there was no reason to be gluten-free. But, after 6 years gluten-free maybe the damage was repaired??? But, I believed him and ate gluten. several months later, very ill again, and went back to gluten-free. I am just now waiting for results of celiac disease panel and gene test. It's too late for me to have a biopsy. Some say the tests are a waste of time at this point.....if the diet works, just stay on it. But, like you, I have a need to know. I don't know what the tests will come back showing, and either way I plan to remain gluten-free, but it would be nice to have some kind of indication.

keep us posted after you see the gastro.

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Thanks everyone! Yeah -- it's been difficult to keep eating as I usually do lately without feeling somehow that I'm really poisoning myself, but having grown up with a Type I diabetic father, I know how much of a commitment making really definitive dietary changes can be. I can say that -- now that I'm keeping a food diary and logging GI symptoms -- I can detect some correlations between gluten consumption and celiac-type symptoms -- particularly the GI stuff and the fatigue (which I've been battling and concealing for years).

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