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Nen

Is It Easy To Make The Connection?

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I would think that if one has celiac or a gluten problem, wouldn't the symptoms come soon after ingesting the offending food? I suppose what I am getting at is, after years of eating gluten does the body just become basically "inflamed" to the point where it would be difficult to pin down gluten as a problem since you pretty much feel a base-line crappyness most of the time anyways?

I do feel cruddy on and off with health issues that I think I've just gotten so used to (especially in this past year with the lovely addition of headaches). I would say in this past year I have gone only one full week being able to truthfully say that I felt great. I will deliberately have days where I try to eat a lot of gluten containing foods (bread, pizza crust, cookies, more bread, etc) and I will feel just fine the rest of that day or even the next day, but not for long. So wouldn't all that gluten just stab me and make me keel over if I have a problem with gluten? Or is it more just an ongoing general health problems that are tougher to actually pin down because the body is so worn down anyways that there aren't any dramatic flareups?

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Nen, some people can see a relationship (pre-diagnosis) between eating and feeling poor. Others, like me, don't a connection: I think most people are in this catagory. Yes, you are right that the body just becomes inflammed and even if it is a non-gluten day, you still feel bad from one or more of the following: Systemic damage to intestines, nerves, brain, joints etc.; the gluten doesn't leave the body in one day -takes 2-3 weeks perhaps; and lastly, low levels of vital nutrients, vitamins and even things like electrolytes etc.

I see from your signature that you first joined this forum in 2010. Have you ever given gluten-free a true 2-3 month trial to see if it helps?

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Nen, some people can see a relationship (pre-diagnosis) between eating and feeling poor. Others, like me, don't a connection: I think most people are in this catagory. Yes, you are right that the body just becomes inflammed and even if it is a non-gluten day, you still feel bad from one or more of the following: Systemic damage to intestines, nerves, brain, joints etc.; the gluten doesn't leave the body in one day -takes 2-3 weeks perhaps; and lastly, low levels of vital nutrients, vitamins and even things like electrolytes etc.

I see from your signature that you first joined this forum in 2010. Have you ever given gluten-free a true 2-3 month trial to see if it helps?

Yeah I have been a member for awhile. I do lurk here from time to time. The thing is I'm not sure if I should just go with the gluten-free diet first, or get the nerve up to try to get tested first, which means convincing my doc. The thing is sometimes my symptoms seem to lighten up so much that they are just about not there (for very brief times like a few days maybe) and I think to myself "oh you're just being silly see? Now you are feeling ok so you're fine", then another round comes again of feeling cruddy that I have to push through. I still have worked through all this never taking a sick day, though I've dragged myself through many times. I keep going back and forth with myself in my head alternating between "really just get friggin tested!" and "don't be dramatic you're fine! Its probably not anything to do with gluten". Ugh.

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Yeah I have been a member for awhile. I do lurk here from time to time. The thing is I'm not sure if I should just go with the gluten-free diet first, or get the nerve up to try to get tested first, which means convincing my doc. The thing is sometimes my symptoms seem to lighten up so much that they are just about not there (for very brief times like a few days maybe) and I think to myself "oh you're just being silly see? Now you are feeling ok so you're fine", then another round comes again of feeling cruddy that I have to push through. I still have worked through all this never taking a sick day, though I've dragged myself through many times. I keep going back and forth with myself in my head alternating between "really just get friggin tested!" and "don't be dramatic you're fine! Its probably not anything to do with gluten". Ugh.

Well, I don't suggest lying to your doc, but you could try not minimizing your symptoms. Tell him/her that you feel bad multiple times a day, often feel like missing work but struggle through anyway because you don't want to let your employer down etc. You might have to be insistent. I was undiagnosed for way too long (30+ years)and always told my docs how I felt and was told variations of "you're a hypocondriac" "you just have a sensitive stomach" "you have too much stress in your life" or my personal favorite "you would have no symptoms if you just lost weight." My point is, if they don't agree to test you, put your foot down and if they still won't, then go gluten-free anyway and see if it helps. Good luck!

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I think in your situation testing is crucial. Then if you have celiac you have all the proof you need to go strictly gluten free once and for all. When I was told I had celiac I didn't believe it. The only reason I found out was because my sister is gluten intolerant and I got tested. Talk about shock because I had no GI symptoms or anything I could relate to eating gluten whatsoever. When I went on my gluten challenge after being gluten free for four months I frankly enjoyed it because nothing happened to me at all. NOTHING. But I did not know at that time about the serious damage that was happening inside and that is what counts. After my biopsy there was no question (I didn't believe my bloodwork so my doctor made me get a biopsy to convince me!) and I have been strictly gluten free ever since. How do I keep motivated? I think of my future. I want to live a long and healthy life with my husband whom I adore. I don't want to develop celiac-related cancers or other illnesses.

So, if you need that extra motivation to take this seriously, get tested but know that unfortunately could show false negatives so the only answer is going gluten free.

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bingo. Baseline crappiness hit it on the head for me. In the beginning (as a child, I reacted fairly quickly..but doctors said it was just wheat and to remove wheat from my diet. Never mentioned gluten. As an adult, the immediate reactions were gone and I just randomly puked, had diarrhea and felt majorly fatigued all the time. Having been gluten-free for some time, now the immeciate reactions are back.

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Thank you for the replies. I probably should just bite the bullet and get tested. That way I can know for (at least somewhat) sure or at least have something more to go on.

Are there percentages for the accuracy of the blood test? What I mean is is the percentage of false negatives high or is it low enough that the blood test can be a somewhat reliable barometer? Of course there are those who the blood test was negative, but the biopsy showed trouble. At the very least the blood test would be a start.

ETA: One other thing, I do have brief periods of feeling alright, like for a few days I'll realize my head isn't hardly hurting and I feel good, but it always comes right back again with one or a combination of any of these symptoms: (head pain, sinus problems, sore throat/glands, intestine issues, tired weak feeling, sore muscle/joints, tingling novicane feeling in various places, off balance spaced out feeling). These brief periods of feeling ok, can that still happen with celiac undiagnosed?

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Thank you for the replies. I probably should just bite the bullet and get tested. That way I can know for (at least somewhat) sure or at least have something more to go on.

Are there percentages for the accuracy of the blood test? What I mean is is the percentage of false negatives high or is it low enough that the blood test can be a somewhat reliable barometer? Of course there are those who the blood test was negative, but the biopsy showed trouble. At the very least the blood test would be a start.

ETA: One other thing, I do have brief periods of feeling alright, like for a few days I'll realize my head isn't hardly hurting and I feel good, but it always comes right back again with one or a combination of any of these symptoms: (head pain, sinus problems, sore throat/glands, intestine issues, tired weak feeling, sore muscle/joints, tingling novicane feeling in various places, off balance spaced out feeling). These brief periods of feeling ok, can that still happen with celiac undiagnosed?

I suspected celiac for a couple of years before I finally got tested. I'm one of those people who avoids doctors and believes in "toughing it out"... I now know that wasn't too smart on my part.

Anyway, I've had it my whole life and I too had periods where I felt worse or better. My symptoms were never debilitating. I played varsity sports (with stomach and head aches), worked 10+hours a day (who wouldn't feel tired right?), and had three kids (no wonder my back is bad and I get sore)... I could explain away all my symptoms because they were not always present, but while I did that I developed other autoimmune diseases, and did permanent injury to my body...

Bite the Bullet as soon as you can.

And yes, something like 25% of celiac's blood tests come up negative. That's why they often do the biopsy (but that can miss damaged areas too). You might want to get vitamin K, iron, calcium, folate and B12 levels checked too. Many celiac are low in those.

Good luck. :)

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I suspected celiac for a couple of years before I finally got tested. I'm one of those people who avoids doctors and believes in "toughing it out"... I now know that wasn't too smart on my part.

Anyway, I've had it my whole life and I too had periods where I felt worse or better. My symptoms were never debilitating. I played varsity sports (with stomach and head aches), worked 10+hours a day (who wouldn't feel tired right?), and had three kids (no wonder my back is bad and I get sore)... I could explain away all my symptoms because they were not always present, but while I did that I developed other autoimmune diseases, and did permanent injury to my body...

Bite the Bullet as soon as you can.

And yes, something like 25% of celiac's blood tests come up negative. That's why they often do the biopsy (but that can miss damaged areas too). You might want to get vitamin K, iron, calcium, folate and B12 levels checked too. Many celiac are low in those.

Good luck. :)

Thanks for the reply. That is the thing with me too, the symptoms are such that I can attempt to "reason them away" with such thoughts like "well of course I'm tired I work all day!" and "well I can still do stuff its not like I'm totally bedridden or anything I can drag myself through ok". Still though like you say this can just lead to a continuous putting-off until it really does get too late and the body is damaged.

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Do it NOW, Nen - you've fudged around long enough :) And when you're nutrient testing don't forget Vitamin D.

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I never saw the connection, because I didn't have typical symptoms. I had things like nose and mouth ulcers all the time, constant middle ear infections and constant chest infections, severe GERD etc

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Made the call to the docs today to find out the cost of testing, and waiting for them to get back to me! :)

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Good on ya!

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Are there percentages for the accuracy of the blood test? What I mean is is the percentage of false negatives high or is it low enough that the blood test can be a somewhat reliable barometer? Of course there are those who the blood test was negative, but the biopsy showed trouble. At the very least the blood test would be a start.

ETA: One other thing, I do have brief periods of feeling alright, like for a few days I'll realize my head isn't hardly hurting and I feel good, but it always comes right back again with one or a combination of any of these symptoms: (head pain, sinus problems, sore throat/glands, intestine issues, tired weak feeling, sore muscle/joints, tingling novicane feeling in various places, off balance spaced out feeling). These brief periods of feeling ok, can that still happen with celiac undiagnosed?

If the blood test is postiive, it's unlikely to be wrong - the test has very few false positives. However, if your blood test is negative the reverse is not true. There are often false negatives.

Yes, celiac can cause periods of bad followed by ok or even good. It is funny that way -not sure if anyone knows why.

Hope they give you the test without any drama.

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Eh well a little more road-blocks put in the way. I guess our doc no longer draws blood in his office anymore at all so we would have to get ahold of a lab company and figure it out for the cost.

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Looks like it would be a direct testing through LabCorp, and the panel tests for Deamidated gliadin IgA; tissue transglutaminase IgA; serum IgA quantitation. Does this sound good? I never know what all that means. Looks like it costs about $140 to get.

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There are home test available also. They are relitively cheap and as accurate as a lab test if done properly. The one i'm waiting on claims 93% accuracy. I'm going that route instead of thru a doctor. If I get a negative result I'm gonna leave it at that. If I get a positive result I will let my PCP know.

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There are home test available also. They are relitively cheap and as accurate as a lab test if done properly. The one i'm waiting on claims 93% accuracy. I'm going that route instead of thru a doctor. If I get a negative result I'm gonna leave it at that. If I get a positive result I will let my PCP know.

I think the 93% accuracy refers to the fact that it is 93% specific to celiac... The other positive 7% have something else. There is still a 30% chance of a false negative like the lab tests; there's just not much of a chance of a false positive.

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