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lemonade

My Blood Test Results.

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Today I got my blood test results back from the doctor today and they all came back negative. My doctor seems to beleive that because they came back negative, i dont have celiac. Prior to the blood test I did consume gluten but in the lowest sources, mainly from oats which although can create a reaction in people with celiac disease, the reaction is less severe than that of wheat consumption. It is also said that some ppl dont need to avoid oats, though it is true it would be safer to avoid them. Anyways, i have questions....

- Due to the main gluten in my diet coming from oats and oatbran, could this be the reason that i didnt have many antibodies if any???? and also about a month before the blood test my food intake was very low, so when i did consume these gluten foods i would mabey only consume a few tablespoons. Could this be a false negative???

-What is the difference between a gluten intolerance and celiac disease?

- Is it possible for the biopsy to come back negative, yet someone really has celiac disease?

- i have been off gluten for 1 week now if I have the biopsy this week, will my vili still show signs of celiac disease?

- has anyone hear been in the same position as me?

- has anyone hear had both negative biopsy and negative blood test, yet still has celiac disease? is this even possible???

- Please share your stories with me.

THANKS

Lemonade

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I had been gluten free for two months when I had my testing done. My IGg was elevated. I think mine was around 66 and normal was below 19. THis is the least specific for celiac. My Ttg(i think) was 16 and anything above 19 was considered a sign of celiac. Anyway, my doctor did say that this number is normally zero in people that don't have celiac and he called my tests "borderline" and wanted to do the biopsy. I just haven't done it, because wheat makes me sick. It is tough at times, because when I don't feel well, I wonder if I have had gluten and when I do feel well for about two months, I start thinking maybe I don't really have it. My son does have celiac and it has really helped me being on the diet. In my mind I know I have it, but it is frustrating not having conclusive results. There are many people here though that have just changed to eating gluten free based on a positive dietery response. That is what I have done. I enjoy not being bloated, not having chronic yeast infections, was losing weight, had back and forth C and D and abdominal pain, oh and nausea. I was never hungry. I have improved a ton!! It is well worth the effort if you really aren't feeling well.

I would have the biopsy while you are still consuming wheat if it will make you feel better, but don't expect that to give you an accurate answer necessarily. It can only rule celiac "in", not out. Especially since you haven't been consuming much wheat.

What are your symptoms, if you don't mind sharing?

GOod luck,

Monica

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I had been gluten free for two months when I had my testing done. My IGg was elevated. I think mine was around 66 and normal was below 19. THis is the least specific for celiac. My Ttg(i think) was 16 and anything above 19 was considered a sign of celiac. Anyway, my doctor did say that this number is normally zero in people that don't have celiac and he called my tests "borderline" and wanted to do the biopsy. I just haven't done it, because wheat makes me sick. It is tough at times, because when I don't feel well, I wonder if I have had gluten and when I do feel well for about two months, I start thinking maybe I don't really have it. My son does have celiac and it has really helped me being on the diet. In my mind I know I have it, but it is frustrating not having conclusive results. There are many people here though that have just changed to eating gluten free based on a positive dietery response. That is what I have done. I enjoy not being bloated, not having chronic yeast infections, was losing weight, had back and forth C and D and abdominal pain, oh and nausea. I was never hungry. I have improved a ton!! It is well worth the effort if you really aren't feeling well.

I would have the biopsy while you are still consuming wheat if it will make you feel better, but don't expect that to give you an accurate answer necessarily. It can only rule celiac "in", not out. Especially since you haven't been consuming much wheat.

What are your symptoms, if you don't mind sharing?

GOod luck,

Monica

Monica,

I really appreciate your response. A few questions: I am confused about whether or not you were diagnosed for celiac disease by the blood test, or were your blood tests negative. Did you end up doing the biopsy?

What did you mean by the biopsy only ruling celiac "in" not out, i dont understand this term. Immediatley after the blood test, i went on a gluten-free diet, this was one week ago. BEfoer the i had the bloodtest, and before i became really sick, my main source of gluten foods came only from oats and oatbran, and alittle kamut. I have never really liked breads and pasta, so i mostly choice oats, they "were" my comfort food. I have heard that oats dont have as much gluten as other grains and sometimes ppl with celiac disease can manage eating them in small quantities. It could be possible, that day after day eating outs, that my tolerance for gluten became less, outbursting in this illness. Iam not really sure. But before my testing, I bec ame soooo sick that i barely ate, and because i found oats comforting i would have them when i did eat, but i could only handle a few mouthfuls. Is it possible for my blood test to show a false negative because my consumption of gluten was sooo low? whats your opinion? regardless, I am starting to feel alittle better, and my symptoms seem less severe, i can only hope that going gluten free will improve my symptoms every day.

My main symptoms are, nausea, indigestion, heartburn, horrible pressure headaches after eating and between meals, sometimes constipation, no diarehea but somtimes runny stools, bloating, gas pains, knawing stomach pains, stomach aches, burning pain in stomach, constant fatigue, muscles aches, weight loss, lack of appetite. Do you have any of these symptoms?

Keep me posted.

Lemonade

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Lemonade,

Check out the FAQ on the mainpage of this website. There is a section addressing the question of how much gluten you need to be eating in order for the blood tests to be valid. As I read it, it works out to a slice of bread for every 18 pounds of bodyweight for 2 months before the tests.

There are many 'self-diagnosed' celiacs on this board who think their negative blood tests are because of low gluten consumption. Doctors will not diagnose a person as a celiac unless they have a positive biopsy. It's kind of like saying you have to have a heart attack before you need to worry about eating too much fat. The consensus on this board seems to be, 'if your symptoms go away after you go gluten-free, you are a celiac'. This also seems to be the way many doctors in Europe approach the disease, which may be why there are 100 times more celiacs in Europe than the US, even though we have very similar genetic backgrounds.

If the biopsy is positive, you have celiac disease. If the biopsy is negative, you may still have celiac because the biopsy samples your intestines in a few spots. If the biopsy misses the part of your intestines that are damaged, you may have celiac even though the biopsy is negative.

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I'm another one of those "doesn't eat much gluten" negative blood test results people. I had some anxiety and uncertainty after I got the results back as well, but I'm pretty certain that my symptoms correlate with eating gluten -- I also have a father with Type I diabetes (so there's a possible genetic susceptibility link) and I can definitely look back at my past and identify periods in my life when I was eating a lot of gluten, felt really really lousy and had even more strongly indicative symptoms -- including a recurring itchy rash that I thought was from some kind of spider bite!

(No, really, there must be spiders sneaking into my bed and biting me on the knuckles and elbows every so often -- that's what I thought! The credibility of that theory lies in the fact that I was living in the South in a creaky old Victorian house at the time and was having lots of issues with spiders and bugs of all kinds because they used to come up through the cracks in the wood floor).

If my symptoms had primarily been gastrointestinal (they used to be, but haven't been so bad since I've been eating "gluten-lite") I might have continued to pursue the issue in case it was another GI ailment. However, the symptoms that brought me to the doctor had more to do with fatigue, irritability and "brain fog" -- and I'd already ruled out any kind of psychiatric diagnosis.

Most important, however, the weeks in which I was attempting to eat more gluten in preparation for the blood test were absolutely hellish -- I'm convinced enough that this is a problem for me -- and terrified enough when I see what the long term consequences could be that I'm pretty committed to sticking to this diet. It's still not easy -- and a certain diagnosis would really help me feel more righteous about this -- but the seemingly miraculous difference between eating/not eating gluten does seem real to me. And my meditation instructor tells me that righteousness is overrated anyway.

Erica

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Not to add more confusion to the equation but only my tTg was high and then it was a 10 and a 7 only which is really low. My biopsy showed significant damage blah, blah so I was diagnosed with classic Celiac Sprue (same as disease). My doc only took two samples of my stomach lining but the correct way to preform test when looking for Celiac evidence is 6 to 8! I'm so glad he picked places with damage or I'd be eating gluten to this day. Good luck - the whole testing process is hard but I find if you listen to your body, you will eventually get the answers you need, regardless of test results.

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I am a Celiac that never had a postive test result. My blood test came back elevated, but not completely positive. I had an endoscopy and there was no damage found. My GI Dr. is convinced it is IBS. Even though if I eat pancakes I end up in the ER! NO, to me, if it walks like a duck, it is a DUCK! I have been gluten free since 01/09/06. I have only had D twice in those 5 weeks. Both times were from accidental glutening. I firmly believe that I am either gluten intolerant or Celiac. I won't be eating any more gluten no matter what the HIGH $$ GI Doctor tells me! :P Good luck with your diagnosis and recovery!

Monica

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I am a Celiac that never had a postive test result. My blood test came back elevated, but not completely positive. Monica

Monica & all,

I just got my blood test results back and they are negative, too. This is my second blood panel and I thought the first was negative because I had only been back on gluten for 1 month after being gluten free for 7 months. But before this last one, I have been eating liberal amounts of gluten for close to a year :( .

I wish my symptoms were as (DUCK) obvious as yours and some others. I notice my intestines are actually normal when I am off gluten, and are a mess now and before (diagnosed IBS as a teen). But even after 7 months offf gluten, I did not have improvement in my severe migraines and many other symptoms. Sigh. I'm not sure what to do at this point. I suppose the intestinal thing should be sufficient reason to stay off gluten. Hmmmm.

In limbo,

Janine

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Janine, I am sorry you didn't get the results you were hoping for. You were gluten free for 7 months, your stomach issues improved? Migraines didn't? It could be that your healing wasn't complete. If I were you, I would try the gluten free diet again. If you feel better, maybe with time, the headaches will disappear too! OH and don't just try to reduce gluten, eliminate it. That way you get a more clear picture as to whether it is an issue for you!

Monica

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"There are many 'self-diagnosed' celiacs on this board who think their negative blood tests are because of low gluten consumption. Doctors will not diagnose a person as a celiac unless they have a positive biopsy."

our ped gi diagnosed celiac even though my daughters' biopsies did not show damage and one of them didn't have a biopsy. they all had raised tTg levels.

christine

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