Celiac Blood Tests Came Back Negative!

[sneezydiva]

I don't have the exact numbers to post, they are going to make copies and send them to me. But the P.A. literally showed them to me, and they all were definitely negative, nothing borderline compared to the normal values. Iron levels and such were excellent.

I'm so confused. I really thought I had at last found an answer for I've felt so crappy for the past 8-10 years. I made extra sure to eat plently of gluten before the test. And I tried going gluten free after. I was able to go 48 hours gluten free, and then another 4 days gluten free, and on the days I messed up, you could say it has been gluten-lite. Those 4 days in a row, I felt wonderful! I felt like a new person. I was less tired, irritable, my sinuses cleared & my stomach stopped hurting. I woke up the last day without an alarm, and I didn't wake up feeling all achy and tired.

I have a borderline wheat allergy, but I was told to ignore it, that it was a false positive to my grass allergies. It is much lower than things I was told I tested positive for. But eliminating those foods did not bring such miraculous relief as the 4 wheat free days did. Could it just be my wheat allergy or is it gluten intolerance?

I know most of you will encourage me to continue trying the diet anyway. And I will. I've ordered 2 books from Amazon-Dangerous Grains, and another one I can't remember the title of. It sounds so weird to say, but I just really wanted this diagnosis. My husband tries his best to be supportive, but even he gets frustrated and says things to me like if I just trained myself to, I could wake up earlier. He just doesn't understand the extent of my fatigue. He says if this diet makes me feel better than that is all that matters. But I know down the road, he'll get frustrated with it,especially when it comes to eating out. Whereas if a doctor told him it was dangerous for me gluten, he would never question it. I have a vegetarian friend who others think is "high maintainence" because she brings her own foods to cookouts and such. I don't want to be "that girl". It would be easier for me to deal with if I could tell those rude people rolling their eyes I had celiacs, rather than I think gluten is bad for me and I avoid it. I'm afraid of losing my own resolve and willpower to stick to this diet for a couple of months which is what I really need to do to truly put it to the test. Part of me wonders if feeling better was just a placebo effect and if this is just another crazy alternative cure like all the others I've tried over the years that won't work.

Anyway, sorry to go on and on. If you got this far, thanks for reading.

[gdobson]

I don't have the exact numbers to post, they are going to make copies and send them to me. But the P.A. literally showed them to me, and they all were definitely negative, nothing borderline compared to the normal values. Iron levels and such were excellent.

I'm so confused. I really thought I had at last found an answer for I've felt so crappy for the past 8-10 years. I made extra sure to eat plently of gluten before the test. And I tried going gluten free after. I was able to go 48 hours gluten free, and then another 4 days gluten free, and on the days I messed up, you could say it has been gluten-lite. Those 4 days in a row, I felt wonderful! I felt like a new person. I was less tired, irritable, my sinuses cleared & my stomach stopped hurting. I woke up the last day without an alarm, and I didn't wake up feeling all achy and tired.

I have a borderline wheat allergy, but I was told to ignore it, that it was a false positive to my grass allergies. It is much lower than things I was told I tested positive for. But eliminating those foods did not bring such miraculous relief as the 4 wheat free days did. Could it just be my wheat allergy or is it gluten intolerance?

I know most of you will encourage me to continue trying the diet anyway. And I will. I've ordered 2 books from Amazon-Dangerous Grains, and another one I can't remember the title of. It sounds so weird to say, but I just really wanted this diagnosis. My husband tries his best to be supportive, but even he gets frustrated and says things to me like if I just trained myself to, I could wake up earlier. He just doesn't understand the extent of my fatigue. He says if this diet makes me feel better than that is all that matters. But I know down the road, he'll get frustrated with it,especially when it comes to eating out. Whereas if a doctor told him it was dangerous for me gluten, he would never question it. I have a vegetarian friend who others think is "high maintainence" because she brings her own foods to cookouts and such. I don't want to be "that girl". It would be easier for me to deal with if I could tell those rude people rolling their eyes I had celiacs, rather than I think gluten is bad for me and I avoid it. I'm afraid of losing my own resolve and willpower to stick to this diet for a couple of months which is what I really need to do to truly put it to the test. Part of me wonders if feeling better was just a placebo effect and if this is just another crazy alternative cure like all the others I've tried over the years that won't work.

Anyway, sorry to go on and on. If you got this far, thanks for reading.

I am sorry for all the unresolved issues you are trudging through. My son and I both stopped short of the final diagnosis (the biopsy) with the understanding that we just needed to change our diets for the betterment of our lives and those around us. My son's doctor even said when I cried in his office over the testing, "no matter what the results might be, you know what you have to do." And I did. We would have to be gluten free. So we are.

Any my husband, even without the final "diagnosis" is very supportive of every meal, every bit of controversary and eye rolling that we encounter along the way. He knows how he we change when we have gluten. He even joked one time saying he couldn't believe he married me the other way. I was a bit of a monster.

I say, if it improves the quality of the life you lead, do it. It's your life. There has been a time or two over the years when I thought maybe I was wrong. But then either my son or I would get a bit of something, and I would see the painful changes and I would know the decision to change our diets was for the best.

I wish you the best, and offer my ear whenever needed. Just do what's best for you and to heck with everyone else.

Sincerely,

Gina

[celiac-mommy]

If you feel better going gluten-free, then why don't you listen to your body? Who cares what the test says and who cares what others think-you could be more "intollerant" than "allergic". If they can't support you while you're getting healthy and feeling better, then are they really good friends to begin with? My DD is positive, my husband and I are not (yet), my mother tested negative, but has always had digestive issues, so she tried the diet, felt SOOOOOO much better and stuck with it. She's doing great now! Do what YOU want and what makes YOU feel better. You are in charge of your body-you've only got one so treat it well!

All the best to you!

-Rachelle

[Lisa]

sneezydiva,

If you are totally gluten free ( and that should be addressed, if you have not been) and have been feeling better with a gluten free diet, that in itself is a diagnosis.

Many people here have been self diagnosed and feel very comfortable in those shoes.

If you have:

Checked your meds if any for gluten free.

Checked your shampoo, lotion, lipstick or anything that can get into your mouth.

Checked your pots and pans for scratches, gluten can hide in Teflon scratches.

Toast your gluten free bread on a new toaster.

Buy new rubber spatulas, the dishwasher should clean it sufficiently, if not by hand. Loose your wooden spoons.

Clean you electric can opener.

And clean all surfaces from bread crumbs from others.

I think if you take some time to read here, you may find a place here. If not, it's okay. Celiac, or wheat or gluten intolerance does not fit everyone. But, I am glad that you are looking into why you ill feeling.

As Rachelle said, you need to listen to what you body is telling you.

Good luck and if we can help you in any way, stick with us. Gotta great bunch of folks here.

[kimw/4]

I am sooooo sorry you are going through this. You need to remember the blood tests are not 100 %. There are lots of people on this board, myself included, who don't get the positive result but know we feel better without it. When you are having trouble sticking with the diet or don't feel you have the support of those around you that's what this board is for. Get the support right here. I understand it is hard to not have the diagnosis. You feel like it's not legal to tell people you have celiac. If you want to call it gluten intolerance go ahead. If you want to call it celiac go ahead but don't be ashamed just because you don't have the dr's diagnosis. Doctors and labs aren't 100% anyway.

[gdobson]

I am sooooo sorry you are going through this. You need to remember the blood tests are not 100 %. There are lots of people on this board, myself included, who don't get the positive result but know we feel better without it. When you are having trouble sticking with the diet or don't feel you have the support of those around you that's what this board is for. Get the support right here. I understand it is hard to not have the diagnosis. You feel like it's not legal to tell people you have celiac. If you want to call it gluten intolerance go ahead. If you want to call it celiac go ahead but don't be ashamed just because you don't have the dr's diagnosis. Doctors and labs aren't 100% anyway.

Kimw/4,

I really appreciate you saying that. That's so right on - like you feel like you are wrong in saying it if you don't have the golden "certificate." I never realized it until you said it. But I definitely feel guilty at times.

[Lisa]

I have a positive dx by endoscopy/biopsy. Yes, I have Celiac Disease. But, many have had health improvement going gluten free. You can call it what you want, as far as I am concerned. If you have greater health going gluten free, good for you. All the better.

Calling yourself Celiac for weight loss control, yes I do have an issue. It diminishes the inroads that we have traveled toward restaurant awareness (for medical issues, as opposed to weight control).

[Karen B.]

Negative test results don't mean you don't have Celiac.

How often must a negative test be repeated in suspect individuals?

https://www.celiac.com/st_prod.html?p_prodi...-38107460193.0d

How long must gluten be taken for the serological tests to be meaningful?

https://www.celiac.com/st_prod.html?p_prodi...-09107034209.18

Also, one reason it takes so long to diagnose Celiac sometimes is that there are other problems that mimic Celiac (and people like me that showed no obvious symptoms). That's one reason I tell people that if your doc is honestly trying to diagnose your problems, don't get mad at them for not being able to pin it down on the first few tries. A doctor gave lecture to our local group titled "Why did it take my doctor so long to figure out that I had Celiac?" It made me realize what a miracle it is when the human body works right.

If the gluten-free diet makes you feel better, stay with it and you'll know you're avoiding at least one complication. But keep trying to find your answer.

[gfpaperdoll]

I feel for you. But a negative blood test does not mean you do not have full blown celiac. You can have a negative blood test & total villi atrophy. If I was you I would just test thru Enterolab.com (I need to make a signature for myself with that in it!!) You can get tested for soy, gluten, egg (I think) & dairy all at the same time & you can also get the gene test. Better to gene test with them because they also test for the "gluten intolerant" genes.

& yes dietary trial is the only true diagnosis, unless you want to wait until you are half dead & have total villi atrophy to prove that you have a valid reason to eat a healthy diet.

Go ahead & "be that girl" you might grow some - not meaning any disrespect but at my 60 years I have done a lot of growing myself. When life makes it easy for you - not much growing happens, at least that has been my experience

ALWAYS listen to your body & do what you know is right for YOU.

Good Luck & you are doing the right thing on reading up on this & checking the boards etc.

[par18]

I am sooooo sorry you are going through this. You need to remember the blood tests are not 100 %. There are lots of people on this board, myself included, who don't get the positive result but know we feel better without it. When you are having trouble sticking with the diet or don't feel you have the support of those around you that's what this board is for. Get the support right here. I understand it is hard to not have the diagnosis. You feel like it's not legal to tell people you have celiac. If you want to call it gluten intolerance go ahead. If you want to call it celiac go ahead but don't be ashamed just because you don't have the dr's diagnosis. Doctors and labs aren't 100% anyway.

To say doctors and labs are not 100% is an understatment. The numbers I have read indicate they are operating at about a "5%" rate! The bulk of the remaining 95% of the undiagnosed Celiacs in this country are probably going to have to figure it out for themselves. The most cost effective way to do this is going to be a positve diet response and then the acceptance that this is really what is wrong. The more people who go this route and start requesting gluten free as part of their lifestyle, the sooner we can close the gap of the undiagnosed . The majority of the real Celiac experts are on this board and not in some clinic.

Tom

[GeoffCJ]

I had a negative blood test, but a positive endoscopy and tested positive with Enterolab. After years of false diagnosis, I wanted as much information as possible. I knew I felt better without gluten, but I wanted to know why. I got my answer.

But to be honest, as I told my Doctor during the testing process, I would have needed a pretty compelling reason to eat gluten again. I felt a ton better off it.

Geoff

[Guest micah]

I feel for you. But a negative blood test does not mean you do not have full blown celiac. You can have a negative blood test & total villi atrophy. If I was you I would just test thru Enterolab.com (I need to make a signature for myself with that in it!!) You can get tested for soy, gluten, egg (I think) & dairy all at the same time & you can also get the gene test. Better to gene test with them because they also test for the "gluten intolerant" genes.

& yes dietary trial is the only true diagnosis, unless you want to wait until you are half dead & have total villi atrophy to prove that you have a valid reason to eat a healthy diet.

Go ahead & "be that girl" you might grow some - not meaning any disrespect but at my 60 years I have done a lot of growing myself. When life makes it easy for you - not much growing happens, at least that has been my experience

ALWAYS listen to your body & do what you know is right for YOU.

Good Luck & you are doing the right thing on reading up on this & checking the boards etc.

This is such excellent advice. I was thinking how much more difficult and yet, in a way, how much easier it is when you finally choose to "be that girl." I have found that people who are bothered by it are bothered no matter how iron clad your diagnosis is. And until we stop trying to please them, we cannot take care of ourselves.... Your words all inspired me.

I understand being afraid that you won't stick to it without a diagnosis, I also don't trust myself and have decided to get the Enterolab tests just to give me some more motivation. You can get the $99 test that will tell you if you are gluten intolerant. BTW, I wouldn't tell people you are gluten intolerant..they'll never "get it." If you feel uncomfortable saying "celiac" at this point, perhaps you could say "I can't have wheat" and then drop it. Most people accept something like that. Just a thought.

Micah

[Fiddle-Faddle]

Calling yourself Celiac for weight loss control, yes I do have an issue. It diminishes the inroads that we have traveled toward restaurant awareness (for medical issues, as opposed to weight control).

You know, nobody does bloodwork and biopsy on people just because they are overweight. But isn't it conceivable that, like thyroid disease and diabetes (both of which have links to obesity AND celiac), obesity could be a stand-alone symptom of celiac?

I understand that we don't want "gluten-free" to become the next fad diet. But for the sake of those who may have celiac, with obesity as the only glaring symptom, we don't have the right to shut the door on them.

Given the addictiveness of gluten, what do you want to bet that a sizeable percentage of obese people actually have celiac/gluten intolerance? And it's quite likely that they have other digestive and/or autoimmune problems associated with celiac, but everyone focuses on their weight, so those other problems go undetected.

Heck, those here with every symptom in the book had to fight tooth and nail just to get the doctor to order bloodwork. Why would you expect someone with less obvious symptoms to have a doctor who knows enough to rule out celiac? Everybody says that it's a discipline issue, but nobody tells an overweight person that about the addictiveness of gluten. Who are we to say that someone who is overweight shouldn't look to the gluten-free diet to resolve their weight issues?

I would rather that we, as a group, be as inclusive and welcoming as possible, rather than snobbish. How much better it would be if we take the opportunity to help people improve their health, rather than reject them because they took the "wrong" path to discover what we have learned all too painfully.

[Fiddle-Faddle]

sneezydiva, I'm just wondering how long you were eating plenty of gluten before the blood test? I have read here that you need to be eating gluten for 3-4 MONTHS before bloodwork.

[CarlaB]

You DO have a wheat allergy that you've been diagnosed with ... just tell people you are allergic to wheat.

If you feel better gluten-free, then you have a gluten problem.

If you still have unresolved issues after being gluten-free for a few months, I'd start looking for what else is contributing to the problems.

[Eriella]

I don't want to be "that girl". It would be easier for me to deal with if I could tell those rude people rolling their eyes I had celiacs, rather than I think gluten is bad for me and I avoid it.

I totally get where you are coming from and am in the same boat. I have a very similar story. However, I decided to be "that girl". I decided my health was more important that what people said about me.

As far as what you tell people, here is my rule: if they are close family or friends (the kind that you wouldn't clean your house before they came over) then I tell them the truth. If they are not so close friends/my bosses, I tell them I have celiac disease. If they are people I barely know I say I can't eat wheat. Most people actually don't care about the science behind it or the difference.

Many people may seem I am difficult because of the diet. I don't eat the same food as them and I won't cheat. But, to make it seem very clear that it am not avoiding gluten for fun, the conversation normally goes like this:

them: "why aren't you eating pizza"

me: "trust me, I would love to eat that pizza right now, but my body can't digest the protein in wheat."

them: "that stinks. So ... (change of subject)"

this makes most people accept it and allows me to enjoy the social scene without being hungry or sick.

It is also important to stand up for yourself if you are still in school or in work. I know that I am one of a few people with gluten issues at my college and one of 2 at work, so I need to be a little bit difficult so it will be easier on others. At work parties when there is nothing I can eat I always look at the table, look disappointed, and then go get my own food (just a tip-- make sure that the food is remarkably better tasting, "normal", and different from what the others are eating. If they are eating subs, eat pulled pork. That way people will know that you aren't cheating and in the future they are more likely to remember it).

Good Luck! It will get easier.

[Karen B.]

You know, nobody does bloodwork and biopsy on people just because they are overweight. But isn't it conceivable that, like thyroid disease and diabetes (both of which have links to obesity AND celiac), obesity could be a stand-alone symptom of celiac?

----snip----

I would rather that we, as a group, be as inclusive and welcoming as possible, rather than snobbish. How much better it would be if we take the opportunity to help people improve their health, rather than reject them because they took the "wrong" path to discover what we have learned all too painfully.

Speaking as a Celiac that was overweight at diagnosis, I can agree with everything you've said including how docs are reluctant to test an obese patient for Celiac. I could only get my Mom's doc to test her after I said I'd pay for the test if it came back negative. My own endoscopy and colonoscopy was because they thought I had colon cancer.

I think that gluten, high frutose corn syrup, hormones in our milk and pseudoestrogens absorbed through our plastic containers are all part of the obesity problem. There are probably other undiscovered environmental triggers as well. The only time I object is when I run into someone (like I have at work) who tells me they're no longer doing Atkins, they're doing gluten free now. I don't see it as snobbish to differentiate between a medical necessity and the diet of the week. That's how I make my point that I'm not being rude to say "Keep your knife out of my tub of margarine." (although I've all but given up on the group fridge at work)

For those that are on a gluten-free diet because it makes them feel healthier, IMO that's a medical necessity. There is a whole spectrum from mild reaction to intolerance to full blown Celiac. But because other problems can produce the same symptoms, I think it is always beneficial to determine exactly what is causing the problem.

[sneezydiva]

Thank you all so very much! Your support is overwhelming. As far as the blood tests go, I was never gluten free before the test. I had had an endoscopy for what everyone thought was an ulcer, and Googing "endoscopy and biopsy" led me to discover this board. Anyway, I knew to keep eating gluten so I did, though I fear maybe some days I didn't eat enough because I knew it was making me feel bad. The doctor didn't even go into the small intestine with the endoscopy, he found some stomach inflammation and biopsied that. These blood tests sure as heck aren't going to convince him to do another, so I am on my own--with support of this wonderful board of course.

When I get my copy of the blood tests, I will post them. I know from statistics class "normal values" doesn't neccessarily mean optimal value. Perhaps you all can shed some more light on them. And I will check out Enterolabs But regardless, I will be embarking on this diet.

Not to go through my whole sob story again. but I just know in my heart I have a gluten intolerance. I've been to countless allergists, and other doctors including rheumatologists. Everything else under the sun has been ruled out. There are just so many little clues looking back, like how wonderful I felt on South Beach Diet Phase 1 &2 a few years back, the fact that beer always made me feel ill, but I'm ok with wine and most mixed drinks. Whole wheat bread and pasta makes me feel brain foggy and out of it. I could go on and on, but I won't. Suffice it to say, everyone here is right. I deserve to live a healthy life, and I owe it to myself to commit to a gluten free diet and give it a true test.

Thank you everyone!

[Karen B.]

Thank you all so very much! Your support is overwhelming. As far as the blood tests go, I was never gluten free before the test. I had had an endoscopy for what everyone thought was an ulcer, and Googing "endoscopy and biopsy" led me to discover this board. Anyway, I knew to keep eating gluten so I did, though I fear maybe some days I didn't eat enough because I knew it was making me feel bad. The doctor didn't even go into the small intestine with the endoscopy, he found some stomach inflammation and biopsied that. These blood tests sure as heck aren't going to convince him to do another, so I am on my own--with support of this wonderful board of course.

----snip----

Your doc performed an incomplete endoscopy. Unless he takes biopsies from your small intestine, he can't find Celiac. Was this a gastroenterologist? And, unfortunately, I think you're right. Without changing docs, you probably aren't going to have a thorough endoscopy performed.

You might want to contact your nearest Celiac group for the name of a doc that is competent in performing a thorough endoscopy.