Blood Test Negative But Diet Is Chaning Everything!

[IngridBeth]

Ugh I am so confused! Last Thursday I finally told my GP that I feel better when I don't eat bread (I was dx with IBS in '94, Fibromyalgia in '03, and a host of other issues especially exhaustion, weak muscles, pain and major sleep issues). I have known for quite some time but that my body "doesn't like" bread and cookies and other things like that but for some reason I guess I didn't think it was a "real" thing so I never mentioned it to my doctor, go figure! Anyway the doctor took blood and said he'd do some tests, not sure specifically what, for Celiac (Actually he said "You could have Celiac or a mild form of Celiac, or a gluten intolerance..there are some tets we can run..).

The past week I have gone gluten free and I have been through a host of physical changes! Some withdrawal, very bad pain after eating a few times, headaches, but also improvements (seven pounds weight loss, I have had trouble with being overweight for years), better sleep....yesterday I did not take a nap (I always have to sleep in the afternoon!). This morning I woke up early and felt well! The list goes on..

So today I called my doctor's office to see if the results were in. My regular doc is on vacation but the other doc told the nurse to tell me "everything's normal." I don't know how specific that is but I guess it means I probably do not have Celiac? I know blood tests can be wrong but I guess I was hoping for confirmation of what my body seems to already know. So, COULD I be wrong?

Thanks for all your help, this is a great resource.

[ravenwoodglass]

Short and sweet, listen to your body. It is giving you the answer. Stay strictly gluten free.

[GlutenFreeManna]

If you had been avoiding bread and things like that before the test (you said you already realized they made you feel worse), then you were eating "gluten lite" and the test results may be wrong. In fact they are often false negatives. Listen to your body. If you have something else wrong, being gluten free will not prevent diagnosis of another illness.

[IngridBeth]

What you both say makes a lot of sense. True I had been avoiding bread though not altogether...maybe enough to makea difference. And yeah, I will listen to my body. That is very sound advice!

Next question is what kind of doctor might be able to further help me figure out food allergies or intolerances? Or is it all trial and error anyway?

[missceliac2010]

I had a post that looked just like this 2 weeks ago. My body said "you have celiac", and my blood tests and biopsies said "you don't have celiac." I listened to my body, told my doctor about the amazing changes despite the lack of official blood tests proving I have celiac, and he told me he was officially diagnosing me based on positive reaction to a diet change.

Bottom line, no blood tests matter. If you feel better gluten free, then go with it. I have found out that not only am I gluten intolerant, but I am very sensitive! Just a little hidden gluten sends me tail-spinning into a swollen belly, and incredible pain. SO I don't know what's wrong with their "blood test", but I have severe Celiac Disease! And I won't let anyone tell me differently! Listen to your body. I did. And I couldn't be happier.

Good luck!

Ugh I am so confused! Last Thursday I finally told my GP that I feel better when I don't eat bread (I was dx with IBS in '94, Fibromyalgia in '03, and a host of other issues especially exhaustion, weak muscles, pain and major sleep issues). I have known for quite some time but that my body "doesn't like" bread and cookies and other things like that but for some reason I guess I didn't think it was a "real" thing so I never mentioned it to my doctor, go figure! Anyway the doctor took blood and said he'd do some tests, not sure specifically what, for Celiac (Actually he said "You could have Celiac or a mild form of Celiac, or a gluten intolerance..there are some tets we can run..).

The past week I have gone gluten free and I have been through a host of physical changes! Some withdrawal, very bad pain after eating a few times, headaches, but also improvements (seven pounds weight loss, I have had trouble with being overweight for years), better sleep....yesterday I did not take a nap (I always have to sleep in the afternoon!). This morning I woke up early and felt well! The list goes on..

So today I called my doctor's office to see if the results were in. My regular doc is on vacation but the other doc told the nurse to tell me "everything's normal." I don't know how specific that is but I guess it means I probably do not have Celiac? I know blood tests can be wrong but I guess I was hoping for confirmation of what my body seems to already know. So, COULD I be wrong?

Thanks for all your help, this is a great resource.

[lovemydog]

I just got back from my follow up with my gastro doc and he told me my celiac biopsy was negative from my colonoscopy/upper endoscopy. I have a hiatial hernia and gastritis. I told him I've been gluten free for almost a month now (I decided to give it a shot when he told me he was doing a biopsy for it) and I feel a 100% better. He was puzzled/interested by that and now he is ordering a gluten blood work panel, so we will see. I feel like a hypochondriac but I know there is something up with my body + gluten. I've always had a sensitive stomach. I had h-pylori infection in high school that went untreated for almost a year which was pretty much my definition of hell. I also used to abuse alcohol every weekend in my early 20's (getting sick a lot, totally overdoing it, etc..). So my poor stomach has obviously been through a lot. I'm starting to get very frustrated with doctors and testing and everything coming back "perfect" when I feel anything but perfect. But it's a relief to see that I'm not alone. I get chest pain and pressure/palpitations that go away when I take an antacid (Galviscon works amazing!). My gastro doctor just told me earlier that stomach acid problems don't cause heart/chest pain but I have a friend who is diagnosed with GERD and her doctor says it does. It really annoys the poop out of me why does one doctor say one thing and the next disagree? Then of course there is so much info on the net that contradticts what my doctor tells me.

All I know is I used to spend all morning on the toilet having abnormal bowel movements, and constant painful upper abdominal bloating and now that I'm gluten free, I just have 1 or 2 normal bowel movements a day and that alone has made me feel so much better so I'm sticking to it and I encourage you to stick to it too and like other people have said, 'listen to your body'. I'm anxious for the blood panel results and I know this sounds crazy but I hope it shows something! If I get told "everything's normal" one more time I'm going to scream. Yes, it's great news, but it's also frustrating. I even had a couple of slip ups and ate gluten and sure enough, the next day I had diarrhea. I'm choosing to listen to my body:)

[Cat Eyes]

If you feel better on the diet, then stick to the diet. I went to my doc yesterday, and I told her I believed I had Celiac based on my reactions to gluten containing foods/drinks like bread and beer. She wants to do a blood test to confirm. I told her I had been on the gluten free diet semi-strictly for about 5 months now (I cheat here and there). She said that the antibodies would still show positive whether I was on the diet or not. I think she's wrong (kind of scary that the person in charge of my health doesn't know these things, but I've found most docs ignorant about Celiac). Regardless of what the blood test says, I'm staying gluten free.

[Skylark]

This board is full of people who tested negative and feel awful when they eat gluten. A bunch more of us never got diagnosed by doctors because they don't suspect celiac often enough. It's great that you found out something simple that makes you feel better and don't worry about what the doctors say.

[IngridBeth]

Thank you everyone! Yes I am still going to stay gluten free...I do have a question though. Is it worth going to an allergist or some other specialist to try and sort it all out, or should trial and error be just as good? I mean, I suspect I have a dairy sensitivity (not obvious before I took out gluten), and now I wonder if there might be other things I need to cut out???

[chasbari]

I tested negative and my endo was brutally positive. I would suggest you read up on various diet approaches here including the SCD and paleo. Elimination and rotation as well. Start with a bare bones safe diet of a limited number of foods you know you don't have any issues with. Make sure you get a D/calcium/magnesium supplement

(and make sure it is gluten-free and any other fillers that might be trouble) if there may be bone density issues involved with the malnutrition/malabsorption so common with celiac. Back to the diet. Go with a short safe list and every few days try a different food to see how your body reacts. I know there are many here with issues with supposed safe alternative grains. I know I can't tolerate any so I stick with pretty much a paleo diet. My concession is I eat a ton of eggs (and my cholesterol profiles have never been better!) hmmmm... I cannot take any corn or soy or dairy or nightshades or legumes... that has taken time to figure out. Trust your gut! Good luck.

[Skylark]

Thank you everyone! Yes I am still going to stay gluten free...I do have a question though. Is it worth going to an allergist or some other specialist to try and sort it all out, or should trial and error be just as good? I mean, I suspect I have a dairy sensitivity (not obvious before I took out gluten), and now I wonder if there might be other things I need to cut out???

The best test for food reactions is removing them from your diet. There are no reliable diagnostic tests an allergist could do, only tests that help guide what to try eliminating. If you want professional help, a dietitian might be your best bet.

Sensitivity to dairy is VERY common in gluten intolerant folks. Some are lactose intolerant, others react to the casein. The other one to look at is soy.

[torimuse]

Thank you everyone! Yes I am still going to stay gluten free...I do have a question though. Is it worth going to an allergist or some other specialist to try and sort it all out, or should trial and error be just as good? I mean, I suspect I have a dairy sensitivity (not obvious before I took out gluten), and now I wonder if there might be other things I need to cut out???

Hey, that sounds like me! I used to drink a TON of milk, but two weeks after going gluten free, I reacted to milk within 5 minutes of drinking some. I went to the extremes and cut EVERYTHING out of my diet that might have any chance whatsoever of giving me a reaction, and I'm going to start testing them here in a couple weeks. I can be an extremist at times, though. Milk and soy seem to be the two biggest secondary intolerances on this board, so I'd suggest cutting them out for 2-4 weeks, then try soy for a week to see if you react. If you don't react, great, try milk the next week. If you do react, stop eating it and move on to milk after you feel better.

It's better knowing than not knowing. You'll usually get a bigger reaction after all previous traces of the substance have left your body.