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Blood Tests Negative?


jaycee30

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jaycee30 Apprentice

I wnet in last week and had blood drawn to be tested for gluten intolerance/celiac. The nurse called me back yesterday and told me that the tests were negative.

I am wondering if my diet could just be so low in gluten on a general basis, that the blood tests are wrong?

I am quite allergic to eggs (white and yolks). Last year I had two bad reactions; heart palpitation, low BP, flushing and then extreme pallor, etc. after eating meals that contained eggs. So I went to an allergist, who pulled blood and tested me for 35 common foods (whear, soy, corn, pork, chicken, beef, MSG, eggs, milk, etc.) The eggs came back positive, the rest negative. Since then, I have not touched an egg product of any kind. I eat no prepared foods, no instant foods, no gravy mixes, no breads, pasta, pastry, muffins, etc. My diet consists of food I prepare myself with some type of meat or fish, potatos or rice and a wide variety of veggies and fruit. My general rule of thumb when reading ingredients, is if there are more than 4, I don't eat it.............

Once a week, I would indulge in pizza from Sam's Club (their crust has no egg product) and once every two months or so, dinner at a mexican restaurant that is willing to prepare my food with no spice mixes, etc.

I've found that within about 8 hours after eating tortillas with my dinner out or pizza, I bloat, constipate, have belly pain, feel a hearbeat in my belly and get sore and itchy right around my belly button. Someone at a NEW allergist office mentioned gluten and I started looking around (right here as a matter of fact) and then asked to be tested.

With so little gluten in my diet on a day to day basis, is it possible that the blood test is wrong? Could I be "gluten intolerant" and its not finding it? I've had several tests for my stomach issues and all is normal there.

Thanks for your time,

Jen


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tarnalberry Community Regular

Yes, that could be an issue. As could the exact tests the doctor ran. And even then, you may not have enough intestinal damage for a blood test to register positive. When my blood tests came back inconclusive (I had been gluten-free for two weeks), my doctor suggested continuing on the gluten-free diet for a few more weeks (as I had seen an improvement in my symptoms) and then doing a gluten challenge (eat a bunch of gluten), and see how it goes. That gave me my answer!

celiac3270 Collaborator

First off, your diet could be so low-gluten already that the tests messed it up. More likely, however, you're just one of those common celiacs who get negative blood results and postive biopsies.

flagbabyds Collaborator

Probably because you are only eating gluten like once or twice a month indicates your low blood results, try the strictly gluten-free diet and see if you feel better.

Guest barbara3675

I have replied on another post today about this, but yours is appropriate too. I just got back a negative result to one test, but the doctor didn't tell me which test he was doing. I ate gluten up to and through the day of the test/waiting until the day after the test to begin the gluten-free diet. I really do say that I am feeling much better, but I still have a tender tummy. If I am understanding right, it can take some time for that to correct itself and on top of that, I have fibromyalgia and hurt most of the time anyway. I have to learn to discern between the kinds of pain I am feeling and just where it is coming from I guess. I have a granddaugher who is six that has had celiac disease, a definite diagnosis, since she was one year old. I know how to lead the gluten free life and have decided to give it a whirl and see if the "tummy tenders" will go away. My internal problems are constipation with the tendancy to develop uncontrollable diarreah in a heartbeat, very embarrasing. I did read in a celiac book that this goes along with the disease. Barbara

gf4life Enthusiast

Jen,

I also had negative blood tests, and my normal daily diet was pretty low in gluten. I wondered if that might have messed with my results. Also, I have never been able to get qany of my doctors to check my serum IgA level. There are an estimated 10% of Celiacs who are IgA deficient and those people would generally have false negative results. If your doctors dodn't test your serum IgA, then that might be something to ask for. I did eventually get a biopsy done, but only after going gluten free and then back on gluten again. My biopsy was aslo negative.

Now most people would just drop it after negative blood and biopsy, but there was no disputing the fact that I was horribly ill while consuming gluten and so much better while gluten free. I eventually had the stool and gene tests done at Enterolab and both those were positive for gluten sensitivity (and casein sensitivity) and I carry one of the main genes for Celiac Disease, and another that causes gluten intolerance. I also had my three kids tested with Enterolab after their blood tests came back IgG gliadin positive only, negative on everything else. We never had biopsies done on the kids, not worth putting then through that when we already had our answers from the Enterolab tests and their improvement of symptoms on the diet.

I really think doctors should put more faith into the diet as a test. Most doctors will tell you that the diet is just too hard to follow 100%. My kids doctor told me there was no way I would be able to keep the kids on the diet! I disagree. It has been pretty easy to stick to it, and the kids are so much healthier now that they choose to keep themselves very strick on the diet.

Have you tried the gluten-free diet? Do your symptoms improve while gluten-free?

You could check into Enterolab Open Original Shared Link

God bless,

Mariann

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      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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