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Did I Do My Antibody Test Wrong?

misha

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misha Newbie
misha
Posted

Hi everyone. My sister has celiac disease. I suspected I had it too so I went on a gluten free diet for about a year. Then I decided to have the antibody blood tests, so for about three weeks I ate a couple of pieces of spelt and rye bread a day, then I had the tests. They came back negative for celiac disease.

Thinking I didn't have the disease, I've been eating lots of bread of all kinds since then, but feeling worse and worse -- having anemia, as my new blood tests show, other blood test abnormalities (high ESR), and very fatigued. I just stopped eating gluten last week and now I feel a thousand times better.

Do you think it's possible that I didn't eat enough gluten to build up my antibodies when I took my test? I feel really dumb about it now. Or would that have been enough gluten to make antibodies show? I'd really appreciate any advice. I feel embarrassed to talk to my doctor about it, because he already acted like I was a total pain when I asked for the tests.

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SueC Explorer
SueC
Posted

You may not have been eating gluten long enough for damage to show on bloodwork. After being gluten-free it is recomended to go back to eating gluten for 3 months before being tested. You might want to try again in a couple of months! :(

Rachel--24 Collaborator
Rachel--24
Posted

Definately not long enough for accurrate test results. If you feel bad eating gluten and then feel good off of it I'd say you already have your answer but if you need testing to be convinced...then I'd say at least 3 months eating plenty of gluten everyday.

misha Newbie
misha
Posted
  • Author

Thanks to both of you for your reply! I noticed that you had grave's disease, Rachel -- I've had hyperthyroidism too.

Definately not long enough for accurrate test results. If you feel bad eating gluten and then feel good off of it I'd say you already have your answer but if you need testing to be convinced...then I'd say at least 3 months eating plenty of gluten everyday.
  • 2 weeks later...
munchkinette Collaborator
munchkinette
Posted

I was wondering about this too- I tried the gluten-free diet for two weeks, and my doctor said I need to eat wheat for one week before getting my antibody tests. (next week)

Will one week be enough since I only ate gluten-free for a short time?

Rachel--24 Collaborator
Rachel--24
Posted

Are you getting bad symptoms when you eat gluten? If it were me and I *wasnt* in too much discomfort...I'd eat it for alot longer than one week to get the most accurate test results. I was off gluten for 2 weeks before testing and the tests were negative. Once I was gluten-free for awhile I was never able to go back on it to retest because my symptoms were too severe.

Nancym Enthusiast
Nancym
Posted

Dr. Fine says the intestines can heal up pretty well even as soon as two days of going gluten free and it can take years to get them messed up again to the point of detecting the disease through blood tests or biopsy. And you really do have to be pretty sick to get a positive on the biopsy. I really think the current standard lab tests are very bad at detecting gluten sensitivity unless you're at the extreme end of illness.

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munchkinette Collaborator
munchkinette
Posted
Are you getting bad symptoms when you eat gluten? If it were me and I *wasnt* in too much discomfort...I'd eat it for alot longer than one week to get the most accurate test results. I was off gluten for 2 weeks before testing and the tests were negative. Once I was gluten-free for awhile I was never able to go back on it to retest because my symptoms were too severe.

I've been eating gluten again for 2 days and I do feel kinda gross. I jumped in because I had the same question and just like micha I have been anemic and really tired. I also had a really tiring weekend with lots of exercise (snowboarding) and drinking, so I can't pick out what is from gluten.

I'm still too new to this to understand what it's all about. My two weeks without gluten was an experiment because of my recent anemia tests. I don't actually know which symptoms are from gluten but I really think the tiredness is related since I noticed a big difference after eating gluten-free for about 4 days. It's not that I need really official test results. I'm just too new to this to determine based on how I feel, so I'd like to get an accurate test.

lemonade Enthusiast
lemonade
Posted
Definately not long enough for accurrate test results. If you feel bad eating gluten and then feel good off of it I'd say you already have your answer but if you need testing to be convinced...then I'd say at least 3 months eating plenty of gluten everyday.

Rachel,

how much would you say is "plenty"?

I have never really liked bread, so before going gluten-free, i didnt eat much breads, my only grain came from oats, which are said to be lower in gluten, if not gluten free, depending on cross contamination, but im thinking that oats still cotnained enouhg gluten to send me over the edge and create the symptoms i have. Is it possible that I hadnt been eating enough gluten for the test results to be accurate?

Lemonade

Are you getting bad symptoms when you eat gluten? If it were me and I *wasnt* in too much discomfort...I'd eat it for alot longer than one week to get the most accurate test results. I was off gluten for 2 weeks before testing and the tests were negative. Once I was gluten-free for awhile I was never able to go back on it to retest because my symptoms were too severe.

Rachel...

How were you diagnosed with celiac disease?

Lemonade

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      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
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    • trents
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    • BlessedinBoston
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    • knitty kitty
      My only proof

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