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My Blood Tests
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3 posts in this topic

To recap my story, 8 years of digestive problems, supposedly have IBS, chronic diarrhea. I go to my doctor and get tested for celiac 3 weeks ago, right after I have the test I start to eat totally gluten free and in less then a week every single symptom I've had is magically gone.

Then the doctor calls me up and tells me all my blood work is totally normal (I had lots done) and that the tests for celiac are all negative. I asked that they send the test results to me and I got them today. I'd like to know if anyone can help me understand them.

The tests ordered were: endomysial iga, gliadin abs, reticulin abs.

this is what the results say:

endomysial iga: negative

gliadin abs, gliadin igg ab: 2.5 (negative is less then 25)

gliadin iga ab: 5.1 (negative is less then 25)

reticulin abs: negative (at 1:20 dilution)

So it seems like every test I had was very very negative, right? How does one explain the change I had by taking gluten out of my diet? How do I find out if I can eat gluten or not?

Susan :(

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Susan, I too had negative blood work, my doctor told me that it is it takes time for a disease to show up in labs, etc and apparently for some us it takes longer than others ;) !

If you had such dramatic results being on the gluten-free I would stay that way as that is a test in itself. Have you explained your gluten-free results to your doc? I would hope that he would accept them, some doc do and some don't I guess. Ultimately it's up to you, do you want to "wait" on this disease to show up in labs or test results and remain in pain or enjoy your reclaimed health?

In my opinion (as I had both) Negative blood test and negative biopsy does NOT mean you do not have celiac disease, but an improvement on the diet means your body apparently cannot tolerate gluten.

I wish you well..... :)

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Likely you simply don't have enough damage for the blood tests to come up positive. But the diet is a test in and of itself. If eating apples always made you feel sick, would you keep eating apples? No. If you're comfortable and confident in the results of the diet, stick with it. (You can also look into other testing methods like York's tests and Enterolab's tests.)

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    • I got glutened last summer.  Heck, I do not even know what glutened me, but I suspect two products that my gluten-free hubby never consumed (he is my canary).  My symptoms were so different from when I was diagnosed (just had anemia then).  My GI thought I had SIBO or something else, but I asked for a celiac panel.  Yep, I had been Glutened!  Took me three months to recover and another three to regain lost weight.  Yeah, I picked up another health issue on the way (hives, rashes, swelling, itching, ab pain, vomiting, and fainting.)   I did not eat out for one year!  Only this summer, I did.  Was it worth the risk?  You bet!  Three weeks in Europe.  Fortunately,  7 days was on a cruise and Celebrity did a great job.  Italy was so celiac-savvy and I did my research and found places recommended by other celiacs in Spain, France and Poland.  If not, we bought cold food at the market and had a picnic.   I am home.  Will I eat out?  Probably not.  I have a busy Fall ahead of me (High School....football, marching band, volunteer positions, house projects, and work).  I can not afford to be sick.   Ah, I will eat out this Thanksgiving break.  My favorite restaurant is 100% gluten free in Tucson, AZ.   Maybe I will discover another gluten-free restaurant closer to home! 
    • I do est out occasionally - but not indiscriminately.  I am careful to choose places that under stand gluten free.  And places that the food is naturally gluten-free, helps, too.  Celiacs can't just eat something that should be gluten-free and hope it is.  We have to use some common sense and ask questions.  
    • You are right that the next step is an endoscopy, which still is the "gold standard" in diagnosing celiac disease.   However, for various reasons the endoscopy is not done because financial contraints  or long wait times (up to a year!), or too ill to proceed.   You have two positives.  You only need one positive to move forward.    The TTg tests  do not need to be positive for a diagnosis (which requires a positive on an antibodies test which you had and an endoscopy).  My TTg tests were negative and I only had a positive on the DGP IGA, yet biopsies revealed a Marsh Stage IIIB (moderate to severe damage. http://www.cureceliacdisease.org/screening/ Unless your PCP is a celiac expert (unlikely), I would insist on a GI consult.   Please find one who is celiac-savvy.   keep eating gluten daily until all testing is complete (biopsies done).  You never know if lab results are going to get lost.  Besides any celiac testing requires the patient to be on a gluten diet.  In the meantime, keep on researching.  Only YOU can be your best health advocate!  
    • I'm having some issues, that I didn't really even know I was having until the blood work showed them. Retracing my steps, I eat very strictly gluten free at home. I eat too much dairy (which is not only a problem for many celiacs, it is also not an anti-inflammatory). The husband and I have eaten out a lot over the last three years of my diagnosis. I guess I have not been overly cautious as I should have been, which I'm guessing could be my problems (although I am seeing the GI doctor tomorrow). So, I'm wondering if anyone here no longer eats out ever? Were you eating out and realized you were still doing yourself damage? 
    • I have been gluten free for three years and I had never *noticed* any neck swelling... but recently at a routine appointment they noticed my neck was swollen. Thyroid ultrasound and thyroid blood work was good. I went to my primary care doctor and she did some blood work. Slight elevation in platelets, elevated C reactive protein, somewhat anemic. Going to GI doctor tomorrow to get some more input into this. Tracing my steps, I bet I cross-contaminate myself way too often as the husband and I eat out too much. I guess we will see....
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