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Suspect I Have Celiac, But Negative Home Test. Help!

rhiannon34

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rhiannon34 Newbie
rhiannon34
Posted

Hello all. I have been suspecting I may have celiac for several years. I have many symptoms, including constipation, lactose intolerance, heart palpitations, tingling hands/feet/mouth after drinking beer, blood in stools, and anemia. I took an at home test about 2 years ago (not from Enterolabs) that came out negative so I dropped thinking I was Celiac for awhile, but I still really have a strong feeling I may be and really need help. I became really concerned about this again recently after changing my vitamins that included iron, feeling terrible for weeks, then feeling tremendously better right away after taking iron supplements. I don't have any money (single mom with 2 kids) so ordering the Enterolab test can't happen, my health insurance from my job will be effective in another 6 weeks, so I plan to see a doctor about it then. Was the at home test that I took accurate? Does anyone here have any suggestions on the best way I can go about getting a good diagnosis?

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rhiannon34 Newbie
rhiannon34
Posted
  • Author

Wow, have been reading some posts. Could costochondritis also explain the sharp shooting pain I have been getting in my chest when I breathe in since I was a kid??

Skylark Collaborator
Skylark
Posted

If you got the Biocard test it is supposed to be quite good, but all the celiac blood tests do have an estimated 20% false negative. It also only works if you have normal IgA.

If you have insurance kicking in in six weeks, it makes the most sense to keep eating gluten and ask for a full celiac panel. The new deamidated gliadin peptide (DGP) IgA test is one to ask for as not all doctors are ordering it.

If everything comes up negative, you can still try the diet and see if it helps.

rhiannon34 Newbie
rhiannon34
Posted
  • Author

If you got the Biocard test it is supposed to be quite good, but all the celiac blood tests do have an estimated 20% false negative. It also only works if you have normal IgA.

If you have insurance kicking in in six weeks, it makes the most sense to keep eating gluten and ask for a full celiac panel. The new deamidated gliadin peptide (DGP) IgA test is one to ask for as not all doctors are ordering it.

If everything comes up negative, you can still try the diet and see if it helps.

Thanks, yes, it was a biocard test that came up negative. If I'm not celiac then I just don't know what's wrong with me!

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks, yes, it was a biocard test that came up negative. If I'm not celiac then I just don't know what's wrong with me!

I think Skylark gave you some good advice. After your done testing go ahead and give the diet a good strict try. False negatives on testing are not uncommon and you have nothing to lose.

rhiannon34 Newbie
rhiannon34
Posted
  • Author

Thank you, I have been wondering lately though if I should worry with the testing. I know it will end up costing alot, even with insurance because of deductables and all, and I really can't afford it. I know I should at the very lease have the blood in my stool checked out, but even with all these inconclusive tests and false negatives, I may spend the money and still not be sure. I could go ahead with the gluten-free diet and see if I can resolve some of these health problems on my own, and who cares about the Dr. diagnosis, as long as I know. But then again, I was hoping that if it was celiac, I could use the diagnosis to get my kiddos tested, one of which is 16 and has ADHD, and one who is 3 and has constant digestive problems, sick more than he is well, and lactose intolerance. I just don't know, any suggestions? I am really anxious to start feeling better.

ravenwoodglass Mentor
ravenwoodglass
Posted

Could you just ask the ped to test them? In some countries it is part of the routine testing done in children. If needed tell the ped you have celiac symptoms yourself and if you do better on the diet let them know that the diet is helping you.

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undiagnosed2years Newbie
undiagnosed2years
Posted

Blood in stool is nothing to kid around with. Use your insurance.

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