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Weak Positive Diagnosis For Celiac


janu

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janu Rookie

I am a retired schoolteacher, age 57. I've had 28 years of symptoms with various diagnosis, IBS, Ulcerative colitis, arthritis, trigeminal neuralgia, anemia, depression, high blood pressure, diahrea, etc. I have always been slightly overweight but have suffered many of the other symptoms associated with Celiac. My doctors always treated individual symptoms, usually with some form of medication to mask the symptom. After doing a medical d-tox through my chiropractor I felt hugely better! Then my daughter was diagnosed with Celiac. I traveled to see her doctor and had the antibody tests done. The results showed a "weak positive" probably because I had been gluten free for 2 months because it made me feel better. My dilema - should I go back on a regular diet for a period of time and have the tests redone or does it matter? I also have two other children that are having unexplained health problems. Would it help them if I had the confirmed biopsy or is that insignificant? :unsure::unsure: : :unsure:


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MySuicidalTurtle Enthusiast

I was diagnosed with Celiacs and then my brother was but my Mom who had the same and even worse symptoms couldn't get a positive blood test. She didn't want a biopsy so wenton the diet and has benifited greatly from it. You don't NEED an official diagnosis unless for some insurance or something but other than that if you want to stick with the diet because you feel better then do it!

Your other children shuld get tested. Even if you aren't official their sister is.

KaitiUSA Enthusiast

You do not need an official diagnosis unless there is a reason you think you need one. I would personally just listen to your body...you know it runs in the family and you had a weak positive when trying to be gluten free for 2 months then that should also speak for something.

As Kristina said the rest of your children should be checked....other blood relatives should probably get checked as well considering it is genetic.

Rikki Tikki Explorer

I agree Janu, I don't think you need to go back on gluten to get a positive result. If you feel better, I would just stay away from gluten. If you already have a weak positive that should be good enough. I think the other kids should be tested. With me, the doctor didn't even tell me he suspected it, he received the blood tests did the endscopy and then told me. Of course, that was years after a doctor had told me my blood showed a disease, but he didn't think I had it because it was so rare! Guess what that was, celiac. Who knew....... ;)

ianm Apprentice

I don't have a formal diagnosis but I feel so much better since going gluten-free that I really don't need one. Try not eating gluten for a while and if you feel better then that is all you really need to know. The only "cure" for this disease is to stop eating gluten so it won't hurt to try.

Guest chickadee

:rolleyes: ( Open Original Shared Link ) If you cut and paste this link it will take you to the Mayo Clinic web site page that deals with diagnosis of Celiac disease.

For anyone who thinks they may have Celiac, going gluten free can alter your results.

Not everyone will have positive results no matter what they do.

I never had a positive result because my gluten intake had been limited by the time I went to see the specialist. I was told by the specialist to go gluten free if it made the symptoms go away. Part of the diagnosis involves symptoms.

When we took our son to the sick childrens hospital they told us that it was possiblel for our son to have the blood test and biopsy done, and still be negative.The recomondation when this happens is to listen to your body. If you eat something that makes you sick then dont eat it.

Take Care, Brenda

Lesliean Apprentice

Being weakly positive is like being somewhat pregnant. You either are or aren't. And the antibodies start dropping immediately on a GFD.

The next step would be the "gold standard" biopsy and I believe it is starting to be questioned as a neccesary test for diagnosis. It is sometimes like looking for a needle in a haystack and those who are positive on the blood work are often already gluten-free and reluctant to eat gluten again for any reason. After 2 months your intestines might have healed enough to biopsy negative. My doctor said that in order for me to have the biopsy I would need to go back to eating gluten for 2-3 months. No way for me!

I am so glad you are getting good results from a GFD and that family members are pursuing this too. I hope the other kids will get tested as your serology was positive. Also, if your family has intestinal damage they might have temporary trouble digesting dairy too as it is broken down by the tips of the villi in the small intestines.

Leslie


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    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
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