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Blood Test Results Vs Small Intestine Biopsy


GladGirl

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I realize that having been diagnosed by a Hematologist who ran all the blood tests for Celiac Disease on me is not considered the "gold standard". However, after having been through surgery to remove my gallbladder and a very painful biopsy on my liver, I really didn't feel the need to go through yet another "invasive" procedure. Some have questioned me about my ttg level and all I can say is it was my IGA positive results that the Dr. has used for my diagnosis. Here is a short synopsis from our very own library on this site, to explain that type of usage:

"IgA anti-gliadin antibodies are less sensitive but are more specific. In clinical trials, the IgA antibodies have a specificity of 97% but the sensitivity is only 71%. That means that, if a patient is IgA positive, there is a 97% probability that they have celiac disease. Conversely, if the patient is IgA negative, there is only a 71% probability that the patient is truly negative for celiac disease. Therefore, a positive result is a strong indication that the patient has the disease but a negative result does not necessarily mean that they don not have it. False positive results are rather uncommon but false negative results can occur."

This excerpt is from "Interpretation of Celiac Disease Blood Test Results" by Scott Adams located on this site for Diagnosis information.

At this point in my life, almost 60 years of age, I really do not feel the need to digest "gluten" again just to please the medical community or others. With the wonderful results of my newest blood work since being gluten free for 3 months now....I do not want to reverse this process of feeling so much better.

I have been in contact with a support group close to my area and hope my search for a "celiac wise" Dr. in family practice or internal medicine close by can be found. So far, one of the mediators for the group said the Gastroenterologists they have had "cut them lose" to fend for themselves since diet is the treatment. Really?? What a need in the medical community then, even to Pediatricians, OB/GYN, and Dentists! From the short amount of research I have been doing, we need to be monitored at any rate about our nutrient sufficiency and proper treatment when prescribing any medications. That certainly leaves a huge gap since our population is so infected. Try telling your current Dr. he is wrong to prescribe you a medicine!! Mine yelled at me!! Not willing to take that again!

Sending you all well wishes to our healing process! :)


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    • Russ H
      The anti-endomysial antibody test is an old test that is generally reported as positive or negative - a lab technician looks down a microscope to check for fluorescence of the sample. It is less sensitive but more specific for coeliac disease than IgA tTG2. Hence, it is not "barely positive" - it is positive. People diagnosed in childhood recover much more quickly than adults.  I would look at testing all 1st degree relatives - parents, siblings.
    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
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