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Further Testing Warranted?

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My 3 year old daughter had the blood test run, and the biopsy will happen within a week. Her blood work was "highly indicitive" of Celiac, with "highly elevated antibody levels", though I do not know what the actual levels were. This was a bit of a surprise to us; her doctor suspected Cystic Fibrosis, so the (preliminary) Celiac diagnosis is a blessing as far as we are concerned! This came from a pediatric GI doctor.

Here is where I am stumped; my 7 year old was tested for Celiac when he was about 3. He had - and still has - horrible symptoms. He can't go to bed at night without a bag of heated rice for his tummy. He's dropped from 80th% to 15th% in growth and weight. Diarrhea, bloating, and on. The blood-test was negative, and his pediatrician was not interested in pursuing it any further. Until his sister's positive result, I had put the possibility of Celiac out of my mind because the doctor said "not Celiac!"

Further confusion: my husband and I went to our general practitioner and requested the blood test after we had my daughter's draw. The results for both of us were identical:

Transglutaminase IGA AB -- Value: 1 -- Range: 0-3 (U/mL)

Transglutaminase IGG AB -- Value: 1 -- Range: 0-5 (U/mL)

After the blood test, my husband went completely Gluten Free as an experiment; only a total of about 6 days. When we were told that we didn't have it, he went on a bit of a gluten purge, so to speak, and ended up SOOO sick. He has many of the classic symptoms of Celiac, as well as some lesser-common symptoms.

Anyhow, I'm trying to determine what the proper course of action should be. If we have my son re-tested; if it's worth having either my husband or myself re-tested... A positive Celiac diagnosis would answer so many questions on my son's and husband's health. I'm a bit at a loss on what to do. Any degree of input would be greatly appreciated.

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Since it sounds like you had the tests done by a different doctor with your youngest, it is possible that different tests were run. Which ever doctor ran the tests for both you and your husband did not do the full range of tests necessary to determine if you have a gluten problem or not, only if there was site specific damage in the small intestine. The same limited scope of tests may have been used to diagnose your eldest clear of celiacs, if this is the case then it 100% does not mean that your child has been cleared for having a gluten problem. You may wish to find out exactly which tests were run on your youngest to determine their diagnosis and see how that one specifically compares with the tests given to the rest of your family.

The antibodies tests can give many false negatives, have you had anyone in your family genetically tested?

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