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We Are Waiting Too....

concernedmamma

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concernedmamma Explorer
concernedmamma
Posted

I wasn't sure if I should start my own thread or post on the other one about waiting, as we are in a slightly different situation.

* About 6 weeks ago we had general blood work done on our son (age 4.5yrs). I requested a celiac test be added as well.

* 10days ago we got a call that the blood came back "slightly positive" for Celiac. As far as I know only one test was done. I can't remember which one, but was told the number should be less than 7, and his was 15.

* We are now waiting for the ped GI to call us with a biopsy date.

* My sister was diagnosed with Celiac about 2 years ago. She feels her symptoms started rather suddenly and she was diagnosed quickly (within a few months of symptoms starting)

A bit of history....... he has had diarrhea/acid poops all his life. However, he will also go through periods where he has 'normal' stools for a day or two at a time. He is well nourished (at least well growing- 50% or above all his life). He doesn't complain of stomach pain, but is increadibly restless and at times just appears to be uncomfortable in his own skin. He is pale, dark circles under his eyes. Although he seems to be moving constantly, he also tires really easily with activities such as running, sports etc

What are your opinions? Do you think the test will come back conclusive? No one else seems symptomatic- should they be tested too if he is positive?

Thanks for your help!

Mamma to 4 little one: 6 (girl), 4.5yr (twin boys) and 8 month old girl

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concernedmamma Explorer
concernedmamma
Posted
  • Author

We have our biopsy/scope date- March 15th. So glad we don't have to wait too long. They said the dr will talk to us afterwards about what he saw during the scope but it would take up to a week for the biopsy results. Do they generally see enough to 'diagnose' or will we need to wait for the biopsy results?

Thanks!

mushroom Proficient
mushroom
Posted

We have our biopsy/scope date- March 15th. So glad we don't have to wait too long. They said the dr will talk to us afterwards about what he saw during the scope but it would take up to a week for the biopsy results. Do they generally see enough to 'diagnose' or will we need to wait for the biopsy results?

Thanks!

Sometimes the damage is visible during the scope, but most often you have to await the biopsy results. The GI should take at least six biopsy samples from different areas, since it IS often invisible except under the microscope, and the damage to the small intestine can be patchy and thus sometimes missed. The waiting period is hard.

Good luck with your wee fellow.

jenny-ann Rookie
jenny-ann
Posted

I am so glad the biopsy is soon!

mommida Enthusiast
mommida
Posted

Yes, your family should be screened for Celiac. Some Celiacs do not have symptoms.

  • 2 weeks later...
concernedmamma Explorer
concernedmamma
Posted
  • Author

Well, we had the biopsy today.I have to say that the entire procedure went really well. I was disappointed that the were unable to see anything on the scope. Now we need to wait until NEXT THURSDAY to get the results of the biopsies. I am so DONE with waiting.

So, as I understand it, our numbers are on the low side (antitransglutaminase was 15, with under 7 being 'negative'). I was told it is pretty conclusive if it is over 100. But, is it possible to have positive blood work, and NOT have Celiac Disease, could it be indicative of something else like an allergy or intolerance, or is it just a matter of time until things get bad enough to get high numbers on the blood work? Should I just start the Gluten Free diet anyway and see if it helps? Perhaps I should just wait until I get the results before making any decisions/changes!?

So many questions- I'm sorry, and thanks for all your help!

Mamma to 4 little ones: 6 (girl), 4.5yr (twin boys) and 8 month old girl

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