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concernedmamma

We Are Waiting Too....

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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


Kim

Son1-lifelong diarrhea and generally unwell. Diagnosed March 2010 with positive blood work end endoscopy-finally feeling better August 2011

Son2-Diagnosed August2011 Bloodwork only.

Me-Positive bloodwork October 2011, Endoscopy booked November 15th.

Daughter1-no symptoms, negative bloodwork twice

Daugher 2- no symptoms, no bloodwork yet.

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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!


Kim

Son1-lifelong diarrhea and generally unwell. Diagnosed March 2010 with positive blood work end endoscopy-finally feeling better August 2011

Son2-Diagnosed August2011 Bloodwork only.

Me-Positive bloodwork October 2011, Endoscopy booked November 15th.

Daughter1-no symptoms, negative bloodwork twice

Daugher 2- no symptoms, no bloodwork yet.

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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.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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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


Kim

Son1-lifelong diarrhea and generally unwell. Diagnosed March 2010 with positive blood work end endoscopy-finally feeling better August 2011

Son2-Diagnosed August2011 Bloodwork only.

Me-Positive bloodwork October 2011, Endoscopy booked November 15th.

Daughter1-no symptoms, negative bloodwork twice

Daugher 2- no symptoms, no bloodwork yet.

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