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zapsmom

Member Since 09 Mar 2012
Offline Last Active May 30 2012 01:26 PM
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Posts I've Made

In Topic: Confused By Gi

09 May 2012 - 10:10 AM

where is "here"? Is it law or custom that you don't get results?


I am in Canada. I am not should if it is law or custom. I will have to ask. I did find out that it was a dietican calling to inform us on her blood work results. She told me that the results were from before she has the biospy so b/c she doesn't have celiac then the vitamin doesn't have to be gluten-free.

In Topic: Confused By Gi

09 May 2012 - 04:59 AM

When I saw your back posts, your daughter had a positive blood work test result, symptoms consistent w/ celiac, type 1 diabetes, and hypothyroidism.

Now the vitamin levels are low.

This is all consistent w/ celiac, except that the biopsy was supposedly negative ? Who called you on that, and what did they say, but what does it actually say on the report ?

Not unusual for a biopsy in a child to not come back positive for damage.

You need to call this office back and talk to the GI doctor, in person, not just thru the nurse (but can start with her) and find out whether or not he is recommending a gluten free diet, with or without the official diagnosis, to see how she responds to it.

And you need to get the test results, IN WRITING, from them, because you will be needing them down the line.

Don't be surprised if your daughter ends up diagnosed eventually. Type 1 diabetes and thyroid disease are genetically linked to celiac. Weight loss and GERD are classic symptoms.

Wouldn't surprise me that the nurse had a bit of a ping or twinge of intuition, and this was serendipity.

I got the call regarding the scope from the nurse who said that the dr said she was all good. No signs of celiac and all was negative so no celiac. She would be retest through blood work in 3 yrs. She didn't need to be gluten-free. As for the report, we don't get report from dr's here. Only our ped and the Diabetes dr will get this report so maybe I will call them as well. Calling dr or maybe several drs today to get this all unconfused!

In Topic: Confuesed By The Blood Tests

26 March 2012 - 11:50 AM

Hi Shannon. Yes, I would say that your daughter does have celiac symptoms. Everything you mention can be / has been associated with celiac disease. Constipation (or diarrhea) is common. Weight loss is very common (as is unexplained weight gain :o ). Celiac plays havoc with our immune systems and makes many of us prone to infection. Sorry, but your ENT was wrong - one of my primary symptoms because a respiratory virus would always turn into an infection abd I would catch any respiratory virus that was in the neighborhood. Acid reflux - a very common complaint that in most goes away on gluten free diet. Mood changes, attention deficit, both associated. Type 1 Diabetes - a verry common companion autoimmune disorder, likekwise hypothyroidism.

As for the testing, there are several tests which make up the celiac panel, tTG IgA being one of them (tissue transglutaminase). Not all of the tests have to be positive for a diagnosis of celiac disease. If even one is positive it is highly predictive but they often like to do the confirming endoscopy. It is possible that the test that was positive was the DGP (deamidated gliadin peptide). If that was the one, it is one of the best tests to use in children.

I am a bit confused about the GI's comment about the endo doctor. Did he refuse to do the endoscopy?? You really should get a copy of her results for your own information. It is always a good idea to get copies of all results because things do get overlooked, doctors do make mistakes, second opinions are often advisable. :)

The infection would not affect the levels of autoimmune antibodies in your daughter's blood, so the test is a valid result. And yes, it is possible to have negative biopsy with positive bloodwork, or the other way round, positive endoscopy with negative blood work. So even if her biopsy results turn out to be negative, I would put your daughter on a strict gluten free diet for at least three months and give it a good trial. Do keep her eating gluten until after the biopsy though. Here's hoping you get a definitve result. :)


I am confused by the Dr's comment regarding the endo dr myself. I know that he was still going to do the scope b/c when the office called me with the appointment for the GI specialist, I was told about her scope/biospy appointment. After google celiac blood test, I realizes now that it was the peptide that was the postive but the ttg that was negative.

In Topic: Kids In Elementary School

20 March 2012 - 04:54 AM

Thank you OP for posting what has been on my mind for about two weeks now. My DD tested postive through blood work and we are going in for the scope on the 11 of April. My concern are what supplies have gluten in them and how will I know and if the school will take me serious? I have keep them update to date regarding her testing postive for celiac and I got the "ok,so she doesn't eat wheat" I am also concern about when they ate lunches that the other kids' crumbs will get on my DD's side of the table. I don't think that they wash the tables after lunch unless there is a spill. Anyway, I am sorry to hi jack the OP's post, just feeling the same concerns as her.

In Topic: Postive Blood Test For Celiac

14 March 2012 - 10:34 AM

First, THANK YOU all for your support! Secondly, withthe help of her Diabetic team, we were able to get her in sooner. She NOW has an appointment March 26 to see the ped GI specailist and her scope is scheduled as well for April 11.. I am anxious to get all of this done so we can finally get her healthy and get her D back in control! :)