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Lindsey1978

Blood test results

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Hi everyone. My 9 yr old tested low positive on deamidated gliadin igg 24 (normal less than 20), and

tissue transglutaminase iga 24 (normal less than 20) in April. 

Doctors weren't convinced as they were low positives and ordered gene testing. 

Positive for 2 genes. Still not convinced so ordered new screen. 

New results

 deamidated gliadin igg 24 (normal less than 20), and

tissue transglutaminase iga 29 (normal less than 20) in April. 

Numbers have increased although still low positive range. 

My question would that although false positives are possible is it likely that you would 2 false positives 4 weeks apart with increasing numbers. We have an appointment with a Gi on Monday but I get the feeling that diagnosis can be hard to achieve and I want to be as prepared as I can be knowing that they have dismissed his low positive results before. 

Thsnks so much for any input.

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Common sense (all I can use since I am not a doctor) tells me that it is not a false positive.  Do some googling this weekend.  He had two positives.   I can tell you that I only had one positive, yet had intestinal damage.  

What led you to get him tested?  

 

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He suddenly got sick. Vomiting, bad stomach pain, pale, dark circles under his eyes.  Gp did a whole bunch of bloods just to see what was happening and threw the coeliac screen in as an afterthought really. It's been well over 7 weeks where he has vomited every day often 5-6 times a day. He has been admitted to hospital twice and twice I've been told that sometimes tummy pain and vomiting is just unexplained in kids. I get that but surely after 7 weeks it should be taken a bit more seriously. I feel like their dragging their feet in diagnosing with him anything. They keep telling me they don't like putting kids through unnecessary procedures so are just waiting for whatever it is to fix itself. Frustrating because they keep mentioning a scope but won't commit to it yet I have to keep feeding him gluten until they finish testing. I know that's right but it's hard to keep feeding your kid the thing that could be the thing that's making him sick. Will wait and see what the Gi comes up with on Monday but I really hope they pay attention to these latest test results so we can get the ball moving. Coeliac or not I do believe he needs a scope to see what's going on in his poor little tummy. 

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 I understand them not wanting to put him through unnecessary procedures but the alternative is to let him suffer for a longer period of time then?

Tell the docs that if nothing else has been found in two months other then the positive celiac panel then common sense dictates when you hear hooves think horses!  If they don't find the horse THEN they can then start looking for the God damn zebra.

Jesus. Who are they, Greg House? 

My wish for you is that you get a very empathetic GI doctor who is a parent and takes one look at your son and expedites the endoscopy process so he can get to healing.

Hugs to you and your little one. 

 

 

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He can have several issues going on simultaneously.  Even if it is a bacterial or viral infection, parasites, or whatever, he still has two positives on the celiac panel.  Can you find a celiac-savvy PED GI?  

Edited by cyclinglady

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On 6/3/2017 at 1:32 AM, Lindsey1978 said:

He suddenly got sick. Vomiting, bad stomach pain, pale, dark circles under his eyes.  Gp did a whole bunch of bloods just to see what was happening and threw the coeliac screen in as an afterthought really. It's been well over 7 weeks where he has vomited every day often 5-6 times a day. He has been admitted to hospital twice and twice I've been told that sometimes tummy pain and vomiting is just unexplained in kids. I get that but surely after 7 weeks it should be taken a bit more seriously. I feel like their dragging their feet in diagnosing with him anything. They keep telling me they don't like putting kids through unnecessary procedures so are just waiting for whatever it is to fix itself. Frustrating because they keep mentioning a scope but won't commit to it yet I have to keep feeding him gluten until they finish testing. I know that's right but it's hard to keep feeding your kid the thing that could be the thing that's making him sick. Will wait and see what the Gi comes up with on Monday but I really hope they pay attention to these latest test results so we can get the ball moving. Coeliac or not I do believe he needs a scope to see what's going on in his poor little tummy. 

Lindsey1978,

I don't know if it will help you are not but these threads might be of help to you.

And a thread on those who react to gluten by vomiting.

I hope there is some information in these threads that you might find helpful.

your might also PM ennis_tx he used to have similar issues of vomiting but now controls it with digestive aides like bromelain (in pineapples) I think or maybe he will comment on this thread and tell you what he is now taking in the way of digestive enzymes that helped with the vomit comet he was riding.

good luck on finding help for your kido.

posterboy,

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Thank you so much for the responses and links. The more you look into it the more interesting it is. My son was prescribed maxor20 to reduce stomach acid so when he did vomit it wouldn't burn.  I switched him over to lactose free milk almost a week ago and as he was having trouble keeping the maxor20 down he hasn't had that for the past 4 days. Yesterday and the day before are the first two days he hasn't vomited in 7 and a half weeks. Milk or meds? Who knows but we're happy that it's let up. In hospital dr was talking about delayed stomach emptying but was saying that could be the root of all his problems. No mention of the meds contributing to making it worse. Our appointment is today so will see what the Gi says this time. Thanks again, I appreciate it. 

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