Possible celiac 4 year old

[Millersmrs]

Hi I’m wondering if anyone has any advice. I’m concerned my daughter is celiac positive. I will list her symptoms below. She has supposedly been tested for celiac and it was negative but I’m not sure if it was the full blood test or even the name of the test only that it was for celiac.

she goes from diarrhoea to constipation 

blood and mucus in stool

irritable 

vomiting on occasion especially after eating high gluten food

bloating stomach 

yellow and grey stools that smell horrific one example was she had a diarrhoea episode on my hard wood flooring and even after scrubbing mopping and bleaching I could still smell it 3 days later. 
 

she gets tired for no real reason 

she gains weight then looses it just as quick. 
 

she gets an occasional rash that previously I thought was eczema but not im not sure.

I have pictures of her stools (gross I know, don’t know how to upload them on here). 
any advice is much appreciated. Thank you 

[Scott Adams]

All of the symptoms you mention are very typical for those with untreated celiac disease. I would recommend that you contact the doctor who ran the "celiac" test and get a copy of her results so that you can share them here. 

Even if she does not have celiac disease, she may still have non-celiac gluten sensitivity, which is actually probably 10x more common than celiac disease, yet there is no test for this condition (scientists are working on developing one).

Also, she would need to continue to eat gluten daily before more tests can be done for celiac disease, but depending on what tests were done in the past it may make sense for you to just try a gluten-free diet. Be sure to let her doctor know about her continuing symptoms.

[Millersmrs]

5 hours ago, Scott Adams said:

All of the symptoms you mention are very typical for those with untreated celiac disease. I would recommend that you contact the doctor who ran the "celiac" test and get a copy of her results so that you can share them here. 

Even if she does not have celiac disease, she may still have non-celiac gluten sensitivity, which is actually probably 10x more common than celiac disease, yet there is no test for this condition (scientists are working on developing one).

Also, she would need to continue to eat gluten daily before more tests can be done for celiac disease, but depending on what tests were done in the past it may make sense for you to just try a gluten-free diet. Be sure to let her doctor know about her continuing symptoms.

 

thank you for your reply, we have just moved areas and are with a new doctor who seems pretty on the ball but I will get her past results and share them. Yes I agree I’m going to continue gluten in her diet until after she’s had another test. Yes I’ve read you can still have gluten intolerance but not celiac. I wonder why there isn’t a test yet ?. What I also forgot to mention was she has had a full blood count test that has come back three times with abnormal high platelet count I’ve read that could be because she is celiac ?. Thank you again for your reply.

[Scott Adams]

The high platelet count could be a symptom of untreated celiac disease, but I don't believe it is a common one, and it could also be related to other issues, so it's good you are following up with her doctor about all this. 

As far as why there is not test yet for NCGS, this was only recognized recently as a separate condition from celiac disease, and several studies have been done on how to diagnose it, but so far there isn't a consensus on the best way to test for it. Here are some articles on it:

 

 

 

[Millersmrs]

17 hours ago, Scott Adams said:

The high platelet count could be a symptom of untreated celiac disease, but I don't believe it is a common one, and it could also be related to other issues, so it's good you are following up with her doctor about all this. 

As far as why there is not test yet for NCGS, this was only recognized recently as a separate condition from celiac disease, and several studies have been done on how to diagnose it, but so far there isn't a consensus on the best way to test for it. Here are some articles on it:

 

 

 

I’ve been for a full blood count test at hospital for her this morning and I’m awaiting an appointment to see a paediatrician who specialises in gastric issues. How long that will take to happen I don’t know?. Once I get the call about her full blood count results I’m going to ask what the supposed celiac results where previously and I will post them on here. I’ve been reading more on this forum about how different labs have different readings so it will interesting when I get her tested again as we have moved area. Thank you for the reply and the information about how non celiac gluten tests are being researched it was very informative. Thanks again Adele