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EverKiy

5 Year Old Waiting On Tests - A Few Questions

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When my daughter was 18 months she was tested for Celiac after noticing an allergy to the breading on breaded chicken, fish ect.. everything came back normal (not sure what tests they did but was just blood work). Now for the past year she has been complaining of stomach pains, I never thought anything of it until they started waking her up at night and even then I just assumed gas pains as I get those when I eat certain food and they can have me curled up on the floor till they pass. She had always had constipation issues since she was about 8-9 months. In December we ended up at the ER with severe stomach pain, fever of 104.3, diarrhoea, and vomiting. They did an ultrasound which showed something and was ruled possible appendicitis and were transferred to a bigger hospital with a paediatric surgeon, after being seen by the surgeon we were told it was a virus and she was 90% sure is was just swollen lymph nodes and she was 100% sure it wasn't her appendix. So were send home with the instructions of Tylenol for pain, and lots of fluids. Here we are 6 months, 5 dr's visits, 7 ER trips and 1 paediatrician later and she is still in pain everyday, some more so than others, thankfully she has only had 3 episodes since our long ER visit in December that has included vomiting and fever. In may I demanded from my dr that something be done to find out why shes always in pain, so she sent her for x-rays and when she got the results back the nurse called and told me the x-rays showed "signs of constipation" but didn't seem able to elaborate on it. We were referred to a different pediatricians and that appointment is finally coming up on the 21st. Now how likely is it that she got a false neg on the blood work done when she was 18 months? I don't know if it is likely that is it Celiacs of not as I’m sure there are many things it could be but after looking into it does seem like a big possibility.

 

Her symptoms include: stomach pain, nausea, vomiting, constipation, lack of appetite, no weight gain in 2.5 years, has only grown 2.5 inches in the past 3 years, and "signs on constipation" on x-rays.

 

 

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I wont be changing her diet until tests have been done, I don't want to let anything interfere with finding out whats going on. I feel so helpless and hate seeing my little girl in pain :(

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Tests don't always stay negative, and celiac testing is notorious for false negatives in toddlers. I would get her retested. Those symptoms are all pretty classic symptoms of celiac in a child.

 

The full celiac panel is;

  • tTG IgA and tTG IgG
  • EMA IgA (often negative in kids as it indicates advanced villi damage)
  • DGP IgA and DGP IgG (a great test for kids)
  • total serum IgA
  • AGA IgA and AGA IgG (older tests)

The tests are discussed here on pages 11-12: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

An Endoscopic biopsy might be a good idea if tests are negative or questionable.

 

If everything ends up negative, try the gluten-free diet for a good 6 months as she might be Non-Celiac Gluten Intolerant (NCGI). those with NCGI have the same symptoms of a celiac but without the villi damage. There is no way to test for NCGI except for a gluten-free diet trial, although some doctors think the AGA tests could show NCGI.

 

Good luck. I hope she gets some clear answers. And when you get her results, feel free to share them here - there is a lot of experience around here from around the world and I'm sure they can help you interpret the tests.

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