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How Did You Challenge Your Child And Get Through It

beebs

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beebs Enthusiast
beebs
Posted

I am trying to get into a GI asap for testing of my little boy, who has had issues for years and years. He had a biopsy when he was 18 months which was borderline and not enough for a diagnosis because he had projectile vomitting, bad poos an severe reflux his whole life. Fast forward to now and he has been having chronic belly pains for the last 6 months. bad poos (his whole life) and low iron (his whole life). Belly pains are getting in the way of every day life and have been so severe I have taken him to ER over it He had coeliac bloods done a few months ago and they came back negative. Mine are also always negative, and I am coeliac so I don't trust them anyway. 

 

I took him off gluten last week and an instant improvement. 

I gave him gluten twice in the last week - once ended up bad belly pains and vomiting the other time ended up lying and writhing in pain for 7 hours with a "sore belly".

 

I spoke to the coeliac society today - they told me to get him tested again - it is an 8-10 week wait just to see the paed GIs at the hospital. 

 

How did you get through your child being so sick and in pain for that long? Can I give him anything to make him feel better? 

 

I hate this - I hate having to watch him get ill for so long. I'm not sure if I can do it to be honest. 

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greenbeanie Enthusiast
greenbeanie
Posted

Hang in there, and so sorry for your little guy! I had to keep feeding my daughter gluten for about five months after I'd realized she almost certainly had celiac (while we were waiting to see a new doctor). Unfortunately I don't really have any useful advice about how to make it easier, other than to keep focusing on how much better it will be once you can start him on a gluten free diet for good! Hopefully the GI will schedule him for an endoscopy promptly, since that sure sounds warranted regardless of blood test results.

I only tried my daughter on a gluten-free diet for four days, once before her diagnosis. It was immediately apparent that that was her problem. Like your son, she'd been suffering since birth and had daily tummy aches for years (which previous doctors kept ignoring - thus the switch and wait to see someone new). It was especially hard to keep her diet the same after I'd figured out the solution, but I'm glad we stuck it out. I did end up giving her a dose of children's Tylenol before bed several times a week, which I didn't feel great about and only made a marginal difference, but at least I felt like I was doing something.

I did use that time to really talk up some new gluten-free "treats" that she'd get occasionally (without reducing her gluten intake), so that once her other treats went away she wouldn't miss them, since I already knew we'd certainly put her on a gluten-free diet regardless of test results. That probably wasn't necessary, since she was old enough (age 4) to realize for herself how much better she felt gluten free and never once asked for gluten foods again after diagnosis, but it helped me psychologically to feel like I was doing something productive during the wait.

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nvsmom Community Regular
nvsmom
Posted

Can you get him in to see his normal doctor today?  Autoantibodies can stay in the system of some people for weeks or months.  If you get him tested now, you might get answers without having to wait for weeks.

 

Ask for the:

tTG IgA and tTG IgG (anti-tissue transglutaminse)

DGP IgA and DGP IgG (deaminated gliadin peptides) - the best test for young children

EMA IgA (anti-endomysial antibodies) - tends to be positive in more advanced cases

total serum IgA - control test

AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests

 

Theses tests usually require 8-12 weeks of eating 1-2 slices of bread per day for accuracy, and you are mostly there now.  Any MD should be able to order those tests, and positive tests might get your little one in to see the GI faster - they often bump up the little ones.

 

If you do need to gluten him for a while, don't over do it. At his age, the equivalent of 1 slice of bread per day (or a few crackers or one muffin) should be more than enough. Perhaps try giving him his gluten at night so it doesn't wreck his whole day.... But I would recommend testing him ASAP by whatever doctor you can get your hands on.

 

Best wishes.

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seezee Explorer
seezee
Posted

The Childrens Hospital celiac support group posted this article a while ageo: Open Original Shared Link

 

"A new blood test being developed by Walter and Eliza Hall Institute researchers can rapidly and accurately diagnose celiac disease without the need for prolonged gluten exposure."

 

Anyways, if your child is really sick from gluten perhaps you can wait to test for a while. My sister was able to get a diagnosis based solely on my nephew's reaction to the gluten-free diet and positive bloodwork.

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GF Lover Rising Star
GF Lover
Posted

This test is still in the trial phase.  It could still be over a year away.

 

I wouldn't recommend waiting for it to become available.  Hopefully it will help many get diagnosed in the future.

 

Colleen

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