How soon do you get a sore stomach after eating gluten?

[MelissaNZ]

Hiya, we are in the process of having my 7 year old daughter tested for celiacs.  Her blood tests came back with one of her markers elevated, so she is now eating gluten every day for a month and then she will be getting another blood test to see if they have gone up - fingers crossed she doesn't have it. 

Her symptoms are.... constipation, very very small for her age, protruding stomach, wets her knickers alot, sore stomachs... but not all the time because she doesn't eat much gluten and eats mainly whole foods.

My question is - she doesn't always get a sore stomach straight after eating gluten.  So yesterday she had quite a bit of bread around lunch time, and then some gluten laden food in the afternoon.  She was absolutely fine, running around, all happy.

But then in the night, around midnight, she woke up with a really sore tummy and then had full on diarrhea.  However, this morning she is all back to normal 

So is it normal-ish to have such a delayed reaction to eating gluten if you have celiacs?  Or if you do have it, do you get an upset stomach straight away? Or can it take hours before you react? Or is everyone different?

- I'll pop this in the kids section as well.

Thanks! Melissa

[pschwab]

My two year old is newly diagnosed (so we don't have a ton of info) but the timing you are describing sounds a lot like him before he was diagnosed and went gluten free. He would go all day seeming fine most days and then randomly around midnight-2am would throw up. He also had the distended tummy and low weight for his age. 

[MelissaNZ]

Hi, thanks for replying.  That's interesting with your boy, that he is fine most days, and then has random symptoms ... .was he on gluten every day?   She seems fine today, and has been eating bread, so not sure what will happen tonight.  I guess i'm trying to figure out if she does really have it, instead of having to wait a whole month for the 2nd test.

[cyclinglady]

Celiac disease is not like an allergic reaction which can start swiftly and end quickly.  It is a autoimmune response to gluten exposure.  Consuming gluten for a celiac sets off a "flare -up" (for lack of a better description) that can go on and on for days, weeks or months.  For example, I was Glutened last July.  Symptoms continued to worsen.  Six weeks later my GI tested my antibodies which were higher than when I was diagnosed! It took three months for me to recover.  Six months to be completely normal (my measure was gaining back lost weight).  

Everyone is different, but luckily, children tend to heal faster.  

I also want to point out that I had no intestinal issues when I was diagnosed.  Anemia was my symptom.  I was shocked that I had it, but the biopsies revealed moderate to severe damage.  

Symptoms can change over time too.  Now, I get horrible intestinal symptoms when exposed to gluten.  That is why celiac disease is often hard to diagnose.  

I hope your little girl feels well soon.   Be sure to request the full celiac panel that second time and not just the one she was positive on.  

 

[MelissaNZ]

wow, thanks for all that info cyclinglady.  The more I read, the more I'm realising it is such a complicated disease, with no rhyme or reason half the time.  Ta for suggestion of full celiac panel - if you don't mind, could you explain exactly what that is?  I just don't want to be fobbed off by the doctors and want to be informed.

When she got tested this time it gave :

- TTG IgA AB reading. 

-Deaminated Gliadin Peptide IgG reading.   (which was 18.4U/ml - which is why they want to do further testing)

- IgA reading.

is that enough?

is there more that she should be tested for?  Her test due in a month just says "ceoliacs  screen".

[lisas11lisa]

11 hours ago, pschwab said:

My two year old is newly diagnosed (so we don't have a ton of info) but the timing you are describing sounds a lot like him before he was diagnosed and went gluten free. He would go all day seeming fine most days and then randomly around midnight-2am would throw up. He also had the distended tummy and low weight for his age. 

R

[lisas11lisa]

I to have a delayed reaction..I have a slow metabolism..If I get glutened I don't have a response till the next morning...Anemia was my 1st major sign(danger zone) also..but found out a lot of my levels were off ..so glad you are pushing for answers...goodluck!

[squirmingitch]

Here's the full celiac serum panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

[GFinDC]

Hi MelissaNZ,

The test should have a range of acceptable results with each test.  Different labs often have varying ranges of acceptable levels, so without the ranges the test result is not easy to interpret.

Symptoms can vary all over the place.  I had alternating C and D before going gluten-free, and sometimes no digestive symptoms.  Celiac is really had to diagnose by just symptoms.  Some people have no digestive symptoms, but do have skin rashes or thyroid issues or joint paint, headaches etc.  Insomnia and fatigue are common also.

She probably doesn't need to eat more than a single slice of gluten bread each day to keep the immune response going for testing.  It might help her sleep if she eats the gluten first thing in the morning so her immediate symptoms are somewhat past by the time she goes to sleep.

Digestive upset is often accompanied by flatulence (gas) made by bacteria in the gut.  The gas and pain can make it hard to sleep.  Not eating foods that feed the gas making bacteria can help though.  Bad foods for the gas are any carbs, sugar, and dairy.

Cold foods like jello seem to help stomach pain for me.  Peppermint tea can also help as it relaxes stomach muscles and that makes it easier to get gas out.  In the USA we have something called Pepto Bismol that can help soothe the gut.  But Pepto has aspirin in it and they don't recommend that for kids.

After I had been gluten-free a while my reactions changed and I usually had symptoms within 30 minutes or so.  Here is a link to the University of Chicago celiac center FAQ.  It might help with some more info.

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[Irene Joanne]

I didn't have obvious severe reactions to gluten before diagnose- I did feel ill a lot though and had bloating and some diarrhea. It wasn't until I was gluten free for a month and then accidentally had a trace of gluten that I got a severe reaction. Reactions tend to be more severe and obvious after someone's been off gluten for a while

[Jays911]

Symptoms really vary. My main one is a nasty cough that usually begins 20-30 minutes after being glutened. But folks I know with GI symptoms report a delayed reaction as not unusual. 

[MelissaNZ]

Thanks for all your replies.