Words To Describe A Celiac-Attach

[concernedmamma]

I am not even really sure how to word this question........... My son(age 5) was diagnosed with Celiac about 8 months ago, and has been doing very well on the diet. I would venture a guess that he has been reacting to Gluten all of his life. Prior to diagnosis, he never/rarely complained of belly pain (but has always had foul, fluffy, weird diarrhea). BUT he often seemed uncomfortable as seen by constant squirming, restlessness, etc.

Recently, though, he will complain that his tummy hurts. I cannot tell if this is 'celiac' pain, hungry tummy pain, etc.

Is the discomfort of a celiac-attack describable? What would the descriptors be that you use? Is the pain sharp, nauseating, dull, etc? Is there even a 'general' feeling, or is it vastly different for everyone?

Ok, one more question........ there have been a few instances recently where I KNOW he had something he shouldn't, but doesn't have diarrhea. Other days he is complaining of discomfort or acting like he has been glutened and I can't figure out what it is. Do most people react almost immediately? Are some reactions just feelings (stomach pain, restlessness, irritability), and NOT diarrhea?

I don't think I will EVER figure this out!!!!!

[srall]

This is a tough one. I'm trying to figure out if my 7 year old's experience with going gluten free will be like mine. Will she experience withdrawal, will other food intolerances pop up? How will she react to an accidental glutening?

I know adults don't always react to gluten with D. Sometimes it's joint pain, confusion, brain fog etc. I can only assume children would have different reactions and responses as well.

Now I'm trying to figure out when my daughter tells me she has a gassy stomach, is she still having a real gassy, crampy stomach that results in D, or is it just an urge to poop and she doesn't have any other language for this because the poor thing has had a lifetime of chronic D?

So, I don't think I answered you question at all. I guess just watch your son closely to look for changes in behavior and as fun as it sounds, keep an eye on the poop.

[Skylark]

Wheat sure gives me a stomach-ache. It's a dull ache that used to have me curled up with a heating pad and thinking I had a virus or something. I'd use exactly the words your son does. "My stomach hurts." It's not something I would confuse with hunger, and I wasn't generally nauseous. I was diagnosed with gastritis at one point when the pain wouldn't subside and told to stop drinking coffee. (If only the doctor had told me to stop eating wheat.)

[T.H.]

Okay, hope this will help!

1. Vastly different reactions for everyone, sadly. Or at least it CAN be. The reactions can be all over the place, sigh. The problems myself or my daughter have had would be the following (and I know others who have had different ones, too): Headaches, tummy pain, constipation, brain fuzziness, low frustration tolerance, insomnia, heavy/tired feeling to arms and legs, anxiety or anger outbursts, depression, cramping, dizziness.

Neither of us almost ever get diarrhea.

Sometimes we have some, sometimes others. It depends on the amount of gluten we've been zapped with, and other than that, I'm uncertain why it is different. I sometimes wonder if it changes based on rye gluten vs. wheat gluten, or whether the gluten was all in one piece or had been broken up, etc... Don't really know. Also, my daughter gets the tummy pain, but she gets no D more often than not. Just pain.

As to the when it happens after getting gluten? I get my reaction sooner after getting gluten if there is more gluten. The less there is (for me), the longer it is until I react, but at most, it'd be 30 minutes. My daughter can react right away if she got too much, but she has also reacted a few hours later.

I should add that this is not cheating, this is just from cross-contamination.

My father and brother (also celiacs) don't react for 24-48 hours, and it's typically cramping and the big D, and they sometimes cheat and have bread and such, and they still don't react for quite a while.

Another aspect of all this fun stuff? As they've been going gluten free for longer, the kids have developed different symptoms to gluten. My daughter never had tummy pain when she was diagnosed, but about 4-6 months gluten-free, she started to. Then she started getting weakness in her arms and legs if the stomach pain was bad.

I've only been doing this for a year and a couple months now. I was diagnosed, then my daughter, my brother, and my father has been celiac for a few years. And a year into it? Yeah, we're still figuring it out.

Some things that have helped me?

1. Trying to notice patterns. Like, when my daughter started having tummy pain, she was say she was so hungry her stomach was hurting, and I finally noticed that she was saying it within an hour of eating. So...not likely. Then after a month or so, noticed that this was only when we had processed gluten-free crackers or cereals and such. We cut back on these and the tummy pains stopped for a while.

Then she started having them to some gluten-free pancake mixes. I noticed that her usual insomnia and crying jags that she sometimes has off and on were always 'on' for the day and the day following tummy pain. Then I realized that the times she panics over how to figure out something? Same thing - tummy pain, insomnia, and the crying jags were all on the same days, too.

As time has gone on, there have been many things that I never would have thought of as a reaction that I'm realizing HAVE been. They stop when she gets no gluten; I think that's something that'll come with time.

2. Another thing that helped me: to remember that 'gluten free' is not the same as 'no gluten.' It's actually 'really, really low gluten.' So it can help to think of it like low calorie food. Too much low calorie food can make us fat, and too much 'really low gluten' food can still give the little one too much gluten. That got us a few time, when my daughter loved the gluten-free crackers and gluten-free cereals and gluten-free cookies - we'd eat a lot of these, and she would still be sick, ya know?

people react almost immediately? Are some reactions just feelings (stomach pain, restlessness, irritability), and NOT diarrhea?

I don't think I will EVER figure this out!!!!!