Random Stomach Aches, But Did Not Test Positive For Celiac

[mommyto2kids]

He is 8 and was tested last fall for celiac since I found out last year I have it. Son had a bad stomach ache yesterday. They are random. They appear in the afternoon and when he is more tired. Lots of times before swim practice or during. He appears like he is telling the truth. He thinks he has one. Sometimes he does not want to swim I know. Any thoughts what to try. We take out milk from time to time, but doesn't seem to make a big difference. How do we help them feel better when they hurt in their stomach? We cut back gluten, not out.

[Jestgar]

Do you keep a food diary? It might help you pinpoint what's going on.

[MaryFrancesGFCS]

My husband has celiac and I have a wheat allergy, so we too have been proactive about having our kids tested for celiac. Our oldest tested negative with the blood test when he was 4. But, he continued to have very loose BMs and complained of stomach aches. We recently just went ahead and took out all cow milk (which I have always had issues with) and all gluten for all 3 of our kids. Within days, our oldest was handling his emotions better, the 3 yr old was able to control his BMs enough to start doing them in the potty consistently, and our 3 yr old and 2 yr old both started talking much more.

We were all glutened at a restaurant last week and my oldest mentioned that his BM was much looser the next day, 3rd didn't make it to the bathroom in time, and 2 yr old had a huge diaper blowout. That was all the confirmation that I needed that we all need to be gluten-free.

I had procrastinated on doing a gluten-free trial with all of them, because it IS easier to feed them wheat products. But, I'm glad ahead that I went ahead and did it.

P.S. My wheat allergy manifests in my gut, so the wheat can still cause intestinal issues even if the celiac test is negative.

Mary Frances

[Mom2J112903]

Have they done any other GI testing? Could be a number of different things but the least invasive and the one that would give immediate answers would be an UGI w/SBFT which is an Upper GI w/ Small Bowel Follow Thru. Basically they watch him drink som barrium and then take x-rays at certain intervals until the barrium goes all the way thru the small bowel. Another, while not fun, but provides answers without anethesia would be a barium enema.

[Roda]

You could have him retested again and then trial him gluten free after all the testing you are going to have done is complete.

My oldest son(11) has tested negative on blood work since 2008 and he had been tested at least 4 times. He was complaining of daily stomach aches, bloating and gas and occasional heartburn. He quit growing and hadn't grown/gained weight in a whole year. I decided last summer to consult a pediatric GI. She agreed with the family history(mom and younger brother diagnosed celiac) to redo the blood work and do a scope/biopsy on him. Again the blood work was negative and so was the biopsy.

A week after his scope he started on a three month trial of gluten free(GI aware I was doing this). We saw results after about a month. He gained 6 lbs. the first month gluten free and the GI thought he was more pink! After the three months all of his other symptoms resolved and he started growing. GI won't diagnose him celiac obviously, but believes he is gluten intolerent. After three months he did challenge with gluten and had some minor symptoms. I laid all the pros/cons of eating gluten free and eating a regular gluten diet out for him. He decided eating gluten free wasn't that bad(ate very gluten light at home anyway by default), liked the fact he was starting to grow and liked that he didn't have daily stomach aches. He chose to stay gluten free.

He goes for a follow up this month. It's been almost a year since we first saw the GI. I'm curious to see how much he has gained/grown since his first visit.

[VydorScope]

He is 8 and was tested last fall for celiac since I found out last year I have it. Son had a bad stomach ache yesterday. They are random. They appear in the afternoon and when he is more tired. Lots of times before swim practice or during. He appears like he is telling the truth. He thinks he has one. Sometimes he does not want to swim I know. Any thoughts what to try. We take out milk from time to time, but doesn't seem to make a big difference. How do we help them feel better when they hurt in their stomach? We cut back gluten, not out.

Couple of things...

First, start a food diary. Record exactly what he eats, and the time that he eats it. Do not just write generic like "a sandwich" put down all the ingredients, and brands where applicable, so that days later you can look back and know exactly what he at. Every time he has a stomach ache, write that down in your food diary with the time and severity.

After you have a good amount of data collected start looking for patterns, for example "Every time he had raisin brand for breakfast, at lunch he was complaining of stomach ache, but on the days he had fruity pebbles he did not." GI issues can be really slow and drawn out in their response so do not look at current meal only, look at least a full 24 hours. The details matter here it might be that he eats Quaker Rice Cakes and has a problem, but no problem with store brand rice cakes. That is important information to have.

If a pattern arises like that one then you eliminate the problem foods and carry on. Keep doing this until he is better. Once that happens look at what is common in the foods you removed. That common thing could be the problem. Add it back in and see what happens. If issues return, then you found your smoking gun. If it is more then one common thing, only add one back at a time and give it at least several weeks before adding another. Keep in mind it could be more then one thing so make sure you only add 1 thing at a time when he is not having problems.

For example if gluten and dairy show up as possible issues in your log, add just dairy back in. Wait several weeks, if he gets sick again, pull out the dairy and wait until he is better before adding gluten.

Second... you will want to talk to good children's GI doc to make sure there is not something else going on. They will likely ask you about what he is eating so the food diary will be a great help for that. I would start the diary right away, and sched a GI visit for as soon as you can reasonably get in.

Third there appears to be some kind of switch in many people with Celiac. It is possible your son now has celiac disease, but did not have any issues back in the Fall when he was tested. It is not unreasonable to ask for another test, nor will it be next year if he does not come back positive now. This board is filled with stories of that kind of thing happening. If he does retest as positive, well you your answer. If not, then the answer still might be gluten, the food diary will prove that out.