Where Do I Start?

[gemma123]

Where do I even start?

My oldest son will be 7 in March and for a couple of years I have suspected a gluten allergy. He has a constant runny nose, belly aches, diarrhea, mood swings, OCD, temper tantrums, joint pain...

He has been hospitalized twice over these things, though I think one of those times it was due to a allergic rx to the serum in a vaccination (a whole other long story). The last hospitalization in Sept they did a bunch of tests but everyone of them came back negative. Could he have a negative result to a celiac test but still be gluten intolerant?

Last night we had pizza for dinner and we had a terrible morning (temper tantrums ect).

Could it be related to gluten or am I way off here? I really don`t know where to start with him or what to do.

Thanks

[srall]

Short answer: Yes, he can most definitely test negative for celiac and still be gluten intolerant.

If you suspect gluten why don't you take it out of his diet for a couple of weeks and see if some issues clear up?

When we went out for pizza with my daughter she could barely make it home before the D started. She's dairy intolerant too so it was a double whammy.

(BTW: my daughter tested negative for celiac)

[missy'smom]

It's definitely possible. It is known that the blood tests have a certain rate of false negatives. My son had a neg. panel. He also had a reaction to a frozen pizza(vomiting and a little rash) which contains many allergens so that prompted me to start allergy testing and explore that avenue. He tested pos. to wheat in both blood and skin testing. The allergist completely dismissed those results however, I did not. We did a dietary experiment taking him off gluten for one month and the re-introducing it and found that his chronic eczema cleared up and didn't come back, that is until gluten was re-introduced. At some point we also had stool testing done through Enterolabs and that showed elevated antibodies. So, long story short, there are still some avenues to be explored to help you get a clearer picture. We got ourselves a new allergist BTW one who support eliminating foods even if they don't produce anaphylaxis. We are considering gene testing too because as my son gets older it will be harder for him to stick with the diet without an offical DX and without symptoms that are noticable to/uncomfortable for him. It was my choice/decision to take him gluten-free, no healthcare provider had said that he should be.

My son has an ADHD DX and we have seen the best progress with that by addressing all the allergies that turned up with testing. A heavy environmental load and several other food allergies.

[domesticactivist]

Your child's symptoms sound a lot like my son's. Cutting out gluten eliminated his tummy aches and joint problems (and they come back when he gets glutened), cutting out corn eliminated (after several weeks) his stuffed up head, sinuses, ears and runny nose (also comes back if he gets some). His bahavior, attention, and dyslexia issues are also MUCH better. He's suddenly having a language explosion where it's finally making sense to him (he's 10). This had started improving before we cut gluten, but he's been noticeably even better since. Getting glutened makes him revert.

We haven't had any testing for celiac done yet, and we won't be able to do the blood or endo because we've taken him off gluten completely and plan to stay that way. We are going to get some genetic testing done, just to see if we have the obvious risk factors, and his sister is going to get the blood work.

My dr said that if we know what works and we are all willing to stick with the plan, there is no reason to do further testing that requires him to expose himself to gluten again.

[gemma123]

Thanks for the replies. I think I am going to start a food journal and see what he`s eating before some of these symptoms show and go from there.

[Roda]

My oldest son has had testing for celiac 3 times and every one was negative. He too has enviornmental allergies that he has been doing imunotherapy for since he was 6 (he is almost 10 now). He recently was reallergy tested and while some of his previous allergies resolved, he still had some of the original allergies and two new ones. He started on new allergy injections yesterday and his NP at the allergy office told me that he needs to avoid wheat/gluten along with my youngest son (6yrs who is gluten free since Nov. due to a positive ttg, so is celiac). He said that even though his celiac tests were negative that he feels he is intolerent. I think given his history of all the IgE allergies, mine and his brothers hx, and hx of bowel issues until about 4 that is why he thinks this. We have gotten tremendous relief and benefit out of the imunotherapy with his chronic sinusitis and very rarely gets infections anymore. So I've got to convince my husband (and son) that gluten free is the way to go with him. I'm going to have the NP talk to my husband about this so we can get the 10 yr old started gluten free soon (I hope). Also my youngest son who has been home from school on Christmas break and an extra week due to school cancellations has had a resurge of his "temper tantrums". He was home for almost 3 weeks in a very controlled environment and started school back on Tuesday He was fine the whole time he was off despite going to bed late. By Wed. afternoon the mood swings started, had a temper tantrum and then hit his brother across the knee hard with a metal handle. The only thing different is that he went back to school. I believe he is getting CC'd and I had to go have a talk with the school. I'm going to be monitoring things next week to see if the recomendations I made are being met.