Testing My Child

[concerned mother]

I have a child that will be 3 this June. He has had issues since he was about 6 months old with diarrhea and very slow weight gain. We did an elimination diet and as a nursing mother, I had to take gluten and milk out of my diet. Now I have never gone through the whole gluten free thing, so there may still be some hidden glutens that I am missing. He is still on the small side. He had the wasted muscles and the bloated belly at that time. There have been other little issues since all of this started and now the doctor wants to do a full celiac workup. I do not know that I am ready for this as he gets very sick when he ingests gluten. I do want to know what is going on, but I am very hesitant to reintroduce gluten. Has anyone else had a similiar experience? What did you decide to do? He recently had a seizure and I have been reading where there is concerns where gluten ingestion in gluten intolerant people may be a cause of seizures. We are desperately searching for answers, but at what cost.

[mushroom]

I have a child that will be 3 this June. He has had issues since he was about 6 months old with diarrhea and very slow weight gain. We did an elimination diet and as a nursing mother, I had to take gluten and milk out of my diet. Now I have never gone through the whole gluten free thing, so there may still be some hidden glutens that I am missing. He is still on the small side. He had the wasted muscles and the bloated belly at that time. There have been other little issues since all of this started and now the doctor wants to do a full celiac workup. I do not know that I am ready for this as he gets very sick when he ingests gluten. I do want to know what is going on, but I am very hesitant to reintroduce gluten. Has anyone else had a similiar experience? What did you decide to do? He recently had a seizure and I have been reading where there is concerns where gluten ingestion in gluten intolerant people may be a cause of seizures. We are desperately searching for answers, but at what cost.

Hello, and welcome to the board.

There are of course risks with reintroducing gluten in one who seems to be very sensitive. I cannot know, of course, how diligent you have been in avoiding gluten. I do know that it is very hard to avoid unless you are totally dedicated to the task. But I don't blame you for being reluctant to feed him enough gluten for a long enough time for him to have a possibility of testing positive on the celiac tests, both blood and biopsy. In order to be valid it would need to be for at least two months, and very few of the posters on this forum have made it through the whole two months.

As to the seizure issue, I had a brother who was born with many health problems including overall eczema and jaundice, and who had a lot of developmental problems including failure to thrive. As I was only 16 months older than him the only details I have are anecdotal. But I do know that later in his life he developed a non-specific seizure disorder which I witnessed, and it was from complications of this that the died (injury) . He also, in retrospect, now that I know the symptoms, exhibited so many of the symptoms of celiac and it does run in the family (an older sister and her daughter. and I wouldn't be surprised if both of my parents had it), and certainly my middle sister has problems she refuses to recognize.

If I were you I think I would first try being extremely diligent in eliminating all traces of gluten from your son's diet to see if he improves, rather than putting him through the barbaric challenge process just for the doctor's satisfaction. Read all you can about where gluten lurks, deglutenize your whole household, and keep him safe, and see how he does. If he does not improve with doing this, what good is a celiac diagnosis going to do him, because this is the prescription for a celiac too Your husband could eat as much gluten as he wanted outside the house, but is very hard to eliminate cross-contamination in a mixed household.

You will get opinions from others, I hope, but that is what I would do.

[mommida]

I am not a huge fan of the genetic testing, but it seems like the best test for your child right now. You can still have false negatives and not all Celiac genes have been identified.

A gluten challenge can be dangerous. My 16 month old ended up hospitalized for the dehydration brought on by the gluten challenge. Blood test was done before she got too sick. Endoscopy was not done because of the situation. Genetic testing was the only option and was positive for DQ2 and DQ8.

When my daughter was 6 she was diagnosed with Eosinophilic Esophagitus. It is also auto-immune disorder with a "trigger" "allergen".

Proper testing and diagnoses is very important, but at what cost to the patient.....

[tarnalberry]

If you haven't dealt with "small sources" like soy sauce and cheerios, or contamination sources like shared toasters and cutting boards, he's not gluten free. You could try the blood test (realizing that it has a greater than normal chance of false negative) and the genetic test, but also try taking him completely gluten free (after any blood tests, of course.)