Help I Still Feel Lost

[whymychildjo]

Ok here is my issue. About 8 months ago my son was having severe pain in his lower abdomen. After several trips to the doctor with no results except high bills we decided to take him off gluten. It took about 4 months for him to feel better but he did start feeling better. About 2 months ago I accidentally gave him gluten and he had diarrhea and a headache for 2 days.

Lately he has been having a headache at least 2-3 times a week. I was afraid he might be anemic and so we went to the doctor. I told her abut the not eating gluten and him feeling better. She had diagnosed him as being constipated. She ran blood work on him and included a celiac panel. He has not intentional eaten gluten in over 8 months she knew this and still ran the test. I got a report in the mail today saying he did not have celiac. My husband was so excited. I told him the test would not work unless he is eating gluten.

I am going to write the doctor a letter about running the panel knowing my son was not eating wheat. Either she does not know the test has to be ran while the child is still eating wheat or she did not care. Either way she needs to hear about it.

Okay I will quit making this so long. My concern is the headache. I think maybe my son is just getting gluten and that is causing the headaches. Then again he is having them so often it concerns we. We do not have insurance so I do not want to just go haywire running to the doctor for every little pain. Again I do not want to ignore something serious. Can the biopsy for celiac find anything after someone has been off wheat for 8 months? My gut feeling is that he has celiac. The symptoms all point to it. I would be willing to get the biopsy if that could tell us anything. The next way our doctor is going to send us is to a neurologist.

I still feel lost in all this. I just wanted to know if anyone has any ideas.

[Wolicki]

Dont' bother with a biopsy, he's been off gluten for too long. And shame on that doctor for not knowing that being gluten free would affect the tests. Here's the thing: it could be Celiac, or it could be gluten intolerance, which would not show up on a test, though the symptoms are the same.

Have you checked everything for gluten? toothpaste, shampoo, otc and prescription meds, hand lotion, hair gel, all that?

Or perhaps it's a secondary food intolerance?

Think carefully about what has changed.

Is he getting enough water? Headaches can be a sign of dehydration.

[whymychildjo]

Dont' bother with a biopsy, he's been off gluten for too long. And shame on that doctor for not knowing that being gluten free would affect the tests. Here's the thing: it could be Celiac, or it could be gluten intolerance, which would not show up on a test, though the symptoms are the same.

Have you checked everything for gluten? toothpaste, shampoo, otc and prescription meds, hand lotion, hair gel, all that?

Or perhaps it's a secondary food intolerance?

Think carefully about what has changed.

Is he getting enough water? Headaches can be a sign of dehydration.

Thanks I had not checked toothpaste shampoo etc. I was looking this AM and found hydrolized wheat protein in his bodywash. Great! I am poisioning my own child. Thanks for the water suggestion too. I doubt he ever gets as much water as he should. We are going to be more deliberate about it now.

[AlwaysBrightMorningStar]

Okay, something else to consider is cross contamination with his foods. Foods that maybe were processed in a facility that also processes wheat. Checking with all the manufacturers again as they change their products. And also being free of gluten can make a person more sensitive to it when they do have it by accident. Maybe trying to be extra careful with crumbs in the butter and your cooking utensils (Toaster, pots, pans). I have even heard of people that have gone so far as to have seperate sponges for their gluten food vs. their non gluten food. Good luck. Oh and the thing about the biopsy_ i dont think it would show up either because in kids the intestinal damage can repir in 3 to 6 months - so I have read.