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Glutening My Son Before Test But He Is So Miserable.

Calmom

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Calmom Apprentice
Calmom
Posted

My son is getting tested on Wednesday, so his dad and I have been feeding him a high gluten diet. Actually, I am having all three of my kids tested, but he is the only one who displays symptoms. He is not handling it well at all. I picked him up from his dads today only to learn he spent the morning vomiting up bile. Now my son mentioned he thought there was blood mixed in it, but his dad didn't see that. For most of the day he was in agony with heartburn, cramping from diarrhea and he has deep dark circles under his eyes. Since the time I picked him up I fed him a gluten free diet because I couldn't stand to see him suffer.

I am just wondering if he can continue to go gluten free until one or two days before the test. I know it has to be in his system for the test but I can't stand to see him suffer like this. So how long should he be on gluten before the test?

Also should I ask for the full panel for my two non symptomatic children or can we get away with just the gene test?

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Mummyto3 Contributor
Mummyto3
Posted

Is he normally taking in gluten in his diet? If so, I wouldn't have thought you needed to completely gluten him up. My daughter was on her normal diet which incl. gluten when she went for her test and her levels were very high. I wouldn't suggest making him gluten free before any tests but I also don't feel it necessary to gluten him up. Just let him eat his usual diet (if that incl gluten etc.)

I feel for you guys. We're new to this too x

SweetDsMom Newbie
SweetDsMom
Posted

Did your doctor say to do "high" gluten? I ask only because a coworkers doctor told her that even just one sandwhich a day would be enough to get good results.

Also, what test are you doing? The biopsy? And who is pushing for this? I ask only because DH and I don't want to have the biopsy done and thank God DS's doctor agrees. We KNOW he has celiac and I just can't imagine making him sick for days in order to "prove" it.

Maybe when DS is older and he can better understand what's going on, etc, and has a say if he wants it or not. but until then... we don't care about the biopsy.

Good luck. Call your doctor, though, and tell him how your DS is reacting, etc.

Mizzo Enthusiast
Mizzo
Posted

We also were told a whole grain sandwich a day was ample. Our DD was eating about twice that a day when the blood work came back positive. So we were able to reduce it somewhat before the biopsy per GI . I begged for something and she said this was fine.

Calmom Apprentice
Calmom
Posted
  • Author

The Dr.s never told me what to have him eat. I called and requested the test after I was diagnosed.It seems they have looked at everything except celiacs for him. No one ever told me how much eat myself so I just guessed and loaded up. He splits his time between his dads house and my own, but has been eating gluten free at my house. I never had the biopsy done my self, just the blood test and so that was all I was asking for him. The blood test seemed good enough for my Dr.

Mummyto3 Contributor
Mummyto3
Posted

I think the blood test should be enough. But they seem to want a biopsy 'just to be sure'.

dilettantesteph Collaborator
dilettantesteph
Posted

He can always be diagnosed with gluten sensitivity by response to diet. Why does he need the celiac label? Is it worth it?

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Call your dr ASAP and tell him about your son's reaction. He may diagnose based on dieatary response or he may agree to get him in earlier for testing. The only reason to do a gluten challenge is if he has been gluten-free for a good amount of time. If he has just been eating a regualr diet up until now there is no need to gluten him up. But if he was gluten-free for several months prior to this glutening he would need to have that gluten in him for 2-3 months prior to testing. Ether way I do think you should just get him tested right away and go gluten free regardless of the results. Don't even wait for the resutls. If you know keeping him gluten-free makes him better you have your answer. The only obstacles you will have withotu a formal diagnosis will be getting his dad to agree and feed him gluten-free and also gettign the school system to cooperate.

Calmom Apprentice
Calmom
Posted
  • Author

As soon as his test is over Wednesday he is definitely going gluten free. While I have no doubts in my mind that he has celiacs, I am afraid its going to take a positive test to convince his dad and step mom to be as careful as the need to be. This already is a huge worry for me.

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