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I Have Question About Testing

misgiss

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misgiss Apprentice
misgiss
Posted

We got results back of blood test and they were negative. Doc said there is 15% chance of false neg. So he's doing another test he had to get a special kit for that is more specific for celiac and said that there is <5% chance of false neg with this one. If it comes back neg is it safe to assume that he's NOT celiac and that something else is going on? Doc doesn't want to do biopsy (I agree).

We are going in tomorrow (mon) morning for ultrasound and ct scan of abdomen. Just to make sure everything is right shape and size. Doc wants to not focus on one disease but gather info and go from there.

I should mention we are americans living in Japan doing all of this. I have great faith in this doc. He speaks english fluently (thank god) so communicating with him is very easy. After we get results from scan back we will probably see ped gi specialist.

Anyone else have experience like this? Fit celiac profile but negative tests. I would also like to mention that we tried the diet for a couple days (I know, not long enough) and saw improvment in mood. He seemed much happier and easier to get along with. He is pretty easy going as it is but saw big difference. Going gluten-free here is EXTREMELY hard. Can't read ANY ingredients and have already spent a small fortune on having mil ship food to us. We are here until sometime in Oct. so feeding a toddler for the next 4-5 mo on food we have to have sent to us would be so expensive. I mean, how much meat, rice and fruit can I give him? He 's not all that picky but is hesitant to try new foods. Plus, a baby canteloup is $10 and a watermelon is $35. Groceries, in general are pretty spendy compared to US.

And I almost forgot to mention that out of all the tests he did the only one that came back other than normal is his pancreas. The normal range is 60-150 and his levels came back at 28. So I'm taking a stoll sample in when we go for the scans so they can test the fat and enzyme content.

Sorry I ended up rambling. Any and all info is welcome. TIA

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inquirer Newbie
inquirer
Posted

If you read the posts here, you will see that many tested negative but found positive results going gluten free. You seem to have answered your own question when you said he seemed so much happier after only a couple of days. Maybe you could find someone who speaks Japanese and English to help you go through some of the products so you can find some that are gluten free. When you get back in the States you can always have him tested by Enterolab. He won't have to eat gluten before their test and it will help you confirm whether or not gluten is a permanent problem.

Ursa Major Collaborator
Ursa Major
Posted
I mean, how much meat, rice and fruit can I give him?

Hi, and welcome to this board. Well, to answer the above quote: What is wrong with those foods? Plus, what about veggies? A two-year-old doesn't know you're 'supposed' to eat bread, crackers, cookies etc. If you just feed him naturally gluten free foods, he'll think that is the normal thing to do (which, really it is, that's all I can eat, and I can't even eat fruits for the most part).

Just make sure he gets enough fat, children need more fat than adults to grow and be healthy (and I mean saturated fats).

The prices for melons really are outrageous. I would just stick with foods that are reasonably priced. And make the foods that have to be shipped from home a rare, special treat. They aren't needed to be happy and healthy.

Your son doesn't know he has a problem, and after a day or two of fussing for his starchy foods, he'll forget they exist. You're the one who feels deprived when giving your son the naturally gluten free foods! Just remember, it's all about his health and happiness. If he is happy on rice, meat, fruit and veggies, you might as well be happy, too!

wonkabar Contributor
wonkabar
Posted
Anyone else have experience like this? Fit celiac profile but negative tests. I would also like to mention that we tried the diet for a couple days (I know, not long enough) and saw improvment in mood. He seemed much happier and easier to get along with. He is pretty easy going as it is but saw big difference. Going gluten-free here is EXTREMELY hard.

Hi Tia! Yes, that certainly sounds familiar to me! My just 3 year old son is highly symptomatic of celiac disease, however he had negative lab results and there's never been failure to thrive so it's very difficult to get a pediatric gi recognize something IS actually wrong. I'm not at all surprised you saw a positive change in your son just a couple days after starting the gluten free diet. My son showed an immediate change in mood and behavior, as well. Zachary is typically an easy going child with a pleasant disposition. However, his behavior and disposition are just awful when he ingests gluten. It is truly amazing to see how much and how quickly gluten effects him. He's sleeping better, his poops are normal, no more blistering-bleeding diaper rashes and so on. I'd never put him back on gluten regardless of what any doctor told me. It does terrible things to him. We're not willing to wait years and years for there to be major damage to his intenstines to result in a positive biopsy. We KNOW he's got major problems with gluten. I quite frankly think it is celiac but just didn't get to the advanced stage of villi atrophy. But, who the hell do I think am?? His mother??!!??!! :lol: Do remember, though, if you're going to pursue additional blood tests and biopsy, your son must be on a regular diet in order to get "accurate" results. I say "accurate" b/c everything I've read independently, and on this forum, has strongly suggested that labs and biopsy aren't very reliable under the age of 5.

Starting a gluten free diet is hard enough in the states, never mind in Japan. It'll get easier when you return in a few months. Once you learn the language of The Land of Gluten it becomes second nature. You'll never look at a food label the same way again. I agree with Ursala in that he is still young and really doesn't know any better. That's the general attitude my husband and I have taken. This is simply the way it is. If I ate half as healthy as I feed my kids I'd drop 20 lbs. :) Zachary is a very good eater and not picky which certainly makes it easier. He does have gluten-free nuggets, fish sticks and a variety of kid-friendly snacks which you'll be able to access more readily (and cheaper) here in the states.

--Kristy

TCA Contributor
TCA
Posted

My son had 2 neg. biopsies and inconclusive bloodwork with a very hight IgG and a slightly elevated IgA. We did a diet trial and he's a different child without gluten. D has stopped, he potty trained in 3 weeks, rashes gone, growth taking off, moods better. It really is a miracle.

Can you get rice flours and such there? I would think this would be common. It takes some practice, but you might be surprised what you could make yourself, just substitue for the other ingredients. There are lots of recipes here.

Good luck and I hope you find your answers soon.

misgiss Apprentice
misgiss
Posted
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I should also mention he has dairy, casein, and multiple nut allergies. So I have a hard time giving him fat. And he just recently tested neg to egg allergy so we hard boiled some eggs and he LOVES the whites.

We are also checking out pancreatic insufficiency. His levels were at 28 and "normal" is 60-150. Am taking stool sample in for more tests on enzymes.

I'll keep you posted.

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