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Test Results Back

kennessee

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kennessee Newbie
kennessee
Posted

The doctor called today and said that the results for my 4.5 year old were normal and he tested negative for celiac disease. The dr. wants me to keep him on the appetite stimulant and see how much he weighs at his 5 year appt. I am not sure how I feel about this. I guess I was kind of hoping he'd test positive because then that would explain why he has no appetite and has a really slow weight gain. I've been telling myself for years that he gains slowly because he didn't gain the first two months and his father was a slow weight gainer too. His dad weighed 18lbs at 1 year. My son weighed 16lbs at 1 year. I am more worried about his lack of appetite. Without the appetite stimulant, I would have remind him to eat and spoon food in his mouth to get him to eat an adequate amount. I thought my 3 year old for sure had celiac as well b/c he is 30lbs at 3 and has a somewhat distended belly. I always thought it was a toddler belly. Last night, after dinner( which was frozen chicken nuggets and french fries ), his belly was very distended starting right below his sternum and bulging out. It was completely hard... no soft spots at all. He's been like this since forever. He woke up and his belly wasn't as distended anymore. This all so confusing to me. I thought about putting them on a gluten-free diet for a couple months to see how they do but I wouldn't even know where to start. Maybe they are just going to be skinny kids?! I'm so tired of stressing about my 4 year old's weight.

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MacieMay Explorer
MacieMay
Posted

We've had negative results too (gene, biopsy, and two blood celiac panels) but that didn't mean there wasn't anything wrong with her. There was something wrong and gluten-free diet helped. GI finally diagnosed her with an gluten intolerance because of her positive result to the diet. Try it and see how they do. good luck!

kennessee Newbie
kennessee
Posted
  • Author

Thanks for replying, Macie. I am not even sure where to start with eliminating gluten. It seems it's hidden in many things. And right now my 4 year olds favorite food is breaded chicken nuggets. I'm going to be doing some massive research and start the gluten-diet. It certainly couldn't hurt anything. I'm a bit annoyed the pediatrician won't refer me to get him tested for other food allergies. He just told me to eliminate it ( dairy ) and try it.

ravenwoodglass Mentor
ravenwoodglass
Posted

Where do you start, well right here. Go to the home page where they have lists of allowed and not allowed foods. Ask all questions you need to here and someone is sure to have an answer that will be helpful.

False negatives in children are even more common than for adults so it is really worth a shot to give the diet a good strict try for a couple of months at least.

That your child strongly prefers gluten foods is IMHO a sign that you need to avoid them. I wish I had listened to my mothers intuition when all my son would eat was pasta. There are gluten free chicken nuggets, Ians is one company or you could make your own in bulk and freeze. If you check out the recipe section you may find someone has posted a recipe if not ask and I am sure someone will have one.

Go with as much whole unprocessed food as you can at first. Cut up fruits and veggies for snacks, have the kids help you make 'snack trays' perhaps with funny faces or fruit animals. Doing that will encourage them to eat them. Have them help with dinner prep, if kids help prepare food, even if it is just stiring or pouring some ingredients it may make them more likely to eat something unfamiliar. There are gluten free replacements for a lot of stuff. Ask for opinions on which are liked the best. Even though people have different tastes it can give you a starting point. If you have a Wegmans close by they label all the name brand stuff that is safe with a circle G. Kraft and Unilever will clearly label gluten ingredients so if you don't see wheat, rye, barley or oats there it is safe.

With little ones it can be hard to get them to eat things they haven't before but they will get used to it. If you make the whole house gluten free that will help. It will be really hard on them to eat apples and bananas and gluten free cookies or crackers if they know there are Oreos in the cupboard. Also celiac is strongly genetic and doesn't always present as just upset tummy and poor growth. You may find after a while gluten free that you and or Dad feel better also.

Dixiebell Contributor
Dixiebell
Posted

See if you might be interested in the book Living Gluten Free for Dummies. My sister got me mine for my b-day and I have enjoyed it. There are a some recipes and lots of good information.

My son likes when I make chicken tenders and coat them with his melted butter and seasoned cornmeal and bake them in the oven. Some people even use crushed corn chex for a coating. Almost anything can be made gluten-free.

salexander421 Enthusiast
salexander421
Posted

I agree, I would definitely try the diet for a few months and see how it goes. False negatives are common, especially in kids, and even if he is really negative for celiac he could still be gluten intolerant. Ian's gluten free chicken nuggets are really good, my girl's love them and they make fish sticks too. If he likes pasta there are really good gluten free noodles out there and you can even find gluten free mac and cheese! If you have a health food store nearby or health food section in your grocery store that helps a lot. Fruits and veggies are naturally gluten free. Sometimes doctor's are no help at all, this board is a great place for you to get advice and answers!

Ada-B Newbie
Ada-B
Posted

Boy, I've been there, with a 'failure-to-thrive', food-avoidant, food-phobic pre-schooler who seemed incapable of gaining weight. I remember force feeding my daughter chocolate digestives to fatten her up, and it still didn't work (she vomited it up and then sat on the toilet).

The only things she'd eat were chicken nuggets and chips, and rice cakes. Then she'd only eat rice cakes and at that point, we really panicked.

She's now 16 and still having gut problems, still negative for celiacs, but she's a healthy weight so much better in many respects.

So what would I have done different? I'd have put her on the gluten-free diet and kept a food/symptoms diary. It's much easier when they're toddlers and eat pretty much what they're given. Try not to panic about the amounts your child eats and do everything you can to keep mealtimes fun and happy, even if she eats practically nothing. It is amazing how little food they can survive on - we used to joke mine absorbed energy from sunlight, like a plant (a very skinny plant). But do try gluten-free chicken nuggets, and you could get some gluten-free breadcrumbs and try disguising other foods too - my daughter was easily conned by the breadcrumb coating.

All the best.

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kennessee Newbie
kennessee
Posted
  • Author

I went out today and bought some gluten-free stuff: chicken nuggets, mac and cheese, snack type stuff. It's expensive, that's for sure! Is cornmeal fine for coating chicken? I bought lots of frozen chicken and decided I would coat them with cornmeal or Bisquick Gluten-Free coating. I went in and got the blood results so I could see them and the dr only ordered 2 tests out of the 5 or 6 on the celiac panel. He ordered the Endomysial Antibody IgA and the t-Transglutaminase (tTG) IgA. The Endomysial Antibody IgA said negative and the tTG IgA said <1 negative. Those were the only 2 he tested. Just testing these two would the results be conclusive to negative? Or should the doctor have ordered all of them?

ravenwoodglass Mentor
ravenwoodglass
Posted

I went out today and bought some gluten-free stuff: chicken nuggets, mac and cheese, snack type stuff. It's expensive, that's for sure! Is cornmeal fine for coating chicken? I bought lots of frozen chicken and decided I would coat them with cornmeal or Bisquick Gluten-Free coating. I went in and got the blood results so I could see them and the dr only ordered 2 tests out of the 5 or 6 on the celiac panel. He ordered the Endomysial Antibody IgA and the t-Transglutaminase (tTG) IgA. The Endomysial Antibody IgA said negative and the tTG IgA said <1 negative. Those were the only 2 he tested. Just testing these two would the results be conclusive to negative? Or should the doctor have ordered all of them?

None of the tests are really conclusive unfortunately. Did your doctor do a total IGA? There are quite a few of us who are IGA deficient which will make the IGA testing consistantly negative even if we are celiac.

kennessee Newbie
kennessee
Posted
  • Author

None of the tests are really conclusive unfortunately. Did your doctor do a total IGA? There are quite a few of us who are IGA deficient which will make the IGA testing consistantly negative even if we are celiac.

I don't know if they did a total IGA. All the paperwork said was "Endomysial Antibody IgA and t-Transglutaminase ( tTG) IgA" that was it.

Takala Enthusiast
Takala
Posted

Is it gluten free cornmeal or regular ? You need gluten free because of cross contamination issues with some manufacturers, who are getting their corn from storage distributors with corn that may have been combined harvested, or stored with traces of wheat. That is the problem with Bob's Red Mill, they make a lot of cornmeal BUT look at the packages, only the cornbread mix is labeled "gluten free." Others like Quaker, alas, are not gluten free, either.

You can use gluten free crushed Corn Chex cereal - a bit sweet, but this is for a kid, after all.

Bisquick is mostly a rice and sugar/salt coating. You may want to mix in some other type of gluten free flour, depending on what kinds you have available.

One of the better commercial blends is Pamela's, but read the label in case you are avoiding one of the other ingredients.

If you are mixing flours, typically a 3 way mixture of almost anything works better than a single type. Typical "white" gluten-free mixes are rice/tapioca/cornstarch or rice/tapioca/potato starch or rice/arrowroot/some other kind of gluten free flour, such as sorghum. Then usually a small amount of zanthan gum is added per cup of measurement, like about a teaspoon.

I use a lot of "brown" gluten-free mix, like almond/amaranth/sorghum and this comes out close to a fine cornmeal and doesn't need much gum, as long as egg is used. Even half amaranth/sorghum can be used for dredging chicken or fish. I think some people have tried it with dried mashed potato flakes, too.

Re the mac 'n cheese, you can buy gluten free pasta, and just add your own version of a cheese sauce, you may want to use gluten free dairy free cheese, (yes, they make such a thing) if it turns out he can't handle dairy, either. Sometimes you have to search for recipes that are gluten free vegan to find ideas that will work. Open Original Shared Link

Open Original Shared Link

_____

re the tests, from what I have read here, if those two are negative, they're negative. But.... just because the blood test is negative.... if there are symptoms, that shows something is wrong. A kid who is not hungry is not normal.

tarnalberry Community Regular
tarnalberry
Posted

Your doc screwed up the testing. Those IgA tests are useless without a total IgA to see if he's IgA deficient, and he should have done the IgG tests as well.

I also recommend trying the diet. It will be a lot of work, especially as you try to move a picky eater to new foods, but it's worth it to find out if the dietary changes make a difference.

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