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...of All The Things To Pass On...

scotty

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scotty Explorer
scotty
Posted

can anyone tell me the best or most reliable test to do on a child of 7? one to see if he is a Celiac that is; or even other allergies?

i won't get into details about whats going on other than striking similarities to my youth; as far as eating and going patterns i'll just say. i'm convinced at least!! but i don't want to put him through alot of run around like i have had--and alot of misdiagnosis.

he has CP too; which makes communication difficult and near impossible at times; but it is a physical CP not mental is the way we always describe it (and understand it). but as far as him saying "my tummy hurts," and "all this does that or this does this to me," aint gonna happen...he has yet to develop the ability to form speech and such; lot of pointing and head shaking and beginnings of sign language

anyways, i'm sure we would see a turn around and all, but that is a complete change of lifestyle; something i don't really control or deal with day to day. we work together for the best of him and (I) need something convincing and damn near foolproof here; a shot at just trying the diet won't last i know it. how detectable and reliable are these tests for kids? what are the chances of doing one and bingo bango we have Dx?

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cruelshoes Enthusiast
cruelshoes
Posted

My son was 6 when he got his "Gold standard" diagnosis (positive bloodwork/positive biopsy). He had no outward symptoms, but his ttg was nearly as high as mine was and I had total villous atrophy. There was no doubt at all about his results with one blood draw and one biopsy. The whole diagnosis process took 2 doctor visits.

If I had it to do all over again, i would follow the same course. I think there is so much to be gained by getting a diagnosis, especially on a child. Is he in a mainstream school? If so, you will probably want a 504 for celiac to go with whatever IEP or 504 you already have to go with his CP. This is very difficult to get without a diagnosis.

happygirl Collaborator
happygirl
Posted

The first step is a blood test:

Open Original Shared Link

Serologic panel

Of the commercially available serologic tests that aid in the diagnosis of celiac disease, no one test is ideal. Using multiple serologies increases the diagnostic yield. Therefore, in the United States, screening in patients with possible celiac disease should consist of a panel of the following serologic tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Darn210 Enthusiast
Darn210
Posted

My daughter had positive serology at age 6. I think you've got a chance . . . 3 and under is pretty tough. Both my daughter's pediatrician and her GI think the scratch test is more reliable than the blood test for allergies. We are headed to an allergist next . . . but that's a long story.

Have you been diagnosed? It's somewhat implied but not really stated. Are you following a gluten free diet? We started my son on a gluten-free diet because of a partial positive blood test but mostly because he is so small for his age. It would have been tough to do if it had just been for him but since we were already doing it for my daughter, it required very little extra effort. We also have a predetermined amount of time of 6 months. If we don't see a jump on his growth curve, then he'll be done (with blood screenings every year or two). Do you think that you would be able to stick with it for a couple of months - and then see how/if he improves?

Bingo-Bango DX? Would be nice, but I wouldn't bet on it. Good Luck.

buffettbride Enthusiast
buffettbride
Posted

In addition to the bloodwork and/or biopsy, you could also have the gene testing done to see if he is dq2 or dq8. That wouldn't necessarily diagnose him, but it would give you a good idea if he is more prone to Celac as well.

scotty Explorer
scotty
Posted
  • Author

well to just try and answer everyone in one post here:

thanks...

most of it is jargon or vocabulary i am unfamiliar with. i have had no tests other than endoscopy which they told me everything looks fine after i gagged down the instrument before going out--i was so sick and shall i say raw in my pits and crevices. i had bloodwork done but for anemia and things like bloodsugar. i was never mentioned by either doctor or GI specialist of the existence of Celiac. i assumed an IBS that was uncurable for the longest time. 5 years? then kind folks like yourselves on an IBS site said i try a gluten free diet when i explained my symptoms or my lack of foods that work. i was eating rice and tuna and bananas and mushrooms--perfect breeding ground for candida (i learn after finding this fantastic site. while before--my legs swelled so i could not walk, felt stuffed with cobwebs or something; had tests done that told me nothing. asked the doctor why my tongue hurt so bad to even move a bit..."i don't know. thats not right." :huh:).

i have been on a gluten free diet for a month and a half--due to the fact that the first 6 months were complete hell and so awful that i was not gluten free though trying like crazy. sept 1 i started over. makes it easier to handle bad days and the waiting when i tell myself "well it has only been a month yet". obviuosly i need a new doctor. someone that knows nutrition and knows the disease, perhaps someone that can see my son. unfortunately, i am pre-existing. it's a real trap. but he is taken care of.

i'm trying this and trying that and going up and going down. i just recently firgured out eggs just are not going to work right now. it takes me a few tries cuz i just want to wolf like the rest of the world assuming aggravations still linger from other things. i don't do dairy, not even not right now. casein, soy, corn, carbs, sugar what are those :) i eat meats and veggies and wish wish wish i could eat fruits but it seems i have an IC problem. i will be trying though cuz they are the best i tell you. bladder flares, citric acid intolerance of sorts. i do most the determing on my own after much much research, trial, error, and asking you wonderful people who know this terrible disease and deal everyday with it just like me. i just would like that my son receive better opportunity than those youthful years i lost literally wasting and starving, but not speaking up about it--as i said i have not been able to afford alot of tests; but i can feel the horizon beginning to flow in.

with that all said, and background caught up--i have forgotten what you guys told me... but it is always here and saved and i thank you. i just don't want to go in blind to this thing. and the way it works: his mother does the leg work; i take him to the appointments. yet this gives me more direction on what to research and approach; as to her, who i cannot see taking the full responsibility it takes to see a turn around with trying, though it is worth suggesting...she is already disgusted with the possibility considering what i have enlightned her about what i go through; unless of course he is Dxed; then she will i'm sure.

gfpaperdoll Rookie
gfpaperdoll
Posted

Just spend the money & get the kid tested at Enterolab.com

no doctors orders needed & they will test for soy, dairy, egg, & gluten...

That is the best because if it is gluten intolerance the doctors will totally miss it. AND if he has neurological issues it could most likely be gluten intolerance. which I think is really worse than celiac because it seems to attack the brain & other organs before it does it's damage on the gut.

you will probably take some time to heal, in time you should be able to eat more fruits. Citrus is very hard to digest, better to start with something like a pear or an apple both of which can be baked. maybe get organic or peel. also be careful of tomatoes & peaches which are also very acidic. potatoes, tomatoes, peppers, eggplant... are in the nightshade family & might also be a problem at first. it does get better.

try adding in some kale, jicama, baked sweet potatoes, cabbage, carrots...

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scotty Explorer
scotty
Posted
  • Author

Just spend the money & get the kid tested at Enterolab.com

no doctors orders needed & they will test for soy, dairy, egg, & gluten...

ok i'm not worried about my son he is taken care of and yes he will be tested. i will check out this Enterolab.com. that could be really good idea we will see

i think i have to figure out other things here first. like, and most recently, Tyson chicken for some reason i think is bothering; which i checked with manufacturer and seems it should not...? could still be the eggs i'm trying to weed out. but there it goes--trying to pinpoint is such a pain my ee-aw!

appreciate it

gfpaperdoll Rookie
gfpaperdoll
Posted

I do not buy Tyson chicken, not sure but I think if you check carefully you will find that it has a broth on it that contains soy. You probably have a problem with soy - if that is the case with the chicken. I also do not tolerate much soy, which is also in canned tuna...

scotty Explorer
scotty
Posted
  • Author
I do not buy Tyson chicken, not sure but I think if you check carefully you will find that it has a broth on it that contains soy. You probably have a problem with soy - if that is the case with the chicken. I also do not tolerate much soy, which is also in canned tuna...

haha!! not like funny haha maybe ahah! your darn right i can't have soy!!! lousy bastards. i even told them at Tyson of all my allergies and things that just don't work. they said rosemary. they said chicken broth sea salt and rosemary which was the secret special 'natural flavoring'--nothing about soy!! i knew it had broth but it said chicken so i thought i would be fine. oh i know it is not going to work beside and have already cut it; but that might explain the past few days. i found tuna that does not have soy though woohoo!!

thanks again

cruelshoes Enthusiast
cruelshoes
Posted
haha!! not like funny haha maybe ahah! your darn right i can't have soy!!! lousy bastards. i even told them at Tyson of all my allergies and things that just don't work. they said rosemary. they said chicken broth sea salt and rosemary which was the secret special 'natural flavoring'--nothing about soy!! i knew it had broth but it said chicken so i thought i would be fine. oh i know it is not going to work beside and have already cut it; but that might explain the past few days. i found tuna that does not have soy though woohoo!!

thanks again

With the new labeling laws, soy would have to be declared on the label because it is one of the "big 8" allergens. If there is soy in the product, i would have to be celarly labeled like "natural flavors (soy)" or say "contains soy" at the end.

I'm not saying that the product does not have soy, only that the label will be able to tell you.....

scotty Explorer
scotty
Posted
  • Author

i would have to be celarly labeled like "natural flavors (soy)" or say "contains soy" at the end.

thats what i thought. whatever, i don't think it is going to work. i thought it was the sea salt at first. i tell this much--it sure "feels" like i been soyed

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