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Could This All Be Celiac?

momoftrev

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momoftrev Newbie
momoftrev
Posted

My 14month old son is undergoing many test due to a battle with failure to thrive. He's had reflux since birth and durations where he won't grow/grow well. He has been on a sensitive/non-allergy formula since birth so they always ruled out celiac...until now. His immune function test were low and inconclusive so they're being done again. The celiac test was a negative but is also being done again due to the above reason, it could be a false result. I now have learned that his gastric emptying scan shows a prolonged digestion. We've just put him on an appetite enhancement medicine and will have to put him on a med to help digestion. Failure to grow, poor digestion, and low immune function (could be a result of poor nutrition), and mild acidocis (also being retested). Test test and more test, very exhausting. Thoughts?

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Ursa Major Collaborator
Ursa Major
Posted

You are right, your son's celiac disease tests were probably false negatives. Those tests are notoriously unreliable in children under six anyway. The best test at your son's age would be to try a gluten-free diet.

His symptoms could definitely all be caused by celiac disease, or a dairy and/or soy intolerance, or a combination of any of those.

After all those tests haven't given you any answers, you may want to take matters into your own hands and do an elimination diet, to find out what is causing him to be ill. If he improves if you take gluten out of his diet, then I would assume that he has celiac disease, no matter what the tests say.

momoftrev Newbie
momoftrev
Posted
  • Author

His dairy/soy were negative. The celiac blood test are being redone and sent to a lab in CA where apparently they get much more specific numbers than most labs. I will do the gluten free diet after the test to see what happens.

B'sgirl Explorer
B'sgirl
Posted

My son had those symptoms as well as others and his blood test came up negative. But I put him on a gluten-free diet anyway. It has been almost two weeks and I have already seen improvement. He isn't so hungry or tired anymore. He is getting away with shorter naps and later bedtimes and doesn't seem to be suffering from it. If I were you I wouldn't rely on the blood tests too heavily. But I guess I have no room to talk since my son has no official diagnosis. :D I'm just going with my gut and it seems to be right.

rinne Apprentice
rinne
Posted

Regardless of the tests, which are unreliable, if you are willing to try the gluten free diet it may be all the diagnosis you need. I appreciate why you want to know but I would not recommend relying on tests, you have only to read the stories of many on this board to see years of misdiagnosis and subsequent cascades of illness related to the lack of accurate testing and information about a gluten free diet.

It may not be celiac but a gluten free diet has been shown to help other conditions such as autism NOT that I am suggesting in any way your child has that.

And welcome, I hope you see some improvements soon. :)

Ursa Major Collaborator
Ursa Major
Posted

You say that the tests for dairy and soy were negative. If those were allergy tests, they mean nothing at all if he is intolerant to them. Allergy testing will NOT pick up intolerances, especially with a delayed reaction.

Meaning, that your son might be intolerant to soy, dairy and gluten, regardless of tests that have been done.

Why wait for the test results to come back? In children as young as your son, the celiac disease tests usually only come back positive if the child is near death already. Do you really want to wait until then?

If he was my child, I would put him on a gluten-free, dairy and soy free diet immediately, to see if it makes a difference. Your doctors had their chance to figure it out. It is time to disregard them and help your poor little guy!

NOBODY can tell you how to feed your son. A diet without gluten, dairy and soy is a healthy diet, and he won't be deprived in the least. He has suffered long enough, isn't it time to do something pro-active to make him well?

Worriedtodeath Enthusiast
Worriedtodeath
Posted

WE started down that road with our baby. FTT, no growth, stomach upset, irratibility, refusing to sleep thru the night, thin arms, frail, tired all the time but won't sleep more than a hour, huge stomach, no butt, saggy wrinkles down her back, doesn't speak more than ma-ma, da-da, etc.

3 drs all agreeing this was a Classic text book case of Celiac - biopsy will be positive beyond a shadow of a doubt

Surprise! According to all the tests, she's perfecty healthy with a very mild lactase deficiency that couldn't cause her problems. Medically whatever is causing her failure to thrive is a complete mystery according to the tests. Meanwhile our ped is scratching her head trying to figure out how to save our child who was very near being hospitilized if I hadn't intervened with a gluten free/milk free/ soy free diet. At a followup at 21 months she had the greatest weight/height gain in over a year and reversed the FTT! And we had been gluten-free/CF only 2 months.

We went off of gluten, then dairy, then soy. Within the first week of gluten-free, her stomach had stopped running off several times a day, a couple of days into dairy free, it was no longer green, and within 2 weeks we had a firm normal stool.

we've been doing this 4 months with absolutely no medical test to "prove" we should be and our daugther has gained 2 inches, 4 lbs, and is speaking a variety of two worded sentences and responds to directions and is NICE! Every symptom and issue has cleared or is very close to normal. Her dairy issue appears to be gone and soy only is an issue if she has soy cheese. (we don't do soy milk)

Our ped's advise is to reintroduce gluten at 2 and see what happens. My answer is no. She's doing great without gluten. I want a healthy baby who is thriving. GLuten free works for us. I really no longer care what the science behind it is.

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momoftrev Newbie
momoftrev
Posted
  • Author
WE started down that road with our baby. FTT, no growth, stomach upset, irratibility, refusing to sleep thru the night, thin arms, frail, tired all the time but won't sleep more than a hour, huge stomach, no butt, saggy wrinkles down her back, doesn't speak more than ma-ma, da-da, etc.

3 drs all agreeing this was a Classic text book case of Celiac - biopsy will be positive beyond a shadow of a doubt

Surprise! According to all the tests, she's perfecty healthy with a very mild lactase deficiency that couldn't cause her problems. Medically whatever is causing her failure to thrive is a complete mystery according to the tests. Meanwhile our ped is scratching her head trying to figure out how to save our child who was very near being hospitilized if I hadn't intervened with a gluten free/milk free/ soy free diet. At a followup at 21 months she had the greatest weight/height gain in over a year and reversed the FTT! And we had been gluten-free/CF only 2 months.

We went off of gluten, then dairy, then soy. Within the first week of gluten-free, her stomach had stopped running off several times a day, a couple of days into dairy free, it was no longer green, and within 2 weeks we had a firm normal stool.

we've been doing this 4 months with absolutely no medical test to "prove" we should be and our daugther has gained 2 inches, 4 lbs, and is speaking a variety of two worded sentences and responds to directions and is NICE! Every symptom and issue has cleared or is very close to normal. Her dairy issue appears to be gone and soy only is an issue if she has soy cheese. (we don't do soy milk)

Our ped's advise is to reintroduce gluten at 2 and see what happens. My answer is no. She's doing great without gluten. I want a healthy baby who is thriving. GLuten free works for us. I really no longer care what the science behind it is.

There are so many possible side effects of celiac ad no one child fits the mold...that's the first thing I've noticed when reading. My son had developed in every way possible normal and had done several things like walking and talking very young. Milestones and behavior and sleeping is not a problem. Doctors always ruled out testing for celiac because of his being dilagnosed FTT before he was even introduced to foods and has always been on a non-allergy causing formula.. Needless to say, he doesn't exhibit many symptoms but a few consistent ones which is why they are now testing. Once the blood work is done I am going to change his diet and see what happens. I'm glad the trial is working for you..anything is worth a shot. Thanks.

momoftrev Newbie
momoftrev
Posted
  • Author
You say that the tests for dairy and soy were negative. If those were allergy tests, they mean nothing at all if he is intolerant to them. Allergy testing will NOT pick up intolerances, especially with a delayed reaction.

Meaning, that your son might be intolerant to soy, dairy and gluten, regardless of tests that have been done.

Why wait for the test results to come back? In children as young as your son, the celiac disease tests usually only come back positive if the child is near death already. Do you really want to wait until then?

If he was my child, I would put him on a gluten-free, dairy and soy free diet immediately, to see if it makes a difference. Your doctors had their chance to figure it out. It is time to disregard them and help your poor little guy!

NOBODY can tell you how to feed your son. A diet without gluten, dairy and soy is a healthy diet, and he won't be deprived in the least. He has suffered long enough, isn't it time to do something pro-active to make him well?

These are some strong comments...wait until he's near death/do something pro-active! I appreciate your feedback. Proactive/motivated and do anything is how I am..just seeking initial information first.

Ursa Major Collaborator
Ursa Major
Posted

What I am saying is, that usually the celiac disease tests in babies and toddlers will only be positive if a child is near death. That is a fact. Since your son isn't so ill that you fear losing him yet, his tests will very likely come back negative.

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