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What Do You Think?

Minnie2

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Minnie2 Newbie
Minnie2
Posted

My son Eric has had a history of GI troubles since he was born. He is now

22 months old and still struggling with GERD, bowel problems, sleeping problems, and being under weight.

We just recently saw a Pedi GI. When he met Eric, he almost instantly talked about celiac.

He said "He had the "look" of a celiac child" and the symptoms to correlate, and he didn't think heart burn

was Eric's problem at all. He asked about family history and all that, and

He ordered lot's of blood tests along with a celiac panel.

He also tested his poop for all kinds of things.

Everything came back normal

except he has Low IgA. (Is this related to celiac?)

We just went through all kinds of reflux testing 3 months worth, and even a CT scan of his brain,

just to end up where we were before we even saw the GI.

ANd now he's done. That's it. We have a follow up in October, and that's all.

Thing is my son's symptoms seem to come and go, and there's no correlation

with any certain foods, just sometimes he does really well, and sometimes he doesn't.

I have noticed huge improvements as he grows as well.

Can anyone tell me

if it's unusual for a person that has celiac to have come and go GI symptoms?

and would I see such major improvements with his GERD or would it get worse and worse with this disease?

Thank you

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gf4life Enthusiast
gf4life
Posted
He ordered lot's of blood tests along with a celiac panel.

He also tested his poop for all kinds of things.

Everything came back normal

except he has Low IgA. (Is this related to celiac?)

Was it low serum IgA or low IgA antibodies? The difference is monumental.

If he has low serum IgA, then the Celiac panel is pretty much useless, since it relies on a normal level of IgA for the tests to even work at all. If he has normal serum IgA and low IgA antibodies, then this just means his Celiac Panel was negative. But that does not mean gluten might not be the issue, the Celiac panel isn't very accurate on babies.

celiacgirls Apprentice
celiacgirls
Posted

I don't know much about the testing but my daughter was tested several times from the time she was 1 until she was about 7. All of the blood and poop tests they did were negative. She said she felt better on the gluten free diet but we were never sure about it and didn't make her be strict and didn't even always do it. When I had her tested by Enterolab, she was positive. Now that she is strict about it, there is definitely a difference. I would encourage you to try the diet and see what happens.

Minnie2 Newbie
Minnie2
Posted
  • Author
Was it low serum IgA or low IgA antibodies? The difference is monumental.

I don't know. Low IgA was all I was told, and that this made him more susceptible to infection.

I'm supposed to tell doctors so they treat any infections or problems that could lead to infection

more aggressively.

I still haven't received my copies of all the test results. I'm going to work on that in the upcoming week.

All this testing was supposed to give me answers. I'm more confused now than I ever was before.

Thanks for the replies.

TCA Contributor
TCA
Posted

My son went through testing for 3 years and we got now conclusive results. I finally did a diet trial starting in january and the difference was AMAZING. The tests are highly inconclusive for kids under 5. I recommend doing a diet trial for 3 mos. and see if he doesn't improve. If he doesn't after a strictly gluten free diet for taht long, then gluten probably isn't the issue. It's a relatively easy way to test him yourself and it got definitive results for us. If you need help with the diet, feel free to PM me. I have a list of foods my son eats. Good luck and I hope he feels better soon.

Chako Apprentice
Chako
Posted

Hi Minnie! ;)

I am still researching all this myself and have found overwhelmingly that the testing is very unreliable for under 5 or in some cases you hear under 7 years of age. My middle son has undergone the celiac panel 2 times now and both times clear and no malabsorption issues seem evident, yet he has had chronic diarrhea for nearly 3 years and only tests with a chronically high SED rate.

We have been directed to look into fructose malabsorption and so far it is the ONLY thing in nearly 3 years which has made a difference for him. We are investigating that further and look to see the GI again in Sept to discuss celiac, EE, etc. again.

Our GI said she suspected celiac with my middle guy and when I told her he did not "fit the look" since he is tall and very slendar she said that she sees overweight kids and tall kids with it too. The general look is not necessarily the whole picture.

Sorry I can not help you much here as I am still learning too.

Minnie2 Newbie
Minnie2
Posted
  • Author
Our GI said she suspected celiac with my middle guy and when I told her he did not "fit the look" since he is tall and very slendar she said that she sees overweight kids and tall kids with it too. The general look is not necessarily the whole picture.

Sorry I can not help you much here as I am still learning too.

I don't know Leigh.

I just want my little guy to feel good. Not just for a few days at a time, all the time.

I'm glad you're seeing results with the fructose thing. I sure was excited for you when I looked it up and saw everything that fit the picture with your little guy.

I had no idea that your tests came back without conformation of malabsorption too. I just assumed.

Maybe I'll take the plunge and try gluten free. I honestly don't know what to do anymore, but I'm starting to agree with the GI that GERD isn't actually his problem, and definitely a secondary thing to something else that's an even bigger problem.

LOL so funny all his life I have been battling his constipation, and now I can't seem to firm up his poop at all.

Well, I always wanted to know what it was like to have Eric poop. LOL I got my wish, too bad I can't take it back. I really thought his bloat would go away if he wasn't constipated all the time. I was wrong:(

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Guest nini
Guest nini
Posted

my daughter's test results were negative at 3 years... but since I had been recently dx'ed with Celiac myself, it was the logical suspect. With the support of her pediatrician we did a gluten free trial and OMG! all of her symptoms went away within 3 weeks! I am not kidding you! She was a totally different child within just a few weeks and if she is accidentally exposed to gluten it is OBVIOUS! You have nothing to lose and everything to gain by trying the diet. It is helpful to get the pediatrician on board with you that you want to try the gluten-free diet, so when they see the miraculous improvement they cannot deny it! My daughter's pediatrician was amazed that even after negative test results from the GI and the GI dr. saying it was "just IBS" that she responded so incredibly well to the gluten-free diet. Her chart says "gluten intolerance" but she told me "we know it's Celiac"...

I have a newbie kit on my website that you can download. Just click on the link in my signature and scroll to the bottom of the page, there you will find the Newbie Survival Kit available for download. It's a zip file, but I've also put the individual files up too if you have problems with opening the zip. Feel free to pm me and ask me any questions about my daughters favorite foods and suggestions about making the diet work for a small child.

If you (the parents) have not been tested yet, you should, that might give you a more accurate picture of what is going on. I would recommend Enterolab as it seems to be more sensitive than the traditional blood testing.

gf4life Enthusiast
gf4life
Posted

It sounds like low serum IgA, which is an immune deficiency. You can read more about it at the following links.

The problem with that is that it makes dianosing Celiac Disease very difficult, since the current tests are based on levels of antibodies using the IgA in your blood stream. If a person has low IgA, then the numbers would be off and would most likely always test a false negative.

Open Original Shared Link

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Minnie2 Newbie
Minnie2
Posted
  • Author

Thanks for clearing that up for me Mariann.

all the IgA IgG, IgM, etc stuff is so confusing.

The links were helpful

I will definitely be bringing up all of this at Eric's next GI appointment.

I have a strong feeling he won't have any problems with Eric trying the diet,

and actually diagnosing him through elimination of gluten.

He was strongly convinced that Eric had a problem with gluten.

To tell you the truth I was very surprised when it came back negative

even though I already knew that testing wasn't as accurate with babies.

The GI even said to expect inconclusive results and even if it came back neg it didn't mean

celiac would be ruled out completely.

Same with the allergy testing.

I was also surprised that his blood work showed no signs of malnutrition.

It was nice to hear, but at the same time very confusing to hear.

I'm very intimidated by the diet, but even more afraid that it won't work.

and I just don't want to put him through anymore testing.

I want this never ending enigma to be over

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