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My Son May Have Celiac


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#1 Tinkerszs

 
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Posted 30 March 2004 - 08:05 PM

Warning - - -my post rambles!

I'm new and looking for some info! Thanks!!!!


Went the GI today. They will do a biopsy on the 14th. I'm really worried. His IGG was 91. That seems very high. Is it? No one is giving us much info. He has strange bowel movements. Constipated one day and mushy the next. He is 16 mths old and weighs only 19lbs. He hasn't lost weight, but he hasn't gained much either. He also has reflux so he will be tested for that during the biopsy. Any personal experiences would be wonderful! Thanks for letting be rattle on.
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#2 gf4life

 
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Posted 31 March 2004 - 08:32 AM

Hi Tinkerszs,

Welcome to the board, and don't worry about rambling (which you did not do! You should see some of my posts, they go on almost forever!!) we all need to talk about our issues.

Your son's IgG is pretty high. I am glad they have him scheduled for a biopsy so soon. If the doctors did not tell you (some forget to mention it, others don't think it matters), please do not take your son off gluten until after the biopsy. It could cause a false negative by taking him off gluten products before the biopsy. Okay, that said I can tell you that you are not alone. The best thing for you to do is to read as much as you can and learn about Celiac/gluten intolerance before the biopsy. This will help you be prepared in the event your son tests positive.

Did he test positive on any other blood test other than the IgG? It isn't necessary, but if he tested positive on the IgA tests (gliadin and tissue transglutaminase) then he will very likely be positive for Celiac. Especially with his health history. You are very fortunate to be finding out so early in his life. It will be easier for him to adapt to the diet if he never remembers eating gluten foods. My kids are 9, 7, and 4 and they are having a relatively easy time at adjusting, but they have thier moments where the diet gets frustrating and they feel like they can't eat anything. It helps that I am also on the same diet, so we eat the same, but I can understand their frustration.

Anyway, welcome and have fun reading. Try not to feel too overwhelmed. Gluten-free is not a death sentence, it is quite the opposite. Most of us on the diet are very happy to be able to get healthy without the aid of medication, surgery, hospitalization, etc. It can seem overwhelming at first, but as you get into it, it gets easier.

God bless,
Mariann :)
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#3 CandCfam

 
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Posted 31 March 2004 - 09:30 AM

Hi Tinkerszs,
It's CandCfam from Ovusoft :P (I'm seriously not stalking you - was just looking for info for my DD and ran across your post here ;) ...)
I actually think DD might have Celiac. We've had major issues with her bowels since about the time she weaned and started eating more solids. Mostly constipation issues - but often she'll have mushy poops, but it still hurts her to pass them.
I'm hoping that our ped will listen to me and test her. She has seen a Ped. GI once for the constipation, but she really didnt' listen to all my concerns. We do go back to her on the 14th for a recheck.
I'm praying that it's not Celiac - but will be glad just to get an answer either way.
How did you get your ped to test him initially, or get the Ped GI to test?

GL & I hope you get your DS's problems figured out.

Off to look for more information... see you around ;)
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#4 plantime

 
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Posted 31 March 2004 - 09:58 AM

I'm glad your son is getting tested so quickly. Just do not put on gluten-free diet until after the biopsy. This diet is a real life-saver, literally. Even as expensive as some of the foods are, it is still cheaper than medication and surgery, and we can live relatively normal lives! Since your son is so young, if he is celiac disease, he will not develop a taste for gluten, so he will (I hope) have an easier time. He will definitely have a healthier life! Post any time, we all ramble! Happy reading!
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#5 Tinkerszs

 
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Posted 31 March 2004 - 10:19 AM

Hi CandCfam! The dr ran a whole bunch of blood tests because his bm are so strange. Soft and squishy one day and hard hard the next. I even find undigested food in them sometimes.

When we looked at his results we only found the IGG. My husband is trying to get ahold of the ped to find out about the other numbers. I really felt that the gi didn't explain much.

What was your child's symptoms? I'm trying to compare.

It makes me so angry to have my child have to live a life like this. :( He is our miracle baby and we wanted things to be perfect. Do pregnancy complications have anything to do with this?

How bad is the biopsy? I'm kind of scared. Do any of your children have reflux? Is there anything I should have done when he was younger to avoid this from happening?

How is the research coming? Do you think one day they will be able to eat normally?
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#6 CandCfam

 
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Posted 31 March 2004 - 11:27 AM

Hi again,
DD's symptoms started out with what seemed to be an allergy to milk - she'd have milk, get constipated and get the nastiest diaper rash you've ever laid eyes on.
The constipation continued after taking her off dairy.... but not as bad, because the Ped GI put her on MiraLax. She's now having constipation bad even on the MiraLax. She doesn't eat hardly anything. EXTREMELY picky. She'll eat sausage - but even thing that she used to like, she quit eating. She won't eat fruit... well the last week she's been picking at apple slices - but doesn't really consume much.
Her anal area gets really raw and bleedy when she strains to poop. Currently we are on day 3 of straining -literally ALL DAY - to try to poop. I think the raw rearend is making her hold it in even more.
Some days tho she has really mushy poop, and still screams in pain. 4 days ago she had 3 really mushy poops, and then she got backed up - for no apparent reason, and like I said, on the MiraLax.
So, that's some of what we're dealing with.
I'm sure there are other symptoms that I am forgetting to post - but my mind is mush right now from the stress of it all & from knowing our ped is going to likely blow off my concerns.
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#7 Tinkerszs

 
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Posted 31 March 2004 - 08:05 PM

We spoke to the ped today about his results. The IAGG (?) was 91. But the other test they did was very low. Negative she said. Any ideas on what this could mean?

My husband and I were thinking . . .when he was a baby on formula he had strange poopies. He didn't have any gluten. Could it possibly be something else?
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#8 lauradawn

 
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Posted 01 April 2004 - 01:20 PM

was it the IGG or IGA???? If it's the IGG that can signify many different things.. It's not used alone in determining Celiacs. There are c aouple other tests that go along with it to determine if it could be Celiac or not.

Formula can have gluten in it, as well as if he was nursing at all. If you were eating gluten it would pass through the milk. It is possible there is something else, especially if the test is the IGG, however gluten can be in the formula.
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#9 Tinkerszs

 
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Posted 01 April 2004 - 04:17 PM

IGG was 91 and the IGA was negative.

Caleb was formula fed. He was on Similac Lactose Free.
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#10 lauradawn

 
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Posted 02 April 2004 - 12:19 PM

From my experience I would guess the Dr will say that he is fairly confident it is not celiac. Doesn't mean that's a 100% accurate diagnosis, but if the other tests were negative............

My Dr explained to me that the higher # of IGG can be showing a number of things, such as a leaky gut, or other allergies... For my kids he thinks it is the diary that they are intolerant to.

I dont' completely understand how that works, but I do know from my experiences that the Dr's do not rely very much on a positive IGG alone.
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