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The Curse Of An Early Celiac Dx


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#1 jcmandm

 
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Posted 30 September 2009 - 08:34 AM

My daughter was diagnosed with celiac about 3 months ago. She is 5 years old and really displays none of the symptoms of Celiac.

She was tested for celiac because she has been constipated since birth and it is standard procedure at the clinic we went to to screen for celiac. That was the only reason we visited the ped GI clinic - searching for an answer for her constipation.

She has been on a gluten-free diet for 3 months now and nothing has changed. Still constipated (I say she is constipated - but really she is regular with the help of Miralax, without it she backs up/stools get hard) and we have noticed no other changes in her either....but then again there were no symtoms to notice to begin with!!!!

This makes me doubt that she even has the disease - eventhough I sit here now with her blood and biopsy test results in front of me.

We should count ourselves lucky that the damage done was minimal and real symptoms never had a chance to set in, but more often than not I feel that the dx must be wrong and I am going to cause her to be an outcast when she is an older child/teen for no reason at all!!

I feel like because it was caught by chance so early we are cursed with doubt.
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#2 Ahorsesoul

 
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Posted 30 September 2009 - 09:12 AM

Have you tried adding some beans (as in soup type, kidney, navy, lima, etc) and some prunes to her diet? I'd start with 1/4 cup beans and one prune daily. Increase the prunes to two if it doesn't help after the first week.

And how do you get prunes into a kid who won't eat them dried?

Take a handful of pitted prunes, toss into a pan.
Add 1/2 cup water.
Simmer until the prunes are soft and mushy. Drain slightly, mash them up a little.
Cool.
Mix this into whipped cream, sweetened or unsweetened. May also be mixed with pudding.
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1960s-had symptoms-could have been before but don't remember
1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms
Me, dd and ds diagnosed with Lactose Intolerance
2000-osteopenia
2001-had stroke because of medications I was given
June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months
June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)
May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world

#3 jcmandm

 
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Posted 30 September 2009 - 09:27 AM

Believe me we've tried everything under the sun to keep her regular.

As an infant, yes prunes and karo syrup did the trick.

As a toddler it was off and on a problem that she to the med Colace for as needed.

At 5 now, she eats a pretty good variety of foods, fruits, veggies....but still needs the Miralax to keep her stools soft.

I know there is still some withholding issues in her - the minute her stool starts to get hard/large and difficult to pass she will hold it in as long as possible because she knows it will hurt to push it out.....and you can't convince her that the more she holds it in the more it will hurt.
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#4 elle's mom

 
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Posted 30 September 2009 - 10:57 AM

My daughter was diagnosed with celiac about 3 months ago. She is 5 years old and really displays none of the symptoms of Celiac.

She was tested for celiac because she has been constipated since birth and it is standard procedure at the clinic we went to to screen for celiac. That was the only reason we visited the ped GI clinic - searching for an answer for her constipation.

She has been on a gluten-free diet for 3 months now and nothing has changed. Still constipated (I say she is constipated - but really she is regular with the help of Miralax, without it she backs up/stools get hard) and we have noticed no other changes in her either....but then again there were no symtoms to notice to begin with!!!!

This makes me doubt that she even has the disease - eventhough I sit here now with her blood and biopsy test results in front of me.

We should count ourselves lucky that the damage done was minimal and real symptoms never had a chance to set in, but more often than not I feel that the dx must be wrong and I am going to cause her to be an outcast when she is an older child/teen for no reason at all!!

I feel like because it was caught by chance so early we are cursed with doubt.


It is normal to have your feelings. But the fact of it is, you are probably just in denial :( sorry. There are virtually no false positives when screening for celiac. In fact, if anything, most young children seem to be falsely negative. If she has positive blood results and a positive endoscopy, she is celiac. You will find countless stories all over this forum of parents or individuals who have the opposite problems-they could not get a positive test.

You repeated that you feel she had no symptoms, but the fact that she was/and still is constapated IS her symptom! Three months is too soon for you to expect this to be totally gone. My dd was also constipated, an atypical symptom, but bouts of constipation and diarrhea are common with many celiacs. My dd has been on the diet for 2 and a half years and still battles occasionally with the c. I talked to our dr. about this and he did say the gluten-free diet is typically lower in fiber than a "normal" diet (yet MOST "normal" people don't even get the rec daily amounts of fiber), and we have to make sure she is getting what she needs. We gave her a fiber supplement for a long time, and have slowly began to be able to wean her off of it as we are learning to cook and prepare and present her things with more natural fiber, LOTS of fruits, veggies, especially beans.

The other this I want you to know is this: SHE WILL NOT BE AN OUTCAST unless she feels like one. In order for her to accept her disease and NOT feel like/be an outcast YOU have to accept it and teach her how to adapt. Self confidence is very important. It's a very hard thing to accept/deal with as a parent, believe me I know, but you will get there in time. It has taken me a couple years. You hit the nail on the head when you said "We should count ourselves lucky that the damage done was minimal" but then you veared away when you said "real symptoms never had a chance to set in". She was constipated for five years, that is definately a symptom. I am not trying to be harsh with you, so please don't take this the wrong way. Don't doubt it, just deal with it. There is a great book by Danna Korn (sp?) for parents raising kids with celiac, I can't think of the name right now, but you'll find it easily if you search. She founded ROCK (raising our celiac kids) and is a great inspiration.
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~Jackie (Mom of a gluten & dairy-free home)
Myself: Neg blood tests despite myriad of life-long symptoms. Enterolab testing positive for gluten sensitivity: DQ5DQ5. Currently gluten, dairy, grain, & sugar free and on rotation diet.
5yo dd diagnosed celiac by blood test/biopsy Oct/Nov 2007: DQ2DQ5
7yo dd: neg blood tests, DQ5DQ6
3yo ds: neg blood tests, IgA deficient, DQ5DQ6
21mo dd: DQ2DQ5
DH: Neg blood tests, by deductive reasoning: DQ2DQ6.

#5 mommida

 
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Posted 30 September 2009 - 10:58 AM

3o% of Celiacs can present with constipation, not the horrible "D" and vomitting we complain about most.
Some Celiacs on a gluten free diet suffer from constipation. It's not uncommon and your daughter is not alone.
I know trying to get kids to drink prune juice can be awful. Sometimes you can warm and add other juices to make it a different taste.
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Michigan

#6 Benshell

 
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Posted 30 September 2009 - 11:07 AM

I'm new to celiac as my 6 yr old was just diagnosed with no symptoms too (happened to be checked by her endocrinologist). But when you mentioned she is purposely holds in her stool, it rang some bells. I had the same issue when I was a child (started around age 4 up until I was about 10). At first it was because a large/hard poop hurt to come out. My parents took me to a GI who made me have a shake everynight with mineral oil and senokot to keep me regular (they did it in a chocolate milk shake or an orange sherbert mix). It helped a little, probably would have helped more if I wasn't purposely trying to hold it in. With therapy (psychological counseling) I realized that it wasn't it just hurting, but it was a way of controlling something in my life. At such a young age, I had no control of anything in my life. My therapist advised my parents to let me do some things on my own, give me jobs to do around the house, etc... The more independant I got, the less I held in my poop.

So, just as a suggestion, try the mineral oil/senekot (but check with your dr first as I don't know if this is standard procedure anymore - this was 30 years ago). Also, maybe seek psych therapy as it worked for me, being that it was also a control issue. I know this is common with children and just helped a friend last year who had the same problem with her 5 year old.

Good luck.
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#7 ang1e0251

 
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Posted 01 October 2009 - 06:01 AM

I'm not prone to constipation but I do tend to get it since going gluten-free. It happens to me when I eat grains. I have recently cut most of the grains out of my diet. I have read other posters say they get C'd when they eat dairy. It might be worth a trial to see if cutting out the dairy can help. You also could cut back on the amount of grain she eats if DF doesn't work.

Children aren't left out because of gluten. You can go into any school nurse and ask how many kids in her school have allergies. She probably has a line out of her door every day of kids who are on one kind of medication or another. You raise her as a confidant, well rounded child and she will pick those same type of friends.
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#8 ryebaby0

 
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Posted 01 October 2009 - 03:23 PM

It is a hard thing to be gluten free, the first year. Lots of grieving and second guessing and sadness is okay, and part of the journey. But I wanted you to hear our story, in a nutshell:

When my son was 4, we went from his pedi. to a major med center to dx his constipation issues. They wanted to scope him. We decided against it. When he was 8, he fell ill. In the space of a few months, he was unable to eat, couldn't walk from the pain in his ankles and knees. He was eventually hospitalized for 44 days,(and missed 7 months of school) during which he was fed via IV, his gi tract was so ravaged by the undiagnosed celiac disease. Which, we know now, would have been found by that endoscopy at 4. You are blessed to have discovered it early, really you are. I understand, it doesn't always feel like it.

At 16, just last week at school a girl my son only knows by name brought birthday cake to the high school cafeteria to feed just about everyone within reach. And she produced a bag of gluten-free candy bars, and gave them to my son with a triumphant "for you -- on my birthday, everybody eats". He has been many things, but never outcast because of his health.

Hang in there
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Mom/wife to celiacs dx 12/03 and 12/04


Success is never final and failure never fatal. It's courage that counts -George Tilton




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