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14 Month Old With Concerning Symptoms


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6 replies to this topic

#1 Eschul88

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Posted 09 December 2012 - 07:39 PM

Celiac disease runs loosely in my family so it has always been on the back of my mind for my son, but it is becoming an alarming reality and I would love some input from y'all. My son is 14 months old and has been difficult since day one. We battled severe reflux and gas issues for the first 6 months of his life while he was exclusively breast fed (I was eating gluten). At 6 months, we started only fruits, veggies and oatmeal (all homemade purιes) until he was 9 months along with breastmilk and water only. That was possibly his best period for his tummy. At 9 months we introduced gluten containing convenience foods due to a cross country move and being out of town and that is when we started noticing more problems. His otherwise normal poop became looser and contained sandy/grainy pieces that were nearly impossible to clean off of him unless I gave him a bath. He also began getting chronic diaper rashes (this has always been a problem but it got worse bc it pooping became much more frequent.) He also became extremely fussy and when I would take him to hourly care during my workouts the girls would always say he cried like his tummy was hurting or he was constipated. I wrote it off bc he pooped so often and just thought they were wrong. They weren't. His fussiness was unbearable! I then started him on a mostly gluten free trial diet at 11 months just to see how he did and within 4 days his grainy poop was gone, he was sleeping through the night again rather than waking up with gas pains, and he was pleasant and happy again. We never went entirely gluten free, but strongly reduced it until about a month ago and he seemed to be improving. We would notice if he had a good bit of gluten that he would get exczema on his face, his poop would be grainy and he would get fussy again but nothing else. He got a stomach bug a month ago and the only thing he would eat was bread and crackers so I gave in. We continued a non-gluten free diet for about 3 weeks out of convenience and he was miserable every day. He maintained the worst diaper rash I have ever seen and was always upset and clingy. He also became lactose intolerant after the virus which has thrown us off. My husband and I did not consider gluten as the culprit until about 2 weeks ago but took it out immediately when we did. Everything improved immediately. No more diarrhea (became a symptom), diaper rash, eczema, fussiness. Well, he has had high gluten containing foods twice since then and both times has had terrible bouts of green diarrhea with partially digested food chunks in them. This is new and had never really happened until after the virus. Our issue is that bc he is so young we cannot get an accurate diagnosis. Suggestions? We are military and his pediatrician on post won't even consider gluten intolerance or Celiac bc he "has never heard of someone being born with it and having it this young." I just keep noticing it that the longer that he is off of gluten then the more it hurts him when he is exposed to it. He is such a wonderful, bright and pleasant child off of gluten but when he is on it, his behavior is nearly unmanageable. He is terrible and also miserable and I'm just at a loss. Suggestions?
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#2 tarnalberry

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Posted 09 December 2012 - 09:33 PM

You have a few positive tests described right there in your story.
He does better off it, then bad on it. Then better again off, then bad on. That is *four* positive tests right there.
If he does better off gluten, and you can't get proper testing at this time, why keep him on it?
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#3 Celiac Mindwarp

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Posted 10 December 2012 - 02:25 AM

Your doctor is wrong. It can be hard to diagnose in little ones but it certainly exists.

I hope someone can get you some good research to show your doctor.

That said, I am not sure you will want to put him back on gluten for testing via blood and endoscopy.

Follow your gut, you have seen the difference.
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#4 Ollie's Mom

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Posted 10 December 2012 - 06:25 AM

Where do these doctors come from??? Stories like this make me so angry.

I would take him off gluten if it were me. I did that with my oldest when he was about 9 months, and he had many of the same symptoms as your little guy. I am going to keep my yyoungest totally gluten-free until he is old enough to be able to tell me how he feels.

Luckily you don't need a doctor's permission to change your diet.
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#5 Eschul88

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Posted 10 December 2012 - 08:23 AM

Thanks everyone! I appreciate the input and it makes me feel better to know that y'all can see what I am talking about and consider it important as well. We will be flying home for Christmas and I am nervous that our families will just think I am some crazy first time mom that is going overboard. After noticing that he does significantly better off of gluten I am obviously not going to put him back on it but it honestly does worry me that we do not have a diagnosis bc of school issues in the future. I am sure we will have time to worry about that later but I definitely just want to cover the bases
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#6 Celiac Mindwarp

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Posted 10 December 2012 - 08:42 AM

The genetic testing doesn't require eating gluten. Around 30 per cent of the population have the genes, but it might help later on with making accomodations later, along with response to gluten-free diet. Maybe write down now some very specific details of symptoms before and after to refer to later.

With family and others, they wouldn't say you were being fussy if you told people it was a nut allergy. Stick to your guns and know we will all be standing right behind you :)
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#7 tarnalberry

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Posted 10 December 2012 - 12:21 PM

Worry about school issues when it becomes a problem. A five year old will be able to communicate with you better on how he is feeling!
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA


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