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beebs

Has Anyone Else's Young Child Only Had Chronic Stomach Ache?

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My 3.5 year old complains of stomach aches multiple times a day every day and it has been going on for months, he has had a negative coeliac panel, but is positive DQ2. 

 

Just wondering if anyone else's child has had  just stomach ache and they turned out to be celiac? I have celiac, as does my mother, suspected in my (deceased - Bowel cancer at 45) grandfather and another one of my child is going for his second biopsy in a couple of weeks after the first one came back "borderline" at 18 months old. 

 

Our GP doesn't seem particularly concerned even with our family history. 


HLA DQ8, gluten-free since January 2011

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Can't speak for any children except myself--

 

As a baby I would spit up a lot.  As a young child, this turned into throwing up more than was probably normal (I couldn't burp without throwing up until I was 6).

 

In elementary school I often had a stomachache after eating lunch.  I didn't eat breakfast before school because I never felt well when I ate breakfast either.  

 

Starting around middle school, I would get diarrhea after eating almost anything.  In high school it got worse.  In college I was diagnosed with ulcerative colitis.

 

I was 26 when I found out I couldn't have gluten.  There were a million signs before that, but it was never on anyone's radar.  (Except a friend who suggested it back when I was about 20 and suffering from some weird nutritional deficiencies that we blamed on the colitis.)  And don't even get me started on how my parents just ignored all my pains.  My mom worked in my school, and every day I would tell her I felt sick after lunch.  And every day she blamed it on recess, even when we had indoor recess.  Which doesn't even make sense.

 

So my advice is ... don't be like my parents.  Monitor it, keep track of what he's eating, and keep track of what kinds of symptoms he's having after he eats that.  It could be another food issue.  It could be something worse like colitis or crohn's that hasn't really, uh ... blossomed yet.  And I say that not to scare you, but just based on my own experience.  So I'm glad that you're taking his complaints seriously, and I hope you figure out what's going on.  

 

(By the way, I also have a family history of colitis and colon cancer on both sides, and I know what it's like when people don't think that's relevant.  Frustrating!)

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Can't speak for any children except myself--

 

As a baby I would spit up a lot.  As a young child, this turned into throwing up more than was probably normal (I couldn't burp without throwing up until I was 6).

 

In elementary school I often had a stomachache after eating lunch.  I didn't eat breakfast before school because I never felt well when I ate breakfast either.  

 

Starting around middle school, I would get diarrhea after eating almost anything.  In high school it got worse.  In college I was diagnosed with ulcerative colitis.

 

I was 26 when I found out I couldn't have gluten.  There were a million signs before that, but it was never on anyone's radar.  (Except a friend who suggested it back when I was about 20 and suffering from some weird nutritional deficiencies that we blamed on the colitis.)  And don't even get me started on how my parents just ignored all my pains.  My mom worked in my school, and every day I would tell her I felt sick after lunch.  And every day she blamed it on recess, even when we had indoor recess.  Which doesn't even make sense.

 

So my advice is ... don't be like my parents.  Monitor it, keep track of what he's eating, and keep track of what kinds of symptoms he's having after he eats that.  It could be another food issue.  It could be something worse like colitis or crohn's that hasn't really, uh ... blossomed yet.  And I say that not to scare you, but just based on my own experience.  So I'm glad that you're taking his complaints seriously, and I hope you figure out what's going on.  

 

(By the way, I also have a family history of colitis and colon cancer on both sides, and I know what it's like when people don't think that's relevant.  Frustrating!)

You're story sounds like mine, expect my mother took me to specialist for years and they all thought she was "over involved". But yeah, symptoms as a child, always feeling ill, always vomiting, chronic nose bleeds, ulcers etc. I was only after she as diagnosed at 65 that we started looking at me. Hindsight is amazing isn't it? 


HLA DQ8, gluten-free since January 2011

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We're going through the same thing with our 6 yr old. Constant stomach pain but negative tests so far. He didn't have the DGP ordered initially so we are doing that in the next few days. What tests were included in the panel? Even if your little one isn't IGA deficient it is wise to get the IgG tests as well because some people only show positive on those.


Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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My then 5 yo had constant stomach aches and a negative celiac panel.  Fast forward to 7.5 and a sibling DX (and the same stomach pains) and she received her diagnosis.

 

ETA:

Her original bloodwork  came back negative, but the later panel was in that weird "could be, couldn't be" number range.  We added the bloodwork to the lack of weight gain in over a year, the stomach pains and the sibling DX.


Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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My daughter was diagnosed with "probable" Celiac when she was 15 months old.  She was too ill for the endoscopy with biopsy.  Her Celiac panel had some positives and the genetic test was positive for DQ2 and DQ8.

 

When she was 6 everything got worse again, same type of Celiac symptoms.  She was very good about the gluten free diet, but just getting sicker.  Her "whole" belly hurt, and she was vomiting up to 5 times a day.  (sometimes it was a burp of vomit in her mouth)  She went on to be diagnosed with Eosinophilic Esophagitis which is now being diagnosed more with Celiac.

 

(If the doctor does not order the test, the pathologist does not put the red dye on to the sample~ and the presence of the eosinphils is not detected.  Some damage should be seen in the esophagus such as furrowing, schatzi rings (spelling?), and creamy blotches, and other such damage.


Michigan

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My symptom as a child was stomach aches after every meal.  I remember seeing a doctor about it while stll in elementary school and being told that I was "one of those people who gets a stomach ache every time they eat".  Helpful.  <_< He told me to drink more milk but that made it worse.   :rolleyes:

 

My oldest had a lot of stomach aches too but he tested negative.  I don't trust the tests 100% so he went gluten-free and his stomach aches almost completely disappeared.  I have no idea if he is a celiac but I'll keep him gluten-free  - I don't want to make him ill again just to retest.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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My daughter had stomach aches all the time before diagnosis. She spit up dozens of times a day as a baby too, and eventually had to stop breastfeeding and was put on a super-hypoallergenic formula with no milk derivatives at all (which was also gluten free). That solved the problem until she started solids, then everything went downhill again until she was diagnosed at age 4. She had lots of other symptoms too, though, so that wasn't our only clue. For a long time we thought it was car sickness, though in retospect this makes perfect sense because we often gave her crackers for a snack in the car. Then the stomache aches started happening throughout the day, and he doctor said it was "abdominal migraines" caused by anxiety and insisted that we were worried about nothing! The tummy aches promptly went away after her celiac diagnosis - and she does not get sick in the car anymore, so I doubt she ever had motion sickness.

I also got stomach aches almost every time I ate, as far back as I can remember. They went away once I went strictly gluten free too. My celiac tests were negative, while my daughter's were clear positives.


Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosed by GI with "presumed celiac" based on health history, celiac in family, and resolution of fat malabsorption and many other symptoms on gluten-free diet. Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Negative celiac tests after 15 years gluten-light and then a brief but awful gluten challenge. 

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Yup, my son was strictly belly aches for two years, until it progressed to panic attacks, anxiety and major depression, pre-diabetes, anemia and b12 deficiency. Diagnosis took so long because drs were only looking for the "classical" symptoms. Blood tests aren't the most reliable in toddlers...push for an endoscopy and biopsy if his pain continues much longer.

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My daughter was diagnosed with "probable" Celiac when she was 15 months old.  She was too ill for the endoscopy with biopsy.  Her Celiac panel had some positives and the genetic test was positive for DQ2 and DQ8.

 

When she was 6 everything got worse again, same type of Celiac symptoms.  She was very good about the gluten free diet, but just getting sicker.  Her "whole" belly hurt, and she was vomiting up to 5 times a day.  (sometimes it was a burp of vomit in her mouth)  She went on to be diagnosed with Eosinophilic Esophagitis which is now being diagnosed more with Celiac.

 

(If the doctor does not order the test, the pathologist does not put the red dye on to the sample~ and the presence of the eosinphils is not detected.  Some damage should be seen in the esophagus such as furrowing, schatzi rings (spelling?), and creamy blotches, and other such damage.

 

I have EoE as well! Stupid disease, it really is horrid!


HLA DQ8, gluten-free since January 2011

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So we put him gluten free after the negative bloods, we didn't want to push for a biopsy unless we had a bit more evidence. Belly pains stopped 100% . He has just gone back on gluten for a challenge and yep, belly pains are back with foul stools. I rang the coeliac society, and they said the new test they are working on that would only require 3 days of eating gluten could be 5 years away or more. I don't know if I can watch him in pain for 6 months (until he can get he biopsies done.)


HLA DQ8, gluten-free since January 2011

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My youngest daughter... the one who ended up with the most severe celiac of all of us (me first and then, over time, all 3 of my daughters) used to complain of tummy aches all the time. I used to tell her that if it wasn't flying out of her mouth or I could see it in the toilet... she was off to school. Poor thing probably suffered for all those years.


luvs2eat

Living in the beautiful Ozark mountains in Arkansas

positive blood tests and later, positive biopsy

diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day

Dairy free since July 2010 and NOT happy about it!!

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