Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

beebs

Recommended Posts

beebs Enthusiast
beebs
Posted

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. 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


chocominties Rookie
chocominties
Posted

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!)

beebs Enthusiast
beebs
Posted
  • Author

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? 

cmc811 Apprentice
cmc811
Posted

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.

africanqueen99 Contributor
africanqueen99
Posted

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.

mommida Enthusiast
mommida
Posted

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.

nvsmom Community Regular
nvsmom
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


greenbeanie Enthusiast
greenbeanie
Posted

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.

MitziG Enthusiast
MitziG
Posted

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.

  • 5 months later...
beebs Enthusiast
beebs
Posted
  • Author

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!

beebs Enthusiast
beebs
Posted
  • Author

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.)

luvs2eat Collaborator
luvs2eat
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Kit Kellison
      - Kit Kellison commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      6

      Oreo Debuts New Gluten-Free Mint Oreo Cookies

      Glutinos are eay better. The filling tastes more like homemade icing and the cookies are crisper. Great dunked in milk.
    2. Scott Adams
      0

      Fluffy Coconut Banana Pancake—Baked, Gluten-Free, and Family-Style

    3. Scott Adams
      0

      Gluten-Free Foods in Mexico: A Study Raises Safety and Labeling Concerns

    4. trents
      - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

      Welcome to the celiac.com community, @Amiah! First of all, you would do well to post your question in one of the appropriate community forums rather than in a blog. It will get more attention that way. Now as to your question, there are some other things that can cause elevated igg antibodies besides celiac disease. Various infections, mostly. For...
    5. Amiah
      1

      Help!!

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,637
    • Most Online (within 30 mins)
      7,748
    CIARAN CONROY
    Newest Member
    CIARAN CONROY
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Concerning GP advice

      By trents · Posted

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Scott Adams · Posted

      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Concerning GP advice

      By cristiana · Posted

      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Concerning GP advice

      By EssexMum · Posted

      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.