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smpalesh

7 Year Old With Stomach Distress

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I live as if I have celiac's even though I don't have a formal diagnosis.  I had only the one blood test which was negative and I had an endoscopy but they only took 2 samples.  But all of my symptoms, including a rash which looked just like DH, cleared up when I went gluten-free and then dairy-free so I do believe it is actually celiacs.  Unfortunately my daughter is now having problems and I am worried it might be celiacs but the dr won't even look at that as a possibility bc he says I don't have it.  When I told him about her symptoms he just said that it is functional abdominal pain, without doing any sort of assessment.  We are going back again on September 10 and I am going to insist that he try and figure out what is going on.  She is 7.5 yrs old and for the last 4 month she's been getting increasingly more frequent stomach aches, some diarrhea, she says she is regurgitating in her mouth, she is more fatigued, cranky, just feeling blah.  This kid LOVES school and she keeps missing school due to her stomach aches.  This summer she even had to miss some days of camp and she was so upset.  The dr was trying to tell us that she must be anxious about school or something but I know that's not true.  Plus it has been getting progressively worse, even over the summer.  What can I do to at least get the dr to try and help my daughter in some way?  Maybe it isn't celiacs, maybe it's lactose intolerance or something completely different, but I just want some help for her.

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Keep asking! Or demanding. Or switch doctors? Or there are labs that will test off of samples you gather at home (I know absolutely nothing about this but I know there are people that got diagnosed that way on here).

 

It took us 6 months and several rounds with the the doctor before anything was done with my kiddo and it took ages to get in to see the pediatric GI doc so we ended up driving 3 hours to go see her so we could see her a month and a half earlier than we could get in by us. :/ Just to turn around and have to do it again for the biopsy.

 

Keep fighting. You know your kid better than they ever will.

I swear if I have one more doctor tell me my kid is nervous or anxious or upset about school...I'm going to knock them out! My son loves school too! Gah! It's so aggravating.

Good luck. Hopefully they'll start listening to you sooner rather than later.

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Yes, push for blood tests. Try to get bothe tTG and DGP testing done, the latter works well in kids.

 

If all tests are negative, and there's no endoscopy, I would make her gluten-free anyways. For every celiac out there, there are about 6 people who have non-celiac gluten intolerance (NCGI) who have all the same symptoms as celiac disease but negative blood tests (no auotantibodies).

 

BTW, approximately 50% of celiacs are lactose intolerant at diagnosis. That sometimes improves over time, and with healing, but you might want to try a lactose free diet for her as well.

 

Good luck! I hope you find answers.

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I live as if I have celiac's even though I don't have a formal diagnosis.  I had only the one blood test which was negative and I had an endoscopy but they only took 2 samples.  But all of my symptoms, including a rash which looked just like DH, cleared up when I went gluten-free and then dairy-free so I do believe it is actually celiacs.  Unfortunately my daughter is now having problems and I am worried it might be celiacs but the dr won't even look at that as a possibility bc he says I don't have it.  When I told him about her symptoms he just said that it is functional abdominal pain, without doing any sort of assessment.  We are going back again on September 10 and I am going to insist that he try and figure out what is going on.  She is 7.5 yrs old and for the last 4 month she's been getting increasingly more frequent stomach aches, some diarrhea, she says she is regurgitating in her mouth, she is more fatigued, cranky, just feeling blah.  This kid LOVES school and she keeps missing school due to her stomach aches.  This summer she even had to miss some days of camp and she was so upset.  The dr was trying to tell us that she must be anxious about school or something but I know that's not true.  Plus it has been getting progressively worse, even over the summer.  What can I do to at least get the dr to try and help my daughter in some way?  Maybe it isn't celiacs, maybe it's lactose intolerance or something completely different, but I just want some help for her.

Hi there, as others are saying, please INSIST that blood screening is carried out, and request the HLA gene testing too. My son is now 14 and has been having the same complaints for three years. Even negative blood screening was obviously inconclusive for my son as he now has a positive biopsy result for Coeliac. Trouble is he has now lost so much weight through an eating disorder, since the turn of the year 15 kilos, so his health has severely suffered.

 

GP appointments initially told us my son had "stomach migraines" whatever those are? One even told us not to bother with a hot water bottle on his tummy at night as it wouldn't give him relief from the pain as it was "all in his head".

 

Muppets. I say always trust your instinct and aim to be proved wrong, rather than trusting what the GP's say. They're human and fallible too.

 

Good luck.

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