05-31-2016, 11:07 AM   #1
Join Date: May 2016
Location: California

Hi so my daughter has been having tummy pains and cramps, nausea, trapped wind, gas, dizzyness and vomiting. We went to our gp about it and she sent her to hospital to get some blood tests, they came back and the celiac came back positive but it showed she was animic and low in iron and folic acid, they also said somthing about her liver but i dont think that was important because they havent mentioned it since.

Then we got an hospital appointment with a pediatric and she said it could be ibd because of she was 127cm and is 11 nearly 12 (but her father is small and had the sane problems with height at his age) she is showing signs of puberty so the doctor said it was a good sign.

On the same day she had another blood test because she has cut out gluten when she had her first test with celiac.
The doctor also felt her stomach and said it felt fine. The doctor also gave us an apointment for a abdominal scan just to check for inflamation and she said not to worry because her tummy felt soft so there probobly wont be any inflamation.

About 3 weeks later her blood test results can back and celiac was positive again and everything else was normal ecept from inflamation in the bowel (the doctor was wrong)

Then a week later her abdominal scan was due. They put the jelly on her stomach and said it showed inflamation with we alredy knew and thwy said they would send the results to the pediatric doctor and he would make any more appointments if needed. They think it is ibd but she still needs more tests to know.

The scan results aren't back yet but it has only been a week and a half since she had the scan. I am worrying about the tests she will have to have to diagnose it. I have heard they have to have endoscopy and colonscopys, i gave heard they are very unpleasant and painfull and i sont want my daughter to go through pain

At the moment she is in alot of pain. Usally she has really bad pain that goes away the next day but this pain has been going on for 4 days. Does anyone know anyways to reduce the pain as she hasnt been prescribed with any medication yet.

If you are wondering her symptoms they are a tight feeling from just above her belly button to her colon, frequent stomach cramps, abdominal pain, acheing in her low bowel, diarrhoea (not watery tho just sloppy, sorry tmi), nausea, loss of appetite, dizzyness, headaches somtimes, urge to go to the loo, a lot of smelly trumps, trapped wind, gas, tummy gurgling and popping, somtimes her poo really smells, lots of passing mucus and tiredness.

She also has animea (mentioned earlier) and takes 2 five mls of iron and folic acid in liquid form as she cant swallow tablets. She hasnt been but on any other medications yet because she has not yet been diagnosed but the gp said to take capol for pain relif but that dosnt do anything.

She has also got an anal tear due to constipation which sge has had for a year now and dosnt seem to be healing the doctor gave her some cream for it but it makes the skin thinner so we have stopped putting it on and use sudocream if it is sore.

She dosnt have fever, mouth ulcers or noticable blood in her stool only a bit on the toilet roll sometimes. She somtimes gets little white ichy lumps on her elbows and knees. Sorry for the long post ans i would be pleased if anyone can help or give suggestions. Thank you all
05-31-2016, 11:15 AM   #2
my little penguin
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Join Date: Apr 2012

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Endoscopy and colonscopy are not painful at all
The kiddo is given a sedative typically twilight sleep so they are unconscious the whole time and remember nothing
Ds has had 7 scopes since the age of 7 and he is now 12.

Good luck
DS - -Crohn's -Stelara -mtx
06-01-2016, 02:07 AM   #3
Join Date: May 2016
Location: California
Endoscopy and colonscopy are not painful at all
The kiddo is given a sedative typically twilight sleep so they are unconscious the whole time and remember nothing
Ds has had 7 scopes since the age of 7 and he is now 12.

Good luck
Thank you am glad i wont hurt she hasnt been told to get an endoscopy or colonscopy yet but i think she will because the doctor said they need to do more tests 🙂
06-05-2016, 02:39 PM   #4
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Mehita's Avatar
Join Date: Nov 2011
Location: Minnesota

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My son was dx'd with both Celiac and Crohn's. An endoscopy is the gold standard (in the US) for confirming Celiac, so you might be able to kill multiple birds with one stone, so to speak, if you go ahead with scopes. They can look for blunted villi to validate the Celiac disease diagnosis, but also biopsy for both Crohn's and Celiac.

My son doesn't mind scopes. The worst part is the clean out and having to drink whatever prep they tell you to. She'll be sitting on the toilet for several hours, but after that it's not bad and like MLP said, they are put under and don't remember or feel a thing.

Keep us posted!
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
06-06-2016, 09:02 PM   #5
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CrohnsKidMom's Avatar
Join Date: Mar 2013
Location: (Canada), Nova Scotia

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Sorry to hear you are going through this. Don't fret over the scopes. As mentioned, your child will be sedated and won't mind the procedure too much. The scopes are the best to confirm a diagnosis. My son also has an anal fissure/tear from constipation. It is healed now, but always causes a certain measure of discomfort. Yay for zinc oxide cream! Try to keep your dauhter's stools soft to avoid re-tearing the skin. The other symptoms you mentioned could indicate IBD, but it could be something else. It will be hard to know until scopes are done.
Son diagnosed with Crohn's March 2013, at age 8
06-09-2016, 07:05 AM   #6
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CarolinAlaska's Avatar
Join Date: Jan 2013
Location: North Central, Illinois

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The bumps on the elbows and knees could be dermatitis herpetiformis. DH is celiac of the skin. I would keep a little gluten in his diet until his endoscopy and biopsies and request biopsies if the rash while on gluten also. If you go GF too long before biopsies, you may not see what is going on. Celiac and IBD have a lot of similarities.
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.

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