Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

Unknown diagnosis


Wed, June 10, 2015 9:20 PM


My 6 year old son has been having digestive issues for a while now. I took him to the Dr. who ran 4 stool tests, 2 of the 4 tests were taken while he had symptoms - both of which indicated increasing higher levels (100 and 1071) which reflected the severity of his symptoms.  3rd test was taken while there were no symptoms and was 38.  However, due to the highest number we were referred to a pediatric gastroenterologist.  Without looking at his normal level, or really delving into his history she suggested a dual procedure of endoscopy and colonoscopy and stressed that we get it asap.  For a number of reason, including her poor bedside manner, I'm getting a second opinion. In the meantime, I eliminated dairy from his diet.  After 2 months dairy and symptom free I gave him a full dairy day.  He was fine that evening, but 24 hours he had pain & diarrhea.  24 hours after that he got a fever with diarrhea and body aches. The diarrhea has continued, but today, day 5 after consuming diary he has begun throwing up. I know that the Dr.'s are concerned, looking at his calprotectin levels, that he may have one of the IBD ailments.  I am unsure, and the specialist was so challenging to talk to that I walked away with more questions than not. I realize that the endoscopy and colonoscopy are perhaps the fastest way to a diagnosis (?) but I don't know and my primary care physician is not familiar with this either.  I certainly don't want my son to have to go through the procedures if they are not a) conclusive and b) 100% necessary - but how do I know?
Can dairy cause such a violent, long lasting effect?
Does this sound like Crohns/Colitis?
What is the normal calprotectin levels of Crohns/Colitis patient?
What can I give him to reduce the stomach pain?
What are they looking for in the biopsy during endoscopy & colonoscopy?  And, is this factor there when there are no symptoms?


 

 

FPO thogmara
Joined Jun 10, 2015

Tue, August 11, 2015 5:11 PM

 Reply posted for jenna313.

that is possibly colitis; I can't have dairy or I can't do literally anything bc I'm sick and in pain & in bed all day long. It's very frustrating. The colonoscopy will have pictures of the obvious and that's how they discovered my colitis. Some people with crohns have a reaction to dairy as well. I swear it is possible to be in pain for a long time after. I have been in pain for a week from it. Don't think it's a game bc he can get way more sick quickly without support and help and even then if he's blessed, he can still need surgery one day. Please keep calm bc I say this not to scare you but to be real and honest with you. My parents don't support me like I need and I've been unemployed /not in school fully/ dropped out several times and am 24 & rely on loved ones. Please just ask what they need. I wouldn't bring junk food in the house bc it's tempting and those foods are triggering. Steam every veggie, no skins/seeds/red meats/high fat Keep it bland just incase it's colitis. I do chicken/turkey/eggs for protein Steamed carrots/ zucchini/ squash/ green beans/ mashed potatoes /asparagus Fruits: cantaloupe/ blueberries/ mangos/pears/ honey dew... Softer things bc he's hurting and prob doesn't have a normal appetite and you don't want to worsen this I promise. Stay away from skins. And the dairy; just cut him off. Lactaid products can even aggravate my symptoms. Idk about the levels for a UC patient but try googling information you're looking to know.

FPO 7
Joined Aug 11, 2015

Sat, June 27, 2015 8:02 PM

 Reply posted for jenna313.

I just want to add too that our GI specialist had tested him for dairy, gluten and all sorts of food allergies at first as I thought for sure he had an intolerance to either lactose or gluten. So there is a blood test that can indicate. I'm glad your getting a second opinion because you want a specialist that will make you and your child comfortable during this trying time! Best of luck to you and your little one

FPO jenna313
Joined Jun 2, 2015

Sat, June 27, 2015 10:29 AM

 Reply posted for thogmara.

Hi I am new here myself. My 11 year old son had very similar symptoms. He did have the colonoscopy/endoscopy procedure two weeks ago. I had the diagnosis of UC before he even woke up from the procedure. I know it's tough to endure- but it is the way to confirm and get a proper diagnosis. They started his treatment and within 24 hours he was feeling better than he has in months. I know we have a long road to travel but at least we have an answer. His pediatrician had me trying all sorts of diet changes before I insisted on being referred to a GI specialist. My son went through the procedure very well. The prep was tough and he did get dehydrated but otherwise no issues with the test. They did biopsies as well in both the upper and lower GI tract and he had no issues with that either. I can answer any questions you may have in hopes to help ease your pain- as a Mom I know how stressful it is to have your child go through this!

FPO jenna313
Joined Jun 2, 2015

Sun, June 21, 2015 7:29 AM

Hi! I'm new to this myself, just had my 8 -year old go thru the examinations. Her calproctin levels where between 500 and 5000, at first the dr thoght it might be an adenoid and wanted to do endoskopi to see if it were that or ibd. But when the high levels reoccured they seemed pritty sure. Several years earlier she had high levels too doe to allergy, but always under a thousand. May I ask what your concern about the endoskopi is? If it is ibd it is urgent to get it diagnosed and treated. All luck to you and your son. /M

FPO mom swe
Joined Jun 21, 2015

Tue, June 16, 2015 9:01 AM

We are sorry to read about the symptoms your son is experiencing and the challenges you are facing in getting a clear diagnosis.
 
It is important to note, IBD can sometimes mimic other gastrointestinal disorders and symptoms may vary widely.  Due to this factor, for some cases it may take some time and repeat testing to arrive at the correct diagnosis.    For further information on diagnostic tools used in inflammatory bowel disease testing you may go to the following link: http://www.ccfa.org/assets/pdfs/diagnosing-and-managing-ibd-1.pdf
 
Based on information provided directly from our website on Crohn’s Disease, which is also relevant for other forms of IBD, “there is no single test that can establish the diagnosis of Crohn’s disease with certainty. To determine the diagnosis, physicians evaluate a combination of information from the patient's history and physical exam. They examine the results of laboratory tests, X-rays, and findings on endoscopy and pathology tests, and exclude other known causes of intestinal inflammation. X-ray tests may include barium studies of the upper and lower GI tract. Endoscopy tests may include flexible sigmoidoscopy and, sometimes, colonoscopy, which allow the doctor to directly examine the colon with a lighted tube that is inserted through the anus. During these tests, biopsies may be obtained. This procedure involves the removal of a small piece of tissue for closer analysis. It is important to make sure that an infection is not causing the patient's symptoms, so one routine test is to examine the stool for harmful organisms.” http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/crohns-diagnosis-testing.html
 
To learn more contact the IBD Help Center at info@ccfa.org.

FPO administrator
Joined Oct 12, 2017

Related Topics

Trying to support my husb...
Author Image jessers
Joined Mar 1, 2022

Hi, My husband is 46 and was diagnosed in 2019 ....

read more

Legal system
Author Image Kimdanon1
Joined Apr 20, 2024

My son has Crohn's and is currently in jail. T....

read more