Scope needed for IBD

[lolabelle]

Hello! I am new on here and was looking for some input/advice. My daughter is 4 and we discovered last April she was anemic, since then we have had some other blood work done due to blood in her stool. She has tested positive for Celiac, SED Rate was 37, Fecal Calprotectin was 126. Her pediatric gastroenterologist would like to do and Endoscope/Colonoscopy to checks for IBD and Crohn's. She doesn't have diarrhea, is actually always very constipated. Didn't know if these kind of results were really elevated and if anyone has experience with the scopes. The idea makes me very nervous. Thanks in advance!

 

[crohnsinct]

Hi there. Sorry to hear your little one is having some problems. Blood tests alone are not enough to diagnose IBD. Scopes (upper and lower) are generally the gold standard.

Diarrhea is not a necessity for IBD. As a matter of fact there are quite a few kids on here who presented with constipation.

Upper endoscopy is also the gold standard for a Celiac diagnosis.

The sed rate is elevated but sed rate is not specific to the GI tract so often docs will pull a fecal calprotectin test. FC tests are specific to the GI tract and elevated results provide a stronger indication that IBD should be ruled in or out. However, elevated fc levels can also be due to Celiac (although not always), infection, milk protein allergies etc.

A level of 126 in a 4 year old is not alarming and in our daughters' GI office would possibly get a recheck in 6-8 weeks. Given the strong indication that she has Celiac, I would be inclined to think the FC was more indicative of that.

I do not believe that blood in the stool is typical of Celiac. Paging Mehita who has a son with Celiac for more on that.

Given you most likely have to sedate her for the upper scopes, I would go ahead and let the GI also perform the lower scopes to investigate everything at once. Scopes these days are very safe. The hardest part is the prep.

Good luck!

 

[CrohnsKidMom]

Welcome to the forum, but sorry to hear about your little one's illness. My son only presented with constipation. Crohn's is frustrating. While there are some common symptoms, every case is different. Some people even have normal bloodwork results while they have active disease going on. The scopes are generally what will confirm the disease however. i hope you get to the bottom of your daughters issues soon and get her feeling better.

 

[my little penguin]

Ds was also constipated
Scopes are harder on the parents than the kiddo and typically the time they leave you the Gi is back taking to you in about 30 minutes for an upper and lower .
We tried to avoid scopes like the plague when Ds was little
He had Gi issues since birth but finally at age 7 things were really bad
So constipated he had recurring rectal prolapse
Scope confirmed crohns
Much better to know what your dealing with so you can treat it
And rule out what it isn't so you have a better idea where to go
:hug:

 

[lolabelle]

Thank you all for the feedback! Her scope is scheduled for Jan 8, and I'm definitely the one having the hardest time with it. I'm going to see if her Dr can recheck a few labs too before going forward just to see where we stand.

 

[kimmidwife]

Welcome! Good luck! I hope you get some answers quickly!

 

[CarolinAlaska]

We're here if you need us.

 

[Mehita]

I'm glad you're doing the scopes. My son was dx with Celiac and Crohns at the same time. He was positive on the Celiac blood test, but due to alternating diarrhea and constipation (yes, it's possible!) they wanted to do a colonoscopy along with the endoscopy and that's when they discovered the Crohn's. Biopsies will confirm things for you.

There is a thing called the "honeymoon phase" with Celiac when in the teen years, kids start cheating and eat gluten with no adverse effects so they think they're cured and don't have Celiac anymore BUT, in reality, they do still have it (no cure) and are damaging their small intestine during this phase. If you do the endoscopy and get biopsies, this will save you the headache later if your daughter starts to question her dx.

It's pretty rare for Celiac to cause bloody stools. Maybe from tears around the anus due to constipation and/or diarrhea, but generally not from the disease itself.

Good luck with the scopes. Be sure the read the post just started recently about prepping for scopes. Very helpful!

 

[Farmwife]

Hi and a late welcome. My daughter was dx at 3. She also never had diarrhea but constipation.
Her labs also showed nothing in the was of problems. Scopes were the only way to see what was going on inside.
I hope you get answers soon.
Please keep us updated.
I'll tag in Pilgrim , she also has a young one.

 

[lolabelle]

Thank you! I'll definitely update when I know something. Farmwife, did your daughter have any other symptoms? Right now waiting from Dr for orders to get levels checked one more time.

 

[Farmwife]

Yes she had, mouth sores, joint pains, nausea, abdominal cramps, loss of appetite.......
I'm sure theirs more but I for get.

 

[Pilgrim]

Hi! My daughter was diagnosed at the age of 3. Her sed rate was also around 37 for the months leading up to her scopes. First she was diagnosed as constipated although she had blood in the stool, anemia.It took 6 months from her first GI visit to get the scopes and by then things were worse. In my opinion if you have the option for scopes now you absolutely should do so.
The prep as mentioned above is tough but your daughter will forget all about it eventually. There are good threads here with prep tips.
I hope the scopes are good with no double diagnosis.Celiac is enough of a challenge! If I can get to my PC I will write more later. Lots of hugs.

 

[kiny]

It is the hospitals that diagnose people without doing a colonoscopy that should make people nervous. There are still many diseases that look like crohn's but aren't, intestinal TB, chronic granulomatous disease and foodborne infections (yersiniosis and listeriosis) can not be accurately distinguished from crohn's disease without a colonoscopy. The biopsy can be studied, cultured, stained and frozen. They can all feature transmural inflammation, you can't distinguish between them with just MRI.

 

[Pilgrim]

Just checking in to see if you had scopes? Hope things are going well...