Questions about child's possible CD diagnosis

[sfj]

Hello, this is my first time posting on this forum. My six-year old son was referred to a GI specialist who told us he may have CD. We are waiting on blood work to be followed by MRE and possibly endoscopy.

I am wondering if it's common for a child with CD to present with HIGH fevers and without diarrhea or bloody stools and without inflammation showing on blood work. Everything I've read suggests low fevers are common and that diarrhea is a common symptom. My son's fevers have been frequent (often once a month) and typically 103-105.

Over the last two years, he has had recurring high fevers, abdominal pain, joint pain, frequent cough/gagging, vomiting and has fallen off his growth curve. We just switched pediatricians, as his former doctor was not concerned about my son's frequent illness. He has seen a pediatric rheumatologist, pediatric GI specialist, and he will be seeing an immunologist as well.

My son has had multiple food allergies and sensitivities since infancy. He is allergic to peanuts, and he is sensitive to gluten/wheat, dairy, soy, brown rice, coconut, and pineapple. I have been suspecting Celiac Disease and am wondering if he is reacting to oats (which are apparently similar enough in protein composition that some Celiacs react to even GF oats), but the GI specialists says that since he has been almost completely gluten-free for years it should not be causing problems now. (The blood test for Celiac obviously came back negative since he has no gluten in his system.)

My son has had genetic testing for periodic fever syndrome, and it was negative. He has had lots of blood work done, and everything has been within range, except Vitamin D was slightly low and WBC was slightly low during an illness episode.

Does any of this sound like it could be CD, or are we possibly barking up the wrong tree? Any thoughts would be appreciated. Thank you!

 

[DJW]

Hi and welcome.
I'm sorry I don't have much in the way of answers. We have a fantastic group of knowledgeable parents here. I'm sure they will be along soon.
Sending you both my support.

 

[CrohnsKidMom]

Welcome to the forum, but sorry your son is so sick. These could definitely be symptoms of CD, but likely of many other things as well. My son was dx'd at age 8. His symptoms were abdominal pain-increasing after eating, mouth ulcers, fatigue, constipation, anemia, weight loss, and yes, fevers. He had daily fevers, starting out low grade in the morning, but increasing to up to 103 by evening. Physical exam, bloodwork, stool testing, imaging (MRE), and scopes with biopsies, are generally used to arrive at a CD dx. Keep us posted on how your son is doing. Good luck!

 

[Farmwife]

Welcome but sorry to hear about your child's illness.

I have a 6 year old myself.
She was dx at 3.
if I've learned anything is kids do not always got into a box with ibd.
My Grace also never showed in her labs, no diarrhea and not much blood.

However the food allergy things along with gagging makes me think of eoe.
Had anyone mention egid's before?
It's where Eosinophilic cells attack the GI track. Eoe attacks the esophagus. Food allergies are one of the known causes for egid's.

 

[Mehita]

Have you done a fecal calprotectin test?

 

[sfj]

Thank you for your replies! I am not familiar with EOE or Egid's, so I will look into those. My son has not had a fecal calprotectin test. I will ask the GI doctor about this, as I would much prefer non-invasive testing initially before we go to the endoscopy.

 

[theresad]

I'm so sorry to hear about your son. I'm afraid it's hard for me to give you any insight on the symptoms because my son presented in a pretty straightforward way (unrelenting diarrhea, weight loss, anemia, etc.).

The lab work and the MRE will be able to give you a much better indication of the problem. And the fecal calprotein test in addition to helping with the DX is always a fun mother/son bonding moment

I know how hard it is to stay patient while you wait for tests and results, etc. All I can say is hang in there and don't worry about invasive testing until you're there. Sending support your way. Keep us posted.

 

[Mehita]

Any updates?

 

[Caitlin84]

I rarely present in a typical way and that was totally true as a child as well. It can be very frustrating for parents and providers. Hang in there and let us know how things are going.

 

[sfj]

Just a quick update. My son's blood work came back normal, no signs of inflammation or infection, so the doctor backed down from the CD diagnosis. However, she still wants the MRE. We are holding off on it until we can catch up on paying medical bills (our last blood work bill was $700 after insurance!) and until my son sees an immunologist as well. Thank you! Will post updates as we go forward.

 

[Mr chicken]

Glad the bloodwork was normal
Ds is another kiddo with normal bloodwork and no diarrhea

 

[crohnsinct]

Glad the bloodwork is normal. How is he feeling? The reason ask is because sometimes (certainly not always...it is actually the exception rather than the rule) IBD inflammation will not show in the blood results. My daughter is another one who has normal blood levels even with active inflammation.

If he is feeling well and looks well then I would be inclined to accept the normal results. However, if he is still not feeling well, I would push for the fecal calprotectin test. This test is specific to the GI tract and generally very good at detecting inflammation and also much less likely to give you misleading good results than the blood tests (although it has happened in rare case). It is usually covered by insurance when used as a diagnostic tool and should result in a minimal co pay.

 

[kimmidwife]

Glad you are seeing an immunologist please keep us posted even if it turns out to be something g else. We have another parent on here whose daughter ended up with an immune disorder that has a secondary IBD component.

 

[sfj]

Thank you for the responses! I appreciate them so much. We have a GI appointment tomorrow, and I will ask about the fecal calprotectin test. That is, assuming we are able to go. My son spike a fever of up to 104.8 yesterday, and it has been anywhere from normal to 103 today. He vomited once and has had dizziness and lots of tingling in the extremities and a headache. As his fever came down, he started hearing voices shouting at him. Aside from the tingling and voices, this is a typical fever episode for him. No runny nose or cough or congestion. I am currently also exploring the possibility of Lyme Disease or another tick-borne illness, as all his symptoms align with Lyme Disease. I will try to post updates as we find out more. Thank you again.

 

[kimmidwife]

I was going to suggest Lyme and would also suggest looking into PANDAS.

 

[Maya142]

I know you said he's been tested for periodic fever syndrome, but he tested for TRAPS specifically?

http://www.rheumatology.org/I-Am-A/...eceptor-Associated-Periodic-Syndrome-Juvenile

I'm guessing systemic juvenile idiopathic arthritis was also ruled out? Generally blood work is not normal in SJIA but I suppose anything is possible. I do know some kids with systemic JIA who have had a lot of GI issues and fevers as well as of course, joint problems.

There's also Familial Mediterranean Fever and CAPS. These are all quite rare I believe but worth looking into, if you haven't already.

http://www.rheumatology.org/I-Am-A/...ditions/Familial-Mediterranean-Fever-Juvenile

http://www.rheumatology.org/I-Am-A/...iated-Autoinflammatory-Syndrome-CAPS-Juvenile

Good luck! Hope you can get him to the GI tomorrow.

 

[Mr chicken]

Last thing to look at would be bechets ..
It mimics crohns and can cause high fevers and neuro things as well
http://www.behcets.com/site/c.8oIJJRPsGcISF/b.9196317/k.904C/Behcets_Disease.htm

I know of a kiddo with just Gi stuff/fevers and neuro stuff who was dx .