Confused And Need Advice

[cmc811]

I have a 5 year old son that I think may have celiac disease. Here’s his history:

Born healthy and fairly uneventful infant history other than minor reflux that was treated with Zantac until he was 12 months. At 20 months old his hair started falling out and 2 months later he was officially diagnosed with Alopecia Areata. He was virtually bald for a year and then his hair grew back and he now gets occasional patches of hair loss that come and go.

Since that time a number of symptom have come and gone and I’m start starting to put them all together. They include:

• Complaining of stomach pain periodically
• chronic constipation even though he has daily BM
• Waves of nausea
• Terrible behavioral outbursts
• Flea-bite looking rash that comes and go but always appears in the same spot – lower back and up around his right shoulder/armpit – and is really itchy. Hasn’t been blistery though.
• pale looking with dark circles
• complains of being tired a lot even though he sleeps from 7:30p-6a
• anxious about anything and everything
• new fears/worries
• slow growth – always been on the small side but was following the same curve. Now has only gained 2 lbs in a year and dropped from the 28^th percentile down to the 16^th.
• he used to get frequent canker sores but that seems to not happen as much now
• complains about leg pain on occasion (I’ve always just assumed he was growing)
• low red blood count but normal hemoglobin/hematocrit
• eczema
• asthma
• heart murmurs that a cardiologist said were innocent by listening
• normal iron and other metabolic numbers

I requested a celiac panel and his PCP ordered only the IgA, Serum and tTG, which were both normal. However, I was tested as well and had a weak positive tTG that I’m still waiting for follow up on.

So, what next? His pediatrician doesn’t think anything more needs to be done. She has an answer for all his symptoms individually but isn’t looking at them as a whole. I’m not sure what I should even be pushing for at this point. What other tests (EMA, DGP, etc) should I be persistent about?

[WestCoastGirl]

The circles under the eyes, to me, points to a possible dairy issue too.

 

I would consider a "weak positive" still a positive - I'm not a doctor, but with all those issues plus that positive, it seems like your best way to go is gluten-free.

 

I hope your little boy feels better.   Poor mite.

[cmc811]

Interesting about dairy. He's always had dairy and I've never suspected a problem. I'll have to look into that as well.

 

And just so there is no confusion, the above symptoms are my son's and his test was negative. My test was the positive.

[mommida]

At this point get the refferal to a pediatric gastro. doc. 

 

These symptoms are almost "general" and an endoscopy with biopsy should be done to rule in or out (diagnose) several possible disorders.  (these disorders may be existing with Celiac)

 

Possible disorders that can be diagnosed through the endoscopy with biopsy...

 

H. Ployri infection

parasites

congenital defect

Celiac

Eosinophil disorder (EGID)

 

Even if the full blood testing panel really points to Celiac, it would be best to rule out these other possible disorders that can be along with Celiac.

 

Until further testing it may be helpful to keep a food journal to keep track any possible symptom links. 

[mommida]

My daughter was diagnosed "probable" celiac when she was 16 months old.

when she was 6 all "gluten" symptoms returned but very extreme.  She was vomitting up to 5 times a day on average, dark circles under her eyes, complaints of her whole stomach area hurting, daily headaches, constipation, and her hair was falling out in clumps when she ran her fingers through.  She was diagnosed with Eosinophilic Esophagitis when she was 6.

 

She avoids more food "triggers" and is doing well.  (she is currently 11 and has never been on a feeding tube)