Dr orlee guttman

[LauraJ]

We are seeing doctor orlee guttman at bc children's in vancouver canada, but she used to work at toronto sick kids, anyone have any experience with her? We were expecting yo see the doc who deals with EoE, but are being sent to her as she is the IBD docked given her dad has crohns they want to rule out IBD then look at EoE.

We were sent to a celac specialist for dd1 to rule that out for her but he based his diagnosis on statistics not evidence in front of him so our eldest us I diagnosed for anything and dealing with 3 1/2 yrs of gut issues. Hoping dr guttman has an open mind. Finding out what is strong with dd2 might help dd1 but font want to be wasting hours to be told yet again everything is behavioural/normal toddler behaviour. Our OT said liquid coming out your nose when drinking is normal behaviour forba 2 yr old. I wish I could make it happen on command!

 

[Farmwife]

Hi Laura,
Have you meant with an allergist yet? I'm glad your meeting with a GI about IBD.
I hope she doesn't have it but you want to find out.

Grace has EGE and not EoE. They found eos in her track everywhere but her esophagus.
My son's allergist believes my boy has EoE even though he scoped clear of eos but had inflammation in his esophagus.

I hope you have answers soon.
Keep us updated.

 

[LauraJ]

We have met an allergist, she has been tested for all sorts of allergies, her total IgE was really low, but they are still considering the possibility of EoE, or EGE. She is often hoarse which is why the original consideration was EoE. Our eldest actually has always had high IgE counts even when avoiding her allergens completely for a year. But even though DD2 IgE counts aren't high they aren't ruling it out.

Between all the docs we've seen they've decided as a team to investigate
Obstructive vs central sleep apnea plus any of the following
EoE
IBD
Functional abdominal pain
Encopresis
Structural issues
Reflux

She's had sleep studies, and swallowing and feeding studies which showed minor issues with liquids sometimes reflux as high as her nose, and some solids getting as far as where the throat separates between the eosophagus and trachea. Reflux meds just made her worse.

 

[CrohnsKidMom]

Hi LauraJ! I'm at the opposite end of the country, so I don't know anything about your dr. But, anyone coming from Sick Kids must be good... especially with a name like Guttman! I hope you have a good experience with the dr, and get some much needed answers soon. Sending support your way!

 

[LauraJ]

I know, we had a good laugh at the name!

 

[LauraJ]

Well we saw doctor guttman and my faith in the medicl profession has been restored. Someone actually listened! They are pretty sure she has EoE, and want to scope for it. Mentioned her gluten intolerance, and they said as the scope is in march stick her back on gluten and they'll scope for celiac disease too. And IBD isn't off the table just because statistics suggest she is unlikely to hve it. They are going to take samples from her eosophagus, stomach and small intestines, and have a look around as far down as they can go.
Being sent to someone called Guttman was an omen!

 

[Mehita]

Nice

Sounds like you're in good hands.

Google the Celiac thing. I think you can get by with one slice of bread a day or something like that.

 

[LauraJ]

We've been told 1 slice of bread a say for 10-12 weeks. We've been down the celiac route with my eldest, some people have been told as much as 4 slices of bread a day! We are getting gluten into her in many ways whilst giving her sister the gluten free alternative, muffins, cinnamon raisin toast. We have issues getting her to eat and stomach aches- the main reason we were sent to the gastro.

 

[Twiggy930]

Glad to hear that it went well.

 

[Catherine]

Have you heard of the gene test for celiac disease? A negative gene will rule out celiac (99% of the time). A positive test does not confirm celiac disease as up to 25% of the Australian population have least one of the two genes.

 

[LauraJ]

We are in canada, thankfully our province does the gene testing along with other blood work. Our eldest has the genes for celiac so we were told the second probably does too.

 

[Catherine]

Does you eldest have both genes?

 

[LauraJ]

I'm not sure up we were told her genetic test came back positive so not sure whether it's dq2, dq8 or both, I'm going to call her old gastro and find out as I'm curious especially as her uncle has just been diagnosed with celiac disease.