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Is it Crohns ?

I started this journey in March2021,had all the tests,given budesonide for two months,just finished a calprotectin test( score 252) see the Dr. in a week and maybe put on Remicade. Gastro said originally symptoms might be due to NSAID overuse, did not see granulomas in the test results. A bigger problem has been the apthous ulcers in my mouth. Dr downplays the significance of that symptom. My research says it is an extra intestinal symptom of Crohns. I will find out the next step in my journey on July 1st. Has anyone in this group have any experience with th"IBD coach" Andrew Kornfeld ?
 

my little penguin

Moderator
Staff member
Why would you need an “ibd coach “?
Been dealing with crohns for my child for well over 10 years and that’s a new one .
He was dx at age 7 now almost 18

Non caseating granulomas are the pathologist ‘s gold standard to be able to check the crohns box on the pathology report
Some require others just go by the many signs of inflammation and damage done by crohns in the biopsy sample
Granulomas are only found in 30% of all cases of crohns on biopsy
So not having granulomas found doesn’t mean you don’t have crohns
The Gi takes into account visuals & biopsies on upper abd lower endoscopies .
Also factors in imaging (MRE ) and capsule endoscopy results
Depending on the damage seen they make a diagnosis and treatment plan

Many do not start with biologics as the first line of treatment - due to the fact insurance typically requires the “cheaper “ drugs be tried and proven to fail first
These would be 5-asa (Pentasa etc..) -not recommended as monotherapy for crohns by the Cochran report
And methotrexate or aza (immunosuppressants)
Although they no longer recommend aza ,Imuran or 6-mp due to the increased lymphoma risk .

My kiddo had to go through each drug class and fail multiple drugs before insurance permitted remicade .

He now is on Stelara and methotrexate

Good luck
 

my little penguin

Moderator
Staff member
Forgot about mouth ulcers
They can be reflective of disease going on in the gut ,a sign sweet syndrome or bechets (which can also have gut inflammation ) or just plain mouth ulcers unrelated
They would need to be biopsied to be sure

My kiddo had them a lot
After a few years it was determined his were not related to his Crohn’s disease but he had another disease known as Sweets syndrome .
Just extra bonus
 
re the IBD coach,found him on Facebook.He said he achieved remission after doing conventional drug therapy thru a strict non inflammatory diet and specific supplements. I will find out my treatment plan on Thurs. I appreciate your reply and the knowledgeable comments therein.
 

my little penguin

Moderator
Staff member
Word of caution
Anyone and everyone (including Facebook ,family friends etc..) will provide you with stories of how their cousin’s barber’s sister’s niece cured their crohns by “living a healthy lifestyle “ , cutting out xyz from their diet and /or taking supplements abc

learn the response and repeat it often
“Thank you so much for your concern and helpful information. At this time I will follow my specialists instructions /recommendations “

If you have crohns or any other disease
Best to follow your doctors recommendations
Not the other trying very hard to be helpful folks
Online or in person

good luck
 
Location
San Diego
Word of caution
Anyone and everyone (including Facebook ,family friends etc..) will provide you with stories of how their cousin’s barber’s sister’s niece cured their crohns by “living a healthy lifestyle “ , cutting out xyz from their diet and /or taking supplements abc
Absolutely true. Nearly everybody has a cure story. Unfortunately, nobody (Including us on this website) actually knows how to cure Crohn's, because no cure has been identified yet. And most people out there know next to nothing about Crohn's.
 
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