Is that Crohn or other disease?

[Aviorrok]

Hi
* You can read my previous topic to understand the full story here

Bowel inflammation when I take steroids, is it Crohn?

Bowel inflammation when I take steroids *Long story* and weird So I’m 26 years old, 2 years ago November 2020 sudden tinnitus ear fullness and hearing loss in my left ear after 4 months right ear joined to the party I met with more than 20 ENT no one have answer, some of them said autoimmune...

crohnsforum.com

So In the last 2 years I’m suffering from hearing loss and hearing fluctuations. When I get steroids my hearing get better but my CRP elevates up to 80.
I’ve had FUO about 1 year with night sweats so I did a bone marrow and the results was normal, so I did a colonoscopy and they found acute colitis, so I did colonoscopy+endoscopy again after 6 months the results was normal but in biopsy from small intestine they found chronic ileitis + granulomas.

Some doctor said it’s Crohn but I don’t think it’s Crohn and I don’t know if it’s related to the hearing loss.
How can I know if it’s Crohn or other disease? Maybe it’s bacteria? (My stool test was normal, also calprotectin normal 5/5 times)
Why steroids elevated my CRP?
So maybe my ileitis it’s not Crohn's? What can it be?
Yersinia? Hidden tuberculosis? Bechet diease?sarcoidosis?
Thank you!

 

[Scipio]

1. Some doctor said it’s Crohn but I don’t think it’s Crohn and I don’t know if it’s related to the hearing loss.
I have not heard of Crohn's inducing hearing loss, but who knows? Crohn's has been shown to produce a lot of extra-intestinal manifestations, so maybe it is inducing inflammation in your ears.

2. How can I know if it’s Crohn or other disease? Maybe it’s bacteria? (My stool test was normal, also calprotectin normal 5/5 times)
A biopsy that showed "chronic ileitis + granulomas" will very likely make most doctors say Crohn's. Those two things together comprise the classic evidence for Crohn's.

3. Why steroids elevated my CRP?
I don't know. The strong anti-inflammatory effect of corticosteroids should decrease inflammation and hence decrease the CRP, not increase it. Which steroid are we talking about?

4. So maybe my ileitis it’s not Crohn's? What can it be?
I don't know. Unless and until we know something better, I suggest you stick with what your doctors are saying.

 

[my little penguin]

Ear Involvement in Inflammatory Bowel Disease: A Review of the Literature | Fousekis | Journal of Clinical Medicine Research

Auto inflammatory diseases can cause a lot of different issues but you need to find a doc who specializes to see if it’s worth a look

Comparison Chart of Systemic Autoinflammatory Diseases Involving Periodic Fevers

The Autoinflammatory Alliance is a non-profit dedicated to increasing awareness, care and treatment for patients with Cryopyrin-Associated Periodic Syndromes, including: NOMID/CINCA, Muckle-Wells (MWS) Familial Cold Autoinflammatory Syndromes (FCAS), and other autoinflammatory diseases.

www.nomidalliance.org

Or it could just be crohns like your docs say
Always good to get a fresh set of eyes or second opinion doc

(Not a doc here just a mom if an ibd kiddo with crohns who also has an auto inflammatory disease (sweets syndrome ) )

 

[Aviorrok]

1. Some doctor said it’s Crohn but I don’t think it’s Crohn and I don’t know if it’s related to the hearing loss.
I have not heard of Crohn's inducing hearing loss, but who knows? Crohn's has been shown to produce a lot of extra-intestinal manifestations, so maybe it is inducing inflammation in your ears.

2. How can I know if it’s Crohn or other disease? Maybe it’s bacteria? (My stool test was normal, also calprotectin normal 5/5 times)
A biopsy that showed "chronic ileitis + granulomas" will very likely make most doctors say Crohn's. Those two things together comprise the classic evidence for Crohn's.

3. Why steroids elevated my CRP?
I don't know. The strong anti-inflammatory effect of corticosteroids should decrease inflammation and hence decrease the CRP, not increase it. Which steroid are we talking about?

4. So maybe my ileitis it’s not Crohn's? What can it be?
I don't know. Unless and until we know something better, I suggest you stick with what your doctors are saying.

Thank you, about steroids I used Prednisone oral 60mg

 

[Aviorrok]

Update
Normal US (small and large intestine) still lower right abdominal pain, bread is the devil for me
Waiting for MRE

 

[Stressedmom]

Update
Normal US (small and large intestine) still lower right abdominal pain, bread is the devil for me
Waiting for MRE

I haven't had the chance to read the linked thread, but you said "bread is the devil for me". What does bread do to you? They tested for Celiac right? If they already tested for Celiac and confirmed you do not have it, have you talked to your doctor about whether it is worth a trial gluten free anyway to see if it helps anything? I think it takes several months of being completely off it it to tell and you do need to do it gradually. Do NOT go off gluten if Celiac has not been tested, because you need to have gluten in your system for the tests (except the genetic test).

 

[Aviorrok]

I haven't had the chance to read the linked thread, but you said "bread is the devil for me". What does bread do to you? They tested for Celiac right? If they already tested for Celiac and confirmed you do not have it, have you talked to your doctor about whether it is worth a trial gluten free anyway to see if it helps anything? I think it takes several months of being completely off it it to tell and you do need to do it gradually. Do NOT go off gluten if Celiac has not been tested, because you need to have gluten in your system for the tests (except the genetic test).

Bread just make me bloating, a lot of gas and weird stool something like diarrhea but not watery if I eat a lot of bread I get sulfur burps .
celiac blood test and biopsy are normal so no celiac
I’m gluten free about 2 weeks and I feel a little bit better not big difference. I will continue to be free gluten in the next 6-8 weeks to see if I will be better

 

[my little penguin]

So keep in mind
If you are gluten free
Toaster etc that previously used for gluten are no go
Watch for cross contamination
On labeling
When ordering out
And when cooking in your own kitchen

 

[Stressedmom]

Bread just make me bloating, a lot of gas and weird stool something like diarrhea but not watery if I eat a lot of bread I get sulfur burps .
celiac blood test and biopsy are normal so no celiac
I’m gluten free about 2 weeks and I feel a little bit better not big difference. I will continue to be free gluten in the next 6-8 weeks to see if I will be better

When our son was a toddler genetic testing did not indicate Celiac, but we tried gluten -free gradually because he had a bloated stomach, horrible smelling and looking BMs, distress after meals with gluten though he was a bread addict and we were desperate. We did it gradually and not sure if he had a virus at the same time or the process of getting off gluten made him sick. Within a few months of being off gluten completely, he had normal looking BMs that did not have a smell that could make you gag. He did not get distressed after meals. The bloated belly disappeared. We didn't have to re-enter GI world again until his teens and now his issues are different, except for one issue from infancy that reared it's ugly head!

I will say you have to be very careful. There are a lot of things that contain "hidden" gluten. I don't recall which websites I used but there were all sorts of tips. Let us know how it goes once you are off gluten for a while! Also, I highly doubt gluten-free will resolve all the issues, but I do hope you find some relief and improvement with some things once you are complete off it.

 

[Aviorrok]

Bread just make me bloating, a lot of gas and weird stool something like diarrhea but not watery if I eat a lot of bread I get sulfur burps .
celiac blood test and biopsy are normal so no celiac
I’m gluten free about 2 weeks and I feel a little bit better not big difference. I will continue to be free gluten in the next 6-8 weeks to see if I will be better

Update still fill the same I will try to add gluten next weekend and see if something will happen
MRE was normal no inflammation no Crohn

 

[Lynda Lynda]

My Aunt Millie has been gluten free for a while now ( her choice, not because of a medical condition.) She feels better with eating no gluten. She eats pretty healthy and reads labels.

 

[Aviorrok]

My Aunt Millie has been gluten free for a while now ( her choice, not because of a medical condition.) She feels better with eating no gluten. She eats pretty healthy and reads labels.

Me too, I feel the same plus minus