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It's official Crohn's AND Celiac

I have been living in limbo for years not knowing for sure if I had both. My GI told me it was possible it was just the Celiac and the Crohn's was misdiagnosed and we wouldn't know unless I had another flare. Well, I have been having a pretty rough time and the Dr just confirmed it was a Crohn's flare and started me on 40mg of Prednisone- so question answered.

I am nervous because the symptoms I have now are the same as when i was first diagnosed in 2005- which led to a resection due to abscess. I have read on this forum that Prednisone can act quickly, which is good news to me. I am a little nervous about the side effects but trying to remain optimistic.

I now know having both Celiac and Crohn's is not that uncommon. Anyone else out there with both who can share their story? My big question is can an accidental glutening cause a Crohn's flare- like a double whammy?

Thanks to all who have given me advice on my last several posts. It has been so helpful.
 

kiny

Well-known member
Still waiting on my celiac blood test, will take few more days (lab said they need a week for it)

I think it's possible, celiac -> breaks down barrier -> inflammation from pathogen -> barrier breaks down more through inflammation -> bacteria enter -> viscious circle

I think it's good you know now, you can now do something that might help you more.
 
That is what I am afraid of, I am already very careful about avoiding gluten but it is impossible to avoid cross contamination if you eat outside your home. But to never eat in a restaurant or let a friend cook you dinner is also impossible to me. But if a glutening means more than just the immediate Celiac reaction and can contribute to a serious Crohn's flare- YIKES!

Kiny, Celiac panels usually do take a little longer to get back than regular blood work. Fingers crossed for you.
 
I couldn't be more frustrated.

So the doc called in an Rx for prednisone to treat this as a Crohn's flare on Friday. Today I saw him in office. He said- "it does make sense to treat this as a Crohn's flare, but I am not sure if it is Crohn's." Despite an original Crohn's diagnosis based off a surgical pathology result and classic Crohn's symptoms he is still not sure?!? He said it might be that I have IBS in addition to Celiac and/or Crohn's. Dang, my bowel hates me or should I say my body hates my bowel.

I don't understand why he wants to call this anything but Crohn's. I asked him about maintenance meds for Crohn's once this clears up and he said no, that if I had recurrent flares then we could look at that. If a month of yellow D with undigested foods (even on low-res diet), mucous and abdominal pain might not be a flare- what is he going to consider a flare?

So he kept me on the prednisone course 40 mg for one week and taper 10mg each week after. He said if it comes back after the prednisone then it is probably IBS. From everything I have read on this forum symptoms often come back as the pred tapers- but that is b/c the taper is too fast or the inflammation hasn't healed. He also gave me an IBS medication Donnatal which he said would help with the pain and D. When I asked him when he wanted me to follow up either for the flare or regular care if this does clear up, he said "you can if you want to but no need to subject you to unneeded appointments." Wow! I was speechless. I am already looking for a new doctor and have an appt but not until October. I really don't understand why he is so resistant to diagnose, first Celiac and now Crohn's. I left almost in tears (well at least the tears didn't fall until I got to the car) I felt so unheard and confused. :ybatty:
 

kiny

Well-known member
Ack. IBS is closely related to crohn, and many with crohn have celiac (well around 18% apparently). UC is apparently something completely different and it's easy to rule out UC with biopsy but it's not easy to rule out IBS and celiac or intestinal tuberculosis apparently.

I think it's better safe than sorry really.

(lab is calling me on friday for celiac diagnostic results, and some other checks like vitamins / amino acids I asked for)
 
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