Crohn's Disease Forum » Your Story » Newly Diagnosed?


02-07-2019, 10:20 AM   #1
Cable
 
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Location: Miami, Florida
Newly Diagnosed?

Hello everyone,

I'm new here to the forums, I'm hoping to get some benefit by just being around (virtually speaking lol) others that may be going through the same thing.

My story is just beginning I think...I'm still not even 100% sure I have Crohn's, I'm just stuck in this limbo of uncertainty. I'll try to explain everything.

Iím a 30 year old pretty healthy male and back in November of 2018 I felt an odd sensation right below my sternum, I thought I overdid it exercising, it wasn't a cramp so much as it felt kind of muscular I think. I did a lot of Googling and a lot of freaking out, my father died of stomach cancer back in 2012 and basically ever since then anything that happens in my abdominal area scares me half to death, I know it's not completely rational but it is what it is. I've been genetically tested and I don't carry the genes for any hereditary cancers which was nice to hear but anyway back to my current story.

I went to my GI and he thought it was my gallbladder, I was diagnosed with a lazy gallbladder back in 2013, he said it was nothing to worry too much about. I did an endoscopy and colonoscopy in January of 2019 and it showed two small ulcers in the ileum that he said could've been from NSAIDS. The last time I used NSAIDS was on November 21, 2018. I took 800mg, I was a heavy NSAID user, almost everyday due to headaches (which funny enough stopped now that I've stopped drinking coffee, go figure) and not just OTC doses either. I asked him if the ulcers should have by then? He said usually but he wasn't too concerned, he took a biopsy to check for Crohn's.

The biopsy from the ileum and other multiple areas came back negative, which made me happy, but he said I could still have Crohn's so he sent me for blood work and a capsule endoscopy, capsule on a Monday and blood work on a Tuesday.

Sed. Rate, CRP, IgG, IgA, Celiac Panel, etc..

-Sed. Rate: 2 (normal)
-CRP: <0.3 (normal)
-Atypical pANCA: <1:20 (normal)
-IgG: <20.0 (negative)
-IgA: <20.0 (negative)
-DQ2: positive
-DQ8: negative

I am DQ8 negative but DQ2 positive which he said could mean I have a gluten sensitivity.

Now for the capsules results which were done in late January. The ulcers in the ileum seem to have healed but it was a bit irritated and everything else was normal except for "multiple, patchy ulcerations in the proximal jejunum" no, strictures, no granulomas according to the report. When he called he said that only NSAIDS or Crohn's could cause those. When I mentioned again that the last time I had an NSAID was in November of 2018 he said they should've healed and that I PROBABLY have low grade Crohn's and we won't do anything yet, he wants to see me again in 6 months.

This sent me spiraling because I thought I was in the clear when I got the blood results back. I have no Crohn's symptoms, no nausea, no diarrhea, no cramping, no urgency to go, I did start to experience some cramping only after he told me I might have Crohn's so I'm not sure how much is psychosomatic.

I also started to think, the only thing that came back SOMEWHAT conclusive was that I am DQ2 positive which means I could be gluten sensitive. I did some reading and found out that gluten MAY cause jejunal ulcers. My diet has always been pretty gluten heavy, especially during the preps for the colonoscopy and capsule because they told me to me eat light, and a lot of carbs that are easy to digest so I ate A LOT of bread and pasta and etc. I also ate seitan which for those that may not be familiar is pure wheat gluten and it's a meat substitute. All that got me thinking maybe the gluten caused the ulcers? So I'm trying to a gluten free diet for about a week now, I do feel a bit better but am still VERY anxious about possible having Crohn's which sucks because GI symptoms are also caused by anxiety.

I talked to my primary who agreed with my approach and said for us not to rush into anything yet, yes, I may have Crohn's but maybe I don't, he wanted to talk to my GI and find out what he saw and everything and am still waiting to hear back. He also said I desperately need to calm down not only for my well being but to better analyze my symptoms when they aren't exacerbated by anxiety.

Sorry for the long post, that's where I'm at now. Do I have Crohnís? I donít know. Iím not sure what else could cause the ulcers, not sure what's wrong with me, desperately wanting to go back to normal and feel normal again, and also struggling with a lot of anxiety.

Last edited by Cable; 02-07-2019 at 05:13 PM.
02-07-2019, 11:56 AM   #2
SN8888
 
Join Date: Apr 2013

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Keep working with your Dr - I hope you get some answers.

Some people with long-term GI problems, especially in the ileum, can end up with a B12 deficiency. Symptoms can be psychological (anxiety or depression) as well as fatigue and neurological symptoms like tingling/numbness, tremors, pounding heartbeat, etc. It's something that occasionally gets overlooked and can be treated on your own with sublingual (under-the-tongue) B vitamin liquid or tablets or Dr can give B12 shots if necessary.

Just something to keep in mind.
02-07-2019, 12:02 PM   #3
Cable
 
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Join Date: Feb 2019
Location: Miami, Florida
Thanks for commenting, Iím hoping for answers soon too. I get my B12 tested regularly and I take a B12 supplement everyday due to being vegan. Everything is good on that end, so far anyway.
02-07-2019, 12:10 PM   #4
SN8888
 
Join Date: Apr 2013

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I have to be gluten-free, dairy-free, low starch, low fiber. I think it could be difficult to be vegan.
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