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I didn't know there was an undiagnosed club!

Hello everyone,

I'm new here to the forums and I posted this in 'Your Story' but I think it fits better here. 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.

I’m 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, he said I don't have Crohn's but wanted to check my blood to be sure 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 (DQA1 Positive, DQB1 Negative, not sure what these mean)
-DQ8: negative (DQA1 Positive, DQB1 Negative, not sure what these mean)

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, no fever, no pain, I did start to experience some cramping though 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 that maybe the gluten caused the ulcers? So I'm trying to a gluten-free diet for about a week now, I do feel much better but am still VERY anxious about possibly 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 Crohn’s? I don’t know. I’m 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.
Hi Cable:

I have small bowel crohn’s but it took a long time for me to get fully diagnosed, which is not uncommon. My blood work is normal except when I am in a major flare (we’re taking unable to eat or drink anything because of severe pain or so anemic there is no iron left in my body). I was diagnosed with celiac disease in 2000 with positive biopsies and blood tests—that was the easy part. Getting a really definitive diagnosis of crohn’s didn’t happen until after my bout with severe anemia (ulcerated and strictured duodenum that was diagnosed as acid related and treated with high dose PPIs which helped resolve the duodenal symptoms but the inflammation sat for years in my jejunum and ileum, leading to my two hospitalizations and final diagnosis. I was treated first with Entocort then 6MP which gave me acute pancreatitis so put back on Entocort for five years too long. My GI retired and my new GI promptly scheduled me for an MRE which showed permanent damage in my terminal ileum but no active inflammation. She took me off the Entocort but I am having an upper endoscopy this week because of a 40 pound weight loss over the last 7 months caused by a total loss of appetite. I watched the videos you posted with interest because I also have hypogammaglobulinemia (my IGA and IGM levels are always way below normal and my IGM levels sometimes plummet as well—usually during a flare).

I think you and your doctor are taking an appropriate conservative approach but it’s important to bear in mind that asymptommatic crohn’s can lead to permanent damage to the intestines as it has in my case. Please let us know what you and your doctors decide to do. I’m following with great interest.
Thanks, Jabee that means a lot, I'll be sure and keep you posted.

As of right now, I don't have any symptoms, I never really did aside from some bloating and some discomfort near my gallbladder (probably due to my biliary dyskinesia). The only reason I even went to the doctor was I put it in my head I needed to get REchecked for cancer due to my father.

All biopsies came back negative for inflammation (stomach, duodenum, colon, ileum) and Crohn's. I have inactive gastritis which pathologically speaking is normal after an H. Pylori infection, which I had back in 2012. I've never experienced any severe pain, always able to eat and drink, blood work has always been normal, never been anemic, I test my CRP every year as part of my yearly blood work and it's never been anything but normal, normal IgA and IgG levels, never experienced cramping, etc.

I guess that is why after all these tests, my GI wants to wait 6 months and repeat everything and see where we're at. I have to say though no more bloating since I went gluten free so that's nice.

If everything is normal, even if the ulcers have healed, I'll stay on him and schedule follow-ups and request tests if necessary in order to stay on top of it.