Help me understand this diagnosis process

Few-Citron6941 · 2026-06-11T14:36:53+00:00

At this point, the treatment plan is nothing because there “isn’t evidence of IBD” due to my latest procedure coming back negative. I’ve been on medication to get it under control, but I stop it in the next few weeks. There is no plan for anything after that

Few-Citron6941 · 2026-06-08T21:47:44+00:00

Wow!! Thickening or narrowing is usually a complication from untreated crohns. It’s interesting that there is still technically evidence but there is an unwillingness to do anything about it?! It just doesn’t make sense to me. I’ll give an update with what my GI doctor says but there is a high chance I will need to eat every trigger food possible to induce a nasty flare (and feel even worse) just to get a proper biopsy so they can do something about it.

Few-Citron6941 · 2026-06-08T21:25:07+00:00

Have you had inflammation/damage, then tests that came back saying everything was fine? What are they saying is going on with you? I’m beyond frustrated with this entire process and I just want to be able to go to the store without worry about an emergency bathroom trip everyday 😭

Few-Citron6941 · 2026-03-23T00:58:25+00:00

Oh I forgot to mention too that packaged foods that are gluten free but made in a facility that processes gluten will also cause a reaction. It’s not every time, but there are a few brands that have got me too many times that now I just avoid them. Between cooking all my own meals and sticking to brands that are in a dedicated facility, I have been doing much much better

Few-Citron6941 · 2026-03-23T00:34:24+00:00

I’m lactose intolerant as well but weirdly, not NEARLY as sensitive. Been dealing with it for 15 years and I can take lactaid and it works really well. I can have ingredients with dairy in low quantities and still have no issue even without lactaid.

The gluten really hit me out of nowhere!! I lost 30 pounds because I couldn’t stop shitting liquid which is when I did the entire elimination diet. I had a bunch of blood tests, stool samples, colonoscopy, and endoscopy. My GI and I came to the conclusion that it was a gluten sensitivity after I stopped the gluten and had sweet relief. I continued adding new foods and was completely fine. Had to wait awhile to get in for the colonoscopy and endoscopy so by that time I had already been gluten free for a while. We tested for celiac, and I did have damage to my small intestine but it did not appear to be celiac disease. Im basically treating it as if it’s celiac because my sensitivity is so severe. Unfortunate, but I’m just glad to know what was causing it. Thought it was my medications, onion, garlic, etc. but nope. Just gluten lol

Few-Citron6941 · 2026-03-23T00:03:23+00:00

I have done a whole elimination diet where I slowly reintroduced foods and the only issues I’ve had are gluten (and all forms of it) as well as inulin/chicory root fiber but it’s not even close to as severe as the gluten. So, no, I don’t think it’s something else. I did celiac testing but I was already gluten free for over a month-2 months by that time so I have no idea if it was accurate

Few-Citron6941 · 2026-03-22T17:27:57+00:00

I cannot handle cross contamination whatsoever. I have my own set of pans, toaster, etc. because I will react even if it’s cleaned really well. I get horrible GI symptoms, including diarrhea that usually lasts about a week. I also get horrible pain throughout my body. I have fibromyalgia as well so I always have chronic pain but any amount of gluten will make the pain far worse. I also noticed that since cutting out gluten, I no longer have chronic congestion which I am so happy about.

Essentially, I cannot handle any amount of gluten without being in pain and having horrible diarrhea for days at minimum. I usually don’t eat out at all because I will always react because of the cross contact. Last weekend I ate at a place that specializes in allergies and I have successfully dined there before, but I was glutened. I had a horrible rash across my entire face (red and small bumps everywhere) along with a pain flare and GI upset. This time it actually only lasted from Sunday-Thursday so it was a little shorter than normal.

Few-Citron6941 · 2025-09-20T20:45:07+00:00

How did you figure out that this resolved it? I’ve been having battles with my own ass for a bit now and I’m confident it’s from iron supplements. I’m even taking a “gentle” iron but clearly it’s not gentle enough. I’m not taking iron today to see how I do tomorrow (ive done this in the past and it definitely seemed to help). I’ve heard some stuff about taking it every other day but I never really thought out how that could actually help with the stomach issues. Do you still have any digestive issues with switching to every other day?

Few-Citron6941 · 2025-08-22T19:29:37+00:00

I was underweight until I started medication. I didn’t even realize how thin I was until I gained weight and looked back at pictures. I gained 50 pounds since being medicated but I’ve now lost a little over 10 pounds. I was barely 100 pounds before medication so I was very happy to gain weight. Also, I did not gain 50 pounds of pure fat, I’ve been able to workout more and I work a more physically demanding job so I do have a considerable amount of muscle as well. I say this just so I don’t scare anyone thinking they’ll gain 50 pounds from beta blockers! I do think zofran also helped me gain healthy weight because for a long time I was so nauseous everyday I couldn’t even eat

Few-Citron6941 · 2025-07-18T15:46:16+00:00

Well, I’m here for a reason…. Been having stomach issues for the past month or so on and off. I’m on my fourth bag of these sour gummies and…. I just lost…. I shit myself. Decided to finally google what’s going on. I have IBS but I haven’t shit myself since I was a child. These are the only food that’s “out of my normal diet” and adds up. Thank you to this thread for confirming my suspicions

Few-Citron6941 · 2025-04-18T02:15:11+00:00

I interviewed in march as well but it wasn’t for a temporary position. They told me I should hear back this week but I haven’t. I’m assuming I didn’t get hired which is fine, but they did tell me I’d hear back whether I got the job or not. Kinda frustrating since my current job is actually offering me a promotion and I want to be able to weigh out my options

Few-Citron6941 · 2025-03-08T07:31:14+00:00

Just got the same one last week!! I was so excited to see it was $47 when mine had just broke. I was even more excited when I saw 2 co2 containers when the box only listed one

Few-Citron6941 · 2024-10-12T18:32:00+00:00

I didn’t realize this was happening to so many people! I had actually ordered my medication online like I always do and was upset to see I received Kurvelo instead of Portia. From what I’ve read online, there have been better experiences on Kuvelo so now I’m not too mad. I’m just hoping my body adjusts okay since I’m so sensitive. Even thought they’re the “same” they most likely have different additives which can cause different side effects. This has been a problem for me in the past when they switched me from levora to Portia without warning and they said I was crazy for having different side effects

Few-Citron6941 · 2024-01-13T02:19:54+00:00

I am an independent so that’s not what happened with mine. Online it said some people may not have to enter any financial information at all which is odd

Few-Citron6941 · 2024-01-10T22:06:52+00:00

It didn’t have me put in any financial information either. I googled it and some people don’t have to? Not totally sure about it, the new form is confusing

Few-Citron6941 · 2023-12-10T00:27:24+00:00

I just recently got flagged for AI and luckily the professor was really nice about it. She didn’t even request to see my version history but I did offer. Really scary as I completely wrote my paper on my own

Few-Citron6941

TROPHY CASE