Why are all tests normal? If I don’t ... - Crohn's and Colit...

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Why are all tests normal? If I don’t have Crohn’s then what?

WK1010
WK1010

MRI enterography was normal (not really a surprise, everything is always normal). Does anybody have an idea of what could cause the following?

I’ve been having symptoms for years but all these tests are normal.

It started with mild gas issues, then it progressed to abdominal discomfort and gas when eating and constant tightness / discomfort in abdomen. Then it progressed to having bowel movements and pain after certain foods such as peanuts and basically all nuts, creams, potato chips, corn, butter, fatty foods, cheese, etc and so I avoided those. Then it got even worse to the point where I couldn’t eat much fiber anymore and would eat mostly rice, white bread, chicken, rice milk, no dairy, etc. Then two months ago I got mild headaches and found out I was mildly iron deficient. A few days later I eat pan fried chicken breasts (something I’ve eaten all the time) but experienced porridge like stool with liquid blood on top of it the next day, along with stinging upper left abdominal pain. I had a similar episode two weeks later when eating mayo. I then had another episode without seeing any blood but with the same urgency for bowel movement. Between the episodes I have been waking up with mild headaches. Friday I had a fourth episode after eating a fatty meat dish. I took a nap a while after eating that and woke up with worse headaches than before and stinging abdominal pain and feeling shaky / confused. The pain changes between being a stinging pain, to a throbbing one, to a pressure type feeling in my left ribs. The pain spreads to the right side too and to my flanks but the “source” seems to be the upper left of my abdomen. I felt so sleepy and tired that I took another nap shortly after. Took a bowel movement and may have seen some blood there, not sure but felt shaky and weak afterwards. This was the worst episode in terms of pain and overall feeling. These episodes have lasted anywhere from two to five days. I feel sleepy every time I eat during these episodes. The upper left of my abdomen is painful to touch during this which is not something I have experienced before. Yet all the tests show nothing. It doesn’t make sense to me. Gastroscopy and colonoscopy with biopsies, calprotectin, inflammatory markers and now MRI of small bowel are all normal. Also been tested for small intestinal bacterial overgrowth, parasites, had liver enzymes checked, checked amylase, bilirubin, etc. I don’t understand why my symptoms are getting worse despite being better with my diet. Each year I have to add to the list of foods I can’t eat. None of this makes sense to me. The only thing that has been persistently elevated but without finding a cause (even after seeing a rheumatologist) is rheumatoid factor which is at 624 as I’ve mentioned many times in my previous posts.

I don’t know if this is related but my other major symptom is constantly feeling very ill and tired, like I’ve been drugged, also feeling the need to sleep all the time but without falling asleep, I never feel awake. My conclusion was that these symptoms (the abdominal issues and the tiredness / sleepy issues) were unrelated but I could be wrong. I’m really not sure what to do anymore. It does seem like I’ll have to spend the rest of my days resting and trying to sleep and that I don’t have much of a future but that may just be my pessimism kicking in.

11 Replies
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Have they tested your thyroid by any chance?

WK1010
WK1010 in reply to Viklou

Yes, multiple times.

Viklou
Viklou in reply to WK1010

Have you ever been diagnosed with an IBD at any point. If not it will be put under the almighty umbrella of IBS

Your symptoms are similar to mine but keep putting it down to diverticular disease

My tests also come back normal also

Started taking magnesium tablets, they have really helped with the tiredness xx

I would ask for them to test my thyroid to see if it is underworking, as this can give you many of the symptoms you describe. It may even be two problems, which just go together, which is what makes IBS and IBD so difficult to diagnose. Good luck and stay safe.

Am wondering: have you have been previously diagnosed with an immune dysfunction/connective tissue disorder disease other than Crohns? I ask because, after a lifetime of this sort of thing being tinkered with by gastroenterology, my gastro investigation results + manifestations have quite a lot in common with yours.....I’m also here on forum because my husband has severe early onset crohns with many bowel resections (which finally went into remission a few years ago but could always relapse...so I try to stay up to date/aware p)

but, @ 66 years old, my mouth to exit persistent + progressive GI issues are more now severely progressed/debilitated & I’m further down the line in the gastro diagnostic process, with a provisional diagnosis of “Crohn’s-like enteropathy“ caused by Hypermobile Ehlers Danlos Syndrome + infant onset systemic lupus (+ secondaries inc sjogrens, vasculitis etc) + also childhood onset Primary Immunodeficiency Disease with possible Mast Cell Activation Disorder...

The Proof being that despite primary + secondary + tertiary gastro investigations not discovering a cancer, a twisted bowel & no “clear” evidence Crohn’s or other more recognisable enteropathies, my 🦓- rare disease type of enteropathy manifestations are stubbornly persistent & progressive over 66 years, and definitely respond positively to my long term combined therapy lupus etc + immunodeficiency meds (inc daily steroid prednisolone + the immunosuppressant mycophenolate) as well as prescription long term EEN (Crohns Diet of Elemental nutrition, aka predigested amino acids in the form on a Nutricia E028)

Everything you’re describing is so like my case..inc the chronic fatigue/loss of stamina & resilience... So, yes, get your thyroid tested (thyroid conditions can be autoimmune) and, if you haven’t already, get referral to a rheumatologist expert in connective tissue conditions like Ehlers Danlos, , Psoriatic arthritis, lupus, Sjogrens PN (not just rheumatoid arthritis) )

Also, if you haven’t already, maybe useful to ask your medics how much these sort of issues feature EVEN relatively mildly/moderately in your diagnostic picture so far...in my experience tests often miss the significance that multiple relatively mild/moderate symptoms add up to! (Eg relapsing/remitting gastritis & constipation can be signs of SIBO, even though SIBO Tests are neg)

- Combined constipation & diarrhea slow transit dysmotility including gastroparesis, small intestine bacteria overflow, pseudo obstruction/obstipation

- visceral hypersensitivity to food residue, food fibre, certain high FODMAP foods (Mine has become so severe that for 2 years now I am unable tolerate anything but the lowest residue/fibre foods, eg plain rice cakes, + my E028)

- malabsorption (in my case, this has segued from intestinal insufficiency into intestinal failure...and my E028 is my only source of nutrition, so that’s crucial to keeping me alive)

Hope something in there is useful...apologies for long reply, but getting through the diagnostic process to care that is really helping has been a long hard struggle, and if anything about my ordeal can be useful...I feel it’s all been worthwhile

❤️🍀❤️🍀 Coco

Dewy9698
Dewy9698 in reply to Barnclown

Hello fellow 🦓, I have hEDS too, along with some of the fun gastro stuff that goes along with it. 😊

Barnclown
Barnclown in reply to Dewy9698

Hello...hope you’re managing as ok as poss & have medics who are really helping ❤️🍀

Dewy9698
Dewy9698 in reply to Barnclown

Hi.....thanks for the reply. I'm lucky that I have a fantastic GP, who actually listens to me, that helps so much and I'm eternally grateful to her. Also, fortunate to have an excellent rheumatologist and gastroenterologist on board.

I hope you're as blessed as I am.

😊🌻

Barnclown
Barnclown in reply to Dewy9698

👍👏👏👏👏🌈💫

I feel for you, it must be so frustrating not to be getting answers!

I can produce bowel movements similar to yours. I've diagnosed microscopic colitis, diverticular disease, chronic gastritis/duodenitis, gastroparesis and the obligatory IBS.

I really hope you get some answers soon. 😊

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