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06-07-2016, 07:40 AM   #1
Anonymous77
 
Join Date: Jun 2016
Atypical Presentation

Hi everyone,

I'm new to the forum and new to the disease - and took a long time getting to a diagnosis because my symptoms weren't entirely traditional and I was wondering if anyone has some insight into them because they consistently make me wonder if I really do have crohns or if I do but also with something else along for the ride.

Twitching is the main one, just in the arms, hands and legs - worse at night but at its worst you can physically see muscles just under your skin spasming back and forth.

Tingling and numbness across the body but again worse in the hands and legs.

Nausea, especially when moving the head

Absolutely absent memory and concentration, with a general fatigue

Cloudy, off-smelling urine and frequent need to go/ strong thirst



I had some of the typical symptoms occasionally, like bleeding and just prior to being on budesonide: abdominal pain after eating. I also lost about 20kg over year. Many things eased off with treatment but then when i started feeling well enough to exercise again I began drinking oat shakes (i had been avoiding gluten) and the twitching, nausea and bleeding returned.

So does, or did, anyone here suffer with the same sort of things? It would mean a hell of a lot to get some understanding of this all.
06-07-2016, 07:52 AM   #2
ronroush7
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The twitching might have to do with being low on magnesium. I have twitching sometimes. The nausea comes with IBD. Are you consuming gluten again? You could have a gluten intolerance.
06-07-2016, 08:01 AM   #3
Eridon2002
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I get twitching when my vitamin/mineral levels are deficient, this is a common symptom. I definitely get brain fog and fatigue when my Crohn's is active. As for the urine smell and thirst-are you getting enough water? If you are having diarrhea then you need to be drinking a lot of water to replenish the loss.

http://www.everydayhealth.com/news/u...f-dehydration/
06-07-2016, 08:02 AM   #4
Anonymous77
 
Join Date: Jun 2016
I've been taking magnesium supplements with that in mind - I was strict on gluten avoidance prior to the crohns diagnosis and eased off somewhat afterwards in that I wouldn't eat anything that had gluten, but allowed myself things that weren't expressly gluten free. But in the last few days I started having oats again and slowly began to twitch more, more nausea and mild bleeding.

It's far from the 'have gluten = immediate torment' that coeliacs describe which is what confuses me.

I really appreciate the help ronroush
06-07-2016, 08:05 AM   #5
Anonymous77
 
Join Date: Jun 2016
I get twitching when my vitamin/mineral levels are deficient, this is a common symptom. I definitely get brain fog and fatigue when my Crohn's is active. As for the urine smell and thirst-are you getting enough water? If you are having diarrhea then you need to be drinking a lot of water to replenish the loss.

http://www.everydayhealth.com/news/u...f-dehydration/
Hi, I drink water like its running out these days but i have no diarrhea, never really have.

I suspected a fistula but the doctors weren't too interested.
06-07-2016, 08:07 AM   #6
ronroush7
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No problem.

06-07-2016, 08:16 AM   #7
Eridon2002
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Hi, I drink water like its running out these days but i have no diarrhea, never really have.

I suspected a fistula but the doctors weren't too interested.
Are you able to get a second opinion? Sometimes it takes going to multiple doctors to find a decent one.
06-07-2016, 08:43 AM   #8
Anonymous77
 
Join Date: Jun 2016
I can and always intended to, but after a year of being ill before diagnosis I have a hell of a lot of work to catch up on so was putting off more medical shopping around!

It just seems like I have too many complications to even make shopping around sensible - in my mind I have crohns, but gluten is somehow aggravating it, I have a milk allergy that turned up at the same time and I either have a fistula or hyperparathyroidism.

I feel like i would be laughed out of the door as a hypochondriac, especially as I have gone to the doctors for dental problems, digital clubbing and twitching and each time been told to stop worrying. I haven't seen a GP in ages because i want to be taken seriously when I do have to go.
06-07-2016, 08:57 AM   #9
Eridon2002
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I can and always intended to, but after a year of being ill before diagnosis I have a hell of a lot of work to catch up on so was putting off more medical shopping around!

It just seems like I have too many complications to even make shopping around sensible - in my mind I have crohns, but gluten is somehow aggravating it, I have a milk allergy that turned up at the same time and I either have a fistula or hyperparathyroidism.

I feel like i would be laughed out of the door as a hypochondriac, especially as I have gone to the doctors for dental problems, digital clubbing and twitching and each time been told to stop worrying. I haven't seen a GP in ages because i want to be taken seriously when I do have to go.
Sorry to hear, I know that it can be very frustrating. You might try a food diary to see if there are any other potential food allergens you are sensitive to. I use an app called myfitnesspal but there are several free ones out there. I log everything and take notes of how I feel. Sometimes it can take 24-48 hours for a food reaction to arise-this way I can go back in my logs and see what might have triggered it.
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