A strange 12 months

[JamesWH]

Good evening all,

Thanks for taking the time to read my post.

I'm a 33 male based in the UK.

I've had 10 months of Ill health that all started in January with abdominal pain and constipation. This turned into 2 months of diarrhea that was so violent I suffered a fissure that's still being treated. It was steatorrhea from what I've since read.

I lost 2 stone in weight and alot of muscle from my thighs, hips and bum.

I'm fortunate enough to have private health care and in no particular order I've had a couple of abdominal cts, Mri of pelvis, colonscopy and a full round bloods.

I've seen a GI and CRS. Awaiting a rheumatology review.

Tests have been fine with the exception of low testosterone and consistently elevated creatine kinase (700). Coeliac blood test I am advised was negative. 

Bowel issues have settled and I've nearly regained all my weight. Interestingly had a bad bout of diarrhea after pasta at weekend.

I'm low left with deep hip and groin pains and a gripping pain in my flank and abdomen under ribs. This gets worse as day goes on. Ultrasound to area has been all clear I'm told. 

Also have weird tingling sensation down my limbs, knees and elbows.

I'm an otherwise healthy chap with no issues before this year. I'm now getting pretty desperate as it seems no-one can get to the bottom of this. On the subject of bottoms, I'm awaiting a lateral internal sphincterotomy after a failed botox. 

I've asked my gi for advice and enquired as to whether an endoscopy may rule coeliac out.

Does my story sound familiar to anyone? This years knocked me back and whilst I'm doing fine now, the worry of this being a cancer caused me to suffer depression earlier in the year. Probably sound like a hypochondriac however fear of unknown Is a horrible thing!

 

 

 

[JamesWH]

18 minutes ago, JamesWH said:

Good evening all,

Thanks for taking the time to read my post.

I'm a 33 male based in the UK.

I've had 10 months of Ill health that all started in January with abdominal pain and constipation. This turned into 2 months of diarrhea that was so violent I suffered a fissure that's still being treated. It was steatorrhea from what I've since read.

I lost 2 stone in weight and alot of muscle from my thighs, hips and bum.

I'm fortunate enough to have private health care and in no particular order I've had a couple of abdominal cts, Mri of pelvis, colonscopy and a full round bloods.

I've seen a GI and CRS. Awaiting a rheumatology review.

Tests have been fine with the exception of low testosterone and consistently elevated creatine kinase (700). Coeliac blood test I am advised was negative. 

Bowel issues have settled and I've nearly regained all my weight. Interestingly had a bad bout of diarrhea after pasta at weekend.

I'm low left with deep hip and groin pains and a gripping pain in my flank and abdomen under ribs. This gets worse as day goes on. Ultrasound to area has been all clear I'm told. 

Also have weird tingling sensation down my limbs, knees and elbows.

I'm an otherwise healthy chap with no issues before this year. I'm now getting pretty desperate as it seems no-one can get to the bottom of this. On the subject of bottoms, I'm awaiting a lateral internal sphincterotomy after a failed botox. 

I've asked my gi for advice and enquired as to whether an endoscopy may rule coeliac out.

Does my story sound familiar to anyone? This years knocked me back and whilst I'm doing fine now, the worry of this being a cancer caused me to suffer depression earlier in the year. Probably sound like a hypochondriac however fear of unknown Is a horrible thing!

 

 

 

Sorry to add, I've had dry hands yo the point of them cracking and bleeding and when I was at my lowest with the weight loss what can only be described as very dry skin on my scrotum. The dry skin has since gone.

Any help would be great as medical professionals not getting me very far in terms of diagnosis.

[trents]

You could have NCGS (Non Celiac Gluten Sensitivity) for which there is currently no test. It is ruled out by eliminating celiac disease. Many of the symptoms are similar between the two. NCGS does not damage the small bowel villi, however, so nothing shows up on the tests for celiac disease. 

You need to have been eating regular amounts of gluten daily prior to the antibody test for a couple of months for the test to be valid, and if you go for an endoscopy/biopsy of the small bowel lining you would need to have been eating regular amounts of gluten daily for at least two weeks. Many people sabotage the testing by cutting back or eliminating gluten before testing and many physicians fail to tell their patients this.

[Scott Adams]

Is there a chance you could share the celiac blood test results? Sometimes a doctor may say they are "negative," when they may be a weak positive, or just under the cut off for celiac disease. Elevated antibodies to gliadin isn't normal for anyone, so the results could provide some clues.