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Undiagnosed disease flare?

Ridley

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Ridley Newbie
Ridley
Posted

 

I am 54 years old, diagnosed with Ankylosing Spondylitis 15 years ago (an autoimmune based degenerative arthritis of the skeleton principaly the spine)  and have had depression for many years. I have been ridiculously fatigued for 5+ years and can sleep for hours and hours and never feel refreshed.

My old GP spent a long time testing why I was so fatigued inc anaemia (slight), endoscope examinations of the bowel etc but all pretty much negative.

I have also had excess gas and diarrhea for most of my life which has got progressively worse over the years. It has been common to have explosive diarrhea.

Two weeks ago I either caught a bug or whatever “it” is got very much worse. Terrible diarrhea with signs of malabsorption, many many times a day, not being able to get a nights sleep because of it and have been off work for over a week. In fact the last two nights I have not been able to sleep at all even though the diarrhea has been better at night (2-3 times) and I am exhausted.

My new GP has sent me for Celiac Disease tests and I am awaiting results.

In your opinion could this be Celiac Disease? Can it suddenly get worse and flare like this?

 

 

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GFinDC Veteran
GFinDC
Posted

Hi Ridley,

Yes, it could be celiac disease.  Because celiac disease causes malabsorption of nutrients, it can affect any and every part of the body.  Symptoms can wax and wane, and suddenly get much worse too.

Your doctor testing you for celiac disease is a good thing.  Most people with celiac disease are undiagnosed.  Testing consists of blood tests for antibodies to gliaden, a protein in wheat.  Ask for the full celiac disease panel, which includes more types of antibody tests.  Some people only show positive on one type of antibody.

The second part of celiac testing is an endoscopy to take 4 or more biopsy samples of the beginning part of the small intestine for checking under a microscope.   Please don't stop eating gluten until all testing is completed though.  What you can do is go gluten-lite for now, eating just about a slice of bread each day.  You can also stop all dairy, as it is often hard for untreated celiacs to digest it because of the gut damage.

The best diet for a celiac is whole foods cooked at home by you.  Try to avoid 90% or more of processed foods for a few months at least.

There is a newbie 101 thread in the coping with section with tips.

Welcome to the forum!  I hope you feel better soon. :) 

cyclinglady Grand Master
cyclinglady
Posted

Besides celiac disease make sure other issues like Crohn’s are firmly ruled out.  My niece finally received her Crohn’s diagnosis with a pill camera.  Her damage was out of reach for both scopes.  Just something to consider!  

Ridley Newbie
Ridley
Posted
  • Author

Would an endoscope just taking a look for other stuff not notice the damage? I have had both in the past but not had any biopsies done apart from on the one polyp they found.

GFinDC Veteran
GFinDC
Posted

Hi Ridley,

In some cases the damage is so severe they can see it by eye.  But most of the time they have to use a microscope to identify it.  They classify the gut damage according to the Marsh scale.  The Verywell link below explains the Marsh scale.

Open Original Shared Link

If you have both positive blood antibodies and celiac type gut damage then they start calling you a celiac.

Without taking biopsy samples of the gut lining they can't identify celiac disease.  It doesn't sound like they did that for you previously.

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