Malabsorption, Blood And Mucus

[Hala]

What a lovely topic title, sorry about that!

Over the past year I have lost a lot of weight and am experiencing many 'IBS-like' symptoms. This includes stomach aches, varying food transit times (often very fast), undigested food in stools, blood/blood clots and mucus in stools.
I was diagnosed with coeliac disease (very positive blood test and endoscopy) in November.

Because my weight-loss was so severe, and because I am still not absorbing the food I eat properly, I now have a PEG feeding tube for overnight liquid feeds and am on supplement drinks, alongside a normal (gluten-free) diet.

I have had many tests done, including blood tests, MRI scans, endoscopies and a flexible sigmoidoscopy. My coelaic bloods are now negative (so I am following the gluten-free diet well).
In hospital I was diagnosed with pancreatic insufficiency and have been taking creon enzymes with food.
The flexible sigmoidoscopy showed some internal hemorrhoids which the doctors assume to be the cause of bloody stools.
The doctors tell me I have 'complex malabsorption problems' along with/because of coeliac disease-induced damage and my pancreas not producing digestive enzymes.

However, even with the enzymes and supplements, I am still experiencing large amounts of mucus and blood clots in my stools and any weight gain is painfully slow. I also feel like my stomach is always upset, despite avoiding gluten stringently. Is this to be expected, considering the diagnoses I have been given, or should I push for further investigation? I'm so frustrated and just want to feel better!

Thanks

[GFreeMO]

I have had a similar experience as far as the symptoms that you have described..the mucus, ibs type things.  I also will run a low grade fever.  In order for me to feel better, I have had to go to whole foods only.  Nothing processed at all.  Meat, fruit, and vegetables.  Nothing else.  If I add one thing back, I have symptoms again.  I think I was having reactions to all grains.

I hope you feel better soon.  Maybe give this a try.

[ravenwoodglass]

Some of us have additional intolerances to foods other than gluten. Many can't tolerate any dairy until well healed.  Some, including myself, react to soy. Most supplement drinks contain one or the other of those two. Maybe try dropping them both for a while to see if it helps. Also be sure to check that any medications, both OTC and script are gluten free.

[Hala]

Thanks guys . I have talked to the dietitians about possible other intolerances, including lactose, soy, egg etc. but they tell me they're reluctant to have me cut out any foods (I'm a vegetarian) until I'm a higher weight, and I can see their point. I really don't like the supplement drinks at all :/. The liquid feed I get through the tube is really good though, it's specifically tailored to my malabsorption problems and packed full of nutrients etc. .....just wish I didn't have to be on it, ha.

[Hala]

Have also been experiencing a twitching thumb and numb fingertips....any ideas? I do have a history of carpel tunnel syndrome but it doesn't usually affect me this way....

[Hala]

.Would it be worth getting my thyroid tested?