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Malabsorption, Blood And Mucus

Hala

By Hala
in Related Issues & Disorders

Recommended Posts

Hala Apprentice
Hala
Posted

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

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GFreeMO Proficient
GFreeMO
Posted

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 Mentor
ravenwoodglass
Posted

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 Apprentice
Hala
Posted
  • Author

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 Apprentice
Hala
Posted
  • Author

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 Apprentice
Hala
Posted
  • Author

.Would it be worth getting my thyroid tested?

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      Anti-endomysial Antibody (EMA) Testing

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    • knitty kitty
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      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
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