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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Malabsorption, Blood And Mucus
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6 posts in this topic

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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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.

Edited by GFreeMO
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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.

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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.

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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....

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.Would it be worth getting my thyroid tested?

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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