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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.

Fructose Intolerances -- What Does The Medical Literature Say?
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1 post in this topic

Kareng brought up a good point on a different post -- what exactly does the medical literature say about problems eating fructose for people diagnosed with celiac? Some of us have it, but most don't. Is it a leaky gut thing? Is it a different genetic condition? Is there even a third factor that I can't think of right now that might be causing it?

The question spurred me on to better PubMed keyword searching. I think I ID'd some of the key stuff. It's sparse, though, and a lot of it offers no evidence, but just states it as current medical doctrine. Perhaps I can't find better stuff because I don't have a PubMed subscription and lack basic literacy in reading medical studies? I knew I should have taken BioChem in college, but noooo, I wanted to learn Italian.

Anyway, if anyone thinks they may have a severe issue with fructose, please PM me and I can talk with you offline about the fructose stuff, which has a good body of research behind it and a nice group of folks online who can answer questions on it. There's dietary (DFI or fructose malabsorption) and HFI (the scary one that's genetic and causes liver damage). They're basically analgamous to gluten intolerance vs celiac -- both suck but one's proven to be genetic and is more restrictive.

Here's the stuff connecting them that I could find:

Etiology of nonresponsive celiac disease: results of a systematic approach.

"Additional diagnoses accounting for persistent symptoms included: pancreatic insufficiency, irritable bowel syndrome, bacterial overgrowth, lymphocytic colitis, collagenous colitis, ulcerative jejunitis, T-cell lymphoma, pancreatic cancer, fructose intolerance, protein losing enteropathy, cavitating lymphadenopathy syndrome, and tropical sprue."

(http://www.ncbi.nlm.nih.gov/pubmed/12190170)

The prevalence and causes of chronic diarrhea in patients with celiac sprue treated with a gluten-free diet.

"The causes of diarrhea in 11 patients consenting to this study were microscopic colitis, steatorrhea secondary to exocrine pancreatic insufficiency, dietary lactose or fructose malabsorption, anal sphincter dysfunction causing fecal incontinence, and the irritable bowel syndrome."

via http://listserv.icors.org/scripts/wa-icors.exe?A2=ind0312C&L=CELIAC&F=&S=&P=66360

Celiac (NIH "Gene Review")

"Consultation with an expert dietician to analyze the diet for hidden sources of gluten and to evaluate for lactose or fructose intolerance, which can contribute to poor clinical response to a gluten-free diet...•Assessment for lactose or fructose intolerance is important because these conditions can be responsible for lack of response to the gluten-free diet [Green & Jabri 2003]."

http://www.ncbi.nlm.nih.gov/books/NBK1727/

The Green & Jabri reference is here, but the abstract doesn't help: 30.Green PH, Jabri B. Coeliac disease. Lancet. 2003;362:383–91. [PubMed: 12907013] (http://www.ncbi.nlm.nih.gov/pubmed/12907013)

And two interesting studies (one just a case study) on cooexisting celiac and hereditary fructose intolerance. Yikes! I had thought this was too crazy a hypothesis to be really that likely for me, but it's apparently within the realm of possibilities:

Non responsive celiac disease due to coexisting hereditary fructose intolerance

"An association between these two distinct genetic gastrointestinal disorders is important as treatment failure of celiac disease calls for careful evaluation for hereditary fructose intolerance"

(http://www.ncbi.nlm.nih.gov/pubmed/22461154)

And from the flip side --

Hereditary fructose intolerance and celiac disease: a novel genetic association

"The possibility of an association between these 2 gastrointestinal disorders is important, particularly in the management of HFI patients with persisting symptoms."

(http://www.ncbi.nlm.nih.gov/pubmed/16630753)

Anyone have better research on this than I could find?

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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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