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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.

New Here - Need A Little Advice.
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3 posts in this topic

Hi there,

It's my first post here, and I may not even be welcome or belong! Apologies if this is the case. :-)

First, a little medical history! I'm female, in my late 30s, and have had an "interesting" variety of medical issues in the last few years. These include two episodes of severe acute pancreatitis (no reason found), a few episodes of gastritis and oesophagitis including one serious enough to land me in hospital, and so on. After several unpleasant attacks of abdominal pain, sudden urgent need for the loo (sorry if that's TMI!) and some mucus/blood, I had a colonoscopy a few months ago which showed minor inflammation and led to a diagnosis of severe IBS, but nothing more worrying. Incidentally, I also have fibromyalgia and have suffered from depression at various points.

After the diagnosis, I started to pay more attention to which foods seemed to affect me. I noticed most obviously that if I have toast or other bread-type stuff for breakfast, I get lower abdominal cramps, stomach ache and at least mild diarrhoea, all starting within an hour of eating, followed by exhaustion. I love and even crave bread, so this isn't good!

This morning I decided to do the BioCard test, which came up negative. Given that it purports to be 93% accurate, I'm therefore presuming that I don't have Coeliac Disease - I'd been a little concerned because autoimmune problems (Crohn's Disease, hypothyroid disease) run in my family.

So I suppose the question, after all that long-windedness (sorry!) is: where do I go from here? Given that I'm not Coeliac, so that's not what's causing my pain, bloating and other unsavoury digestive symptoms, I'm not sure what to do best to help myself. I don't believe in cutting out food groups without established cause (I hate fad diets, and so on), but I can't afford the York test, don't wish to come across as a hypochondriac to my doctors and can't go on feeling so gut-sore.

Any advice or information gratefully received!

Gill x

EDIT: Given the stuff I just read casting some doubt on the York tests, maybe it's a good thing I didn't have the money, anyway! ;-)

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Hi there,

It's my first post here, and I may not even be welcome or belong! Apologies if this is the case. :-)

First, a little medical history! I'm female, in my late 30s, and have had an "interesting" variety of medical issues in the last few years. These include two episodes of severe acute pancreatitis (no reason found), a few episodes of gastritis and oesophagitis including one serious enough to land me in hospital, and so on. After several unpleasant attacks of abdominal pain, sudden urgent need for the loo (sorry if that's TMI!) and some mucus/blood, I had a colonoscopy a few months ago which showed minor inflammation and led to a diagnosis of severe IBS, but nothing more worrying. Incidentally, I also have fibromyalgia and have suffered from depression at various points.

After the diagnosis, I started to pay more attention to which foods seemed to affect me. I noticed most obviously that if I have toast or other bread-type stuff for breakfast, I get lower abdominal cramps, stomach ache and at least mild diarrhoea, all starting within an hour of eating, followed by exhaustion. I love and even crave bread, so this isn't good!

This morning I decided to do the BioCard test, which came up negative. Given that it purports to be 93% accurate, I'm therefore presuming that I don't have Coeliac Disease - I'd been a little concerned because autoimmune problems (Crohn's Disease, hypothyroid disease) run in my family.

So I suppose the question, after all that long-windedness (sorry!) is: where do I go from here? Given that I'm not Coeliac, so that's not what's causing my pain, bloating and other unsavoury digestive symptoms, I'm not sure what to do best to help myself. I don't believe in cutting out food groups without established cause (I hate fad diets, and so on), but I can't afford the York test, don't wish to come across as a hypochondriac to my doctors and can't go on feeling so gut-sore.

Any advice or information gratefully received!

Gill x

EDIT: Given the stuff I just read casting some doubt on the York tests, maybe it's a good thing I didn't have the money, anyway! ;-)

That sounds pretty awful. I know you said you don't believe in cutting out food groups with cause, but I think you have a long list of causes. I would strongly consider an elimination diet. I am thinking of trying that myself to see if that helps me. The gluten elimination help tremendously but I still have some issues and it is very common to be sensitive to more than one thing. Two weeks of your life where you have to cut back may be more than worth it if you can figure out your triggers.

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Hi and welcome

Even if it isn't celiacs that is causing you pain, it could be gluten intolerance. That is my official diagnosis after years of being ill (mentally). The physical didn't start until march last year. I went on an elimination diet out of sheer desperation and lo and behold things improved without the gluten, and eventually dairy had to go too.

So much has come into line now I'm not on gluten...psoriasis and eczema seriously in remission, no medication needed for depression/anxiety/insomnia, hormonal problems have settled right down. After taking a gluten challenge to attempt to get diagnosed properly (moment of madness and one I seriously regret now because I still have stomach problems a month later) I realised I don't actually need a formal diagnosis really.....the fact that I feel like I am dying when eating gluten is good enough reason for me to cut it out.

Had someone suggested that to me two years ago, I'm pretty sure I would have been sceptical too, but the proof is in the (gluten free of course) pudding.

For what it's worth, I adored gluteny foods too. Craved them, absolutely, and for a while after going gluten free I thought I would go crazy. But, it does settle down and now I wouldn't trade feeling well for anything. If you have stomach problems, suspect it could be gluten, which you do obviously, then you are doing yourself a huge favour by trying an elimination diet. It is not a fad diet if you improve without gluten.

After all of the problems I had mentally and physically, not one person in the huge amount of medical people I have seen over the last ten years even suggested it could be a food problem until I myself discovered it. Not one. I trust my bodys judgement on this one, because the medical community seems to favour treating symptoms rather than cause.

Good luck, whatever you decide to do...but I would say you have nothing to lose, and everything to gain, if this is the problem. Only one way to find out ;)

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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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